Help – Father diagnosed with high risk MDS?!??

[Dan T]

My father (76) was diagnosed with MDS last week. He was taken to the hospital after feeling weak and being out of breathe at even the simplest task. They said he was losing blood somewhere but they think that resolved itself (small intestine maybe). But the bone marrow results pinpointed MDS as the reason the bone marrow couldn’t keep up with resupplying his blood cells. He had low red, white, and platelets. After 5-6 days in hospital getting transfusions daily he was sent home and has been testing his blood every other day and getting transfusions based on the results. Mayo Clinic finally sent results of his bone marrow test.

Their notes say:
5-9% leukemia cells TP53 abnormal mutation High risk / poor prognosis 6 to 12 months with only transfusions.

Treatment they want to do:
Azaatadine chemotherapy (5-7 days) Venetodax pills Several sessions every 28 days. Then bone marrow transplant (stem cells). (which they worry he might not survive because of age and bad health)

The cancer doctor says he’s seen his success in this treatment since starting it in patients March in 2017.

We don’t know much except what they’ve told us. Is this a smart/common plan? I’ve read chemo isn’t as effective with TP53 mutation.

What about stem cell injections? That’s after remission? Can we donate as his sons and daughters? He does have some sisters around the country too.

Any other treatments people have tried with success?

Id love to hear some success stories. This is so scary. We can’t lose our dad😭.

I feel so bad for all he’s about to go through with chemo. I heard it’s horrible. Gonna be really hard for him to handle being sick, losing hair, and all the side effects.

We need some inspiration to give us hope and feedback to let us know we are on the right path.

[Jean Ira]

Yes, Azacitidine and Venetoclax is a common treatment. My husband has had minimal side effects and tolerates these well. He takes anti nausea medication before treatment. Venetoclax pills were increased over time until he reached the 4 pill level. He was diagnosed 5 years ago with multilineage (low platelets, low hemoglobin, one mutation) intermediate MDS. He was watch and wait for a couple of years. He now gets labs twice a week and generally matched platelet transfusions twice a week; blood sometimes weekly or every other week. It is quite a routine. He considers it his job now. He will be 74 next month. Mayo Clinic gets high marks in treatment for MDS. I do suggest the Facebook page Fight Myelodysplastic Syndrome if you have that access. Wishing you God’s best.

[Robert Sepe]

Get a home monitoring Hg Kit. Available by prescription, insurance paid. See my post today.

I am 82 and have successfully raised my hemoglobin and reduced the valume of mutations without traditional meds or transfusions. My Hg this morning is 13.6. I can walk a mile.

I was your father 18 months ago. I’m 82.

I can tell you what I did and how to do it. 11 others are following my lead with good results.

No time to lose.

Bob
919-417-5019 (leave message) or
rfsepe@gmail.com

[Dan T]

My father had his first round of chemo. Five days in hospital. No side effects thankfully. He’s still needing labs every other day. Transfusions 3-4 times a week. Platelets, red cells, magnesium, etc.

Today I heard he’s starting to get really jittery. Weak. And his white cells are some of the lowest they’ve been. I don’t know if that’s typical or bad.

No one can see him. Family, friends, grandkids because just about anything could get him sick and he can’t fight it. They said it’s the illness that gets you sometimes…. Not the cancer. Uggh.

Doctor ordered new bone marrow biopsy Wednesday to check for remission. Otherwise he’ll start round 2 of chemo.

He meets with transplant doctor Tuesday to see if he even qualifies.

This is soooooo scary.

—

Are there any other treatments, trials, etc he should be exploring?

[Ashley Moncrief]

Hi Dan,

I’m so sorry to hear about your father’s situation. A drop in the white blood cell count is common with the azacitidine/Venetoclax combo. In fact, it can stay down longer with the combination than when azacitidine is given by itself. That doesn’t mean that the medication is not working; it could be that the marrow is taking longer to recover. It’s a fine line between giving enough chemo to keep the MDS at bay and giving too much chemo that makes it harder for the marrow to make healthy cells. The bone marrow should tell you more.

I saw an article recently on the American Society of Clinical Oncology’s website about the use of Ven/Aza in high-risk MDS. In the study they cover, response rates were up to 80% with a duration of response around 16 months. 24% of the patients in that trial had a TP53 mutation.

If you are interested in looking at potential clinical trials, I would check out our clinical trial portal SparkCures. I put the link below. I do not believe there are any targeting TP53 right now, but there might be other studies he would qualify for. You can reach out to the staff there and they can help you narrow down the options.

https://mdsf.sparkcures.com/

I hope this helps! Sending positive thoughts your way!

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