CancerCompass message board discussion started by newyorkgirl on 3/12/2008 http://www.cancercompass.com/message-board/message/all,21912,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was diagnosed in April 2007 with this horrible cancer.  At the time of the diagnosis I was 42 years old and the mother of 2 young daughters.  I was horrified of the prognoisis and uncertainty related to CUP.  I am trying to reach out to anyone who has or knows someone that has this cancer.  I initially discovered a lump on the right side of my neck in March 2007.  I visited my MD and she suggested I have an ultrasound.  After the ultrasound, I had a needle biopsy.  To make a long story short, I had another biopsy done wherein tissue was removed and all they could say was it was adenocarcinoma and they did not know where the cancer had originated from.  So I have CUP.  I had many tests performed and CAT and PET scans. In July 2007 I began chemo treatment.  Because of the location of the lymph node in my neck, I was able to feel the node reduce after two chemo treatments.  My oncologist decided she wanted me to do four treatments.  I completed four treatments and did not feel the lump in my neck any longer.  I was then sent for neck/chest/abdomon CAT scans and a PET scan.  The tests indictaed the node was reduced in size by 85% and the PET scan did night show any activity in my neck.  The doctors then decided they wanted to do radiation on my neck.  I had 30 radiation treatments from November-December 2007.  I recently in February 2008, had neck/chest/abdomon CAT scans and nothing else showing.  It does seem like I responded well to the Chemo and Radiation.  I am know scheduled for another follow-up PET scan in May.I guess at this point I feel better than I did one year ago.  I discovered this last March 2007 and here I am one year later March 2008, and things seem a little brighter.  I know the statistics are not so good with this cancer but I guess so far its starting to seem more promising for me.If anyone has any further information -- or if I can help offer any information, please feel free to correspond.Thanks. newyorkgirl Wed, 12 Mar 2008 00:00:00 GMT  On 3/12/2008 newyorkgirl wrote:I was diagnosed in April 2007 with this horrible cancer.  At the time of the diagnosis I was 42 years old and the mother of 2 young daughters.  I was horrified of the prognoisis and uncertainty related to CUP.  I am trying to reach out to anyone who has or knows someone that has this cancer.  I initially discovered a lump on the right side of my neck in March 2007.  I visited my MD and she suggested I have an ultrasound.  After the ultrasound, I had a needle biopsy.  To make a long story short, I had another biopsy done wherein tissue was removed and all they could say was it was adenocarcinoma and they did not know where the cancer had originated from.  So I have CUP.  I had many tests performed and CAT and PET scans. In July 2007 I began chemo treatment.  Because of the location of the lymph node in my neck, I was able to feel the node reduce after two chemo treatments.  My oncologist decided she wanted me to do four treatments.  I completed four treatments and did not feel the lump in my neck any longer.  I was then sent for neck/chest/abdomon CAT scans and a PET scan.  The tests indictaed the node was reduced in size by 85% and the PET scan did night show any activity in my neck.  The doctors then decided they wanted to do radiation on my neck.  I had 30 radiation treatments from November-December 2007.  I recently in February 2008, had neck/chest/abdomon CAT scans and nothing else showing.  It does seem like I responded well to the Chemo and Radiation.  I am know scheduled for another follow-up PET scan in May.I guess at this point I feel better than I did one year ago.  I discovered this last March 2007 and here I am one year later March 2008, and things seem a little brighter.  I know the statistics are not so good with this cancer but I guess so far its starting to seem more promising for me.If anyone has any further information -- or if I can help offer any information, please feel free to correspond.Thanks.God got my attention on Sept 25, 2006. I was diagnosed with "Cancer, Unknown Primary Source". I am now 68 years old and need to explain the fluke that found my cancer, rather than waiting for symptoms. In January, 2006, I had a total hip replacement and rod placed in leg - was in a hospital bed for 5 months, so by the fall of 2006 I decided I needed to catch up on some doctor appointments. One appointment in particular was I had felt a little knot on the back of my head - low in hairline. I wasn’t particularly worried about it being cancer as it was not scabby or an open sore - just a little watery-feeling lump. Went to my Dermatologist and when he felt the lump he said, "Jackie, I don’t have a clue what this is so I am doing a biopsy on it." Two days later I received a personal call from my Dermatologist telling me it was cancer but not skin cancer. He called my Internist immediately, my Internist contacted me and sent me to a local Oncologist. I must tell you this Oncologist was extremely thorough and had completed nearly every test in the book in 1 week. When she met with me she said I had Ademocarcinoma, Unknown Primary source which had metastisized to the liver (4" tumor and liver also surrounded by lesions) and it was "venting" up through this area on the back of my head; also it was not operatable nor curable. She was set that week to start me on Chemo. I simple didn’t understand any of this - it just did not make sense. When I asked what my prognosis was I was told she couldn’t tell me until I had undergone chemo for 4 months. I asked why they could not find the primary source and she said sometimes "it just went poof and disappeared. This confused me that much more - like a bad dream that I couldn’t wake up from. I did some "networking" and went to Lexington to get a 2nd opinion from a highly recommended Oncologist. I absolutely loved this Oncologist and by the time I got to his office I had done much internet research on this type of cancer and went in prepared with questions about prognosis and possible seeking help from clinics that dealt with this type cancer. He spent 2 1/1 hours with my husband and myself - he explained that if the blood supply was denied to the primary site it could disappear but the bad news was it had already moved to my liver. He also explained the reason this type of cancer is so hard to cure is because if it had started in my breast and moved to liver it would still be called breast cancer and would be treated with chemo that had been successful against breast cancer or if from colon and moved it would still be colon cancer and treated with chemo for colon cancer. When they know where the cancer originates they call it that organ’s name and they are much more successful on knowing how to deal with it. (This finally began to make sense to us.)He also told us - going by patients with my type of cancer (and everyone is different) but my life expectancy could be several years with successful chemo and 1 year without successful chemo. He stated the fact that my chance of traditional chemo being successful was 20%. We desperatley needed this information to make an informed decision.He also said to me, "Jackie, you aren’t going to stop with me, are you?" I said "no" I still could not accept that prognosis. At this time he offered to doctor me if I wanted but he also said he knew of Dr. Greco at TN Oncology who did clinical trials and he thought with my positive attitude and personality I would be a good candidate; Dr. Greco was a recognized expert in this type of cancer and he was within 250 miles of my home (which I found out this last year is extremely important.)ONE THING YOU NEED TO ALWAYS KEEP IN MIND - sometimes Clinical trials are not as successful as traditional chemo. Accepting this, my husband and I still decided to consult with Dr. Greco. Nov, 2, 2006, found us in Dr. Greco’s office and after he reviewed all my records he explained the Clinical Trial he would suggest for me. I had a four-inch tumor in my liver and a smaller one in my chest cavity near my heart. Knowing at this point that Dr. Greco is a well-known expert in this type of cancer and also finding the primary source I asked him about doing just that. He said, "Jackie, right now we are fighting Cancer and fighting for your life. We need to hit your body with treatments that not only target the tumors but also with treatment that will kill cancer cells in your body. We won’t know if we have been successful until no new tumors appear - there is no blood test for this cancer. If we operate first, and yes you can live with ½ a liver, and there are still cancer cells in your body they will again mets to the liver." (I also have done research and found out this is why a lot of surgeons feel this type of surgery is not advisable.) Dr. Greco said his hope was that at some time in the future I would be a candidate for surgery but that was down the road. (The MOST IMPORTANT thing right then was to reduce the tumors and also try and kill the cells in my blood.)I enrolled in a one-year Clinical Research Trial with Dr. Greco, Oncologist - TN Oncology, and an expert in this particular type of cancer. November, December, January and February found me on four extremely potent treatments (every three weeks) which targeted and reduced the tumors a slight amount. March - through November, 2007, found me getting one treatment every three weeks of an experimental treatment (Avastin) in trying to cut off the blood supply to the tumors. My treatments were: Taxoll, Carboplatin, Avastin(every 21 days) and 150 mg Erlotrim(tarceva) pill every day. This is referred to as 1 cycle - I was scheduled to have 4 cycles and if tumors had not grown, nor any new tumors I would continue Avastin and Erlotrim pill for a total of 1 year or until the tumors started to grow or new tumors were found.I took the 150 Erlotrim pill approximately 2 weeks in November, 2 weeks in Dec and 2 weeks in January, 2007. I got violently ill each month and finally had to be removed from the pill because it was diagnosed I had a "tarcevia reaction." They even tried lowering the pill to 100 mg but I still couldn’t take it - I had an allergic reaction to it.Every 6 weeks I had a cat scan - during the first 4 cycles the tumors did reduce and I finished the study in Nov, 2007. I really sweated out the year in absolute fear the tumors would progress and then we would have "to do something else."The tumors have remained the same size through my last treatment this past November, 2007.(50% of us in the Study made this goal - I am one of this group.) The doctor stated on Dec 5, 2007 - after cat scans - the tumors are "stable" and he was giving my body a rest until January 30, 2008. If, and when they start to grow (and - short of a miracle they will start to grow) then he says there are "other treatments" and we will deal with that day when it arrives.The doctor told me on Dec 4, 2007 - "Jackie, you have lived a year and that is a miracle" - and - after the last year I have finally learned to "stop and smell the roses." God has been my Co-Pilot through this very difficult year and we are now taking one day at a time and enjoying it to the fullest.I finally converted my tumor measurements to inches so I could understand the progress I have made this past year. The largest tumor in the liver started at 4 inches and is now 3 inches - to give you an idea of my progress. Yes, I lost my hair (it has come back very dark and natural curly); my husband (he is 73) has almost conquered learning the meaning of "care giver" and even though I was desperately ill the first four months, and really not able to do much the last eight months I am dealing with my situation. (I also lost 45 lbs, but I had 45 lbs I could spare.) One reason for becoming a "lab rat" as I refer to myself, is that whether or not I survive this illness - I am sure I will be helping the children growing up with my participation in this research. (While 50% of us finished this study without progression of tumors Dr. Greco said in his last study only 25% finished, so "yes" they are making progress.)I hope my input has not been too long and tedious for you to absorb, I just wanted you to know "I have been there and done that" and I know how  confusing CUP is. My blood tests indicated "activity" in my liver so I go back in 2 week for cat and pet scans to see if tumor is growing. While this thought terrifies me I have also come to realize after my last year how much my body needs to rest and how much I need to build my strength for whatever my next treatment is - whether it is surgery, chemo, radiation or all of the above.Sorry this has been so lengthy but felt it was important to show you the "trip" my CUP has taken me on.  