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jennifer clarkParticipant
I am on my 42nd round of Videza, two-thirds regular dosage because I have multiple sclerosis and Videza affects it during first week. that is the only negative reaction. five days Videza, three weeks off. I have remained stable until I followed the post about Vit K-2 menatetrenone( MK-4); I have taken 30 mg daily for five months. my WBC usually hovered around 1.2 — it is now 2.0. my RBC were always a little low — they are all now normal. platelets also up significantly. I don’t know if it was the supplement that did it, but my oncologist says he’s never had a pt respond with numbers going up significantly after remaining the same for so long.
jennifer clarkParticipantthere was a previous post about a Japanese study using 45 mg K2 menatetranone for mds pts transfusion dependent: https://ncbi.nih.gov/pubmed/10641439
the poster said one could get the k2 menatetrenone on Amazon, Relentless Improvement. I have been taking 30 mg for four months. my platelets went from 99 to 126 and my RBC from 3.33 to 3.62. my oncologist gave me the ok to try it, and my neurologist thought it was exciting, dose of vit K below threshhold for toxcicity. he also thought it could help osteoporosis.
I am grateful for that posting.jennifer clarkParticipantI’m on my thirty-firstst round of Vidaza and I’m clinically stable so far. BMT not recommended for people my age (76), brutal and not effective.
jennifer clarkParticipantwhere do you live? she definitely needs medical marijuana –it will boost her appetite. there is a legal medication that is pure TSH; I was prescribed it for another problem, not sure it boosted appetite. hemp oil is cannabinoid with just CBD so it won’t help.
jennifer clarkParticipantI have MS in addition to MDS so am on reduced dosage Vidaza, 2/3 of normal dose. I have just completed my 31st round of 5 days every four weeks. it keeps me clinically stable, although they keep warning me that being severely neutropenic I could die from infection, chemo stop working, converting to AML, etc. I had bone marrow read by my local hospital, Mayo and Georgetown, two with dire results, Mayo readings said other two wrong and I’m still RAEB1. Georgetown oncologist said consider myself lucky to have made it this long, get ready. I just keep on keeping on, who knows???
jennifer clarkParticipantin recent bone marrow the radiogy report came up with 15 to 19 percent blasts, bordering on AML. Mayo e-consult says 8 percent and said difference could be different technics, counts by morphology and CD34 immunohistochemistry rather than relying on flow cytometry. they suggest a repeat bone marrow. I am clinically stable. difference in number of blasts is so significant for life expectancy. am so confused as to which is more correct. any suggestions?
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