Connect
← Return to Primary Myelofibrosis diagnosis in 40’s
Discussion
Primary Myelofibrosis diagnosis in 40’s
Blood Cancers & Disorders | Last Active: May 14, 2023 | Replies (10)Comment receiving replies
I was screened for a clinical trial almost right away and qualified for the double blinded clinical trial. It includes the combination of Ruxolitinib (Jakafi) and a study drug called Navitoclax/Placebo. I also receive an EPO shot 1x per month and take an 81 aspirin daily. My lifestyle had to change completely. I had to retire early from teaching and stop all classes I was attending. It’s been very difficult but I am able to now rest when needed (which is often) and my quality of life has significantly improved since resigning and being in the clinal trial. I have an amazing hematologist/oncologist and I also see a bone marrow doc at MAYO Clinic to keep an eye on things. My hope and prayer is that I will not have to go through an allogenic transplant anytime soon.
Replies to "I was screened for a clinical trial almost right away and qualified for the double blinded..."
Connect
I too was diagnosed with PMF in my 40s at 47; though that is truly the confirmation date as I have had mild symptoms for years. The date of confirmation is almost 2 years from my stage 3 melanoma diagnosis. My enlarged spleen was found during a post immunotherapy treatment CT scan (previously stated this was US, but went back to verify) by chance. The CT was to verify no spread of melanoma to the chest (discovered in my neck), but the CT went far enough to see a portion of enlarged spleen. Originally Dr. was not concerned, however my dad was in the last stages of MF and I knew the enlarged spleen was a known symptom. I pushed for more testing and I now have a new oncologist!
Bone marrow biopsy confirmation last week shows some fibrosis, but blood numbers other than platelets are normal. My spleen has shrunk dramatically in 10 weeks (around 40% decrease).... some dietary changes, some lifestyle changes, but no meds nor vitamins other than Vit D.
Meet with Dr. tomorrow, will discuss some of stimme and onamission's liposomal mixes that give me hope for continued stability as I would like to stay away from the drugs as long as possible.