If I can help further please let me know.jackieIn January, 2006, I had a total hip replacement and rod placed in leg - was in a hospital bed for 5 months, so by the fall of 2006 I decided I needed to catch up on some doctor appointments. One appointment in particular was I had felt a little knot on the back of my head - low in hairline. I wasn’t particularly worried about it being cancer as it was not scabby or an open sore - just a little watery-feeling lump. Went to my Dermatologist and when he felt the lump he said, "Jackie, I don’t have a clue what this is so I am doing a biopsy on it." Two days later I received a personal call from my Dermatologist telling me it was cancer but not skin cancer. He called my Internist immediately, my Internist contacted me and sent me to a local Oncologist. I must tell you this Oncologist was extremely thorough and had completed nearly every test in the book in 1 week. When she met with me she said I had Ademocarcinoma, Unknown Primary source which had metastisized to the liver (4" tumor and liver also surrounded by lesions) and it was "venting" up through this area on the back of my head; also it was not operatable nor curable. She was set that week to start me on Chemo. I simple didn’t understand any of this - it just did not make sense. When I asked what my prognosis was I was told she couldn’t tell me until I had undergone chemo for 4 months. I asked why they could not find the primary source and she said sometimes "it just went poof and disappeared. This confused me that much more - like a bad dream that I couldn’t wake up from. I did some "networking" and went to Lexington to get a 2nd opinion from a highly recommended Oncologist. I absolutely loved this Oncologist and by the time I got to his office I had done much internet research on this type of cancer and went in prepared with questions about prognosis and possible seeking help from clinics that dealt with this type cancer. He spent 2 1/1 hours with my husband and myself - he explained that if the blood supply was denied to the primary site it could disappear but the bad news was it had already moved to my liver. He also explained the reason this type of cancer is so hard to cure is because if it had started in my breast and moved to liver it would still be called breast cancer and would be treated with chemo that had been successful against breast cancer or if from colon and moved it would still be colon cancer and treated with chemo for colon cancer. When they know where the cancer originates they call it that organ’s name and they are much more successful on knowing how to deal with it. (This finally began to make sense to us.)He also told us - going by patients with my type of cancer (and everyone is different) but my life expectancy could be several years with successful chemo and 1 year without successful chemo. He stated the fact that my chance of traditional chemo being successful was 20%. We desperatley needed this information to make an informed decision.He also said to me, "Jackie, you aren’t going to stop with me, are you?" I said "no" I still could not accept that prognosis. At this time he offered to doctor me if I wanted but he also said he knew of Dr. Greco at TN Oncology who did clinical trials and he thought with my positive attitude and personality I would be a good candidate; Dr. Greco was a recognized expert in this type of cancer and he was within 250 miles of my home (which I found out this last year is extremely important.)ONE THING YOU NEED TO ALWAYS KEEP IN MIND - sometimes Clinical trials are not as successful as traditional chemo. Accepting this, my husband and I still decided to consult with Dr. Greco. Nov, 2, 2006, found us in Dr. Greco’s office and after he reviewed all my records he explained the Clinical Trial he would suggest for me. I had a four-inch tumor in my liver and a smaller one in my chest cavity near my heart. Knowing at this point that Dr. Greco is a well-known expert in this type of cancer and also finding the primary source I asked him about doing just that. He said, "Jackie, right now we are fighting Cancer and fighting for your life. We need to hit your body with treatments that not only target the tumors but also with treatment that will kill cancer cells in your body. We won’t know if we have been successful until no new tumors appear - there is no blood test for this cancer. If we operate first, and yes you can live with ½ a liver, and there are still cancer cells in your body they will again mets to the liver." (I also have done research and found out this is why a lot of surgeons feel this type of surgery is not advisable.) Dr. Greco said his hope was that at some time in the future I would be a candidate for surgery but that was down the road. (The MOST IMPORTANT thing right then was to reduce the tumors and also try and kill the cells in my blood.)I enrolled in a one-year Clinical Research Trial with Dr. Greco, Oncologist - TN Oncology, and an expert in this particular type of cancer. November, December, January and February found me on four extremely potent treatments (every three weeks) which targeted and reduced the tumors a slight amount. March - through November, 2007, found me getting one treatment every three weeks of an experimental treatment (Avastin) in trying to cut off the blood supply to the tumors. My treatments were: Taxoll, Carboplatin, Avastin(every 21 days) and 150 mg Erlotrim(tarceva) pill every day. This is referred to as 1 cycle - I was scheduled to have 4 cycles and if tumors had not grown, nor any new tumors I would continue Avastin and Erlotrim pill for a total of 1 year or until the tumors started to grow or new tumors were found.I took the 150 Erlotrim pill approximately 2 weeks in November, 2 weeks in Dec and 2 weeks in January, 2007. I got violently ill each month and finally had to be removed from the pill because it was diagnosed I had a "tarcevia reaction." They even tried lowering the pill to 100 mg but I still couldn’t take it - I had an allergic reaction to it.Every 6 weeks I had a cat scan - during the first 4 cycles the tumors did reduce and I finished the study in Nov, 2007. I really sweated out the year in absolute fear the tumors would progress and then we would have "to do something else."The tumors have remained the same size through my last treatment this past November, 2007.(50% of us in the Study made this goal - I am one of this group.) The doctor stated on Dec 5, 2007 - after cat scans - the tumors are "stable" and he was giving my body a rest until January 30, 2008. If, and when they start to grow (and - short of a miracle they will start to grow) then he says there are "other treatments" and we will deal with that day when it arrives.The doctor told me on Dec 4, 2007 - "Jackie, you have lived a year and that is a miracle" - and - after the last year I have finally learned to "stop and smell the roses." God has been my Co-Pilot through this very difficult year and we are now taking one day at a time and enjoying it to the fullest.I finally converted my tumor measurements to inches so I could understand the progress I have made this past year. The largest tumor in the liver started at 4 inches and is now 3 inches - to give you an idea of my progress. Yes, I lost my hair (it has come back very dark and natural curly); my husband (he is 73) has almost conquered learning the meaning of "care giver" and even though I was desperately ill the first four months, and really not able to do much the last eight months I am dealing with my situation. (I also lost 45 lbs, but I had 45 lbs I could spare.) One reason for becoming a "lab rat" as I refer to myself, is that whether or not I survive this illness - I am sure I will be helping the children growing up with my participation in this research. (While 50% of us finished this study without progression of tumors Dr. Greco said in his last study only 25% finished, so "yes" they are making progress.)I hope my input has not been too long and tedious for you to absorb, I just wanted you to know "I have been there and done that" and I know how  confusing CUP is. My blood tests indicated "activity" in my liver so I go back in 2 week for cat and pet scans to see if tumor is growing. While this thought terrifies me I have also come to realize after my last year how much my body needs to rest and how much I need to build my strength for whatever my next treatment is - whether it is surgery, chemo, radiation or all of the above.Sorry this has been so lengthy but felt it was important to show you the "trip" my CUP has taken me on.  If I can help further please let me know.jackie JackieB Fri, 28 Mar 2008 00:00:00 GMT Hi Jackie,Thanks for corresponding with me.  I believe cancer itself is very hard to deal with but when you have CUP it makes it that much worse not knowing where the originating location is.   I live in NY and at first I was sent to a local oncologist who was sending me for many tests.  Everyone around me could not understand how they were not able to locate the primary source.  WIth that being said, everyone kept saying I should go to Sloan Kettering (I live in NY and it of course was the best decision I ever made).The only location in my body that had shown activity was the lymph node in my neck.  No other location in my body shows any activity.  After all the chemo and radiation my last PET scan should no activity.  I know I have reached my one year mark (I discovered this lump in my  neck last March) so things are looking more promising every day.  I just feel that it is very hard to talk with other people about my condition because it is so rare.  Any cancer support groups do not specifically discuss this type of cancer.  From the statistics I have read this cancer affects 2-4% of the cancer cases.  I live in NY and here where the population is quite big it is even hard to find people who now about CUP.  My general MD initially told me that she had a male patient a few years back who had discovered the same thing as I in his neck and he had chemo and is doing quite well today.  Of course, you need to be checked frequently but I guess hearing his good news has given me even more hope that my body is fighting back. I am glad to know that you are stable now and it is quite comforting to reach out to others at this site who can share information as well.  Please keep posting your updates as you visit your doctor and I will do the same.  My next PET scan is scheduled for May 20 and doctor visit on May 28.   Thanks for listening to me. New York Girl   newyorkgirl Sat, 29 Mar 2008 00:00:00 GMT  On 3/29/2008 newyorkgirl wrote:Hi Jackie,Thanks for corresponding with me.  I believe cancer itself is very hard to deal with but when you have CUP it makes it that much worse not knowing where the originating location is.   I live in NY and at first I was sent to a local oncologist who was sending me for many tests.  Everyone around me could not understand how they were not able to locate the primary source.  WIth that being said, everyone kept saying I should go to Sloan Kettering (I live in NY and it of course was the best decision I ever made).The only location in my body that had shown activity was the lymph node in my neck.  No other location in my body shows any activity.  After all the chemo and radiation my last PET scan should no activity.  I know I have reached my one year mark (I discovered this lump in my  neck last March) so things are looking more promising every day.  I just feel that it is very hard to talk with other people about my condition because it is so rare.  Any cancer support groups do not specifically discuss this type of cancer.  From the statistics I have read this cancer affects 2-4% of the cancer cases.  I live in NY and here where the population is quite big it is even hard to find people who now about CUP.  My general MD initially told me that she had a male patient a few years back who had discovered the same thing as I in his neck and he had chemo and is doing quite well today.  Of course, you need to be checked frequently but I guess hearing his good news has given me even more hope that my body is fighting back. I am glad to know that you are stable now and it is quite comforting to reach out to others at this site who can share information as well.  Please keep posting your updates as you visit your doctor and I will do the same.  My next PET scan is scheduled for May 20 and doctor visit on May 28.   Thanks for listening to me. New York Girl  Glad you got my email.  Trying to explain it all I had typed it and copied it and for some reason it doubled it on this site, sorry about that.Sloan Kettering was also on my list of possibilities when I met with the Oncologist in Lexington (KY, is where I live.) M.D. Anderson in Texas is rated the Number 2 Cancer Hospital in the U.S. and I also asked about it.  The protocol Dr. Greco put me on is also being used in Anderson. (After going every 3 weeks for treatment for 1 year I understand the importance of being closer to your Cancer Center.)Trust me I have worn my computer out researching this kind of Cancer.  Everyone I have talked to who has CUP agrees it is devastating and confusing because not much is known about it.  Dr. Greco has been doing clinical trials on it for 14 years.  You can't explain it to anyone because they all have the "answer" and think you should do what they have read about - whether it is for CUP or some other Cancer.I have lived 1 1/2 years since I was diagnosed and my Internest says that is a miracle. When I go back on April 9 & 10 they will do the cat scan and if the tumors are growing we will discuss our next option.  The longer I go without a "new" tumor forming the better it is because maybe the cancer cells aren't in the body.Because of the size of the tumor that had mets to the liver (4") they figured I had had it for about 3 years, it sounds like you caught your's very early. I had no symptoms to cause anyone to suspect anything until the little lump on my neckline at the base of my hairline.I will definately let you know how I do in April.  If you just feel you need to touch base don't wait for May to contact me.  I feel it is a great comfort to talk to someone  who has CUP.jackie   JackieB Sat, 29 Mar 2008 00:00:00 GMT Jackie,Thanks for your info.  When I asked my doctor about the lump in my neck she said she didn't think it was there too long because I would have noticed it earlier.  So I guess it was good.  I was under the impression that once the cancer moved from its original location (and since mine was found in the lymph nodes it was not good).  