Living with MDS (Myelodyplastic Syndromes)

@robertp129

I'd recommend seeing an integrative oncologist as well as working with your current physicians to help identify what might be beneficial in your specific case. In my case, I'm taking vitamin D3+K2, ImmunoKinoko 750, Maitake SAP, and a green tea extract. These have all been shown to have some marginal benefit for MDS. My integrative oncologist gave me all of the research papers she was able to find in this regard which I very much appreciated.

When I started Inqovi, my blasts were around 7%. After 3 cycles of Inqovi over about 5 months, my blasts were reduced to 4%. Six months post-Inqovi my blasts were at 1%. Inqovi does exhibit residual effect on blasts even after you stop taking it so I'm sure much of the work of cleaning up my blasts was due to Inqovi. Regardless, I still take the supplements as, like I mentioned, I'll take whatever edge I can get. They certainly don't hurt and, if anything, may contribute in some small way to helping to clean things up.

Any specific questions, please don't hesitate to ask!
-Greg

@robertp129 I found that Promacta provides better results and the side affects went away after a week.

@docheat72 I was asked to stop all supplements during the 5 days of taking the meds. i have been taking some mushroom and green tea extracts and will start that again next week. I am not familiar with an integrative oncologist. Where are you finding that resource? I know some of the larger clinics have an integrative med department. HD Anderson for example. So far just two days on med and no problem. robert