Anyone out there wishing to discuss above diagnosis?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Hi, Becky, I was having acupuncture plus some pretty vigorous massage. I also took osteopathy. He believes it is two spots in my spine where the vertibrae are trapping a nerve. He helps. I will tell more next week.
wondering how you are doing now??? I am waiting on results from bone marrow biopsy to confirm diagnosis
Welcome to Connect, @godschild56.
I encourage you to view this more recent discussion where you will meet @gael @wellness3070 @heartspace and others, who’ve shared their experiences with myelofibrosis.
You might also wish to view this information from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057
@godschild56, did you have any symptoms? Look forward to getting to know you better.
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stimme, thank you for your contribution and I hope the acupuncture has helped. I came across this information and wondered if you or anyone here knows if this has developed as a myelofibrosis treatment:
Dear Onamission, thank you. This looks rather exciting. As it is, I am my normal weight still. I do take pure curcumin in my liposomal vitamin C (which I make myself and which a number of intelligent researchers are saying very high dose vitamin C (IV or liposomal) will also counteract coronavirus!) plus medicinal mushroom capsules, Benfotiamine, Saw Palmetto, a D3/K2/Mg capsule, Mg & zinc tablets and Patrick Holford's Optimum Nutrition Formula. I was taking Serrapeptase but cannot currently afford this, good as it is recconed to be for eaing up fibrin. I also take selenium.
I am also building up the courage (and planning) to start the Breuss 42-day-fast with my doctor checking on my health!!
… oh, and for muscle pain I use a CBD, MSM, Arnica, Turmeric, Rosemary, Eucalyptus etc cream called PURAGANIC – this is amazing. Every suffering person I have let try this agrees! I haven't had bone pain for a while, I have just realised! Perhaps I am doing something right? For nerve pain (spinal stenosis) I am afraid I take Ibuprofen (after food, of course) as this seems to be the only antidote to this!
stimme, I researched Breuss 42 day diet and found a forum called cancercompass where the Breuss diet was the subject started in 2005 however one who started the diet never revealed if she completed it. I am a lay person but after reviewing the Bresuss diet I encourage you to avoid this incomplete diet. Your stable weight says keep doing what your doing. Your time is better spent incorporating components in the nim.life/25466670 link.
Hello, Onamission, thank you for this attention. I haven't started the diet. I thought it was just laziness on my part – of course, it may be intuition. Meanwhile where do I find the link you mentioned. I googled it but came up with nothing except an experiment of bringing up a chimp like a human!!
See if this works https://nlm.life/25466670
Hi…I have a condition called Myeloid/lymphoid neoplasms with PCM1-JAK2. My first indication of something wrong was in the summer of 2017 My primary physician detected irregularities in some of my blood tests. He referred me to Dr. Punit Wadhwa of Frauenshuh Cancer Center where the term myelofibrosis was first detected. In May of2018,I had a bone marrow biopsy, which resulted in the above diagnosis. My doctor arranged for a consultation at Mayo with Dr. Animesh Pardanani. My condition was confirmed and I was told that there are less than 10 known cases of this combination in the US. I began to have Phlebotomies until my RBC came down. I began to take Jakafi in July 2018 and have been on it since. Within 2 weeks, my symptoms disappeared: night sweats, fatigue, weight loss. I have been on Jakafi and have felt good ever since. I have routine bloodwork every 2 months and see my hematologist at Frauenshuh 3 times a year. I don't know know how long I will feel this good, but I will happily take every day I am given.
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