20 Months To Live – Father with MDS – Suggestions?!

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• February 18, 2025 at 6:43 pm #67954
  Dan T

  Participant

  My father was diagnosed with MDS about a month ago. He had high risk MDS with TP53 mutation. They said with just transfusions He had 6-12 months.

  Our doctor had higher hopes and got him scheduled for chemo. He recently had his first round of chemo. Venetoclax and Azacitidine that went well with little to no side effects.

  He’s scheduled for a bone marrow draw to see if he is in remission later this week.

  But today he met with the bone marrow transplant specialist who went over all his results and told him that he would not recommend a transplant because he doesn’t think he would survive it.

  Our normal cancer doctor told us that using a maintenance program, even without the transplant, he had high hopes that my dad could last another 5 to 10 years.

  But the transplant specialist today just gave us a weird look…. And said that’s nowhere close… I would say more like 18 to 20 months at the very very best. What?!?! He said he’ll be lucky to get past this Christmas but he won’t make two. How could his prognosis and our cancer specialist (who studied at Mayo clinic) be so far apart – today was heartbreaking.

  What else can we do?
  Other medications?
  Clinical trials?

  This can’t be real.

  February 18, 2025 at 7:06 pm #67955
  Marie Yeager

  Participant

  Hello Dan,
  I’m so sorry your Dad is going through this… and by extension, I’m sorry for what you are going through. There is a calculator that helps families figure out a realistic expectation: https://www.mds-risk-model.com/
  There are so many variations to this disease and everyone is different. Add to that the ongoing research and you get widely varying expectations. Each patient responds differently to treatments and there is no way to know whether your Dad will or will not respond to those treatments until he tries them – IF he chooses that route. My husband was diagnosed a few years ago and I’ve learned to respect his wishes. It can be a roller coaster. I would suggest finding a Center of Excellence for MDS and get a realistic view. And plan from there. There are no easy answers with MDS. Sending a big hug from someone who understands where you are.
  Marie

  March 5, 2025 at 9:03 am #67959
  Robert Sepe

  Participant

  Sorry to learn about your Dad. I was diagnosed in September 2023 (Hg~8). Must admit I was not happy and was offered the usual therapy, which I declined due to side effects. I decided to craft my own therapy. As a research person, I was able to do this.

  This morniing my Hg tested at 13.8 (it’d been as high as 14.5) which is acceptable as i’m reovering from a nasty bout of the flu.

  I’ve determined MDS is completely manageable and recovery is possible; but it takes a lot of work.

  I’m now 82 and back to playing golf, ham radio, walking and building automobile engines, my hobby.

  I share information with anyone interested is survival. Oncologists say they cannot duplicate my success and are waiting for the other shoe to drop. So far, no sign of that happening. I’m driving 10 hours to the beach next week. Party on!

  BTW, one thing oncologists don’t test for are heavy metals in the body like arsenic and cadminium. Heavy metals concentrate in the bone marrow, they poison the marrow which in turn produces abnormal blood cells— MDS. A bone marrow transplant won’t help these people unless the heavy metals are first removed from the body via chelation. Tobacco and nut flavored cereals are primry sources of arsenic poisioning. Treating the symptom (MDS) and not the cause is valueless, it does generate revenue for the medical community and extend the patient’s life, but not in a vibrant state. Traditional medical MDS tretment is MANAGED DECLINE as people are not expected to survive.
  There are a handful of us who are surviving quite nicely.

  Bob
  a PhD, not an MD
  rfsepe@gmail.com
  919-417-5019

  March 10, 2025 at 12:58 pm #67961
  stacey

  Participant

  Dan,
  I’m really hoping things go well for your dad on the Vidaza (Azacitidine). I can’t speak for the Venetoclax (I was never on that), but I did have Vidaza shots for 7 business days per month for about 4 or 5 months before my transplant last year. They also gave me Zofran a half hour before to prevent nausea. I had been low risk 5q- MDS for almost 20 years up until January 2nd of last year when they discovered I had quite a few abnormalities in my karyotype. They detected about 5 or 6 defective chromosomes (not TP53 mutation), but I found myself suddenly in the high risk MDS category and told 6 months to live.
  Vidaza really helped clean up a lot of defects in my bone marrow for those 4 or 5 months ahead of my bone marrow transplant that I had later in June. I was really surprised how well it worked. I assume they chose it as treatment for your dad because it has success for TP53 as well.
  Please keep us posted when you have time as to how your dad is doing, but try not to worry. Perhaps Vidaza could be a long-term treatment for him to keep things in remission. I know I have heard of patients still taking Vidaza after 2-4 years, and I thought I’ve seen mentions on this forum of even more years than that.
  Best wishes,
  -Stacey

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