CancerCompass message board discussion started by GloriaJK on 9/8/2007 http://www.cancercompass.com/message-board/message/all,15987,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband was 10 days away from his 63rd birthday when he died of this horrible, little-known cancer.  I knew about cancers but had never heard of this, we had to ask the doctor to repeat it several times.  One other person at his funeral knew about it. JUST ONE ! And there were a few hundred people there. We went through the Emergency Room thinking it was gall bladder. That same night, Nov. 2nd, he was given a CT scan & I went home (they had said there was a mass) and they were keeping him overnight.  I returned the next morning to find him in Oncology.  From there it was one horrible diagnosis after another.  He died December 17, 2007.  It is still beyond belief to our family that he is gone and within such a short period of time. If I do nothing else, I want EVERYONE to be aware of this deadly cancer. Not enough is said, and I don't think the medical professionals have a clue. They had NO WAY of knowing where it started...my husband was very strong & relatively healthy and did go to the doctors and take care of himself with regular checkups!!! The cancer had completely taken over his liver, this is Secondary Liver Cancer.  But if you look that up, it only means that it is NOT the root of the cancer, secondary liver cancer starts somewhere else.  IF THERE IS ANY RESEARCH GOING ON FOR UNKNOWN PRIMARY (CUP), I & THOUSANDS OF OTHERS WOULD LIKE TO KNOW.  IF YOU HAVE ANY INFO ON RESEARCH, PLEASE  SHARE IT WITH US.  Thank you & my sincerest sympathy to all of you who have lost a loved one to this horror. GloriaJK Sat, 08 Sep 2007 00:00:00 GMT I am just curious if the tumor in the liver was biopsied?? Live4him Thu, 13 Sep 2007 00:00:00 GMT Yes, the liver was biopsied & scanned.  The doctor said there were so many spots on the liver, he could not count them.  The biopsy just confirmed what he already knew.  GloriaJK Fri, 14 Sep 2007 00:00:00 GMT I have secondary liver cancer with unknown primary too. Biopsy indicated possible lung, breast or upper GI, but nothing has been found. Even had a PET scan that showed nothing.Diagnosed 8/1/07 and have been doing chemo since. I'm so sorry to hear about your husband, and yes it IS a very scary diagnosis! If you hear of any funding for research, please let us know!Hugs and love you you and your family.   pattib Fri, 12 Oct 2007 00:00:00 GMT  On 10/12/2007 pattib wrote:I have secondary liver cancer with unknown primary too. Biopsy indicated possible lung, breast or upper GI, but nothing has been found. Even had a PET scan that showed nothing.Diagnosed 8/1/07 and have been doing chemo since. I'm so sorry to hear about your husband, and yes it IS a very scary diagnosis! If you hear of any funding for research, please let us know!Hugs and love you you and your family.  My heart goes out to you.  You sound so brave.  My husband received chemo designed for lung cancer, it is said to be one of the strongest combination of drugs for CUP.  He had NO lung, stomach, esophagous cancer....all were biopsied.  He was already at stage 4, he had no unusual symptoms that would have triggered alarm.  I chastise myself for not seeing anything sooner, I & my family are still in shock almost a year later.  I do not know of any research for CUP, but I recommend calling M.D. Anderson Cancer Center in Houston, TX. to see if they have a specialist who is working on CUP. Your Doc could send all your tests to the Specialist that MDA recommends in Houston to evaluate your case & work with your doctors.  If possible, go there.  We had intended to do that, but we had very little time. MD ANDERSON saved my brother's life when he was diagnosed with CLLeukemia. They helped him for 5 yrs. & when they could do no more,  they did a stem-cell transplant from our other brother & he is cancer free.  Thank you for the love you sent. And I pray that God will bless you in your search for help. GloriaJK Fri, 12 Oct 2007 00:00:00 GMT Thanks so much for your kind words! I really dislike having "unknown primary" because you can't really talk to anyone about it. They don't get that it's not like other cancers. Oh well. I'm not brave, you just do what you gotta do! They just changed my chemo today. Now I'm taking Carboplatin and Taxol instead of Carboplatin and Gemcitibine.  I'm stage 4 too because there are 4 masses in my liver, but even though the prognosis is totally awful, no one really knows what will happen. My CT scan showed no growth after 2 cycles with Gemcitibine, so at least that is 2 months to the good!My big problem (other than the cancer itself of course!) is the money. I'm now on State insurance, which is good, but I am my sole support and I can't work full time anymore. I don't know if I can go out of state for anything. I doubt it. I spend most of my time stressing about how I'm to pay rent and utilities and phone! It takes 6 months to wait for Social Security Disability and that's at the far end of my prognosis at this point. I have NO CLUE how someone is supposed to live for 6 months on virtually nothing. Sigh... my problem <grin> at least I'm still here to complain about it!Please don't feel guilty about "not knowing" I didn't know anything either - no symptoms, and I was seeing my primary doctor and testing everything for a cough that wouldn't go away. I finally got "allowed" to see a pulmonary specialist after a 4 month wait and she's the one who ordered a CT scan of my chest. Incidently to that they could see part of my liver and they could see the tumors. That's how they found I even HAD cancer. No one knows why these things happen, but the least amount of good is done by feeling guilty over what you "didn't" do!  