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My husband had an autologous stem cell treatment 60 days ago and the dr just told us it didn't work as there are still 3 lymph nodes showing activity on the PET scan. We have been told there is no further treatment and to go home but also no idea of time

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I'm sorry to read about your

I'm sorry to read about your husband. I have a few questions:

What type of lymphoma does he have?

What other treatments has he undergone?

Any other health problems?

Are you getting a second opinion?

He was originally diagnosed

He was originally diagnosed with Hodgkins Lymphoma and we have never been given any other diagnosis, though the cancer started in the neck and jumped to the diaghram and groin area.

I know he had ABVD and radiation to his neck in 2006 but I can't remember the chemo he received in Oct for symptoms (he was feeling awful and lethargic and the chemo helped) then he had the mega chemo the day before the stem cell collection. He had autologous stem cell transplant a bit over 60 days ago. No other treatments

Generally incredibly healthy before all this and healthy through the transplant which they couldnt beleive. Ate great and maintained weight throughout until about 6 weeks ago when he got exhausted and nauseous all the time and no more eating.

Other than the virus right now no other health issues that we are made aware of.

Don't know who to go to for a second opinion as his dr is the top lymphoma oncologist at our clinic which is supposed to be a renowned cancer treatment centre.

That orderly spread sounds

That orderly spread sounds like traditional Hodgkin's. The chemo he received in October was probably a salvage regimen, and there are quite a few for HL. Same is true for the high-dose pre-transplant regimens.

As for a second opinion -- not sure what country you're in, let's say US -- even if the clinic you attend is a designated comprehensive cancer center, it doesn't mean that one expert at, say, Stanford, is equal to another at MD Anderson. You can also call the Lymphoma Research Foundation or check out the American Society of Clinical Oncology.

I don't know if you can make it to Cologne, Germany, but if so then you might consider the German Hodgkin Study Group out of University Hospital Cologne. They're at the forefront of HL research, in the opinion of many.

That's if you wanted to continue pursuing treatment. It's not something people talk about much but there's something to be said for choosing to opt out of chemo and radiation and ports and hospitals and waiting rooms as a way of possibly spending one's last months or years. I know at least two people right now who chose that route, and I believe wholeheartedly that they're far happier than they would have been if they had chosen to subject themselves to the side effects and misery of ineffective treatments. but that's a highly personal decision.

At US comprehensive cancer centers, at this point- meaning when all known treatments have run out, I think they have recommendations in place-- they either suggest clinical trials, or offer palliative care. Not much.

At any rate I know you're asking about how much time he might have, and I'm sure you've been told that no one can tell you with any certainty, and unfortunately that's absolutely true. The Mayo Clinic has a write-up about Cancer Survival Rates that effectively points out their ineffectiveness. But Hodgkin's has a very uniform spread pattern, going from node to node in a predictable way, perhaps that might help his doctors suggest how much time he has.

I'm sorry I'm not of any help, and I wish you both the best.

Try Cancer Treatment Centers

Try Cancer Treatment Centers of America. My husband has Hodgkins Lympohma and we are being seen by Dr. Redei in Zion, ILL. He is phenomenal! It sounds like the stem cell transplant was done prematurely. He will not transplant until my husband's cancer is pretty much gone. This was also the opinion of a top stem cell transplant MD at the University of Nebraska Medical Center in Omaha. They have a well respected program there, ranked 31st in the country.

CTCA will fly your hubby and you in, pick you up at the airport in a limo for a comprehensive evaluation, usually lasting 5 days and also the room is virtually free ($75 for 6 nights) and food is provided, plus a free shuttle from your hotel to the hospital. I cannot say enough about their program, staff and especially the doctor. It might be worth it for another opinion and to ask all of the questions you have. The only thing you would be out is your time.

Good luck and I wish you and your husband the best.

 
 

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