I am very worried about my brother. He is 42 and has AML-M5 which was diagnosed in January of this year. After four rounds of chemotherapy (where his blasts would always start to reappear when his bone marrow started to recover), he received a bone marrow transplant from an unrelated but perfectly matched donor. He had and continues to have fairly extensive skin GVHD. He is now about 150 days post transplant. However, about 30 days ago, he started to develop lumps just under his skin which biopsied to be leukemic. His bone marrow and blood remains fine. His doctors are saying that they have no effective chemotherapy to treat him with and that to do another transplant within 6 months of the first transplant never turns out well. They seem to be just giving up. In the meantime, the leukemic lumps are getting more numerous and larger. Has anyone else ever relapsed with only skin lumps before? Has someone else relapsed within the first six months and gotten another transplant? If the doctors seem to be giving up but the patient and family does not want to give up, what should we do? Any help and advice would be very appreciated.
Like I said in my previous post my daughter had early transplant relapse (within the first 100 days) followed by transplant. My daughter is alive today because of multiple transplants. Her relapses were marrow/blood not skin. We saw a child who relapsed with a leukemic tumor of the eye +90 days post transplant. They had a 2nd transplant with a un-related 5/6 match 7 months post relapse and are still in remission to this day.
If your brother wants to fight but his oncologist does not you need to find a new doctor who will fight. Look around, see who has trial for relapsed AML going on. Find a doctor or trial to fit your brothers needs.
If there are any other questions you have please just ask.
I thought of something else that would be worth looking into, 2 things actually. The first is a new drug called Mylotarg which is chemotherapy used on relapsed AML patients who are post transplant. The second thing I thought of was a procedure worth looking into. It is used only for leukemia patients who have relapsed post transplant. What they do is first put you into remission, and then they contact the original donor and ask them to donate Lymphocytes, which is a much easier thing then donating marrow. Once the lymphocytes are collected they do what is called a Donor Lymphocyte infusion -or-(DLI) in the relapsed patient. The DLI should cause GVL which is Graft-Vs-Leukemia that kills off the leukemic cells. It is something that your brother should definitely look into.
Thanks so much for your very helpful advice. We have asked his doctors about the donor lymphocytes and he says that because my brother already has so much GVHD (he is grade 3 on skin and grade 2 overall GVHD), the donor lymphocytes will not help him; so they don't even want to try. We also asked about using Mylotarg because it is something he has not ever had; however, the doctors say that this drug as well as others such as interferon or interleuken or any other chemotherapy for my brother's relapse are only marginal drugs and would cause my brother to be more susceptible to infection and would therefore cause a more painful death. Another words - they are not willing to let him try that either. I am kind of torn too because on the one hand, I very much want my brother to have another chance at a cure but on the other hand I don't want him to have to go through more pain if there truly is no hope. How does one know what is best?
I can understand the pain you're going through right now; making choices like this is something no one should ever have to go through. My best and most heartfelt advice is to get as well informed as you can about every possible plan and then go with what you know is right. It may or may not be a life saving treatment but what ever path you decided you have to know deep down that you are making the right choice. Of course you will always doubt your decision at one point in time or another but if you make the right one then you will always know you did, go with your heart and your mind. There were many nights my husband and I agonized over our daughterís treatment. Should we go with more chemo, more radiation, another transplant, or should it all be palliative? I searched high and low with the research tools available at that time and learned as much as I possibly could. For us the decision to fight was the right one, we just could not let her go at such a young age and honestly she wasn't ready. If there was ever a doubt in my mind that she didn't want to go through with more treatment then I would have stopped right in my tracks at that very moment.
Search out for more trials but most importantly ask your brother what he wants. If he is ready to stop then it's time...if he wants to fight then fight on! Please know that I will keep you and your family in my prayers. If you have any other questions please just ask.