Blessings to you and your family, I hope you heal soon from the immediate pain and continue to grow and thrive happily and with good health. My Dad died in an accident when I was 9 yrs old. Hey, it still "hurts" but you do get past that most awful sense of loss.Hugz,Patti   pattib Fri, 12 Oct 2007 00:00:00 GMT I have recently been diagnosed with unknown primary Stage IV - It is an awful diagnosis - almost like a joke really. You have metastatic liver cancer but no one can tell you where it is coming from. Not what you expect at the age of 38. But the good news...There is a study for this type of cancer. It is in Nashville,Tn at the Sarah Cannon Cancer Institute. One of the leading doctors for unknown primary is there - Dr.Greco - he has done years of trials and research on this. I have been started on 2 chemo drugs, carboplatin and taxol, and then 2 other drugs that are part of a clinical trial for unknown primary - tarceva and avastin. I hope that information helps - if you need contact numbers I can get those. There is a place there called Hope House where you can stay free of charge during treatment. I wish you the very best - this is the first place I have come across where someone besides me has this diagnosis. Even though I hate that anyone else has to go through this - it does help to know I am not the only one with this crazy cancer. Lomo1 Wed, 07 Nov 2007 00:00:00 GMT Thanks for responding! You're the first person I've heard of too! PLEASE send me any information you can about this RX in Tennessee. I'm very interested! I'm taking Carboplatin and Taxol too, and am very interested in anything that might help. Best wishes to you! You can reply privately if you wish, but since I'm so happy to hear about unknown primary, there may be others as well.Best Wishes! pattib Thu, 08 Nov 2007 00:00:00 GMT There are 2 trials going on now at Sarah Cannon for the unknown primary. The one I am in has me doing carbo and taxol every 3 weeks and then for the "trial" part I am getting Avastin every 3 weeks along with the carbo and taxol and then I take tarceva, a pill, everyday. The Avastin and Tarceva are called targeted drugs. They go after the blood supply that feeds the cancer and shuts it down. The doctor actually told me if my liver masses shrink enough from these drugs then I can maybe have a liver resection. That is the first anyone said that to me - before I was told it was not an option. Also - this is guaranteed to be the real thing - they do not use placibos. My situation sounds very similiar to yours Patti - I went in for an ultrasound of my kidneys and they saw the spots on my liver and said they were most likely benign hemangiomas but I should have more tests done. Well - long story short - I had to have my gallbladder removed at the end of September and I got the surgeon to biopsy the spots on my liver while he was in there and it came back adenocarcinoma. It could be breast, colon, lung, pancreas - but nothing has shown up on any of the tons of tests I have had - including a pet scan.I do not live in Tennessee by the way. I live 2 hours from Nashville in Alabama. Different research hospitals all over the country can join in these studies. My doctors here are acting as an "arm" of the study so that I can be treated here and not have to make the trip to Nashville. But as far as the 2 drugs for the clinical trial - you sign a form to let them use whatever information they can get from your treatment and they supply the drugs to you at no cost. The carbo and taxol still is paid by insurance.There is a website - www.sarahcannonresearch.com that has the contact information. The doctor is Dr. Greco or Dr. Hainsworth. Both specialize in unknown primary.I hope this information helps. Please email me privately if you would like. I am interested in hearing more about you and how you are doing.  Best wishes!Lori     Lomo1 Thu, 08 Nov 2007 00:00:00 GMT Hi Lori,I sent you a private reply, but am not sure it worked - please let me know.Our situations are so similar it's amazing!I have tons of questions.What was the original surgery for? Totally unrelated?How many masses do you have in your liver?What did you first do? How did you hear about this program in Nashville?I could go on and on, but don't want to drive you crazy! :-)I'm 56 yrs old and thought I am way too young! I had no idea anything was going on at all.Hope to hear from you again!Patti pattib Sun, 11 Nov 2007 00:00:00 GMT Hi Patti,I did not get a private reply - I am not sure how that works so I will just post on here. Yes - My surgery was totally unrelated to my cancer. I had awful pains and thought I was passing a kidney stone. Went to the ER and found out it was gallstones. At that time I knew I had spots on my liver from a previous ultrasound but was told they were benign - The surgeon did the liver biopsy while he was removing my gallbladder and the pathology came back as metastatic cancer. I went immediately to an oncologist. So my oncologist here started trying to find where the cancer in the liver was coming from. After all of the scans and bloodwork did not show any primary source, he was at a loss and told me about the doctors in Nashville. So I went to see Dr. Greco in October and he is the one that came up with the treatment plan that I am on. He is one of the  2 doctors I told you about in Nashville that have been doing research on Unknown primary for years and years. If you do any searching online you will probably see their names listed as sources in most of the articles out there. I have had my first treatment - my second will be on the 20th - I have been taking the tarceva pill since Nov.1st. I am having a few side effects from the pill - rash and upset stomach. My scalp really hurts - I think that means my hair is about to go. How about you? How are you doing? How many treatments have you had and what side effects are you having? Has your unknown primary spread to the liver only? I am like you - I have tons of questions. Please fill me in on what you have been told by your doctor and how things are going for you.  