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Care Team Addition

A myMPNteam Member asked a question 💭
Los Angeles, CA

I’m a 65 yr old male diagnosed with PV about 1 yr ago. I’m happy with my physician at Cedars Sinai but, like many folks here, am looking to add to my care team with a CA-based physician who is familiar with and interested in a 360 degree holistic approach to MPN’s (diet, supplements,etc). The person does not need to be in LA but does need to be licensed in CA. If anyone has any recs, I’d greatly appreciate it.

October 24, 2023
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A myMPNteam Member

Thank you so much both Janice and MaryAnn

October 25, 2023
A myMPNteam Member

I believe I have found an article that you will probably be interested in. It is entitled,
“The SIMM Study: Survey of integrative medicine in myeloproliferative neoplasms”

Www.ncbi.nlm.nih.gov
Then in the search bar, put in PMCID:PMC (Phone number can only be seen by the question and answer creators)

I have skimmed over the long article, but it seems to have a lot of the holistic approach to our diseases that aren’t often written about. Wanted you to see this, and get your opinion.

October 24, 2023 (edited)
A myMPNteam Member

Hi Roger. Good luck with your search. My medical doctors don't like supplements because they say there's not enough research to show effectiveness or problems. Yet I also know there's little monetary incentive for drug companies to fund research on inexpensive supplements, compared to new medications. In my case, I've discovered recently that supplements I've long taken don't mix well with the Hydroxyurea I've been taking for 3 years for ET. That's especially true of Magnesium. Stopping a daily supplement of it, and a liquid antacid that contains it, has largely resolved a digestive issue I've had all year, ever since Hydroxyurea level was increased. I also recently stopped my daily Turmeric supplement because I read that Turmeric has blood thinning properties and my doctors recently asked me to take low dose aspirin as a blood thinner. So I hope you find the medical approach you seek, but please be cautious.

October 24, 2023 (edited)
A myMPNteam Member

It will be really interesting if you come up with a physician along those lines, Roger. Hope someone out there has experience with such a group or doctor. There is such a lot of research being done in MPNs now, but I’ve never read about a holistic approach that anyone is focusing on. Hmm, going to have to look around some of the research sites to see if anything pops up. If I find any links, I’ll pass them on to you.

October 24, 2023

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