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Living with MDS (Myelodyplastic Syndromes)

Blood Cancers & Disorders | Last Active: Nov 8 6:57pm | Replies (234)

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi Jacklyn, Basically, at least from my personal experience, a tumor board is a group of doctors from different disciplines, such as physicians, surgeons, hematologists, oncologists, radiation therapists, etc., who meet to present and discuss cancer cases and potential treatment options. (Not saying all of those will be on your tumor board) So I would expect that if they’re discussing your case there will be an AML specialist onboard.

To answer your question, yes indeed, it may be possible to live many more years with AML. Of course, it can depend on the type of AML. From what your doctor said, it sounds as though they feel you would have a favorable response to the treatment.
Newer drugs are available for those of us who are a little older and aren’t able to tolerate aggressive treatments. Some of these weren’t options for me 6 years ago, so there’s been a very positive breakthrough in medications. There are several members in Connect who have AML and in our age group who are benefiting from these meds.

Two discussions that popped to mind are these, with member @lindagi who was diagnosed with AML a few years ago. Here is the beginning of her journey…

~AML, age 78, taking Decetabine/ Venetoclax, no transplant
https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/
And her positive update!
~AML successful treatment
https://connect.mayoclinic.org/discussion/aml-successful-treatment/
Waiting for answers is so stressful, I know! You feel like you’re stuck, spinning your wheels and not able to move forward. This is a good time to take a deep breath, then slowly exhale and focus on activities which bring you a sense of calming. Distraction is a wonderful tool to help us process emotions and to work through challenging times…both mentally and physically. I tend to retreat to my desk to paint or sketch. It’s very relaxing and I forget about things that are bothering me for a while. They’re still ruminating in the back of my mind, but for couple minutes or hours, I’m not focusing on a current crises. Does that make sense?

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Replies to "Hi Jacklyn, Basically, at least from my personal experience, a tumor board is a group of..."

I am blessed God put you in my life. You don’t know how much it means to me to hear there are people doing well. You are also right about distracting myself. I worry more about my mental health and staying stable and free from anxiety. I lined up a few projects that
need to be done around the house. I live with my son and his 3 kids. Yep boys 5 and 6 and my granddaughter who graduated this year 16 and I was so happy I could attend. It so comforting to know I can reach out to you Lori. I feel now I just might be one of the lucky ones. I will just do my best and trust God. He got me this far.