I guess since it never hit any other orgins that is a good sign.  I'll just keep praying that in the months to follow that it doesn't show up anywhere.  Maybe the cancer is gone in my body!  I guess I just have to really believe that.   Again, thanks for listening and keep me posted with your updates. New York Girl  newyorkgirl Sat, 29 Mar 2008 00:00:00 GMT My father was just diagnosed with CUP.  It has spread to his liver and lungs.  He just started chemo at Sloan.  If he sees no progress after his first scans, I was going to suggest making an appointment with Dr.Greco because of all I have read about him.  Did Sloan get it right the first try or did you have to experiement with a few different chemos before seeing results?  I wish you conitnued good health!!!! nj917 Sun, 30 Mar 2008 00:00:00 GMT I have posted here before and on other sites and am still looking for someone who can share their experience with multiple brain metastasis, the treatment they had, the side effects they experienced and the outcome.  In her case, this is a metastatic cancer of unknown primary-CUP.In March of 2007, my wife had multiple tumors removed - 1 large on surgically, the four others with Gamma Knife.  She then had 30 days of whole brain radiation.  She is just now showing some of the cognitive effects of the WBR, but they are subtle.If someone else has a similar experience or has had multiple treatments with gamma or cyber knife, as it appears she may have, I would appreaciate hearing your story.  If someone knows what the real prognosis is for this type of disease I would like to hear that, too.  We need to make those arrangements as well.  The internet is a dangerous place for statistical information when it comes to cancer, especially on CUP!!Thanks  ohimick Mon, 31 Mar 2008 00:00:00 GMT HI NJ917,Just read your message.  Sloan pretty much got it right from the start.  I did 4 treatments and the chemo worked (initially I was scheduled to have 6 treatments).  I could feel the node in my neck reducing each time I had chemo until finally I really had to feel around to see if I could feel it any longer.  Sloan then sent me for 3 CAT scans and a PET scan and it showed an 85% reduction in size.  After the chemo they decided to do radiation on my neck and I had 30 treatments.  I was recently scanned in February - 3 CAT scans again and no activity and now I am scheduled for a PET scan in May.  I'm keeping my fingers crossed.  It was a year in March that I discovered this node on my neck and I'm glad to say it has now been one year with no further developments!  Keep me posted on your Dad and I'm glad I went to Sloan they know their stuff! New York Girl newyorkgirl Mon, 31 Mar 2008 00:00:00 GMT  On 3/28/2008 JackieB wrote: On 3/12/2008 newyorkgirl wrote:I was diagnosed in April 2007 with this horrible cancer.  At the time of the diagnosis I was 42 years old and the mother of 2 young daughters.  I was horrified of the prognoisis and uncertainty related to CUP.  I am trying to reach out to anyone who has or knows someone that has this cancer.  I initially discovered a lump on the right side of my neck in March 2007.  I visited my MD and she suggested I have an ultrasound.  After the ultrasound, I had a needle biopsy.  To make a long story short, I had another biopsy done wherein tissue was removed and all they could say was it was adenocarcinoma and they did not know where the cancer had originated from.  So I have CUP.  I had many tests performed and CAT and PET scans. In July 2007 I began chemo treatment.  Because of the location of the lymph node in my neck, I was able to feel the node reduce after two chemo treatments.  My oncologist decided she wanted me to do four treatments.  I completed four treatments and did not feel the lump in my neck any longer.  I was then sent for neck/chest/abdomon CAT scans and a PET scan.  The tests indictaed the node was reduced in size by 85% and the PET scan did night show any activity in my neck.  The doctors then decided they wanted to do radiation on my neck.  I had 30 radiation treatments from November-December 2007.  I recently in February 2008, had neck/chest/abdomon CAT scans and nothing else showing.  It does seem like I responded well to the Chemo and Radiation.  I am know scheduled for another follow-up PET scan in May.I guess at this point I feel better than I did one year ago.  I discovered this last March 2007 and here I am one year later March 2008, and things seem a little brighter.  I know the statistics are not so good with this cancer but I guess so far its starting to seem more promising for me.If anyone has any further information -- or if I can help offer any information, please feel free to correspond.Thanks.God got my attention on Sept 25, 2006. I was diagnosed with "Cancer, Unknown Primary Source". I am now 68 years old and need to explain the fluke that found my cancer, rather than waiting for symptoms. In January, 2006, I had a total hip replacement and rod placed in leg - was in a hospital bed for 5 months, so by the fall of 2006 I decided I needed to catch up on some doctor appointments. One appointment in particular was I had felt a little knot on the back of my head - low in hairline. I wasn’t particularly worried about it being cancer as it was not scabby or an open sore - just a little watery-feeling lump. Went to my Dermatologist and when he felt the lump he said, "Jackie, I don’t have a clue what this is so I am doing a biopsy on it." Two days later I received a personal call from my Dermatologist telling me it was cancer but not skin cancer. He called my Internist immediately, my Internist contacted me and sent me to a local Oncologist. I must tell you this Oncologist was extremely thorough and had completed nearly every test in the book in 1 week. When she met with me she said I had Ademocarcinoma, Unknown Primary source which had metastisized to the liver (4" tumor and liver also surrounded by lesions) and it was "venting" up through this area on the back of my head; also it was not operatable nor curable. She was set that week to start me on Chemo. I simple didn’t understand any of this - it just did not make sense. When I asked what my prognosis was I was told she couldn’t tell me until I had undergone chemo for 4 months. I asked why they could not find the primary source and she said sometimes "it just went poof and disappeared. This confused me that much more - like a bad dream that I couldn’t wake up from. I did some "networking" and went to Lexington to get a 2nd opinion from a highly recommended Oncologist. I absolutely loved this Oncologist and by the time I got to his office I had done much internet research on this type of cancer and went in prepared with questions about prognosis and possible seeking help from clinics that dealt with this type cancer. He spent 2 1/1 hours with my husband and myself - he explained that if the blood supply was denied to the primary site it could disappear but the bad news was it had already moved to my liver. He also explained the reason this type of cancer is so hard to cure is because if it had started in my breast and moved to liver it would still be called breast cancer and would be treated with chemo that had been successful against breast cancer or if from colon and moved it would still be colon cancer and treated with chemo for colon cancer. When they know where the cancer originates they call it that organ’s name and they are much more successful on knowing how to deal with it. (This finally began to make sense to us.)He also told us - going by patients with my type of cancer (and everyone is different) but my life expectancy could be several years with successful chemo and 1 year without successful chemo. He stated the fact that my chance of traditional chemo being successful was 20%. We desperatley needed this information to make an informed decision.He also said to me, "Jackie, you aren’t going to stop with me, are you?" I said "no" I still could not accept that prognosis. At this time he offered to doctor me if I wanted but he also said he knew of Dr. Greco at TN Oncology who did clinical trials and he thought with my positive attitude and personality I would be a good candidate; Dr. Greco was a recognized expert in this type of cancer and he was within 250 miles of my home (which I found out this last year is extremely important.)ONE THING YOU NEED TO ALWAYS KEEP IN MIND - sometimes Clinical trials are not as successful as traditional chemo. Accepting this, my husband and I still decided to consult with Dr. Greco. Nov, 2, 2006, found us in Dr. Greco’s office and after he reviewed all my records he explained the Clinical Trial he would suggest for me. I had a four-inch tumor in my liver and a smaller one in my chest cavity near my heart. Knowing at this point that Dr. Greco is a well-known expert in this type of cancer and also finding the primary source I asked him about doing just that. He said, "Jackie, right now we are fighting Cancer and fighting for your life. We need to hit your body with treatments that not only target the tumors but also with treatment that will kill cancer cells in your body. We won’t know if we have been successful until no new tumors appear - there is no blood test for this cancer. If we operate first, and yes you can live with ½ a liver, and there are still cancer cells in your body they will again mets to the liver." (I also have done research and found out this is why a lot of surgeons feel this type of surgery is not advisable.) Dr. Greco said his hope was that at some time in the future I would be a candidate for surgery but that was down the road. (The MOST IMPORTANT thing right then was to reduce the tumors and also try and kill the cells in my blood.)I enrolled in a one-year Clinical Research Trial with Dr. Greco, Oncologist - TN Oncology, and an expert in this particular type of cancer. November, December, January and February found me on four extremely potent treatments (every three weeks) which targeted and reduced the tumors a slight amount. March - through November, 2007, found me getting one treatment every three weeks of an experimental treatment (Avastin) in trying to cut off the blood supply to the tumors. My treatments were: Taxoll, Carboplatin, Avastin(every 21 days) and 150 mg Erlotrim(tarceva) pill every day. This is referred to as 1 cycle - I was scheduled to have 4 cycles and if tumors had not grown, nor any new tumors I would continue Avastin and Erlotrim pill for a total of 1 year or until the tumors started to grow or new tumors were found.I took the 150 Erlotrim pill approximately 2 weeks in November, 2 weeks in Dec and 2 weeks in January, 2007. I got violently ill each month and finally had to be removed from the pill because it was diagnosed I had a "tarcevia reaction." They even tried lowering the pill to 100 mg but I still couldn’t take it - I had an allergic reaction to it.Every 6 weeks I had a cat scan - during the first 4 cycles the tumors did reduce and I finished the study in Nov, 2007. I really sweated out the year in absolute fear the tumors would progress and then we would have "to do something else."The tumors have remained the same size through my last treatment this past November, 2007.(50% of us in the Study made this goal - I am one of this group.) The doctor stated on Dec 5, 2007 - after cat scans - the tumors are "stable" and he was giving my body a rest until January 30, 2008. If, and when they start to grow (and - short of a miracle they will start to grow) then he says there are "other treatments" and we will deal with that day when it arrives.The doctor told me on Dec 4, 2007 - "Jackie, you have lived a year and that is a miracle" - and - after the last year I have finally learned to "stop and smell the roses." God has been my Co-Pilot through this very difficult year and we are now taking one day at a time and enjoying it to the fullest.I finally converted my tumor measurements to inches so I could understand the progress I have made this past year. The largest tumor in the liver started at 4 inches and is now 3 inches - to give you an idea of my progress. Yes, I lost my hair (it has come back very dark and natural curly); my husband (he is 73) has almost conquered learning the meaning of "care giver" and even though I was desperately ill the first four months, and really not able to do much the last eight months I am dealing with my situation. (I also lost 45 lbs, but I had 45 lbs I could spare.) One reason for becoming a "lab rat" as I refer to myself, is that whether or not I survive this illness - I am sure I will be helping the children growing up with my participation in this research. (While 50% of us finished this study without progression of tumors Dr. Greco said in his last study only 25% finished, so "yes" they are making progress.)I hope my input has not been too long and tedious for you to absorb, I just wanted you to know "I have been there and done that" and I know how  confusing CUP is. My blood tests indicated "activity" in my liver so I go back in 2 week for cat and pet scans to see if tumor is growing. While this thought terrifies me I have also come to realize after my last year how much my body needs to rest and how much I need to build my strength for whatever my next treatment is - whether it is surgery, chemo, radiation or all of the above.Sorry this has been so lengthy but felt it was important to show you the "trip" my CUP has taken me on.  