How often do I see them? I’ve read some ppl just see an MPN Specialist and stop seeing a Hema.
Should I see both? My Hema doesn’t put forth much effort or time it seems, like a lot of Western Med. Dr’s.
You have already heard about the Mediterranean diet, which in anti-inflammatory and has cardiovascular benefits. Regarding supplements, Dr. Fleischman has also done some research into N-Acetylcysteine, for which there is some support for reducing inflammation.
Some of us are using curcumin for its anti-inflammatory benefit. This has been the most successful supplement that I have used for inflammation related to osteoarthritis and tendonitis. Note that this can be mildly blood thinning, but it has not been a problem for me. I am also using a milk thistle extract to protect my liver while using Besremi. I was experiencing a significant elevation in LFTs, but the milk thistle extract returned the LFTs WNL.
It is definitely worth seeing a MPN Specialist (who will be a hematologist) rather than a regular hematologist who does not have MPN expertise. MPNs are rare disorders and most doctors have little experience with them. The MPN Specialist may or may not be familiar with complimentary health interventions for MPNs.
I consult with an Integrative/Functional Medicine doctor about the complementary health interventions I use, including supplements. Many Western doctors are unfamiliar with these interventions and are understandably reluctant to recommend something that is outside of their scope of practice. It is very important to seek expert guidance about the use of supplements. If something is biologically active enough to help you, it can also hurt you and interact with things. I always consult with the I/F Med doc about any supplement I consider using. Additionally, these doctors take a holistic approach to health and consider the totality of how each patients presents. Here are some links to find an Integrative or Functional medicine doctor. Some practice both.
https://fonconsulting.com/resources/integrative...
https://www.ifm.org/find-a-practitioner/
Wishing you all the best.
To cast some light on your question about diet, I advise you to do a search on Patient Power.
Myeloproliferative neoplasm expert Dr. Angela Fleischman answers a frequently asked question, “Is there a diet specifically for MPN patients?” She gives suggestions on how to eat well with MPNs. Because of the frequency of inflammation in our allele burden, she recommends a Mediterranean diet, especially in those who have cardiovascular comorbidity. I don’t have the link here, but you can locate that article as well as other diet-related discussion at Patient Power.
Yes, I'd continue to see both. The MPN specialist knows the condition better but not as much overall hematology. Our local hematologist is aware of iron stores, ferritin, transferin, GI, and more. My wife had a small clot in her liver and the mpn guy sent her to a benign hematologist. He doesn't do clots. So our local hematologist handled that well. If you don't get good help from the local hematologist then there are more of those types to change to. But I think both are good to see.
We see the specialist every 3 or 4 months and the generalist every 6 months. My wife gets labs (cbc and cmp) every month.
I hope that helps
Most likely the specialists PA or NP would help with diet and supplements.
What is “Patient Power” that some are speaking of?