Oh - I have been told there are around 14 lesions on my liver. Most are small but 2 of them are greater than 6cm.I hope you are doing okay and you have been in my thoughts. This whole ordeal just STINKS bigtime!! Stay strong and I hope to hear from you soon. Lori     Lomo1 Tue, 13 Nov 2007 00:00:00 GMT Hi again, Lori!I clicked the button that said "send private reply" and it gave me a message form, but apparently it didn't work.I had 3 (of 4 planned) chemos with Carboplatin and Gemcitibin (sp?) starting in Sept. I was diagnosed officially on 8/1/07 but they spent most of August looking for a primary, getting another CT scan, etc. I had an entire body PET scan and a brain MRI too. Nothing showed up.Those first 3 chemos were pretty uneventful. A little acid stomach, but that was about it. Some fatigue.Then they took a CT scan and it showed no growth, no shrinkage either, but no growth so they said they would keep Gemcitibin in "the back pocket" as it seemed to at least delay growth. They wanted to try Carboplatin with Taxol, so I got one treatment of that in the middle of October instead of the 4th (2 series of 2) of the first set. Like you, I have 3 weeks in between chemos on this formula. I got sicker on the Taxol/Carbo. about the 3rd day after I felt like I had the flu and then my bones and muscles really started to ache. That lasted about 3 days, tapering off pretty well. Then ok for a weekI went home to the Midwest for 10 days and saw all of my family and an old friend. While I was there, my hair all fell out. Well, most of it. I have some fuzz left! That was weird!  When I got back to Tucson in time to take a 2nd dose of the Carbo/Taxol on November 1st. This one was tougher in that the bone/muscle pain lasted longer - more like 5-6 days, tho only at night after 3 days. I clearly lost some energy though and am more fatigued now than before this all began.As of Wed/Thur I am feeling FINE and back to "normal". I have the next treatment the Monday after Thanksgiving - assuming they still want to stick to that after the next CT scan which is right before Thanksgiving. We'll see what it shows. They hope it shows shrinkage. Obviously so do I!!!Everyone is pleased I'm doing so well. I have no pain other than what I mentioned and have a good attitude. The hair thing got to me for a while, but I'm dealing with that ok now. HATE scarves, but like the wig even less, so I pretty much just throw on a scarf and forget about it.I'm still working at my old job - but part time now. In fact I'm LATE! gotta dash. Tell me more about how you're doing!Oh, I have 4 masses, none over 3-4cm. (I think that's it, I'll check)Hugs,Patti  pattib Thu, 15 Nov 2007 00:00:00 GMT Hi Patti -I am about to leave for treatment number 2. My hair is coming out in big chunks so I figure after this it will be gone. I was thinking that the hair loss would not bother me but now that it is falling out I am thinking it is going to be a little more traumatic than I expected!My side effects from the first treatment were pretty much the same as yours. Aches and joint pain with the 3rd day being the worst. I feel fine now - just get tired more easily. I am hoping this next treatment is the same - a few bad days then back to normal. I am still working also - my company has been great. They are letting me work when I can. The tarceva - that is the pill I take- is making me really tired and has given me a lovely rash. My face looks like a hormonal teenagers. Oh I have been meaning to ask - Did you have a port put in or are you getting an IV each time?  Let me know how the scans go - I hope you get good news!Well - I better run but have a Happy Thanksgiving!Lori  Lomo1 Tue, 20 Nov 2007 00:00:00 GMT Thanks! Hope you are having a good Thanksgiving too! We had an early T-day when I visited my family in Minnesota late October, so I'm not doing much today. Actually I'm roasting a turkey! I love the whole process, so it's my "fun" for the day. Turkey, stuffing, mashed potatoes & gravy - the works! I don't have a port. They do an IV each time. My doc suggested to do it that way as long as they can find a good vein. She said she was more concerned with avoiding infection. Given that I have a history of coughing/breathing probs, I think it's probably wise in my case. What about you?I had my CT scan yesterday, and am scheduled for a Dr. Appt, and chemo on Monday - starting at 8am! (ugh, I'm not a morning person!) I'v VERY anxious to hear what the scan shows. I'm praying that things are shrinking!I'm a lot more tired too. This time it seemed longer than last time, but then I'm not sleeping as well. My doing - I need more self-discipline to get to bed earlier I think!  