MDS treatment options other than bone marrow transplant

Posted by garyrp @garyrp, Apr 23, 2018

I have been diagnosed with MDS and bone marrow transplant is not a option. What are some other treatment options?

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@dougmann

I have CLL that was treated in 2016, 2017-2019. Hemaglobin rose to 15 million in 2020, which was long ago my baseline. But hemaglobin gradually dropped to less than 13 million by 2022. Baseline neutrophil and platelet counts also declined, Abnormal neutrophils seen under microscope, eg hypogranular neutrophils was a strong enough clue to order a Bone Marrow Biopsy with a MDS panel and some other tests. 2 of 20 cells at metaphase had genetic changes associated with a poor prognosis, Additional genetic testing was ordered, but could not be completed due to inadequate tissue / aspirant samples. The plan was to repeat the BMB in 3 months. However, I also had experienced heavy night sweats and worsening symptoms associated with spleen ischemia, for which there was no explanation, no diagnosis. I tried ivermectin for symptoms of a viral infection, possibly covid in June 2020, with fever and malaise resolved in an hour. Night sweats also ceased until I cut the dose to 12 mg daily, and stopped again with a 24 mg dose. No effect on hemaglobin and spleen pain. Given that doctors at Mayo and elsewhere offered no treatment options, I searched Pubmed for clinical trials and in vitro studies for CLL and MDS. I found that both Ivermectin and Hydroxychloroquine showed promise in combination with other drugs, but I could not find any report of IVM and HCQ being used together. Each have mechanisms of actions which might have additive or synergistic effects. So I continued with the Ivermectin and added a daily dose of 200 mg of hydroxychloroquine on August 1, 2022. Within 4 days the spleen pain went away and within weeks the sense of fullness in the upper left abdominal quadrants was history. By mid September my hemaglobin was 13.4 and slowly trending upward since then. Peripheral blood tests suggest that the MDS is not progressing, and dare I say heading in the opposite direction. I decided to not get the follow up BMB until I see signs that the MDS is progressing, The MDS specialist also ordered an Minimum Residual Disease test of peripheral blood, with the CLL count having decreased by 50% compared to 9 months earlier. My CLL specialist ordered me to stop using IVM and HCQ and refused to do any further diagnostic testing until I consent to have a BMB to further evaluate the MDS, I asked the hematology dept to assign a different CLL specialist for cause some months ago, but haven't heard back.

Editor's Note:
Researchers are studying Ivermectin to see if it may be used as an anti-cancer drug and early studies show promise. Please note that this research is in the early stages (mice studies) and has not yet been tested in human trials. Ivermectin is not a proven standard treatment for hematologic cancers.

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Hope u are doing well. I’ve been thinking of starting husband on ivermectin. Have you improved since starting it? There is so little info available. Thank you for anything u can tel me.

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@tyson1221

Awaiting bone marrow biopsy for low cbc an low platelets so diagnosis appears to be mds wat are my treatment options I feel good with no symptoms so far thanks

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My husband has MDs. Low platelets. They were at 28k. I started him on papaya and they are up to 86k now. Hope it helps you.
https://a.co/d/bYFsdnV

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@1deedee

I have had MDS since 2015 with very low platelets being the essential problem. I have had 3 platelet transfusions over the years when I was hospitalized for different emergencies not related to MDS and the transfusions didn’t raise my platelets. My hematologist thinks I need an exact match for the platelets to
Work and has sent my blood to a lab for a match. I need a hip surgery this is why. My count is 30 to 36. Has anyone else had a platelet transfusion that didn’t work.

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My husband has MDs. His platelets were at 28k. I started him on papaya and it’s been almost a year but they are at 86k now. Hope it helps u too
https://a.co/d/bYFsdnV

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