The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional mutations which took place in 35% of patients on Ruxolitinib, most notable the ASXL1 gene, which was found in 64% of patients who acquired new mutations.
We asked one of the authors - Dr. Serge Verstovsek - about what patients should take away from this article. He responded "While ruxolitinib in great majority of patients controls symptoms and signs of myelofibrosis very well, and with that may prolong life expectancy, it does not prevent a change in diseased cells, which can acquire new mutations or other characteristics that will make them resistant to ruxolitinib. This leads to a loss of a control and poor overall outcome. Therefore, one would like to encourage patient to consider a bone marrow transplant while doing well on ruxolitinib, to be potentially cured."
This provides further motivation for studies that explore why people with ET or PV progress to MF and/or have a worsened prognosis, and how to stop that progression. It also supports the need for more therapy options for patients who can't take Ruxolitinib, or who must stop taking it. We encourage you to share this with your doctors, nurses and care team.
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Paul123456
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Obviously Maz will give the definitive verdict re chelsea1’s post from earlier but this article, released today, seems to me to be positive about benefits of Ruxo. As I’ve posted recently, there are a number of promising new drugs in trials that could be of benefit to those who don’t respond to or stop responding to Ruxo.
Hi Paul , I had a scan at report and seemed tad scare mongering to me as the charge against Ruxolitinib was unproven. These test subjects I would expect were medium to high tis MF as was I when first on Jakafi. So you might expect changes or worsening of their condition once off Rux. I was on it over a year and it did help some symptoms but I always knew my friend ly MF was marching on so I opted for SCT while the going was reasonably good.
Interestingly I'm back on it post transplant and it has helped ne get off steroids , im unsure of further benefit except perhaps reducing the chance of MF coming back?. I don't think I will be on it long term but it will be under scrutiny if I develop any other nasty mutation.
So I think we should accept it helps alleviate symptoms and helps most feel much better whilst taking it. Some Forum members have been o it several years to good effect.
Thanks Chris. That’s also my reading. As well as being at the more advanced end of the spectrum, my understanding is that some of these mutations had not been discovered at the start of the trial? Hence how do we know that didn’t pre date treatment and more a function of the advanced nature of the MF?
Are you aware of any recent treatment advances in SCT techniques? Just wondering what you see from the front line.
Absolutely agree re pre-ex is tinting mutations, and the fact that a number had passed away tells you they were probably to old or I'll for transplant. Talking of which I know they very much learn on the job and though I'm unaware of any major advances I know by them learning from experience there are many incremental gains. I have /had Graft Versus Host Disease at Stage 4 of 4 stages and there is a real focus on this area to prempt the onset of GVHD by doing risk analysis.I've always been told that some GVHD is good as it shoes the Graft is working but I believe the latest thinking is maybe it doesn't matter.
There's talk of giving patients drugs like Ruxolitinib to control GVHD before it flares. Also I had a reduced intensity allogeneic transplant which meant a much lower chemo dose and no radiation treatment. Great. ☺
As many of you know, I have been on Ruxolitinib for getting on for five years. It has by and large kept a MF symptoms relatively under control and has been the only drug worthy of that praise so far. Nobody ever said this would be a cure and the fact that the disease marches on in the background is what I am dealing with and never had any illusions about the drug doing anything else
I did not think this was a scaremongering report as it is not telling us anything new. It is another baby step in the research process and as such should be treated positively.
Maybe Ruxolitinib has extended my life I don’t know but I know I am still hanging in there awaiting the next treatment option as I am not a suitable candidate for SCT
Jan my friend you are a prime example of someone who has benefitted enormously from the drug. Long may it continue. I think it is fantastic that after many years there are people willing to undertake research and develop new drugs for orphan dis eases like MF. Hats off to them.
I agree wholeheartedly Chris. Yes, I have done well on Ruxolitinib and recent dose reductions for various reasons have demonstrated that the drug is still active in suppressing symptoms such as itching, bone pain etc. I think my spleen is getting larger as it is more uncomfortable more of the time. I’m also running very low Platelets and White cells probably due to disease progression with red cells supported with transfusions.
Claire Harrison did not think the traveling from Devon to London for trials was warranted at the moment. She said she wouldn’t do it but I am very grateful to all the human guinea pigs who have been brave enough to road test the many different drugs I am benefiting from right now. I’m just hanging in there for the next revolutionary bit of research!
I have just been put on the Jakafi due to the side effects (bone pain..nausea) and after two days I can tell that I have some more energy. My hematologist is using this for the first time on someone who has PV with JAK2 and Thalamassia.
I guess my question is, will taking this cause other issues down the line? My BMB showed confirmation of having PV and I will be asking to have a PET scan for this is my third cancer. I have had melanoma, Squamish and now PV and it would be nice to confirm that nothing else is hiding out there 😱.
Will keep following so I can pass along info to my Hematologist.
I’m sorry but I can’t advise. I’m taking Pegasys since there is a chance it may slow progression. I think Jakafi is more about symptom relief, it’s an anti inflammatory.
There are some people on a combo of both and might be worth asking your Hem about this. It may still be in trials only.
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