Are you doing much about diet, etc?Looking forward to hearing from you again, all the best!Patti   pattib Thu, 22 Nov 2007 00:00:00 GMT Hi Patti -How did everything go? I hope you received good results from your scan!I had my treatment on the 20th and it really wiped me out. The avastin was added this time so I am not sure if that was what did it - but I have been in the bed since last Tuesday. Today is the first day that I feel human again. I did get the good news that my liver enzymes which have been so elevated have dropped by half. My doctor thinks that he feels it is a sign of shrinkage. I don't get a scan until the end of December but I am hopeful that the bloodwork showing change is a positive sign!I do have a port. I don't have good veins - the one decent one that I had was a mess because of all the testing and procedures I had done prior to treatment so my doctor wanted me to have a port placed. It is not to bad - I forget it is there really.I am having a heck of a time with my diet. I have acid stomach and runny bowels and just can not find any food that works or even tastes good. I am living on cup of soup and gatorade. How about you? Are you having any problems? Luckily for me I have weight to spare.Well - let me know how everything is going. I am keeping my fingers crossed that you got good news and you have shrinkage!!Hope to hear from you soon! Lori Lomo1 Tue, 27 Nov 2007 00:00:00 GMT Hi!I'm sorry to hear you weren't feeling well. Has that gotten any better since? I had acid stomach and lots of gas & loose stools, but never lost any appetite. (I have PLENTY of reserves, so I could have stood some loss of appetite!) I'd have a few days of not being all that hungry, but that's it.My CT scan results showed no growth... no shrikage either. They say this is "good" news, but they haven't ever "grown" so I find it very frustrating. My doctor wants me to wait 6 weeks now w/o any chemo and do another scan in January. I'm grateful to have a break from all the chemo, but I am also wondering if ANYthing will shrink these things. I want a remission, not just status quo, I guess. It feels too much like just waiting around for the masses to grow so we can try something else. Not my style!I also found out that I have MORE than 4 masses in my liver. This ticked me off as I was told that I had 4 and what their measurements were. Now my Dr. said "oh you have more than that, they just measured the four" and she took me in to see my scan and pointed out a lot of fuzzy lighter colored shapes in my CT scan. So, I guess no one knows how many I have! You'd think someone would have mentioned that! I'm a bit discouraged at this point. I just can't get "happy" about no change. I guess I need to find out more about what that could mean.Everyone acts like I should be pleased, but for me, right now anyway, it seems to be just more uncertainty about my life, and that's hard to take. I mentioned the study you are in to my Dr. who knew about those trials, but she said that I would have to pay for the extra drugs. She said if nothing changes in January's CT I might consider a trial, but that's all she said at this point.I dunno, I am going to put my mind on the holiday's and spending Christmas with my daughter and try not to worry about anything for a month. I sure hope YOU get some great shrinkage in your next scan! Make sure to keep me posted!Happy Holidays!    pattib Thu, 29 Nov 2007 00:00:00 GMT Hi Ladies (Patti & lori) ~ I hope you don't mind me reading through your thread.I am currently caring for a 50 yr old family member with the same diagnoses. He has had the liver mets for at least 5 years (some ultra sound findings were ignored by his liver specialist back then). The PET showed up no primary & the liver tumours are starting to grow more rapidly now. The biopsy suggest upper GI or stomach as a primary source. Similar to your ladies he has 6 tumours some close to 4cm.I feel so frustrated - he saw his specialist yesterday who basically said she isn't willing to do anything yet until they carry out further scans (with a different isotope - I think it's MIBG) + an endoscopy to find the primary.How long did you ladies wait for ANY kind of treatment after finding the liver mets? I hope you are both keeping as well as can be expected.     Nealie Fri, 14 Dec 2007 00:00:00 GMT  On 12/14/2007 Nealie wrote:Hi Ladies (Patti & lori) ~ I hope you don't mind me reading through your thread.I am currently caring for a 50 yr old family member with the same diagnoses. He has had the liver mets for at least 5 years (some ultra sound findings were ignored by his liver specialist back then). The PET showed up no primary & the liver tumours are starting to grow more rapidly now. The biopsy suggest upper GI or stomach as a primary source. Similar to your ladies he has 6 tumours some close to 4cm.I feel so frustrated - he saw his specialist yesterday who basically said she isn't willing to do anything yet until they carry out further scans (with a different isotope - I think it's MIBG) + an endoscopy to find the primary.How long did you ladies wait for ANY kind of treatment after finding the liver mets? I hope you are both keeping as well as can be expected.     