Good afternoon
I hope everybody is well and enjoying the joys of Wimbledon !!
I would be grateful to receive any feedback from anybody currently being treated with Fedratinib in relation to myelofibrosis.
In particular anybody in the USA where it has been in use for a longer period of time than Great Britain.
Regards KB
kevinbros, my wife's experience with Fedratinib for her myelofinrosis was the same as Jakafi. No reduction in spleen size actually enlargement to over 25cm resulting in strength and weight loss because of pressure on stomach. She also had consistant low platelets and hemoglobin requiring multiple transfusions a week for both. Soon after pacritinib received FDA approval she began standard treatment of 400mg a day. As of now her spleen has had over 35% size reduction, her platelets have seen increases to 49 when teens or lower were the usual and hemoglobin has also seen increase without transfusion. The fly in this ointment is the need to use hydrea the control WBC's that brings everything back down resulting in a transfusion of one or the other every three weeks. Are you currently on Fedratinib?
I'm not on Rux or Fed. But I see your wife needs HU to control WBC and the HU draws down other counts you don't want reduced. An outside thought comes to mind with interferon. Some of us on it, including me so far, see excess WBC reductions while other counts are affected less or more slowly. In fact the dose can be limited by WBC counts. Others posting here don't see this imbalance however. Has her Dr discussed this option? It might be a crazy idea, but maybe worth asking Dr? Rux and INF have been trialed together so it is possible in different conditions.
I also found HU also reduced all counts together more than with INF.
EPguy, good point, I will ask her oncologist at her next appointment. Thank you.
EPguy, the reply to interferon in place of hydrea is it's too toxic for her. Thanks for bringing it up and giving me a chance to ask.
Good to have a clear answer. Seems they already tried treating her with low dose PEG INF.
Maybe Momelotinib and Galunisertib hold an Ace.
I've not heard about Galunisertib before. Are there some MPN studies going on for it?
EPguy, Galunisertib (LY2157299) is a specific inhibitor of TGF-β receptor I kinase and abrogates the phosphorylation of SMAD2. Studies have shown in mice with myelofibrosis that 4 weeks of daily treatment resulted in significant reduction of fibrosis.
ncbi.nlm.nih.gov/pmc/articl...
aacrjournals.org/cancerres/...
nature.com/articles/s41408-...
I did see the mouse studies. I can't find MF clinical trials. Unfortunately it seems Galun has been discontinued by the mfr:
en.wikipedia.org/wiki/Galun...
<<Development of galunisertib by Eli Lilly was discontinued in January 2020>>
But this report indicates it's still being tested for other cancers:
onclive.com/view/new-player...
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The 3rd report has a lot of neat stuff. An agent they mention is alisertib. There was a trial but no clear results.
beta.clinicaltrials.gov/stu...
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Many recent cancer studies have been toward TGF-β inhibition, incl Galun. So far no brilliant late results I can find. Interesting that Curcumin and N-acetyl-L-cysteine (NAC) are active against TGF-β also. I have been taking these.
Good afternoon Pte82
Apologies for the delay in getting back to you, the information is very helpful indeed.
I understand your treatment is being administered in the USA where the drug was approved by the FDA in August 2019.
NICE approved the drug in England in Nov 2021 and hence I understand may be a limited response
I do not take Fedratinib but there is a distinct possibility in the near future.
Regards
KB
I wish pacritinib was available in 2019 it was actually FDA approved Feb. 28, 2022. My wife began using it in March and it has taken until June to see spleen reduction along with increase in platelets and hemoglobin. I hope it becomes available for you sooner than later. No doubt something else in the pipeline will improve on it but at least it offers a respite from constant transfusions. EPguy offered a good question for WBC control that I'm eager for the answer.
I recently found an interview from Dr Ruben Mesa, see post link here. His comment on Rux vs Fed: <<it’s not clear that there is necessarily a clear advantage between one or the other>>
healthunlocked.com/mpnvoice...
The newest agents, Vonjo (pacritinib pte82 notes) and up coming Momelotinib do have potential to help with PLT and anemia respectively.
Does anybody else have
Breakouts on the face
Acupuncture, ET and Platelets
Bone marrow biopsy 
