Support Option whilst taking Meds

[Talllboy71]

I am very newly diagnosed with PV, currently having weekly venesection but yet to start meds and because of my interest in good health and natural options for supporting immune system and other vital body functions, I have heard about Turkey Tail mushroom, said to support the immune system during chemo meds. Does anyone know anything about this or have an opinion?

[Otterfield]

Welcome! There is a lot to get used to when you are still coming to terms with a new diagnosis. Do you know what medication is likely to be prescribed? When you next see your haematologist it would be good to talk to her/him about what supplements might be helpful and safe. If you are prescribed Hydroxycarbamide, bear in mind that not everyone has significant side effects from it and a healthy diet may be all you need to stay well.

I've never heard of Turkey Tail mushrooms but they are beautiful to look at!

Good luck

[Talllboy71 in reply to Otterfield]

Thankyou Otterfield . . Meds to be decided next week on Monday . Just been on venosection for last 2 weeks its all unfolded very quickly . Had a blood clotting disorder ( peotein S deficency) since 25 years old but nothing for last 25 years till March been under UCLH consultant and hematology on warfarin all this time and had a good quality life so far. . . So when doing the R&D on why a clot had occurred and some symptons I had felt . . they did the Jak2 test and here we are with PV 2 . . 2nd rare blood disease in my life. How to you deal with the Meds ? are you on interferon or Hydroxycarbamide ? Definitely understand about nutrition and good diet for the last 25 years so hoping this will help the cause. Thanks again for coming back its appreciated !

[Talllboy71 in reply to Otterfield]

Apologies Otterfield. . . I have read your profile now and can see you been on a journey but with optimism . . anyway I have shared a bit more info in previous message with you

[EmeraldA]

Hi Talllboy71. Welcome! People are so knowledgable here. I follow a very healthy lifestyle. No processed food, vegetarian with very limited dairy intake. Gluten Free also and I follow a Mediterranean diet / anti inflammatory diet. I also take a range of supplements that my consultant is aware off. I have looked into mushrooms before but due to the blood thinning nature of the ones I was looking at I haven't taken any to date. Saying that these look very interesting indeed. Have you consulted a nutritionist practitioner at all? ( I've ET Jak2 + asprin only at present, diagnosed March 2020). B

[Wyebird]

Welcome I hope you find this site as helpful as I do. You sound quite relaxed about your new diagnosis. Good for you. As for those mushrooms I’ve never heard of them. I’ve tried various things but nothing has worked for me. Except Vit d tablets as I foolishly stopped taking them . For months i felt drained only to discover I’m very deficient.

I also take magnesium and the occasional b12. Good luck

[hunter5582]

Welcome to the forum. Glad you found your way here.

It sounds like you already know that your two likely medication options will be PEGylated interferon or hydroxycarbamide (HU). Ruxolitinib is also used (usually as a second tier med) , particularly when PV symptoms include pruritis. Each of our choices, including venesection-only has a risk/benefit profile. Each of us responds differently to each of these treatment choices. Sounds like you are already on track to research each of your choices so you can make a good decision for yourself.

Regarding your question, I have never heard of Turkey Tail mushrooms. While you should check with your hematologist, it is unlikely this doc will know about this. Most docs are not familiar with most complementary health interventions. I consult with an Integrative/Functional medicine doc for just this reason. It is very important to find a provider who understands complementary health supplements and how they interact with conventional medicine. If something is biologically active enough to help you it can also hurt you, and interact with other things. Here is a list of Functional Medicine docs and info on these types of docs.

ifm.org/find-a-practitioner/

patronusmedical.com/blog/fu...

FYI - the JAK2 mutation does more than increase hematopoiesis. Deregulation of the JAK-STAT pathway also causes our bodies to produce too many inflammatory cytokines. At the core, MPNs are inflammatory disorders. This is part of why we experience so many secondary symptoms. Controlling systemic inflammation is very important for our quality of life and may help prevent disease progression. I have had great success with curcumin. I am also using L-Glutathione and a fish oil derivative called SPM Active. I do this under the direction of an Integrative/Functional Medicine doc. This doc also determined that I was Vit B/Folate, Magnesium, and Vit D deficient. I am taking supplements for those things too.

I can sympathize with the whole multiple rare disorders thing. Been there. Done that. Have multiple t-shirts for it. Sometimes these disorders also interface with each other in ways that are not always well understood (e.g. JAK2v617f + NF1:c5425C>T). It can be quite the interesting journey!

All the best to you on your PV journey.

[Bluetop]

I have PV, JAK2 positive and am taking hydroxycarbomide -with good results. I have read a lot about curcumin and do use it to supplement my diet, but not heard of Turkey Tail mushrooms. Good luck with managing this new challenge.