Cup - Cancer Unknown Primary

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.

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.

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.

jackie

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

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 

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

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

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.

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.

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.

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.

jackie

Jackie,

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

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