Carcinoma Of Unknown Primary-Funding For Research?

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.

I am just curious if the tumor in the liver was biopsied??

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. 

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. 

 

 

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.

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 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 

 

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.

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!

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 

 

 

 

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