Hi! Of course not, please join right in! I'm just responding to the idea that your guy has had liver mets for 5 years! and NOW they are growing. I really appreciate how that's not good news, but right now for ME, 5 years sounds like a lot.It was about a month (August) that I waited for test results, etc. before they decided to give me a first run of chemotherapy. It was a Long month! Today, as I sit here about 1/2 way through my 6 weeks of no treatment before I can get another CT scan, that month doesn't look as bad. Waiting is a pain. The good news that mine didn't grow last month and having this break is doing one good thing - I'm getting some energy back! It was not easy to realize how tired I was until I started feeling better. So maybe those waits aren't ALL bad. Build up your energy, rest, eat good food, do all the things they tell you to do because once you are in treatment, it's really tough on your body, soul, sense of humor, the works. I've had a bad couple of days (my cat and sole companion was attacked by two viscous dogs and had to have his jaw wired (long story) but I just brought him home and he's going to be fine. I'm looking forward to a happy holiday with my daughter and hope you all are enjoying the season too!All the best,Patti pattib Fri, 14 Dec 2007 00:00:00 GMT Hello:I too, have unknown primary. I am new to this site and you both have inspired me to write on this string. I wanted to at least join in so you both know there are more of us out there...I was diagnosed in late June 07, with Stave IV Unknown Primary, with a large tumor in my right lung and multiple mets on on my spine, pelvis, and hips.While EVERYONE is convinced it is simply Lung Cancer (looks like a duck, walks like a duck, sounds like a duck...), the biopsies said upper GI and my blood markers remain high for upper GI, although, I too, have no other evidence of upper GI cancer (not on the Pet/CT scans, not after either a colonoscopay or endoscopy).I, too, found out about the cancer in a strange way...  I was having severe back pain and after 12 months of screwing around with chiropractic, I finally got my primary physisian involved asking for MRI's and seeking out an orthopedic. After 1 month of PT (to no avail and now adding hip pain in the mix), a second MRI of my pelvis led to the Ortho driving to my house when he got the report (he is a dear friend from church) to tell me I had secondary bone cancer. Then it was off down the rabbit hole with testing, etc... You all know how that went.I started off with (3) shock and awe doses of Carbo Platin, Taxol, and Gemzitbene which knocked me very hard. Serious "chemo brain", loss of appitite, sour stomach, fatigue, and trouble sleeping. Complications with back pain led to me needing to radiate certain of the bone mets. So we dumped the Gezar (can't do Gemzarwith radiation) and continued the Carboplatin with the Taxol. I handled the side effects much better with fatigue my main issue.I had my "judgement scans" just this week and I can say God has blessed me greatly with healing. All of my tumors have responded and shrunk from 30 to 80%, depsnding on the location. My blood counts for lung are way down, but strangely, my blood counts for upper GI grew higher.I still have a ways to go and will need more chemo. It looks like we are going to add Gemzar back in the mix (to use all three) to attack the upper GI story, which has me nervous about all the side effects again.I have done all of my treatment in Florida so far, but have been transferred by my company to Chicago. And so I need to find a new team. I am visiting the Univ. of Chicago next week and possibly Northwestern. Any suggestions anyone?Eric Unkn_Lung_Bone Fri, 14 Dec 2007 00:00:00 GMT Well Hi Eric! Welcome to our "unknown bunch". :-)Congrats on the shrinkage. You talk about your markers changing and they never mention that to me, so next appt. I'm going to ask. I have no idea what mine are showing anymore.How old are you? So far we're ranging I think from 38-56. Since my birthday is the 28th it will be 38-57 soon! You're moving to Chicago! What a trip! My daughter lives there now and she is really pushing ME to move there to be closer to her. I am stuck in Arizona which I pretty much hate. I was wondering too what kind of care I could find there, so please share whatever you find out. Have you managed to keep working through all of this? How's that been going? Is the move to Chicago something you want? Did you say where you live now (I hate that you can't see the email you're responding to when you're typing!!) Anyway, it's great to hear from you and please continue to share. How's your family taking all of this, are members moving with you? How much time do you have to organize?Sorry, I'm a question machine. Hope you are enjoying the holidays!Patti pattib Sat, 15 Dec 2007 00:00:00 GMT Hi !I have been away for awhile and see I have missed lots of activity! How is everyone doing? Patti how is your cat? That must have been just awful!Well - I have had 4 treatments now and the last 2 have really zapped my energy. My doctor also upped my dose of Tarceva to 150mg and that has been just awful! The side effects from that pill are unreal - but I will put up with all of them because I finally got my first scan since I started treatment and my liver masses have shrunk by 50%! I have one more treatment of the taxol/carbo/avastin to go and then if there is more shrinkage I may be a candidate for a resection or for something called radiofrequency ablation. I will continue with the tarceva and avastin for up to a year from what I understand.I am hopeful about the resection - for some reason I think it just seems better to me if they cut what they can out. While I was waiting for my scan I met a woman whose husband had just been diagnosed with unknown primary. I still think it is a crazy diagnosis but that now makes 2 of us in the same area with it. Well - I hope everyone enjoyed the Holidays and please let me know how you are doing!Lori  Lomo1 Fri, 11 Jan 2008 00:00:00 GMT Hi Lori, Patti, and Eric,My name is Diana.  