If I can help further please let me know.jackieIn January, 2006, I had a total hip replacement and rod placed in leg - was in a hospital bed for 5 months, so by the fall of 2006 I decided I needed to catch up on some doctor appointments. One appointment in particular was I had felt a little knot on the back of my head - low in hairline. I wasn’t particularly worried about it being cancer as it was not scabby or an open sore - just a little watery-feeling lump. Went to my Dermatologist and when he felt the lump he said, "Jackie, I don’t have a clue what this is so I am doing a biopsy on it." Two days later I received a personal call from my Dermatologist telling me it was cancer but not skin cancer. He called my Internist immediately, my Internist contacted me and sent me to a local Oncologist. I must tell you this Oncologist was extremely thorough and had completed nearly every test in the book in 1 week. When she met with me she said I had Ademocarcinoma, Unknown Primary source which had metastisized to the liver (4" tumor and liver also surrounded by lesions) and it was "venting" up through this area on the back of my head; also it was not operatable nor curable. She was set that week to start me on Chemo. I simple didn’t understand any of this - it just did not make sense. When I asked what my prognosis was I was told she couldn’t tell me until I had undergone chemo for 4 months. I asked why they could not find the primary source and she said sometimes "it just went poof and disappeared. This confused me that much more - like a bad dream that I couldn’t wake up from. I did some "networking" and went to Lexington to get a 2nd opinion from a highly recommended Oncologist. I absolutely loved this Oncologist and by the time I got to his office I had done much internet research on this type of cancer and went in prepared with questions about prognosis and possible seeking help from clinics that dealt with this type cancer. He spent 2 1/1 hours with my husband and myself - he explained that if the blood supply was denied to the primary site it could disappear but the bad news was it had already moved to my liver. He also explained the reason this type of cancer is so hard to cure is because if it had started in my breast and moved to liver it would still be called breast cancer and would be treated with chemo that had been successful against breast cancer or if from colon and moved it would still be colon cancer and treated with chemo for colon cancer. When they know where the cancer originates they call it that organ’s name and they are much more successful on knowing how to deal with it. (This finally began to make sense to us.)He also told us - going by patients with my type of cancer (and everyone is different) but my life expectancy could be several years with successful chemo and 1 year without successful chemo. He stated the fact that my chance of traditional chemo being successful was 20%. We desperatley needed this information to make an informed decision.He also said to me, "Jackie, you aren’t going to stop with me, are you?" I said "no" I still could not accept that prognosis. At this time he offered to doctor me if I wanted but he also said he knew of Dr. Greco at TN Oncology who did clinical trials and he thought with my positive attitude and personality I would be a good candidate; Dr. Greco was a recognized expert in this type of cancer and he was within 250 miles of my home (which I found out this last year is extremely important.)ONE THING YOU NEED TO ALWAYS KEEP IN MIND - sometimes Clinical trials are not as successful as traditional chemo. Accepting this, my husband and I still decided to consult with Dr. Greco. Nov, 2, 2006, found us in Dr. Greco’s office and after he reviewed all my records he explained the Clinical Trial he would suggest for me. I had a four-inch tumor in my liver and a smaller one in my chest cavity near my heart. Knowing at this point that Dr. Greco is a well-known expert in this type of cancer and also finding the primary source I asked him about doing just that. He said, "Jackie, right now we are fighting Cancer and fighting for your life. We need to hit your body with treatments that not only target the tumors but also with treatment that will kill cancer cells in your body. We won’t know if we have been successful until no new tumors appear - there is no blood test for this cancer. If we operate first, and yes you can live with ½ a liver, and there are still cancer cells in your body they will again mets to the liver." (I also have done research and found out this is why a lot of surgeons feel this type of surgery is not advisable.) Dr. Greco said his hope was that at some time in the future I would be a candidate for surgery but that was down the road. (The MOST IMPORTANT thing right then was to reduce the tumors and also try and kill the cells in my blood.)I enrolled in a one-year Clinical Research Trial with Dr. Greco, Oncologist - TN Oncology, and an expert in this particular type of cancer. November, December, January and February found me on four extremely potent treatments (every three weeks) which targeted and reduced the tumors a slight amount. March - through November, 2007, found me getting one treatment every three weeks of an experimental treatment (Avastin) in trying to cut off the blood supply to the tumors. My treatments were: Taxoll, Carboplatin, Avastin(every 21 days) and 150 mg Erlotrim(tarceva) pill every day. This is referred to as 1 cycle - I was scheduled to have 4 cycles and if tumors had not grown, nor any new tumors I would continue Avastin and Erlotrim pill for a total of 1 year or until the tumors started to grow or new tumors were found.I took the 150 Erlotrim pill approximately 2 weeks in November, 2 weeks in Dec and 2 weeks in January, 2007. I got violently ill each month and finally had to be removed from the pill because it was diagnosed I had a "tarcevia reaction." They even tried lowering the pill to 100 mg but I still couldn’t take it - I had an allergic reaction to it.Every 6 weeks I had a cat scan - during the first 4 cycles the tumors did reduce and I finished the study in Nov, 2007. I really sweated out the year in absolute fear the tumors would progress and then we would have "to do something else."The tumors have remained the same size through my last treatment this past November, 2007.(50% of us in the Study made this goal - I am one of this group.) The doctor stated on Dec 5, 2007 - after cat scans - the tumors are "stable" and he was giving my body a rest until January 30, 2008. If, and when they start to grow (and - short of a miracle they will start to grow) then he says there are "other treatments" and we will deal with that day when it arrives.The doctor told me on Dec 4, 2007 - "Jackie, you have lived a year and that is a miracle" - and - after the last year I have finally learned to "stop and smell the roses." God has been my Co-Pilot through this very difficult year and we are now taking one day at a time and enjoying it to the fullest.I finally converted my tumor measurements to inches so I could understand the progress I have made this past year. The largest tumor in the liver started at 4 inches and is now 3 inches - to give you an idea of my progress. Yes, I lost my hair (it has come back very dark and natural curly); my husband (he is 73) has almost conquered learning the meaning of "care giver" and even though I was desperately ill the first four months, and really not able to do much the last eight months I am dealing with my situation. (I also lost 45 lbs, but I had 45 lbs I could spare.) One reason for becoming a "lab rat" as I refer to myself, is that whether or not I survive this illness - I am sure I will be helping the children growing up with my participation in this research. (While 50% of us finished this study without progression of tumors Dr. Greco said in his last study only 25% finished, so "yes" they are making progress.)I hope my input has not been too long and tedious for you to absorb, I just wanted you to know "I have been there and done that" and I know how  confusing CUP is. My blood tests indicated "activity" in my liver so I go back in 2 week for cat and pet scans to see if tumor is growing. While this thought terrifies me I have also come to realize after my last year how much my body needs to rest and how much I need to build my strength for whatever my next treatment is - whether it is surgery, chemo, radiation or all of the above.Sorry this has been so lengthy but felt it was important to show you the "trip" my CUP has taken me on.  If I can help further please let me know.jackieIn January, 2006, I had a total hip replacement and rod placed in leg - was in a hospital bed for 5 months, so by the fall of 2006 I decided I needed to catch up on some doctor appointments. One appointment in particular was I had felt a little knot on the back of my head - low in hairline. I wasn’t particularly worried about it being cancer as it was not scabby or an open sore - just a little watery-feeling lump. Went to my Dermatologist and when he felt the lump he said, "Jackie, I don’t have a clue what this is so I am doing a biopsy on it." Two days later I received a personal call from my Dermatologist telling me it was cancer but not skin cancer. He called my Internist immediately, my Internist contacted me and sent me to a local Oncologist. I must tell you this Oncologist was extremely thorough and had completed nearly every test in the book in 1 week. When she met with me she said I had Ademocarcinoma, Unknown Primary source which had metastisized to the liver (4" tumor and liver also surrounded by lesions) and it was "venting" up through this area on the back of my head; also it was not operatable nor curable. She was set that week to start me on Chemo. I simple didn’t understand any of this - it just did not make sense. When I asked what my prognosis was I was told she couldn’t tell me until I had undergone chemo for 4 months. I asked why they could not find the primary source and she said sometimes "it just went poof and disappeared. This confused me that much more - like a bad dream that I couldn’t wake up from. I did some "networking" and went to Lexington to get a 2nd opinion from a highly recommended Oncologist. I absolutely loved this Oncologist and by the time I got to his office I had done much internet research on this type of cancer and went in prepared with questions about prognosis and possible seeking help from clinics that dealt with this type cancer. He spent 2 1/1 hours with my husband and myself - he explained that if the blood supply was denied to the primary site it could disappear but the bad news was it had already moved to my liver. He also explained the reason this type of cancer is so hard to cure is because if it had started in my breast and moved to liver it would still be called breast cancer and would be treated with chemo that had been successful against breast cancer or if from colon and moved it would still be colon cancer and treated with chemo for colon cancer. When they know where the cancer originates they call it that organ’s name and they are much more successful on knowing how to deal with it. (This finally began to make sense to us.)He also told us - going by patients with my type of cancer (and everyone is different) but my life expectancy could be several years with successful chemo and 1 year without successful chemo. He stated the fact that my chance of traditional chemo being successful was 20%. We desperatley needed this information to make an informed decision.He also said to me, "Jackie, you aren’t going to stop with me, are you?" I said "no" I still could not accept that prognosis. At this time he offered to doctor me if I wanted but he also said he knew of Dr. Greco at TN Oncology who did clinical trials and he thought with my positive attitude and personality I would be a good candidate; Dr. Greco was a recognized expert in this type of cancer and he was within 250 miles of my home (which I found out this last year is extremely important.)ONE THING YOU NEED TO ALWAYS KEEP IN MIND - sometimes Clinical trials are not as successful as traditional chemo. Accepting this, my husband and I still decided to consult with Dr. Greco. Nov, 2, 2006, found us in Dr. Greco’s office and after he reviewed all my records he explained the Clinical Trial he would suggest for me. I had a four-inch tumor in my liver and a smaller one in my chest cavity near my heart. Knowing at this point that Dr. Greco is a well-known expert in this type of cancer and also finding the primary source I asked him about doing just that. He said, "Jackie, right now we are fighting Cancer and fighting for your life. We need to hit your body with treatments that not only target the tumors but also with treatment that will kill cancer cells in your body. We won’t know if we have been successful until no new tumors appear - there is no blood test for this cancer. If we operate first, and yes you can live with ½ a liver, and there are still cancer cells in your body they will again mets to the liver." (I also have done research and found out this is why a lot of surgeons feel this type of surgery is not advisable.) Dr. Greco said his hope was that at some time in the future I would be a candidate for surgery but that was down the road. (The MOST IMPORTANT thing right then was to reduce the tumors and also try and kill the cells in my blood.)I enrolled in a one-year Clinical Research Trial with Dr. Greco, Oncologist - TN Oncology, and an expert in this particular type of cancer. November, December, January and February found me on four extremely potent treatments (every three weeks) which targeted and reduced the tumors a slight amount. March - through November, 2007, found me getting one treatment every three weeks of an experimental treatment (Avastin) in trying to cut off the blood supply to the tumors. My treatments were: Taxoll, Carboplatin, Avastin(every 21 days) and 150 mg Erlotrim(tarceva) pill every day. This is referred to as 1 cycle - I was scheduled to have 4 cycles and if tumors had not grown, nor any new tumors I would continue Avastin and Erlotrim pill for a total of 1 year or until the tumors started to grow or new tumors were found.I took the 150 Erlotrim pill approximately 2 weeks in November, 2 weeks in Dec and 2 weeks in January, 2007. I got violently ill each month and finally had to be removed from the pill because it was diagnosed I had a "tarcevia reaction." They even tried lowering the pill to 100 mg but I still couldn’t take it - I had an allergic reaction to it.Every 6 weeks I had a cat scan - during the first 4 cycles the tumors did reduce and I finished the study in Nov, 2007. I really sweated out the year in absolute fear the tumors would progress and then we would have "to do something else."The tumors have remained the same size through my last treatment this past November, 2007.