I am following this discussion closely because, as many of you know, our daughter was diagnosed at 32.
She got a complete response from induction therapy followed by an auto transplant and then 14 months of Revlimid maintenance when she relapsed quickly and with drastically high numbers. She tried Kyprolis (carfilzomib) but it didn't work. She also had DCEP, which only lowered the numbers in half and caused C. diff., a lung infection, and blood infection.
She was planning on doing an allo transplant with her brother as half match but her body was not in any shape to do this. In February 2015, her doctor sent us to another doctor in Philly for a clinical trial, which was a huge success in bringing the numbers down, but we don't know how long this will work. We are back again at the question of doing an allo, another auto, or another drug regimen.
Brad is in a different situation of being newly diagnosed, which would have the most success. We are trying to find out as much as we can about different options, but the most frustrating thing is that different doctors and hospitals have different opinions and protocols. One does half match allos, another says only full match, and another is biased against allos.
If you do an allo, it leaves you unable to do some of the new and promising treatments. T-cell therapy at Penn has 6 people with myeloma. It's so early, they are not sure if it's the auto transplant or T-cell therapy that is working.
Allos after relapse have 30% mortality with 20% chance of working. The measles vaccine at Mayo worked for 1 woman but not for others. The WT1 allo transplant at Sloan Kettering worked for 1 woman. Our daughter has aggressive disease and seems to respond well, but it doesn't seem to last long. What to do, what to do?
I wish you success, Brad, in making your decision and luck in it working for a long time.
Forums
Re: Allogeneic versus autologous stem cell transplant
Hi Brad,
Like you, I was diagnosed at 43 and have young children. I had my mini allo in 2011 and have been in remission for the last 3 years. Mark's allo was carefully planned to minimise GVH, mine was a last ditch effort to save my life. It is an understatement to say I am glad the allo worked.
I am on some immunosuppressants to keep the GVHD at bay; sometimes the levels of these drugs are too high and the myeloma starts to grow again. My meds are reduced and the donor system takes care of the myeloma. I am not cured, but the donor system is keeping the myeloma under control. There is no cocktail of anti-myeloma drugs that would give me the freedom I have now.
I think people (doctors, patients, caregivers) are scared of allos because the response is unknown and the outcome is unknown. Most chemo agents will have the standard list of side effects and then there are the less common side effects. I experienced some of the less common side effects of melphalan. With regards to the allo, there is a list of organs that are most likely to be targeted, but ... who knows. I have had both acute and chronic GVHD. The thing is, the side effects I experienced with melphalan and the acute liver GVHD were both life threatening. It took me 6 months to recover from the damage done by the melphalan. It took me 3 days of IV prednisolone to be released from hospital after the acute liver GVHD. 4 years later, my kidney and liver function are in the normal range.
If you are going to have an allo, then know the risks but reduce the ones you can control. For example, one of the biggest killers of allo patients in the first year is infection – Limit your exposure to people who are sick, have spare antibiotics on hand, ensure your family doctor understands the risks you face, ask your children's teachers to notify you of sick children in their class, if you garden get someone else to put out the mulch, etc. You do need to have a good dose of common sense – If your eyes are starting to go yellow it really is not the time to go for that camping trip.
All the best,
Libby
Like you, I was diagnosed at 43 and have young children. I had my mini allo in 2011 and have been in remission for the last 3 years. Mark's allo was carefully planned to minimise GVH, mine was a last ditch effort to save my life. It is an understatement to say I am glad the allo worked.
I am on some immunosuppressants to keep the GVHD at bay; sometimes the levels of these drugs are too high and the myeloma starts to grow again. My meds are reduced and the donor system takes care of the myeloma. I am not cured, but the donor system is keeping the myeloma under control. There is no cocktail of anti-myeloma drugs that would give me the freedom I have now.
I think people (doctors, patients, caregivers) are scared of allos because the response is unknown and the outcome is unknown. Most chemo agents will have the standard list of side effects and then there are the less common side effects. I experienced some of the less common side effects of melphalan. With regards to the allo, there is a list of organs that are most likely to be targeted, but ... who knows. I have had both acute and chronic GVHD. The thing is, the side effects I experienced with melphalan and the acute liver GVHD were both life threatening. It took me 6 months to recover from the damage done by the melphalan. It took me 3 days of IV prednisolone to be released from hospital after the acute liver GVHD. 4 years later, my kidney and liver function are in the normal range.
If you are going to have an allo, then know the risks but reduce the ones you can control. For example, one of the biggest killers of allo patients in the first year is infection – Limit your exposure to people who are sick, have spare antibiotics on hand, ensure your family doctor understands the risks you face, ask your children's teachers to notify you of sick children in their class, if you garden get someone else to put out the mulch, etc. You do need to have a good dose of common sense – If your eyes are starting to go yellow it really is not the time to go for that camping trip.
All the best,
Libby
-
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
13 posts
• Page 2 of 2 • 1, 2