Just got diagnosis a few days ago
June 26, 2020 at 3:23 pm #52268Amy ClarkParticipant
I am sorry to hear you picked up C. diff at the hospital. I hope that goes away soon.
I have been thinking about you and your questions. Those are tough questions. Individual patients are so…. different. Mutations play a big part. You are doing the right thing by gathering as much info as you can, medical and practical, before making your decision. Identical twins could go thorough the same transplant and have vastly different outcomes.
I wish it were more straightforward. Some people trade a life threatening disease such as AML or MDS for a chronic disease after a transplant like HVGD and are thankful, as some post-transplant affects are doable with a “regular” life. Some go through a transplant and are not happy with the “new normal.” Some patients don’t make it. Some patients chose to try a clinical trial of a less toxic nature and are still awaiting the outcomes. No medicine is claiming to offer a cure, but some clinical trial meds are showing anti-leukemic affects. Some patients skate through the treatments without a scratch, although these numbers are low from my research. (You were one of these, though, with your chemo!) No one can tell you how YOU will end up being specifically affected by any of these. However, mutations and other personal information can give you an idea of relapse rates somewhat. That would require research, if your doctor doesn’t know right away.
Gather the info, weight the pros and cons, and make the best decision for you at this point in your life. Don’t look back.
In case your stem cell doctor yesterday didn’t know to mention them, there are clinical trials available for AML patients who have completed induction and/or consolidation but who chose not to or cannot proceed to transplant. The LLS Clinical Trial Support Center can do the legwork for you in finding one or more you may qualify for. They are open M-F 9-9 EST. They also know about grants for co-pays and other medical expenses, and other resources. They can search clinical trialsbased on your area, mutation, places you are able to travel to, or other parameters. You might consider calling them. I did a “test call” for you just now and even learned that they will do the same for MDS patients and have grants for us as well. I had no idea… Here is the number: 1-800-955-4572.
Our own MDS site also has a listing of clinical trials, but since you are now an AML patient, the LLS organization (lls.org) likely has more for your particular situation.
Lastly, it can be daunting to do all of this alone. If you ever need someone to listen or mull over options or just to vent, please feel free to call. My husband (a former Ironman) and/or I (a former oncology nurse) would be more than willing to take the time to help you however we can from afar.
832-540-4214. God bless you. Amy
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