Anyone in a study ?

[James Jarmon]

Hi all,
Started feeling weak/ sluggish summer of 2022. Primary care physician thought cardio/heart was the problem.
Had every heart test, passed all. December 2022, really out of breath, with elevated heart rate, I ask primary care physician to give me a blood test with smear. Turns out, 6 on the hemoglobin, 12 on the platelets, and everything else either high or low. 5 Day hospitalization, bone marrow pathology diagnosis …MDS High risk.
Did 5 days of Azacitidine ….
Fast forward … change to MD Anderson in Houston (home), now on a “fast track” program, multiple blood & plasma transfusions, am now enrolled in a study, that will have me take Venetoclax in combination with Azacitidine.
Anyone else take that combo? Any side effects? Part of my issue is latest bone marrow shows 8% blast in bone marrow & molecular diagnostics shows mutations in genes ASXL1,EZH2,JAK1,RUNX1,& SH2B3. It also shows 20 abnormal Chromosomes with 5 that are karyotyped.
Lots of info.
Best,
James

[Marie Yeager]

Hello James,
Sorry to hear you are feeling so fatigued. My husband has low risk MDS and I can always tell when his hemaglobin drops – the fatigue hits like a hammer. If yours was at 6, it’s no wonder you felt so awful! He has not received these drugs, so I can’t provide any first hand perspective to your question. But some of the best information we’ve found on treatments has been from watching some of the webinars provided by the MDS Foundation. You can watch prior webinars here: https://www.mds-foundation.org/on-demand-previous-webinars/ If you have the opportunity to join one of these webinars when they are live, they will answer specific treatment questions at the end. Wishing you all the best!
Marie

[Pat Lawson]

James,

My husband was entered in a clinical trial in November 2018 using the same regimens. He was high risk with similar circumstances as yours. When he first started all of his counts dropped extremely low which they said was expected and by May 2019 he was considered in remission. He chose not to go for the stem cell transplant and by January of 2020 he quit responding to the treatment so he could no longer be in the trial. So that regimen worked for 14 months for him. My prayers go out for you…sending you strength and hope as you fight this horrible disease.
God Bless,
Pat

[Michael Collins]

I started taking Venetoclax and Inqovi seven months ago. I live in Indianapolis and my cancer hospital here is affiliated with MD Anderson which has recommended my treatment plan. After three months on the two drugs I had to stop for four months while my blood counts recovered. Also had to take a one month break because our son brought covid home for Christmas. I recovered okay from that. Just did round four of Inqovi only in pill form. Next round of Inqovi will be by IV as I was told it’s not as rough on your bone marrow and your counts should recover more quickly. It’s my platelets that are struggling. Hemoglobin is doing okay. I have the following mutations ASXL1; TET2; SFR2.

[bexar2120]

Mr. James, I am not in a Study – as of this moment. Only on the Azacitadine/Vidaza, but I expect to eventually be placed on Venetoclax if/when my High Risk MDS progresses to AML. I have a TP53 variant as well as other genetic irregularities.
My Hem/Onc physician informs me that MDS will eventually lead to AML. He stated that Venetoclax would be added to my regime when diagnostic testing indicated the Vidaza was no longer effective.
Side effects of Vidaza alone where fatigue, frequent urination and body temperature fluctuations. Also, the first two months, my blood indices dropped dramatically, but have rebounded this March.
This raises the question of: When Vidaza has promoted appropriate body response and blood indices are “normal”, should we have a discussion with physician to continue to a stem cell transplant with matched donor stem cells?
Myself, I am leery of using another person’s stem cells.

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