MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Just got diagnosis a few days ago

Home forums Patient Message Board Just got diagnosis a few days ago

Viewing 46 post (of 46 total)
  • Author
    Posts
  • #52268
    Amy Clark
    Participant

    Hi Mark,
    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

Viewing 46 post (of 46 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert