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Anyone have Myelofibrosis (CMS-HCC)?

Posted by tim376 @tim376, Feb 8 11:56am

Anyone else have Myelofibrosis (CMS-HCC)? Was diagnosed with it beginning of Dec 2025.
Currently taking Jakafi to slow progress, of course not a cure but it seems to have helped reduce the swelling around my middle.

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Lori, Volunteer Mentor | @loribmt | Feb 13 8:07am
In reply to @samlupowitz "@loribmt Good morning. Labs about every 6 weeks now. Lots of conflicting opinions out there about..." + (show)
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@loribmt Good morning. Labs about every 6 weeks now. Lots of conflicting opinions out there about meat and diets and fasting. I’m no expert, but I think … minimal sugar intake and lots of erratic fasting is highly beneficial. Keep the cells guessing. Don’t feed them every 4 or 5 hours like animals in a zoo. Make the cells go nuts and do their job of healing, repairing, etc. And, I think we can’t rely solely on traditional medicine. Medicine is great, but also a dichotomy. Just look at the processed food they serve you in the best cancer hospitals in America. 🤪

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@samlupowitz @samlupowitz It’s great that fasting is working well for you. Loved your line, “Keep the cells guessing.” LOL. There are studies validating that fasting can have influence on cellular repair. From what I’ve learned, during fasting periods, the body activates autophagy, a cellular “clean-up” process that removes damaged components. So while you’re keeping your cells guessing, the more industrious little buggers are also busy tidying up, keeping you in tip-top condition. Kudos on your diligence for good health.

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rivieramaya2009 | @rivieramaya2009 | Feb 13 12:04pm
In reply to @gajokos "Hi @samlupowitz I'm curious... When you say "...was diagnosed with myelofibrosis a few years ago. Was..." + (show)
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Hi @samlupowitz

I'm curious... When you say "...was diagnosed with myelofibrosis a few years ago. Was asymptomatic at first, then the symptoms appeared. " Would you be willing to share how long you stayed asymptomatic in wait-and-observe mode before opting for chemo pills?

(Anyone one else in the wait-and-observe mode out there?)

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@gajokos hi~ I was diagnosed with sMF, in June 2025, but was a little out of breath twice in March and April was just “off” and knew something was up! Since June 2025 many symptoms, but not bad enough to take meds. Trying to eat well, exercise everyday, get good sleep, and doing my best to avoid stress! Forgot to mention I had ET Essential Thrombocythemia for 33 years feeling perfect. I wish you well!! (Just turned 76).

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1pearl | @1pearl | Feb 13 1:35pm
In reply to @samlupowitz "@gajokos I’m bad with remembering dates and timelines, but yes, I probably joined this forum fairly..." + (show)
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@gajokos I’m bad with remembering dates and timelines, but yes, I probably joined this forum
fairly soon after being diagnosed with Myelofibrosis. Other than the Jakafi that was given
to me sometime last year -
and which crashed my levels - I have taken no medicine for the Myelofibrosis. I have my blood checked and see the oncologist every 6 to 8 weeks, and I have scans and MRIs every 6 months, but that more to check for the ECD. My weight is steady at 170. Zero night sweats. No pains worth mentioning. I sometimes feel anemic
although my hemoglobin was 13.2 yesterday. And, when I drive, I feel a bit off, which my oncologist thinks is my thyroid. I’m not what I was 10 years ago. I think it’s the diseases, not age. I do occasionally fast for 48 hours. I think we (humans in general) eat too much. So, I don’t do 3 meals a day anymore. I’ve had a total of 4 bone marrow biopsies - not fun - and they say my Myelo hasn’t progressed. And the Cotellic seems to have stopped the ECD, but it causes cystic acne - hate that. Not sure if this is the type of information you were after, but … that’s my story.

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Hi @samlupowitz ,
I had to look up what ECD is because I never heard of it before. It seems like it is more rare than myelofibrosis which makes you even more special! Glad you are doing well on the med for ECD and your own method for eating that works for you. I agree with you that what we eat is super important for our health and how we feel. I also think daily exercise is very important with a mix of cardio, strength training, flexibility, etc.
I wish you continued good health and thank you for sharing that you have a dual diagnosis. I have only been diagnosed with PMF for 12 months and I do have CALR1 mutation but no symptoms. So I choose no meds other than low dose aspirin for my high platelets. I like my new insurance and primary doctor now after what I would call a very poor experience with what I first chose once I became 65 less than 2 years ago. Live and learn I say. When you don’t feel comfortable with a doctor, I feel it is best to find another!
Stay positive!

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samlupowitz | @samlupowitz | Feb 14 3:28am
In reply to @1pearl "Hi @samlupowitz , I had to look up what ECD is because I never heard of..." + (show)
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Hi @samlupowitz ,
I had to look up what ECD is because I never heard of it before. It seems like it is more rare than myelofibrosis which makes you even more special! Glad you are doing well on the med for ECD and your own method for eating that works for you. I agree with you that what we eat is super important for our health and how we feel. I also think daily exercise is very important with a mix of cardio, strength training, flexibility, etc.
I wish you continued good health and thank you for sharing that you have a dual diagnosis. I have only been diagnosed with PMF for 12 months and I do have CALR1 mutation but no symptoms. So I choose no meds other than low dose aspirin for my high platelets. I like my new insurance and primary doctor now after what I would call a very poor experience with what I first chose once I became 65 less than 2 years ago. Live and learn I say. When you don’t feel comfortable with a doctor, I feel it is best to find another!
Stay positive!

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@1pearl Thank you for your nice note. Yes, ECD is extremely rare. Only approximately 100 diagnosed currently worldwide - or so they say. And, I was told that I’m like 1 of only 6 worldwide with both diseases. Not sure I believe that, but maybe. Who knows?

Don’t give up your Medicare for one of those insurances advertised on TV that give you things like teeth cleanings and eyewear, etc. You need your Medicare (and maybe a supplement too) in order to be able to be treated by whomever and wherever you want.

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