from the review of Perinatal brain damage by studying 210 people who take Jakafi. The review is created by e Health Me based on reports from FDA and social media, and is updated regularly. "Jakafi (latest outcomes) has active ingredients of ruxolitinib phosphate. It is often used in primary myelofibrosis. Commonly reported side effects of Jakafi include fatigue, pneumonia, breathing difficulty, thrombocytopenia, anaemia, brain lesions"
Read what a poster on the GERN board has to say about Jak vs Imet. Irishtrader52: Her husband is in the Mayo study and has had great success wrt to Imetelstat. It has given several ET patients complete remission showing a 100% hematologic response rate in 18 patients with essential thrombocytopenia treated with imetelstat, including 16 complete responses - Given her own research she refused to have her husband in the Jaf/Imet comparative study citing the limited prognosis wrt Jakafi. Her husband had 3 years prognosis and has now moved from PR to CR thanx to Imetelstat. The truth speaks for itself. In this case for her husband. She was mentioned by Tefferi the Dr conducting the Mayo study so no she's not a random fake poster.
I'd REALLY like a link to that review. Fatigue, thrombocytopenia and anemia are well-known AEs with Jakafi, and are manageable (note that despite the thrombocytopenia, Incyte representatives have stated that there have been no life-threatening bleeds). I'm pretty sure that if brain lesions were "commonly reported" we'd have heard of it before--one possibly-associated case of PML sure made a splash. Breathing difficulty is a little vague; I'd like to consider it secondary to other AEs, like anemia and pneumonia. Pneumonia is the interesting item on the list. JAK2 inhibition reduces the number of granulocytes produced (most importantly neutrophils, but other classes too) and JAK1 inhibition blunts immune response. All through testing and early adoption there was a lot of surveillance for opportunistic and/or rapidly-progressing infections. Nothing spectacular showed up. At the last analyst presentation, a hint was dropped that some sort of infection signal is being seen; that will certainly be followed up.
The problem with treating ET is that for most patients, the experience is fatigue and itching. The disease does not reduce average life expectancy. A small fraction of patients are much sicker, but not many. A 2-hour intravenous drug administration every other week is arguably as disruptive as the illness itself. Any risk at all of causing aplastic anemia is unacceptable. Any candidate treatment will have to go through a biggish trial to set an upper limit on rate of leukemic transformation.
A. Tefferi is a superb clinician. The personality traits that destroy him as a scientist don't harm that, and may even help. Patients, from what I have gathered, adore him. The only downside I get from gossip is that he sometimes tells patients that they're better based on lab work when they definitely don't feel better.
As for prognosis with Jakafi, it improves every time there's a clinical update.
I suggest you go on MPN monthly forum and read the article on Sanofi's stopping Phase 3 on their Jak2 Inhibitor. There is a reply to the Article from a trial participant that said it was due to brain lesions. I would also suggest you read What's the Bloody News Blog it is the Blog of an MF patient that has been in 2 Jak2 trials and now is on Imetelstat.
jacosa: I don't understand all medical informations but we really appreciate you keep us straight and calm ...We all know your screening for good information from bad is very time consuming ..Thanks again deep from my heart.... Merry Christmas