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Dr. Lin
ParticipantThe azacitadine was given to hold the disease in check while searching for a donor. The donor search process sometimes take a few months. We don’t want it to progress to leukemia.
ParticipantOver half of all patients will get some form of acute or chronic GVHD, but only a minority severe requiring hospitalization or severe morbidity and mortality. Most others can be treated with topic steroids or a short course of oral meds. In addition, the development of chronic GVHD is actually protective of disease relapse.
ParticipantBMT is not for everyone especially with older people. Here is something I wrote a while back:
https://www.cancer.net/blog/2018-08/bone-marrow-transplants-and-older-adults-3-important-questionsParticipantYes this is good news, meaning that your MDS does not bad chromosomal changes such as deletion of chromosome 7 or 17
ParticipantTransplant process has evolved over the last few decades with improved outcomes including both efficacy and safety. However, even in successful scenarios, short term (up tp 1-2year) decline in quality of life is expected. It remains the only curative option for MDS but requires a lot of planning, supportive, commitment, and expertise from a transplant center of excellence. LLS could connect you to other patients who had gone through the transplant who either had done well or who had complications so you can get the perspectives of both.
ParticipantExpect more data coming out this December at the ASH Annual Meeting on MDS similar to what was presented last year for AML.
https://ash.confex.com/ash/2020/webprogram/Paper134728.htmlOctober 2, 2021 at 10:51 am in reply to: Are MDS Patients considered “immunocompromised” for booster purposes? #55024ParticipantYes, all patients with blood cancers are considered immunocompromised and strongly encouraged to get the booster shot.
ParticipantThis is correct. Most of time, MDS is a progressive disease that requires treatment as time goes by which includes transplant, especially when the disease is evolving (i.e. getting bad with accumulation of more mutations you mentioned). The risk will be transformation into acute myeloid leukemia. However, at this stage, it is mostly informational to know what transplant is and what the donor option look like. It is preparatory work.
ParticipantIf your physician believes that you will benefit from drug they will get it to you. Trust me, all oncologist offices are well prepared to help patients like you!
ParticipantAgree with all. In addition, most centers offer televideo consults you can do it at home, as long as they have all your records.
ParticipantLLS has a few booklets you can read or download here:
https://www.lls.org/resource-center/download-or-order-free-publications?language=English&category=Treatment&sortby=alpha&el-view=card-viewThey are pretty accurate.
ParticipantEven a mini-transplant (non-myeloablative transplant) still will need to oblate your bone marrow long enough to allow donor cell engraftment. This period could be 2-4 weeks where normally blood product support with red blood cell or platelet is required. Possible solution includes reinfusion of stored own blood products or growth factors. This process will need your body and organs being able to tolerate low level of red blood cell or platelets.
August 6, 2020 at 6:04 pm in reply to: Looking for Specialist at Cleveland Clinic Taussig Cancer Center #52650ParticipantHetty Carraway is the one of the best in the MDS field
ParticipantWould also suggest that you talk to the social worker to see about other available resources, both financially as well as logistically
ParticipantWould definitely encourage a second opinion. Most people in remission after Vidaza would be considered for transplant which is the only curative modality unless not a transplant candidate.
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