Connect
← Return to Anyone have Myelofibrosis (CMS-HCC)?
Discussion
Anyone have Myelofibrosis (CMS-HCC)?
Blood Cancers & Disorders | Last Active: Feb 14 3:28am | Replies (24)Comment receiving replies
@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.
Replies to "@gajokos I’m bad with remembering dates and timelines, but yes, I probably joined this forum fairly..."
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!
Connect
I was diagnosed with Myelofibrosis last summer. My platelets were high and I had funny looking red blood cells. Also had JAK mutation. I started 20mg Jakafi and red blood cells and hemoglobin went way down. Platelets went down to normal. Reduced Jakafi to 10 mg and became anemic and depressed and didn't want to live with no energy to do the things I enjoy.
No longer on any meds at present time. Spleen is ok. I get the itchiness about two times a week and have good days and not so good days as far as energy is concerned. See dr in April.
I was very disappointed Jakafi did not work for me.