I have a good friend who is 47 and was diagnosed with adenocarcinoma of unknown primary with mets to the liver.  Both lobes of her liver are affected with mutiple lesions ranging in size from 2-6 cm.  She is participating in a clinical trial (UNKPRI 19) sponsored by Dr. John Hainsworth.  My friend Betty has completed 4 rounds of chemotherapy.  Her last scan showed that the lesions were stable.  She has had only about 20% shrinkage total.  Her oncologist states that surgery is not an option at this point.  She will continue taking Tarceva and Avastian until things change or 1 year passes. Lori, do you feel that we should go to Nashville to see Dr.Grecco?? Lori, you may be a candidate for high tech liver surgery.  Dr. Cataldo Doria in Philadelphia does liver resection.  I talked with him on the phone personally.  He is reviewing Betty's scans to see if she is a candidate.  If you are interested, please let me know, and I will give you his direct number.  Can you tell me a little more about  the radiofrequency ablation??  The oncologist never mentioned that to us.  Good luck to all of you!!!Diana diana0725 Wed, 16 Jan 2008 00:00:00 GMT Hi Diana,It sounds like your friend is on the exact same treatment protocol that I am on. Dr. Hainsworth and Dr. Grecco are in practice together at Sarah Cannon so that is probably why. They are supposedly the leading experts out there on this unknown primary so I feel good about that.I am no longer under Dr. Grecco's care - he came up with the treatment plan and I am being followed by an oncologist here in Alabama. I will have my last treatment of the Carbo/taxol/avastin next week and then I will continue on the avastin and tarceva for a full year and then I am thinking that is when they will address the surgery question.  Radiofrequency ablation is where they insert a probe into each lesion and basically burn the lesion to destroy it. I would personally feel better if I could have a resection but if that is not an option that would be the next best thing. I am very interested in more information on the doctor you mentioned. Please keep in contact and let me know if he thinks your friend is a candidate for resection. How is your friend doing with the Tarceva? I have had to go back down to 100mg - to many bad side effects from the 150mg. Best of Luck,Lori     Lomo1 Sun, 20 Jan 2008 00:00:00 GMT Lori,Thanks for sharing the information regarding the ablation.  It sounds like a good alternative.  Betty is still taking the 150mg of Tarceva.  The rash is the most bothersome of the side effects.  She suffers from occassional diarrhea as well, but so far, that is manageable.  I am waiting for Dr. Cataldo Doria to return my call.  He is reviewing Betty's previous CT scans to see if she is a candidate.  His direct number is (215)955-8708.  Instead of cutting, Dr. Doria uses a surgical tool called a CUSA.  It uses ultasonic waves to aspirate, or suck out, liver cells.  Another surgeon follows with a tool called a TissueLink.  Hot sterile water flows through the tip of this probe and seals the blood vessels upon conatct.  It reduces the need for blood tranfusions after surgery and cuts recovery time in half.  Betty's largest liver lesion is 8.1 cm in diameter.  The second largest liver lesion measures 15 mm in diameter.  The remainder of the liver lesions measure less than 1 cm.  The peripancreatic lymph node measures 4.4 cm in diameter.  I do not think she is a candidate for high tech liver surgery, but we must exhaust every option.  Your lesions are much smaller, so it may be an option for you.  Have you had many side effects from chemo??  Betty suffered horribly through those 12 weeks.  I am hopeful that the tarceva and avastian keep things stable for a while, so she can have a break.  Betty is hopeful to return to work in mid Feb.  She teaches math to 6th graders.  I am taking Betty to Nashville to see Dr. Greco next Wednesday for a 2nd opinion.  I am hopeful that maybe he can determine the primary site.  Good luck with your last chemo treatment next week.Diana diana0725 Wed, 23 Jan 2008 00:00:00 GMT Hi Diana,Well I went yesterday for what I thought was my last treatment - turns out I am going to have 1 more in February and then have another scan done and then may have to have two more treatments for a total of 8. Not at all what I was wanting to hear - If that is what needs to be done then so be it I am just so wiped out right now. The side effects from each treatment are getting progressively worse. I have an 11 and 12 year old and am trying to continue to work which has been difficult but luckily I have a strong support system and my husbands company has been very good about letting him have time as needed to help me.I know you friend feels very blessed to have your help and support!!I think it is a great idea to see Dr. Grecco and get his opinion - he is about the best out there in dealing with this unknown primary. Well I wish your friend the very best of luck and she is very lucky to have a friend like you! Please keep in touch. Lori      Lomo1 Thu, 24 Jan 2008 00:00:00 GMT Hi yall, this is so nice you all have each other to talk to. Not much info out there. Now let me ask you, is unknown primary the same as Primary Peritoneal Carcinoma? My mom started her journey of this last May. STill dr. are having a hard time diagnoseing her and told her to get ready for debulking surgery next week. Right now she has cancer in her liver, abdomen and lymph nodes. And also has breast cancer cells but no masses in her breast. She also has ovarian cancer cells showing but she has no ovaries. its all so confusing. Can someone shed some light on me. Its gonna be a year soon and they are just not getting the ball rolling. twithers Fri, 01 Feb 2008 00:00:00 GMT Lori,I took my friend Betty to see Dr. Greco.  