(50% of us in the Study made this goal - I am one of this group.) The doctor stated on Dec 5, 2007 - after cat scans - the tumors are "stable" and he was giving my body a rest until January 30, 2008. If, and when they start to grow (and - short of a miracle they will start to grow) then he says there are "other treatments" and we will deal with that day when it arrives.The doctor told me on Dec 4, 2007 - "Jackie, you have lived a year and that is a miracle" - and - after the last year I have finally learned to "stop and smell the roses." God has been my Co-Pilot through this very difficult year and we are now taking one day at a time and enjoying it to the fullest.I finally converted my tumor measurements to inches so I could understand the progress I have made this past year. The largest tumor in the liver started at 4 inches and is now 3 inches - to give you an idea of my progress. Yes, I lost my hair (it has come back very dark and natural curly); my husband (he is 73) has almost conquered learning the meaning of "care giver" and even though I was desperately ill the first four months, and really not able to do much the last eight months I am dealing with my situation. (I also lost 45 lbs, but I had 45 lbs I could spare.) One reason for becoming a "lab rat" as I refer to myself, is that whether or not I survive this illness - I am sure I will be helping the children growing up with my participation in this research. (While 50% of us finished this study without progression of tumors Dr. Greco said in his last study only 25% finished, so "yes" they are making progress.)I hope my input has not been too long and tedious for you to absorb, I just wanted you to know "I have been there and done that" and I know how  confusing CUP is. My blood tests indicated "activity" in my liver so I go back in 2 week for cat and pet scans to see if tumor is growing. While this thought terrifies me I have also come to realize after my last year how much my body needs to rest and how much I need to build my strength for whatever my next treatment is - whether it is surgery, chemo, radiation or all of the above.Sorry this has been so lengthy but felt it was important to show you the "trip" my CUP has taken me on.  If I can help further please let me know.jackie In January, 2006, I had a total hip replacement and rod placed in leg - was in a hospital bed for 5 months, so by the fall of 2006 I decided I needed to catch up on some doctor appointments. One appointment in particular was I had felt a little knot on the back of my head - low in hairline. I wasn’t particularly worried about it being cancer as it was not scabby or an open sore - just a little watery-feeling lump. Went to my Dermatologist and when he felt the lump he said, "Jackie, I don’t have a clue what this is so I am doing a biopsy on it." Two days later I received a personal call from my Dermatologist telling me it was cancer but not skin cancer. He called my Internist immediately, my Internist contacted me and sent me to a local Oncologist. I must tell you this Oncologist was extremely thorough and had completed nearly every test in the book in 1 week. When she met with me she said I had Ademocarcinoma, Unknown Primary source which had metastisized to the liver (4" tumor and liver also surrounded by lesions) and it was "venting" up through this area on the back of my head; also it was not operatable nor curable. She was set that week to start me on Chemo. I simple didn’t understand any of this - it just did not make sense. When I asked what my prognosis was I was told she couldn’t tell me until I had undergone chemo for 4 months. I asked why they could not find the primary source and she said sometimes "it just went poof and disappeared. This confused me that much more - like a bad dream that I couldn’t wake up from. I did some "networking" and went to Lexington to get a 2nd opinion from a highly recommended Oncologist. I absolutely loved this Oncologist and by the time I got to his office I had done much internet research on this type of cancer and went in prepared with questions about prognosis and possible seeking help from clinics that dealt with this type cancer. He spent 2 1/1 hours with my husband and myself - he explained that if the blood supply was denied to the primary site it could disappear but the bad news was it had already moved to my liver. He also explained the reason this type of cancer is so hard to cure is because if it had started in my breast and moved to liver it would still be called breast cancer and would be treated with chemo that had been successful against breast cancer or if from colon and moved it would still be colon cancer and treated with chemo for colon cancer. When they know where the cancer originates they call it that organ’s name and they are much more successful on knowing how to deal with it. (This finally began to make sense to us.)He also told us - going by patients with my type of cancer (and everyone is different) but my life expectancy could be several years with successful chemo and 1 year without successful chemo. He stated the fact that my chance of traditional chemo being successful was 20%. We desperatley needed this information to make an informed decision.He also said to me, "Jackie, you aren’t going to stop with me, are you?" I said "no" I still could not accept that prognosis. At this time he offered to doctor me if I wanted but he also said he knew of Dr. Greco at TN Oncology who did clinical trials and he thought with my positive attitude and personality I would be a good candidate; Dr. Greco was a recognized expert in this type of cancer and he was within 250 miles of my home (which I found out this last year is extremely important.)ONE THING YOU NEED TO ALWAYS KEEP IN MIND - sometimes Clinical trials are not as successful as traditional chemo. Accepting this, my husband and I still decided to consult with Dr. Greco. Nov, 2, 2006, found us in Dr. Greco’s office and after he reviewed all my records he explained the Clinical Trial he would suggest for me. I had a four-inch tumor in my liver and a smaller one in my chest cavity near my heart. Knowing at this point that Dr. Greco is a well-known expert in this type of cancer and also finding the primary source I asked him about doing just that. He said, "Jackie, right now we are fighting Cancer and fighting for your life. We need to hit your body with treatments that not only target the tumors but also with treatment that will kill cancer cells in your body. We won’t know if we have been successful until no new tumors appear - there is no blood test for this cancer. If we operate first, and yes you can live with ½ a liver, and there are still cancer cells in your body they will again mets to the liver." (I also have done research and found out this is why a lot of surgeons feel this type of surgery is not advisable.) Dr. Greco said his hope was that at some time in the future I would be a candidate for surgery but that was down the road. (The MOST IMPORTANT thing right then was to reduce the tumors and also try and kill the cells in my blood.)I enrolled in a one-year Clinical Research Trial with Dr. Greco, Oncologist - TN Oncology, and an expert in this particular type of cancer. November, December, January and February found me on four extremely potent treatments (every three weeks) which targeted and reduced the tumors a slight amount. March - through November, 2007, found me getting one treatment every three weeks of an experimental treatment (Avastin) in trying to cut off the blood supply to the tumors. My treatments were: Taxoll, Carboplatin, Avastin(every 21 days) and 150 mg Erlotrim(tarceva) pill every day. This is referred to as 1 cycle - I was scheduled to have 4 cycles and if tumors had not grown, nor any new tumors I would continue Avastin and Erlotrim pill for a total of 1 year or until the tumors started to grow or new tumors were found.I took the 150 Erlotrim pill approximately 2 weeks in November, 2 weeks in Dec and 2 weeks in January, 2007. I got violently ill each month and finally had to be removed from the pill because it was diagnosed I had a "tarcevia reaction." They even tried lowering the pill to 100 mg but I still couldn’t take it - I had an allergic reaction to it.Every 6 weeks I had a cat scan - during the first 4 cycles the tumors did reduce and I finished the study in Nov, 2007. I really sweated out the year in absolute fear the tumors would progress and then we would have "to do something else."The tumors have remained the same size through my last treatment this past November, 2007.(50% of us in the Study made this goal - I am one of this group.) The doctor stated on Dec 5, 2007 - after cat scans - the tumors are "stable" and he was giving my body a rest until January 30, 2008. If, and when they start to grow (and - short of a miracle they will start to grow) then he says there are "other treatments" and we will deal with that day when it arrives.The doctor told me on Dec 4, 2007 - "Jackie, you have lived a year and that is a miracle" - and - after the last year I have finally learned to "stop and smell the roses." God has been my Co-Pilot through this very difficult year and we are now taking one day at a time and enjoying it to the fullest.I finally converted my tumor measurements to inches so I could understand the progress I have made this past year. The largest tumor in the liver started at 4 inches and is now 3 inches - to give you an idea of my progress. Yes, I lost my hair (it has come back very dark and natural curly); my husband (he is 73) has almost conquered learning the meaning of "care giver" and even though I was desperately ill the first four months, and really not able to do much the last eight months I am dealing with my situation. (I also lost 45 lbs, but I had 45 lbs I could spare.) One reason for becoming a "lab rat" as I refer to myself, is that whether or not I survive this illness - I am sure I will be helping the children growing up with my participation in this research. (While 50% of us finished this study without progression of tumors Dr. Greco said in his last study only 25% finished, so "yes" they are making progress.)I hope my input has not been too long and tedious for you to absorb, I just wanted you to know "I have been there and done that" and I know how  confusing CUP is. My blood tests indicated "activity" in my liver so I go back in 2 week for cat and pet scans to see if tumor is growing. While this thought terrifies me I have also come to realize after my last year how much my body needs to rest and how much I need to build my strength for whatever my next treatment is - whether it is surgery, chemo, radiation or all of the above.Sorry this has been so lengthy but felt it was important to show you the "trip" my CUP has taken me on.  If I can help further please let me know.jackieJackie,Thank you for the information. I just learned my mother who is 81 has cancer of unknown primary.  We found it when she had a kidney problem and her lymph nodes were swollen.  It's been a rough year as my dad just died suddenly a year ago.  The oncologist ran her through many tests and couldn't find the cancer or a tumor just lymph nodes swollen.  However, she gave her 6 months to live.  We are in shock because she feels so good and is so fit and healthy.  She has no real health problems.  The Dr. recommended chemo of taxol and something else.  My neighbor is an oncologist so I got a second opinion.  He did not recommend chemo at her age and advised we use "biologic agents" I could be wrong about that name but I know Avistat is one of the drugs.  He also sent her info to MD Anderson and they said she would qualify for a Phase 1 trial and would have to go back and forth to Houston all the time.  I know Mom is concerned about quality of life and also not sure she wants to be a lab rat. I need her around longer but don't want her to suffer either.  Thoughts?Jindi jindi Thu, 24 Apr 2008 00:00:00 GMT Please forgive me for not answering promptly to your message.  I am so very sorry about your mother.My tumors started growing again 3 weeks ago plus 2 new nodules in my lungs.  The trial I was in last year was a Phase 2, after several weeks of cat scans, blood tests, etc. I qualified for a Phase 1 Trial. The Phase 2 Trial kept me going for a year - then the oncologist gave my body a rest for 4 months or when the tumors started growing. (This rest was extremely important for my body and I realize it now.)I am 68, my cancer was diagnosed Sept 25, 2006, and the treatments which I explained in my letter (which keeps growing and duplicating on this site for some reason) were hard on me.  I was very healthy and very strong and independent when I was diagnosed.  