Myelofibrosis*

Posted by wellness3070 @wellness3070, Jan 5, 2017

Anyone out there wishing to discuss above diagnosis?

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

OK, link 1) Some of the key high-antioxidant foods to focus on include:

green leafy vegetables
cruciferous veggies (broccoli, cabbage, cauliflower, etc.)
berries
omega-3 foods like salmon and wild seafood
nuts and seeds (chia, flax, hemp, pumpkin, etc.)
unrefined oils like extra virgin olive oil and coconut oil
herbs and spices (ginger, turmeric, garlic, for example)

We have salmon every Sunday and white and tinned fish regularly. We always use coconut oil and olive oil (no others). Nuts and seeds are eaten every day including chia and flax, pumpkin and sunflower, hemp occasionally and always have a full drawer of organic veg.; berries I love!

I have no problem researching and understanding diet. I researched, over many years, a history of diet back to the Prosimion, 60 million years ago. I have given talks with music on the history of food and it would surprise me if any really thoroughly good diet has no historical background! There are variables for groups, of course, one is the different diets tolerated over ages in different peoples – ref William Wolcott and the Metabolic Typing Diet, essentially the basic difference between the hunter-gatherer diet of Africa (30-40& lean meat and 60-70% vegetarian), and the eastern European big game hunter (mostly meat with a little seasonal veg). There will naturally be a 'mixed type' too. Even the Innuit eat 24 different kinds of moss, apparently! This is why the 'single-minded' lobbies always battle over which is best. They have not heard of the history of variety (the only newcomer in the field being the Agrarian diet – not yet fully assimilated, it is said). Then, each individual is different too. It is both hugely complex and quite simple – the brain has no taste buds but, there again, we have three different kinds of these A) natural – (lost in the mists of our childhood, probably), B) Learned at table, C) corrupted by fancy! Overcoming the last two would be the simplicity of diet, but who said the simple is easy? The Weston Price Foundation determined that the maritime diet is the healthiest, the hunter-gatherer second and agrarian last!

REPLY
@onamission

Congradulations on your tenth anniversary.That is amazing!! Yes, quercetin is becoming a Swiss Army knife. I came across this article regarding eye health benefits with quercetin. As I posted earlier, my wife went on Jakafi and off most of the supplements. Today I asked the doctor if he would approve quercetin. No, I'm not familiar with it was his reply. I try again at the next appointment.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5685256/

Jump to this post

Did your Dr. approve taking quercetin with Jakafi? Thanks

REPLY

There is a lot of amazing info in this group. Kudos to many of you have researched experimented and brought forward alternatives to expensive and many times harmful drugs that may or may not help in our fight against MF. My father passed in June from MF, he was in later stages of MF when diagnosed though numerous symptoms existed for years prior. His experience with Jakifi was horrendous, coming off Jakifi nearly killed him and he never fully gained his previous level of health.
Seeing and knowing the symptoms of MF I pushed my oncologist for further testing of my enlarged spleen that was discovered during a follow up ultrasound post melanoma treatment. It took pushing the oncologist to complete a simple JAK2 test, which I have. My new oncologist ordered a bone marrow biopsy and further genetic testing. Confirmed PMF, though early, it is present. At 47 I am young for the disease and am still wrapping my head around the diagnosis. Prognosis from Dr. this week and will discuss options then, but will certainly be discussing some of your experiences and alternatives to the "approved" methods.

Thank you all for sharing your stories and being on the forefront of alternatives.

REPLY
@scottmatteo

There is a lot of amazing info in this group. Kudos to many of you have researched experimented and brought forward alternatives to expensive and many times harmful drugs that may or may not help in our fight against MF. My father passed in June from MF, he was in later stages of MF when diagnosed though numerous symptoms existed for years prior. His experience with Jakifi was horrendous, coming off Jakifi nearly killed him and he never fully gained his previous level of health.
Seeing and knowing the symptoms of MF I pushed my oncologist for further testing of my enlarged spleen that was discovered during a follow up ultrasound post melanoma treatment. It took pushing the oncologist to complete a simple JAK2 test, which I have. My new oncologist ordered a bone marrow biopsy and further genetic testing. Confirmed PMF, though early, it is present. At 47 I am young for the disease and am still wrapping my head around the diagnosis. Prognosis from Dr. this week and will discuss options then, but will certainly be discussing some of your experiences and alternatives to the "approved" methods.

Thank you all for sharing your stories and being on the forefront of alternatives.

Jump to this post

Glad you popped over to this discussion group, Scott. I'm tagging fellow myelofibrosis members like @teriberi123 @stimme @wellness3070 @stevehurlburt @onamission

Given that you are only 47, you might be interested in this discussion started by @rspriggle who was diagnosed in their 40's.
– Primary Myelofibrosis diagnosis in 40’s https://connect.mayoclinic.org/discussion/primary-myelofibrosis-diagnosis-in-40s/

What questions will you have for your doctor's appointment coming up to discuss treatment options?

REPLY
Please sign in or register to post a reply.
  Request Appointment