He was very nice, but the appointment was a little disappointing.  He agrees that Betty should continue taking Tarceva and Avastian.  He offered 3 other chemo regimes if Tarceva and Avastian stop working.  While it is reassurring to know that the doctors agree, we were hoping for more.On a happy note, Betty received some exciting news. Dr. Doria thinks he may be able to help Betty.  He is going to have another oncologist Dr. Brian Carr review her CT scans.  We were shocked.  We have been told by 2 doctors that surgery is not an option.  We are praying that Dr. Doria will be able to help our friend.How are you feeling??  Which clinical trial are you participating in??  You mentioned that you may have more chemo.  Betty only had 4 rounds of chemo.  When I mentioned more chemo, the doctor stated that the protocol only called for 4 rounds.  I don't think she could have handled another round because her side effects were so severe.  Betty has taken a leave of absence from teaching.  I can't believe you are able to continue to work.  I am so glad that you have your husband and children to help you through this diffcult time.  You and your family are in my thoughts and prayers.Live well, laugh often, love much,Diana   diana0725 Sat, 02 Feb 2008 00:00:00 GMT Hi Diana -I am sorry to hear the visit with Dr. Greco was not as productive as you had hoped but the news about the other doctor sounds great! That gives me hope! I am sure that you feel like I do - it just seems as though you would have a better chance at beating the cancer if they can go in and remove what is in the liver. My chemo regime consisits of Carboplatin, Taxol, and Avastin once every 3 weeks and then Tarceva daily. I was originally under the impression that I would have a total of 5 treatments of the this and then stay on the avastin and tarceva for about a  year. Now I am told I could have as many as 8 treatments of the carbo, taxol, and avastin. My 6th treatment is on Feb.14th and then I will have a scan in March and see where I am at and we go from there. The side effects are brutal - each round of treatment seems to be a little harder. I am very interested in what happens with the doctors and surgery. Please keep me updated on how things progress! I hope that they can help your friend.Please keep in touch! Lori Lomo1 Mon, 04 Feb 2008 00:00:00 GMT  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. As all of you have stated 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 - although to be honest it has taken a year of research.)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 desperetley 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 Sarah Cannon 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 move 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(tarciva) 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 mg Erlotrim (Tarceva) 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.Dr. Greco 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.)(Yes, I go along with the statement the last year has been brutal!) 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 the horrible confusion you are going through. I go back to Dr. Greco on March 24, 2008, and I believe if the tumors are still "stable" he will still let my body rest. 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.I hope you have gained a little insight into this "beast" of a desease we are fighting - the one thing I have been able to do is research on the computer.  I wish all of you a miracle.  I certainly am not "out of the woods" but wanted to share what I have learned with you who are starting down this long road.  Please keep me posted on all of your status.JackieB 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.Dr. Greco 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.)(Yes, I go along with the statement the last year has been brutal!) 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 the horrible confusion you are going through. I go back to Dr. Greco on March 24, 2008, and I believe if the tumors are still "stable" he will still let my body rest. 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.I hope you have gained a little insight into this "beast" of a desease we are fighting - the one thing I have been able to do is research on the computer.  I wish all of you a miracle.  I certainly am not "out of the woods" but wanted to share what I have learned with you who are starting down this long road.  Please keep me posted on all of your status.JackieB JackieB Wed, 13 Feb 2008 00:00:00 GMT  On 1/23/2008 diana0725 wrote:Lori,Thanks for sharing the information regarding the ablation.  It sounds like a good alternative.  Betty is still taking the 150mg of Tarceva.  The rash is the most bothersome of the side effects.  She suffers from occassional diarrhea as well, but so far, that is manageable.  I am waiting for Dr. Cataldo Doria to return my call.  He is reviewing Betty's previous CT scans to see if she is a candidate.  His direct number is (215)955-8708.  Instead of cutting, Dr. Doria uses a surgical tool called a CUSA.  It uses ultasonic waves to aspirate, or suck out, liver cells.  