Last year has taken its toll on me but it gave me 1 1/2 years to be with my great-grandchildren, grandchildren, children, relatives and friends. I would not say last year was 100% quality year. But it had its good moments and memories.This Trial I am on now requires me to go to Nashville EVERY week (which is a 3 1/2 hour drive from our home one way).  Some weeks it will be for 1 day and some weeks it will be for 3-4 days.  They are hoping to halt the growth of the tumors.  We won't know if this treatment is working for about 4 more weeks, but last week my liver enzymes had dropped a tad which I hope is a good sign.  I will be on the 2 oral chem drugs 2 weeks and then off 1 week.  There are side effects and so far the worse one has been terrible fatigue and intense muscle pain. There are some more that I hope I don't get.(I am also only half as strong as I was when first diagnosed.)I can not in good conscious advice you on what your 81 year old mother should do.  Once I figured this horrible diagnosis out and realized there was no cure nor was it operatable I went into the Clinical Trial for 2 reasons.  One of course was to buy me some time to get my affairs in order, the other was in hopes I could help them get closer to a cure for this horrible beast.  They will eventually get a cure but it takes these trials to accomplish that and my oncologist Dr. Greco is an expert in this type of cancer and he has been working on this for 15 years.I will know when the time is right to quit fighting and I will die with dignity with the help of Hospice and my Internist.I know this probably isn't the answer you were wanting - death is a very private matter, and your mother is right to be concerned with quality of life. But only she and you can make that decision.I will keep you and your mom in my prayers and please keep me posted.Your friend,JackieB JackieB Sun, 27 Apr 2008 00:00:00 GMT Jackie,I don't even know if I'm replying appropriately as I am having trouble figuring out this site.  I have been in denial for about a month because my Mom has seemed so healthy.  I did contact Dr. Greco and he consulted with my mom's oncologist.  I'm getting scared though.  My mom is taking avisten ?  through an IV every other week and a Tarceva pill daily.  She had been seeming as though she was doing so well.  However, this week she has had diahrea and stomach and hip pains.  I'm so afraid what this means.  I have been putting off taking a leave from my very stressful job thinking I had more time.  I'm scared.  Have you had any of these symptoms or is this the trial pill you are on?Hope you are doing well.  Thanks for your replyJindi jindi Fri, 30 May 2008 00:00:00 GMT Jackie,I have had such trouble replying to you.  The messages I think come to me instead of you.  I have been in denial for a month and trying to have faith that God won't take my mom for a long time.  Thanks for your info.  I actually contacted Dr. Greco from your messages and he replied and consulted with Mom's oncologist.  He suggested we could start radiation.  Mom is fit and healthy until about a week or so ago and she started having terrible diarreah and some pains in her stomach and hips.  She is fatigued all the time and just blames it on the medicine.  Now, maybe it is from the medicine.  I don't know and really hope that is what it is.....How are you doing?  I hope you continue to do well.  Sounds like you are with the right doctor.  It was very nice of him to reply to me and also speak to Mom's doctor.   I'm so scared that I will have wasted time I shouldn't have.Please let me know how you are doing.Jindi PS if Jan is out there I've also been having trouble replying to you.  I appreciate your note and want to get in touch jindi Fri, 30 May 2008 00:00:00 GMT  On 5/30/2008 jindi wrote:Jackie,I have had such trouble replying to you.  The messages I think come to me instead of you.  I have been in denial for a month and trying to have faith that God won't take my mom for a long time.  Thanks for your info.  I actually contacted Dr. Greco from your messages and he replied and consulted with Mom's oncologist.  He suggested we could start radiation.  Mom is fit and healthy until about a week or so ago and she started having terrible diarreah and some pains in her stomach and hips.  She is fatigued all the time and just blames it on the medicine.  Now, maybe it is from the medicine.  I don't know and really hope that is what it is.....How are you doing?  I hope you continue to do well.  Sounds like you are with the right doctor.  It was very nice of him to reply to me and also speak to Mom's doctor.   I'm so scared that I will have wasted time I shouldn't have.Please let me know how you are doing.Jindi PS if Jan is out there I've also been having trouble replying to you.  I appreciate your note and want to get in touchDear Jindi,Once again I apoligize for my delay in replying.  I have had some side effect and this week Dr. Greco is going to take me off the new medication for 2 weeks to give my body a rest and to seperate what may be caused from the medicine, my body, etc.I am glad Dr. Greco responded to you so promptly - he is a great doctor.  I am not a candidate for radiation so it sounds like you mother is lucky - I have too many lessions and tumors.Keep me posted and I will do likewise.  Good luck.JackieB JackieB Tue, 10 Jun 2008 00:00:00 GMT Hi, I have CUP also.  I am 44 with two children (22 & 6).  I was diagnosed 8/2007.  I know exactly how you feel!  I have it in my lungs, liver and across my abdomen.  I have been receiving chemo since 10/07 with no end in sight.  The cancer has not spread and has in fact decreased significantly but the tumors have not gotten much smaller in the last six months.  We just changed chemo three weeks ago to see if that will make a difference. Don't read all the statistics on line.  Most of those concern people much older than us.  I think we have a fighting chance and it sounds like you are on the road to recovery!I, like Jackie (who answered you) found Dr. Greco at Vanderbuilt and love him.  My doctor in Atlanta is following his advice on my treatment. Shelley64 Tue, 17 Jun 2008 00:00:00 GMT Hi Jackie,I am new to this message board and your response to New York Girl was the first messages I have read.I'm so sorry to hear about the new tumors but, you are in the best place with Dr. Greco.  I am 44 and was diagnosed 8/2007.  I have tumors in my liver, both lungs and across my abdomen.  It is really a lot of cancer.  I found Dr. Greco too,  And I love him too.  My doctor in Atlanta is giving me his recommended treatment.  I know it is a long way to see him (3 1/2 hours for me too) but I think it is worth it.  I saw him last month and he told me about new DNA testing that will be able to pinpoint the orgin.  I am supposed to have my tissue sent to him.  Ask him about that.  Don't give up yet.   Shelley64 Tue, 17 Jun 2008 00:00:00 GMT I have to disagree on your point about not reading what is online. Cancer does not ask what age you are it attacks. I just lost my mom 10 days ago to CUP and she was 50 years old. She was diagnosed 14 months ago and it has been a battle ever since. ddm612 Sun, 10 Aug 2008 00:00:00 GMT Sorry about your mother.  50 is much too young.  My wife, a couple years older has CUP with brain mets.  Mets were treated but can't treat the CUP because they can't find it.  It is dormant, waiting for the opportunity of a weaked immune system to open the door.  The internet and her first oncologist gave her 18 to 24 months and she is at month 16.Sorry.  You sound angry still, and rightfully so.  It may be good to talk more about your loss with a friend or even right here on this site.  There is so little information about CUP out there, sharing  your experience may help others. Take Care OVluvsher Fri, 15 Aug 2008 00:00:00 GMT  On 8/15/2008 OVluvsher wrote:Sorry about your mother.  50 is much too young.  My wife, a couple years older has CUP with brain mets.  Mets were treated but can't treat the CUP because they can't find it.  It is dormant, waiting for the opportunity of a weaked immune system to open the door.  The internet and her first oncologist gave her 18 to 24 months and she is at month 16.Sorry.  You sound angry still, and rightfully so.  It may be good to talk more about your loss with a friend or even right here on this site.  There is so little information about CUP out there, sharing  your experience may help others. Take Care Hi - I just found your message on CUP from a month ago.  My mother was diagnosed with CUP in July.  She is not a candidate for radiation or surgery so we had no choice but to go the Chemo route.  She has been experiencing side effects.  Are you familiar with a site that has good info on this type of cancer?  I hope that your wife is doing well.  Any information you can give would be appreciated.Cocoe   Cocoe Tue, 16 Sep 2008 00:00:00 GMT  On 4/27/2008 JackieB wrote:Please forgive me for not answering promptly to your message.  I am so very sorry about your mother.My tumors started growing again 3 weeks ago plus 2 new nodules in my lungs.  The trial I was in last year was a Phase 2, after several weeks of cat scans, blood tests, etc. I qualified for a Phase 1 Trial. The Phase 2 Trial kept me going for a year - then the oncologist gave my body a rest for 4 months or when the tumors started growing. (This rest was extremely important for my body and I realize it now.)I am 68, my cancer was diagnosed Sept 25, 2006, and the treatments which I explained in my letter (which keeps growing and duplicating on this site for some reason) were hard on me.  I was very healthy and very strong and independent when I was diagnosed.  Last year has taken its toll on me but it gave me 1 1/2 years to be with my great-grandchildren, grandchildren, children, relatives and friends. I would not say last year was 100% quality year. But it had its good moments and memories.This Trial I am on now requires me to go to Nashville EVERY week (which is a 3 1/2 hour drive from our home one way).  Some weeks it will be for 1 day and some weeks it will be for 3-4 days.  They are hoping to halt the growth of the tumors.  We won't know if this treatment is working for about 4 more weeks, but last week my liver enzymes had dropped a tad which I hope is a good sign.  I will be on the 2 oral chem drugs 2 weeks and then off 1 week.  There are side effects and so far the worse one has been terrible fatigue and intense muscle pain. There are some more that I hope I don't get.(I am also only half as strong as I was when first diagnosed.)I can not in good conscious advice you on what your 81 year old mother should do.  Once I figured this horrible diagnosis out and realized there was no cure nor was it operatable I went into the Clinical Trial for 2 reasons.  One of course was to buy me some time to get my affairs in order, the other was in hopes I could help them get closer to a cure for this horrible beast.  They will eventually get a cure but it takes these trials to accomplish that and my oncologist Dr. Greco is an expert in this type of cancer and he has been working on this for 15 years.I will know when the time is right to quit fighting and I will die with dignity with the help of Hospice and my Internist.I know this probably isn't the answer you were wanting - death is a very private matter, and your mother is right to be concerned with quality of life. But only she and you can make that decision.I will keep you and your mom in my prayers and please keep me posted.Your friend,JackieBHi, Jackie, my name is Terri and I guess I'm your neighbor as I live in East Tennessee.  The reason I'm replying to this message is that you mentioned you are going to Nashville for a clinical trial.  I just recently have been referred to Dr. Khan W. Li, a neurosurgeon, for a consultation on the spinal cord lesion that has disabled me since May.  Now let me explain a little bit about my situation.  I'm 54 in August, by the way.  On May 4 this year all my lower extremities went numb.  After weeks of MRIs of the head, lumbar, and cervical (which is how they found the lesion) and a referral to a neurologist, he diagnosed me with Transverse Myelitis, but he was convinced that the lesion is possibly malignant.  So he ran more tests including a lumbar puncture to rule out Multiple Sclerosis, a PET scan, which showed a problem with my thyroid, and a fine needle biopsy of the thyroid.  The FNB indicated a "follicular neoplasm pattern" after which I was referred to a hematologist-oncologist who referred me to a surgeon.  The surgeon removed my whole thyroid on Sept. 13th, thinking that this was the primary cancer source, which turned out not to be the case.  So now, until we can prove otherwise, I feel that I may be in the CUP catagory.  We know that the lesion is in the spinal cord, and my neurosurgeon in Knoxville is wanting a tissue sample or biopsy or both, whatever he can get so we can start treating this thing.  I've been waiting 2 weeks on this referral and I'm hoping there will be no more delays.  I was wondering where you are going for the Clinical in Nashville?  I'm like you, we're 3 1/2 - 4 hours away from Nashville.  With my back the way it is, it's going to be tough to make that drive on Tuesday.  I know my situation is a little different than yours, but I can totally relate to the unknown primary aspect, and it scares me quite a bit, also my grown children.  I've had to wait so long, it seems to get to this point and my symptoms are getting worse and adding on, like the peripheral neuropathy in my legs.  Hope you are doing well.  Good luck with all your treatments.   