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Primary Myelofibrosis: How did you come to terms with the diagnosis?
Blood Cancers & Disorders | Last Active: Jun 18 3:10pm | Replies (16)Comment receiving replies
I was diagnosed last August with Pre Fibrotic Primary Myelofibrosis. I have a CALR mutation. My doctor at Mayo tells me having the CALR mutation can be better in the long run. They diagnosed me Pre Fibrotic because of no symptoms and my numbers aren't really too bad except for high platelets. Try not to freak. It's so hard, but like these wonderful people on here are saying, we can live long lives. I am 8 hours from Mayo but keep in touch after my initial in person visit by Zoom visits. Make certain you find an MPN specialist in addition to your local doctor. I am trying Besremi which is in 2nd phase clinical trials for my disease. It is an Interferon Immunotherapy . It is showing that is can lessen gene mutation and bone marrow fibrosis. It's not made for this disease but is showing great promise. Google it for Myelofibrosis! Depending on where you are at in the disease and it sounds early, Besremi may work for you. From what I understand, it's the only thing besides bone marrow transplant that can actually do more than just ease symptoms. Praying for all of you on here!!
Replies to "I was diagnosed last August with Pre Fibrotic Primary Myelofibrosis. I have a CALR mutation. My..."
@conniekostiuk Thank you so much for responding. My name is Connie also! I've asked my hemo for a referral to Johns Hopkins. Hoping I can get that moving because I need more information than what I have. Good to hear about Besremi - I will look that up!
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Hi @conniekostiuk,
I have CALR too, specifically CALR1, no symptoms, no enlarged spleen per CT Pelvic scan, and I am now 66 years old, and I declined taking Hydrea but about every three days I do take one low dose aspirin as more often makes me bleed way too easily. I have no other health issues except a very enlarged not at all painful right finger PIP joint that has been thought to be an indolent infection per my first and last scan with and without contrast since 2023. I have seen four hand surgeons and one rheumatologist and they do not know what I have. The two middle hand surgeons thought I had an old injury but I have never injured my fingers in any way so I doubt that.
I meant to write to you earlier when I saw your post, but I am on vacation with my family and had the great experience tonight of getting back into the chapel my husband and I were married at almost 38 ago, the Chapel of the Choirs in St. Peter’s Basilica, Vatican City.
My advice is to do what you feel is best for you. If you have symptoms it might be different than what I feel is best for me. In the meantime, I live my life as usual and limit the time I think of having any blood cancer as I feel just fine as I always have for all my life! I am thankful to God for that still after almost a year and a half since hearing the dreaded thought of having cancer with a small c as I was told.
Wishing you all the best and stay positive my friend!