Another surgeon follows with a tool called a TissueLink.  Hot sterile water flows through the tip of this probe and seals the blood vessels upon conatct.  It reduces the need for blood tranfusions after surgery and cuts recovery time in half.  Betty's largest liver lesion is 8.1 cm in diameter.  The second largest liver lesion measures 15 mm in diameter.  The remainder of the liver lesions measure less than 1 cm.  The peripancreatic lymph node measures 4.4 cm in diameter.  I do not think she is a candidate for high tech liver surgery, but we must exhaust every option.  Your lesions are much smaller, so it may be an option for you.  Have you had many side effects from chemo??  Betty suffered horribly through those 12 weeks.  I am hopeful that the tarceva and avastian keep things stable for a while, so she can have a break.  Betty is hopeful to return to work in mid Feb.  She teaches math to 6th graders.  I am taking Betty to Nashville to see Dr. Greco next Wednesday for a 2nd opinion.  I am hopeful that maybe he can determine the primary site.  Good luck with your last chemo treatment next week.DianaHi Diana,I wrote a lengthy reply regarding my experience with Dr. Greco and Carcinoma of Unknow Primary. I am extremely interested in your experience with Dr. Dorian and Dr. Brian Carr. My last treatment of Avastine was Nov 17 and Dr. Greco is giving my body a rest while tumors are lying dormant. I go back March 24 and in case tumors have started growing I want to know all my options.I wrote a lengthy reply regarding my experience with Dr. Greco and Carcinoma of Unknow Primary. I am extremely interested in your experience with Dr. Dorian and Dr. Brian Carr. My last treatment of Avastine was Nov 17 and Dr. Greco is giving my body a rest while tumors are lying dormant. I go back March 24 and in case tumors have started growing I want to know all my options.I was familiar with Dr. Carr when I decided to do the year trial with Dr. Greco but if surgery becomes an option for me in my next step I would love to know how you and your friend did and what you decided.Thank you for any information you can provide me.jackie JackieB Mon, 10 Mar 2008 00:00:00 GMT Hello everyone, I'm back!I'm sorry I lost touch with this thread, but if you remember, I was diagnosed with unknown primary last August and took 2 series of chemos. Gemcitabine & Carboplatin in August/Sept & then Gemcitabine & Taxol in October 07. Then the CT scan AGAIN showed no change - no growth, no shrinkage. So my Oncologist told me to rest for 6 weeks. The next CT again showed no change, so she said wait for 8 weeks! That was hard to do, but as some have commented, after a while, no news is good news! But I kind of fussed and my Onc said she'd have my liver tumor biopsy looked at again. And guess what??? There was a GI specialist pathologist who looked at it and he thinks it's Bile Duct Cancer as a primary, even though they've only ever seen any tumors in my liver and I have not had jaundice (big symptom of BD cancer). When my doc called me and told me this (she's going out of the country for 3 weeks) she said that IF my CT scan Feb 28 showed any growth the good news is they would try an oral chemo called Xeloda. Bad news, one of my tumors grew.  So, they want to start me on 1000mg Xeloda 2x/day. We're waiting for insurance approval to start. No one is saying FOR SURE that it's Bile Duct Cancer, so I guess I'm still "officially" unknown primary, but in effect that's how they are going to approach it. Feels weird to check out the bile duct discussion group and think "gee, I might fit in here!" :-) This has all been SO wishy washy and GI cancer is not my Oncologist's specialty, even tho I go to a large cancer clinic, I'm going to apply to Mayo in Phoenix to have them look at everything and see what options they think I might have. The mayo clinics do a LOT with Bile Duct cancer and hopefully it will do something for me. So, I apologize for the big gap here, but nothing really was happening for 13 weeks so I got to have a happy Christmas with  my daughter, and pretend for a while that I didn't "have cancer". My hair has even started to grow back - about 1/2 inch!Hugs to all,Patti in Arizona    pattib Mon, 10 Mar 2008 00:00:00 GMT Lori,Good afternoon!  How are you?  Sorry that it's been a while since I posted a message.  Dr. Doria was unable to remove Betty's lesions because of the extent of her disease and locations of the liver.  He sent her a certified letter in the US mail.  Betty suffered a minor setback last week.  She had 17lbs of fluid drained from her abdomen.  She was extremely uncomfortable and nauseated.  Her last CT scan showed signnificant shrinkage from 8.1cm to 5.2cm.  Unfortunately, she is still very sick with nausea and vomiting.  Dr Stephens has added Megase ER to help decrease nausea and increase appetite.  I have contacted another surgeon at Norton Hospital in Louisville, KY.  His name is Dr. Robert Martin.  Please see the link below for the lastest treatment for liver cancer.    They discussed how they are administering chemo via a cath in the groin directly up into the liver so the chemo is completely targeted, fewer side effects.  Higher tumor shrinkage rates, great long-term survival rates.Go to www.wave3.com, Health tab, and right now the default video is the liver cancer treatment story.  You can scroll over the picture icons to find it if it still isn't the default when you look at it.  I hope you are doing well.  Keep in touch!Diana  diana0725 Tue, 08 Apr 2008 00:00:00 GMT