Terri in Tennessee    terrih Sat, 20 Sep 2008 00:00:00 GMT Hi,It's been quite a while since I posted on this site, but perhaps someone has a situation somewhat like mine.I was diagnosed August 1 2007 with CUP. I had several series of chemos following a biopsy of my liver. I am 57 yrs old.There were several tumors in my liver, found accidently when I had a CT scan of my lungs - trying to diagnose a persistent cough. I've had Cisplatin, Carboplatin, Taxol, and nothing changed in any tumors. Then they gave me two "rests" totaling 14 weeks, and in Feb 08 they told me that one of the tumors grew a bit. They put me on the oral chemo Xeloda and I've been on that ever since. They also "re-looked" at my biopsy and told me that now the best guess was that I have bile-duct cancer.In the meantime I changed oncologists - same cancer center, but to a Dr who specializes in GI cancers. I've been seeing him for 4-5 months now and things have changed a bit! They don't seem to buy that it is bile-duct at all and are treating me again as if it is CUP. My MA told me last week that there has Never been any growth that she could see in my records or CT scans! When I told her that was why they put me on Xeloda in Feb, she just hemmed and hawed.  HMMMMMMMMMMMMMMMMMM.My last CT scan they also did a PET scan, which showed nothing. Evidently my first PET scan back in Aug 07 didn't either - while they know it is an adenocarcinoma, it doesn't show any liveliness on a PET the first time either - evidently PETS don't work for me.Now the plan is to stay on Xeloda (2 weeks on, one week off) at a lower dose (3 500 mg pills 2x/day vs 4 previously) for 3 more months. Then it will be close to a year on Xeloda with no change (assuming no change in the mean time) At that point, they suggest that I just stop treatment. Period. And wait until something grows - with CT scans every 3 months.This scares me to death, but on the other hand, my prognosis when first diagnosed was 3-11 months and it's now been 13 months and I don't have any real symptoms other than reactions to chemo, which have been mild except for the fatigue. So, stopping chemo for a while sounds good to me. I am scared that the cancer may start to grow again, and get fast as compared to how slow things are moving right now. I'm afraid they might have been able to do SOMETHING else while I am still healthy.Any thoughts or comments? Any one else have a similar situation?All the best,Patti   pattib Sat, 20 Sep 2008 00:00:00 GMT Hi Patti,My Mom was recently diagnosed with CUP.  The tumor in her lymph node was found when she had problems with pain in her lower stomach right hand side into her back.  They thought she had a kidney stone but when that was not being resolved they explored further and gave her a pet scan and showed a hot spot near her kidney area int he lymph node.  Confirmed after biopsy that it is adenocarcinomo.  We were able to get my mother into Moffitt for a 2nd opinion and it was confirmed CUP.  She is now on chemo for 6 cycles (gemzar & Taxol)  She has lost alot of weight and seems to have discomfort in her lower abdomen area now.  Pet Scan scheduled this Wednesday to see if there is any additional activity. After her six cycle chemo if there is no change or the cancer shows progression,  she will go back to Moffit and stay there for trial.  This is very new to us and we are confused and frightened.  If there is anything you can suggest or add we would be greatful.  Her Oncologist doesn't have another patient with CUP,  but we told by the Moffitt team that he was giving her the proper chemo treatment at this time.  Appreciate any input you can give us. Cocoe          Cocoe Mon, 22 Sep 2008 00:00:00 GMT  On 9/20/2008 pattib wrote:Hi,It's been quite a while since I posted on this site, but perhaps someone has a situation somewhat like mine.I was diagnosed August 1 2007 with CUP. I had several series of chemos following a biopsy of my liver. I am 57 yrs old.There were several tumors in my liver, found accidently when I had a CT scan of my lungs - trying to diagnose a persistent cough. I've had Cisplatin, Carboplatin, Taxol, and nothing changed in any tumors. Then they gave me two "rests" totaling 14 weeks, and in Feb 08 they told me that one of the tumors grew a bit. They put me on the oral chemo Xeloda and I've been on that ever since. They also "re-looked" at my biopsy and told me that now the best guess was that I have bile-duct cancer.In the meantime I changed oncologists - same cancer center, but to a Dr who specializes in GI cancers. I've been seeing him for 4-5 months now and things have changed a bit! They don't seem to buy that it is bile-duct at all and are treating me again as if it is CUP. My MA told me last week that there has Never been any growth that she could see in my records or CT scans! When I told her that was why they put me on Xeloda in Feb, she just hemmed and hawed.  HMMMMMMMMMMMMMMMMMM.My last CT scan they also did a PET scan, which showed nothing. Evidently my first PET scan back in Aug 07 didn't either - while they know it is an adenocarcinoma, it doesn't show any liveliness on a PET the first time either - evidently PETS don't work for me.Now the plan is to stay on Xeloda (2 weeks on, one week off) at a lower dose (3 500 mg pills 2x/day vs 4 previously) for 3 more months. Then it will be close to a year on Xeloda with no change (assuming no change in the mean time) At that point, they suggest that I just stop treatment. Period. And wait until something grows - with CT scans every 3 months.This scares me to death, but on the other hand, my prognosis when first diagnosed was 3-11 months and it's now been 13 months and I don't have any real symptoms other than reactions to chemo, which have been mild except for the fatigue. So, stopping chemo for a while sounds good to me. I am scared that the cancer may start to grow again, and get fast as compared to how slow things are moving right now. I'm afraid they might have been able to do SOMETHING else while I am still healthy.Any thoughts or comments? Any one else have a similar situation?All the best,Patti  Hi Patti,My Mother has just been put on Xeloda.  She will begin today 6 pills a day for two weeks.  She was on Gemzar and Taxol but her recent PS shows enlargement of the tumor in her lymph node and activity in the liver.  She is 79 years old and a fighter but I believe she is beginning to lose hope.  Can you give me your experience with Xeloda?  I'm trying to stay optomistic but its hard when you read so many bad things about CUP.  My best to you,    Cocoe Mon, 29 Sep 2008 00:00:00 GMT Hi Patti, It is Lori here - we talked last year on the CUP boards and had alot of the same things going on. I have been wondering how you were doing and was glad to see your recent response.I am not sure how much you remember about my situation. I am 39 and was diagnosed last October with adenocarcinoma of the liver of unknown origin found by accident when my gallbladder was removed. Well...once again we are in about the same boat. I have done 11 months of Carbo, Taxol, Avastin, and Tarceva and now am being told it is time to stop treatment and wait. I had signifiacant shrinkage in my liver lesions right at first but then nothing. No growth but no shrinkage either. So I had my last treatment on Sept. 9th and will have a CT and bone scan on Dec.4th and if all looks the same I will be on the tarceva pill only and continue being monitored for any new growth.I feel exactly the same as you. Scared that this is going to be the chance for things to get out of hand. I was not given much hope at the time of diagnosis and 11 months later feel blessed to be here for my husband and 2 kids so I want to know that I am doing everything I can to keep this under "control" if there is such a thing. I won't miss chemo every three weeks that is for sure but it was a safety net and now I feel like that is going away!My doctor told me there is a new "maintenance" drug that is having good results with this type of cancer. It is called Alimpta. Have you heard anything about that? He may consider putting me on it after the first of the year depending on what the scans show so I am keeping my fingers crossed on that.Best of luck to you!!!Lori   Lomo1 Mon, 29 Sep 2008 00:00:00 GMT  On 9/29/2008 Lomo1 wrote:Hi Patti, It is Lori here - we talked last year on the CUP boards and had alot of the same things going on. I have been wondering how you were doing and was glad to see your recent response.I am not sure how much you remember about my situation. I am 39 and was diagnosed last October with adenocarcinoma of the liver of unknown origin found by accident when my gallbladder was removed. Well...once again we are in about the same boat. I have done 11 months of Carbo, Taxol, Avastin, and Tarceva and now am being told it is time to stop treatment and wait. I had signifiacant shrinkage in my liver lesions right at first but then nothing. No growth but no shrinkage either. So I had my last treatment on Sept. 9th and will have a CT and bone scan on Dec.4th and if all looks the same I will be on the tarceva pill only and continue being monitored for any new growth.I feel exactly the same as you. Scared that this is going to be the chance for things to get out of hand. I was not given much hope at the time of diagnosis and 11 months later feel blessed to be here for my husband and 2 kids so I want to know that I am doing everything I can to keep this under "control" if there is such a thing. I won't miss chemo every three weeks that is for sure but it was a safety net and now I feel like that is going away!My doctor told me there is a new "maintenance" drug that is having good results with this type of cancer. It is called Alimpta. Have you heard anything about that? He may consider putting me on it after the first of the year depending on what the scans show so I am keeping my fingers crossed on that.Best of luck to you!!!Lori  Hi Lori,I just saw your recent message and was wondering if you would share some of your experiences with me.  My Mother was diagnosed with CUP last July.  Her Onco put her on Gemzar & Taxol for the past 2 months but she started experiencing pain in her lower abdomen.  They gave her a PS and she was told that she has spots on her liver now.  The original hot spot was in her Lymph Node between kidneys.  obviously the Chemo is not working.  Now she is starting xeloda for two weeks.  Have you been on this chemo pill?  I'm not that educated on this type of cancer but learning more & more about it as I speak to people who have experienced it.  Not too easy to find.  It sounds like your doing fairly good and I'm glad to hear it. If you feel  like sharing with those of us who are new at this, I would welcome it. Thanks,Cocoe Cocoe Mon, 29 Sep 2008 00:00:00 GMT Hi Lori!Of course I remember you! There's hardly anyone else that has similar stuff going on that I've heard of in all of this time!  I'm back on the CUP board because they are now back to treating me more like I have unknown primary rather than bile duct. Who knows? I've wondered how you were doing!  I've been on the bile-duct board for quite a while.I don't know about the drug you mentioned -Alimta- is it an oral chemo??? If you do take it, please let me know what it's all about.I think they are using the Xeloda a but like "maintainence" or maybe a step-down from "real" chemo! :) Asuming no change by November tho, I'll be off everything.  I never took Tarceva, so I don't know what that's like. Does it have side effects?This last 2-3 weeks I've felt "yuckier" on the Xeloda, so my attitude towards stopping it has gotten better! It's started to chew up my stomach I think - more of this vague upset, not really nausea, but not pleasant, more acid stomach, more diarrhea for sure!!!  Not exactly fun, although not painful by any stretch! I think our bodies, even if they are taking it well, really need time to recover from any kind of chemo. Even with the risk, I'm counting on my body being stronger if I can stay off of it for a while.Who knows? We'll see!  Keep your spirits up. I'm now over 2 months past the longest prognosis I was given last August, and I'm still kicking butt! :)I'm glad to hear you get a bone scan. That's my biggest worry... just how hard are they going to look for problems? If the tumors in my liver don't grow, terrific! but will they be on top of it if it spreads somewhere else???I'll check in on you here more often - please keep me posted on how you are doing!Hugs,Patti        pattib Mon, 29 Sep 2008 00:00:00 GMT Hi Cocoe, I have not had any experience with the drugs that your mom is on except for the taxol. I also had abdominal pain right at first with it but it went away after a few treatments. I was diagnosed in Oct of 2007 and my oncologist sent me to see Dr. Frank Greco at the Sarah Cannon Cancer Institute in Nashville, TN. He has done years of research and trials on CUP - he recommended a course of Taxol, Carboplatin, Avastin, and a daily pill called Tarceva.My first scan after I started the treatment showed that my liver lesions had shrunk by 50%. After that they have remained the same with no growth. The two drugs Avastin and Tarceva are considered second line treatment and from what I understand they cut off blood supply to the cancer.I think that the tarceva pill has made the difference with me. It does have side effects but nothing to severe - causes diarrhea and some skin rashes.It is used mainly in lung cancer patients and has recently started being used in pancreatic cancer patients but is considered experimental with unkown primary so in order to get it your mom would need to be in a trial.I am not sure where you are located but a trip to see Dr. Greco would not be a waste. He really is one of the few experts out there for this type of cancer and I would be glad to give you his contact information. He came up with my treatment guidelines but I am being treated where I live in Alabama - I wish your mom the best of luck! Lori Lomo1 Tue, 30 Sep 2008 00:00:00 GMT  On 9/30/2008 Lomo1 wrote:Hi Cocoe, I have not had any experience with the drugs that your mom is on except for the taxol. I also had abdominal pain right at first with it but it went away after a few treatments. I was diagnosed in Oct of 2007 and my oncologist sent me to see Dr. Frank Greco at the Sarah Cannon Cancer Institute in Nashville, TN. He has done years of research and trials on CUP - he recommended a course of Taxol, Carboplatin, Avastin, and a daily pill called Tarceva.My first scan after I started the treatment showed that my liver lesions had shrunk by 50%. After that they have remained the same with no growth. The two drugs Avastin and Tarceva are considered second line treatment and from what I understand they cut off blood supply to the cancer.I think that the tarceva pill has made the difference with me. It does have side effects but nothing to severe - causes diarrhea and some skin rashes.It is used mainly in lung cancer patients and has recently started being used in pancreatic cancer patients but is considered experimental with unkown primary so in order to get it your mom would need to be in a trial.I am not sure where you are located but a trip to see Dr. Greco would not be a waste. He really is one of the few experts out there for this type of cancer and I would be glad to give you his contact information. He came up with my treatment guidelines but I am being treated where I live in Alabama - I wish your mom the best of luck! LoriThank you Lori for your response.  My Mom is on the West Coast of Florida.  She has been to the Moffitt Cancer Institute and has agreed to be on a Clinical Trial when the time was right.  Dr. Balducci at Moffitt wanted her to complete her Gemzar & Taxol treatments before the trial consideration to see how she would do.  Unfortunately after 5 treatments the cancer has progressed to the Liver.    Her Regular Onco has now put her on Xeloda.  She is 79 years old and obviously her age is a disadvantage.  If you would give me Dr. Greco's info I would be greatful. So glad to hear your doing well and I thank you for sharing your story with me.  Cocoe   Cocoe Tue, 30 Sep 2008 00:00:00 GMT Hi Chole,Sorry for the delay, but when I finished my note to Lori, my internet came down - I meant to reply to you both last night.Anyway, YES I am on Xeloda now, and happy to share anything I can that would help. I'm 57yrs old so the age difference no doubt applies, but it seems Xeloda is a relatively mild (er) form of chemo. I started with 4 500mg pills two times a day (8 total) back in March. The big side affect for me is the diarrhea. I am susceptible to it anyway, so it's been pretty yucky for me.  I've been on a two weeks on, one week off regimen and by the second week could tell I was getting fatigued - hard to do much without having to rest - even climbing stairs or grocery shopping or what-not. That would lighten a lot during the week "off" and then start all over again. The big side-effect the clinic worries about is "hand-foot syndrome" and that's where your hands or feet get swollen and itchy, and sometimes so sore you can't walk on your feet or use your hands. I was lucky and did not get this, although last month I got real itchy and my skin peeled a little on my hands. The itch comes and goes and is pretty mild, just annoying.After so many months of Xeloda, the last few have been more uncomfortable - my digestive system is protesting with gas, diarrhea, bloating, some pain in my right side, etc. Still nothing terribly awful, but not fun. And the fatigue lasts longer and doesn't really go away. We've cut my dosage to 3 pills 2x/day and for the session I just started yesterday, I'm only going to take it for 5 days, with 2 days off in between. Since last week I've sort of felt mild stomach upset most of the time and either don't feel like eating or am starving - nothing in between!  Clearly my stomach is protesting so much Xeloda! The plan for me is to stop taking it in November, and just go month to month doing nothing until/unless some symptoms appear and I will have CT scans every 3 months. PET scans don't show anything for me - my tumors don't "light up" so they can't tell what's happening with that procedure. Scary for me as it limits how they'd find anything new.My cancer was found accidentally and shows multiple tumors in my liver, but no place else *yea! They don't know where it came from, but it's definitely metasticised from somewhere else. The have hardly grown in over a year now but have not shrunk a bit in all this time either - and i was on the regular chemo's for quite a few series. Carboplatin, Taxol, Gemcitibine, etc. I survived those well too, as far as side effects, so, please note that I seem to be pretty strong in that way, and that may not be the case with your mom. I HOPE SO! I know I'm really lucky as this was supposed to kill me in less than a year, so, I'm doing GREAT in comparison! I hope this helps you in some way. Please feel free to ask me anything, I believe that knowing what's going on is the best medicine.Hugs to you and your family,Patti  pattib Tue, 30 Sep 2008 00:00:00 GMT I too was diagnosed last year and had Chemo only - Taxol, Carboplatin & etoposide. I feel good now and my hair is back.I found a good site in England but not many visit it. www.cupfoundjo.org  CUP is considered an "orphan cancer" so we (the ones going through it) have to let people know about it.The stats aren't great but remember they are other people's statistics. The more research the better treatment options are developed.I have a CT scan next week. They are every 3 months now.Dianne  arcticnurse Tue, 30 Sep 2008 00:00:00 GMT  On 9/30/2008 arcticnurse wrote:I too was diagnosed last year and had Chemo only - Taxol, Carboplatin & etoposide. I feel good now and my hair is back.I found a good site in England but not many visit it. www.cupfoundjo.org  CUP is considered an "orphan cancer" so we (the ones going through it) have to let people know about it.The stats aren't great but remember they are other people's statistics. The more research the better treatment options are developed.I have a CT scan next week. They are every 3 months now.Dianne Hi Diane,I will try to access the site your gave me.  It's sooo hard to find anyone with good info on this cancer.  My mother was diagnosed in July.  she almost completed her Taxol & Gemzar chemo treatments but it did not work at all.  They are starting her on Xeloda.  The cancer was only in one lymph node two months ago and now it is in the liver.  It sounds like your treatments worked for you.  If you don't mind we asking,  can you give me some info about how it started with you.  Of course I understand if you don't want to talk about it.  Anyway,  thanks for the input I appreciate it and good luck with your CT Scan next week.   Cocoe Cocoe Tue, 30 Sep 2008 00:00:00 GMT Hi Cocoe and all, Here is the contact information for Dr. Greco -He is at Tennessee Oncology/ Centennial Medical Center Nashville, Tn -  phone number 615-320-5090 He has studied unknown primary for over 14 years and has done numerous clinical trials through the Sarah Cannon (Minnie Pearl) Cancer Institute - if you google him look for Frank Greco or F.A. Greco and you will find some of his studies and publishings. There is another doctor that works closely with him named John Hainsworth that is also well known with research on unknown primary.I would recommend either of them to anyone with this type of cancer!Best wishes!Lori  Lomo1 Wed, 01 Oct 2008 00:00:00 GMT Hi CocoeI found a lump in my right groin & went to a  GP at home who told me it was "nothing".I sought a second opinion ( I'm a nurse) & within a week It was biopsied, diagnosed and life as I knew it totally changed. I had been working in Canada's north. The nurses and doctors still call & email me to see how I'm doing.I went through chemo last winter after it was determined to be CUP. I still did not understand what it was until I did my own research and of course did not like what I read.My Oncologist is great and available to answer questions almost every day. I'll be seeing her after the CT scan.We are lucky here (in Canada ) because of our health care system.It is difficult for caregivers but just be there for your mom.Dianne  arcticnurse Wed, 01 Oct 2008 00:00:00 GMT Hello,My husband is 37 and was diagnosed this past Memorial day.  We've been through 6 biopsies and had pathologists from all over the country looking to determine the type with no success.  We were given the CUP diagnosis and began a carbo/taxol treatment.  We have now done 2 and we are due for a pet scan in 2 weeks to see if it is working.  It still drives me crazy they can't figure out the type.  I see you wrote that Dr. Greco mentioned DNA testing to determine, have you heard any more info on this?  Thanks for any info. you might have and keep fighting, my prayeres are with you and all others who have had to face this difficult journey! newman Fri, 10 Oct 2008 00:00:00 GMT Hi, I talked to my doctor in Atlanta about the DNA testing and it was her feeling that “other than for curiosity sake” it wouldn’t be much benefit.  I am a little worried that if a real diagnosis came back different than the liver and lung diagnosis we are using my treatment may have to be changed (and it seems to be working).  You see drugs are only approved for certain diagnosis.  So at this moment I have decided to wait until I talk to Dr. Greco again.  I will see him in about one month. I did however do some research.  It is actually called genetic profiling.  There are a couple companies that perform the test.  Agendia CUP Print is the one that I contacted and they said the test would cost about $2000.  Some insurance may pay for it.  http://usa.agendia.com/  I know that not knowing the source is frustrating but, the only thing that really matters is knowing that the medications are working.  I did taxol and carboplatin along with avastin.  We also monitored tumor markers.  Are you doing that too? Shelley Shelley64 Sat, 11 Oct 2008 00:00:00 GMT Hi thereIf the chemo is working you know they are on the right track.I had the Taxol carbo combined with etoposide. I finished chemo six months ago and feel great.CUP is what it is. I too was stressed over them not finding a primary. Thank goodness for Dr. Greco and his research. We all benefit.Dianne arcticnurse Sat, 18 Oct 2008 00:00:00 GMT Hi Patti, My story sounds a lot like yours.  I have several tumors in my liver and lungs (and across my abdomen) found accidently.  My first two PET scans did show activity and I was on Taxol/Carboplatin and Avastin.  My tumor markers started out high and quickly went to normal.  By the third PET there was no activity and the tumors had stopped shrinking.  My two doctors couldn't decide if the tumors were dead or not.Dr. Greco wanted to play it safe and changed me to Gemzar and Irinotecan with Avastin.  There as been a little improvement in tumor size but not much.  I have another PET next week and if that remains stable my doctor may want to put me on a BREAK too.  I am not sure if I want to do that.  Like you I am scared.   I talked to another doctor that told me some of his patients just stay on a low dose chemo because they are scared too.  I havent decided what I am going to do yet.  Have your tumors shrunk or not?Shelley Shelley64 Sat, 18 Oct 2008 00:00:00 GMT Hi!Mine have Never shrunk, on anything. But they've not grown either - once they thought one did, but I guess they are debating that now too.I'm off Xeloda as of last Thursday.  We stopped one cycle early because I'd not been feeling well and it just seemed like my body had had enough for a while. Nothing terrible, just gas, stomach ills, diarrhea, pain in my side, stuff and super super tired.I'm feeling fine now, just got back from a picnic in the park actually! I'm hoping nothing will happen. I have another CT scan Dec 2nd and if that one is OK the next won't be for three more months. I'm ready for a break! Hope you're doing well -PLEASE keep me posted!Hugs,Patti  pattib Sat, 18 Oct 2008 00:00:00 GMT Hi Dianne, Was your cancer only in that lymph node or had it progressed?  How long did you do chemo before you stopped?Shelley Shelley64 Thu, 23 Oct 2008 00:00:00 GMT Hi ShelleyThe only lymph node they biopsied was the right inguinal.The CT scan indicated that the left inguinal and retroperitoneal chain was also affected. I started chemo in early December 2007 and continued every 3 weeks till late March.I've recently had some odd symptoms - night sweats, chest wall  and abdominal pain - I hope that it's nothing - like I'm now neurotic. I had a CT scan two weeks ago and see my oncologist next week.I'm at that "OK now what? stage.I find  it very frustrating.  I'm happy that I've reached the one year stage. I'd love to find more of us "CUP cakes"Dianne arcticnurse Tue, 04 Nov 2008 00:00:00 GMT Hi Dianne, I am so happy that you are one year out!  I'll tell you hearing that really gives me hope.  You sound so patient, waiting three weeks for your results.  I usually wait one or two days at the most and then go to Medical Records at the hospital and get the report myself.  My doctor has never read the results before me.  I know, I am VERY impatient.  I do know what you mean about being neurotic about new symptoms.  Previously I ignored ailments and didn't go to the doctor for anything, I just knew it would eventually go away.  I wonder if I will be the same after this ordeal.Good luck with your CT's.  I'll definately pray for you.Shelley Shelley64 Tue, 04 Nov 2008 00:00:00 GMT