Hi all, just wondering if any folks who have been tagged “low risk” by your care team have tried interferon treatment.
I’m a 36 y/o female with PV (60% jak2 mutation), otherwise good health. My MPN specialist discussed the latest trials and research being done on “low risk” patients, stating I could be well suited for a positive reaction (e.g. mutation reduction) given my profile.
Has anyone started interferon while still considered “low risk” by your hematologist/MPN specialist? Curious about side effects, how disruptive you found it / impacts to your quality of life, and of course, if it worked to bring your mutation down.
Thanks in advance!
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TwinMom88
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While I am not considered low-risk at age 68, I am treating PV with Besremi. Besremi improved my quality of life compared to using a phlebotomy-only or hydroxyurea protocol. I feel better now than i did 10 years ago. My VAF has lowered from 38% to 10%. I am maintaining a complete hematologic response at 175mcg, but do need a phlebotomy about 1X/year.
Besremi side effects have been minimal, much less that the side effects from phlebotomy-induced iron deficiency or hydroxyurea. I get some itching/rashes that are well controlled by a daily dose of Zyrtec. I experienced elevation in LFTs, which is controlled with a milk thistle extract. I have a dose limiting factor in that the Besremi is causing mild lymphopenia and borderline neutropenia.
Part of the reason that I opted for Besremi is due to having an additional non-driver mutation (NF1) that increases my risk of progression to AML. My treatment plan includes the goal of reducing risk of progression.
The evidence for early intervention with low-risk PV using interferons is good, but not at this point conclusive. That is why we need the clinical trials. For what it is worth, I would certainly consider it if I was in the low-risk group. My only regret with the interferons is that i waited as long as I did to start.
You're only "low risk" for a blood clot, but actually high risk for future disease progression to secondary myelofibrosis and a shortened lifespan because your jak2 mutation is already over 50% at the young age of 36 - see brief video below and consider reading this article tinyurl.com/544sybph about how interferon slowed or stopped disease progression to secondary myelofibrosis. Pegasys interferon is available right now (in the USA) - you don't need to enroll in a clinical trial to get it. youtu.be/s9euOVQGhks
Agreed with this all (also, hence my quotation marks around the term “low risk”) - even if you think about only the passage of time, my care team and I discussed how my risk of progression is higher simply because this disease has more time to progress (versus if I’d been diagnosed at, say, 70).
Full disclosure, I’m based in NY and my specialist is at Mt. Sinai (he was interviewed with one of these Cornell Weill drs about the trials) so yes, we talked about doing this whenever I feel ready.
I’m sold on the benefits, a believer in the positive evidence (albeit not yet conclusive), but am only reluctant about the side effects and what they could do to my quality of life/ability to provide as a mom of toddlers who’s a sole income provider. Of course, that all goes away without your health, but it all makes me feel less experimental, if you will, than I might’ve been at a different time in my life.
That said, I’m seeing my regular hematologist again in 6-8 weeks and will broach the subject again. Am sure I’ll be reaching back out to this group as I navigate!
The Pegasy brand of interferon has been around for 19 years and counting, so no clinical trial are needed to get it. Dr. Silver at Weill Cornell says 80% of his patients are able to tolerate it long term. This Calif. specialist reports good patient tolerability too (1 minute video): youtu.be/OsdoYoA1kLQ
Yes. Perhaps my reference to trials was confusing. I only meant that in reference to the trials / studies being done, not in my ability to start interferon here in the US. Thanks for the share on other experiences!
it’s most likely a good idea to try it especially at your age, I wouldn’t worry too much about the sides because the worst scenario is you could come off again and almost certainly any sides will go away (mine did). Mount Sinai are very good, I see an expert there and if he considers you to be low risk then that’s likely to be accurate so I wouldn’t worry either way, 60% is not that high and the significance of lowering AB is not proven at this time despite us all presuming lower is good, you will get a fairly wide mixture of views on forums but only your specialist has all the info about you and hopefully expertise, don’t worry and good luck
worth trying Pegasys. Start on a low dose. It works for me with very few side effects. You can always change medication if it doesn’t suit you. It has been known for peg to put people into remission so nice hopes for the future. Good luck
I am 40 yo male with CALR (low risk) and started pegasys about a year ago. It is doing ok for me with the only side effect of high liver enzymes. I am managing that with diet and exercise. I actually wanted interferon because of its disease retarding properties. To me it is the best way to treat mpn if you can tolerate it.
Hydroxyurea works but it is kind of like putting a lid on a boiling pot. It will keep things under control until the heat gets high enough. Interferon kinda lowers the temperature and buys you more time while keeping things under control.
Your low risk depends on many important variables besides your age and percentage of Jak2. I was diagnosed at around age 43 with PV. and classified as low risk by my MPN specialist out of Mayo. I've essentially been on low dose aspirin (two a day) and phlebotomys every 3 months or so for over 20 years. I tried Pegasys for about a month and did horrible on an extremely low dose of 22.5mg. Effected my mental state, had high liver enzymes and basically felt terrible. In regards to progression it is critical that you get a BMB so you are checked for other non-driver mutations which play a huge role in progressing.
The verdict is not in yet regarding the role of the percentage of JAK2 in terms of progressing. Some doctors say its important and others say there is absolutely no evidence to justify their role in future progression. By the way I am now 63, have no other active non-driver mutations, have an allele burden (jak2) of over 95%, recent BMB shows no progression and feel great most of the time. Remember we all are different with how PV affects us and how each individual responds to a certain treatment. For me my personally my current regimen has worked better than all the drugs out there. I will add that being very physically active and taking care of your health makes all the difference in the world! Gather more information besides your percentage of Jak2 mutation before making a decision on treatment. Best wishes.
This is a very interesting and useful post in that it shows that you’ve had your MPN 20 years, have a high AB but the BMB (the gold standard for checking for progression) shows no progression and your not on cyto, possibly a plus for you is no other drivers but we don’t know that for sure.
Thanks for posting, it’s re assuring for those who can tolerate or don’t want cyto drugs.
Of course we have to factor in that we are all different .
In 2014 it was already known that: "Low dose interferon is the only agent having the potential to induce "minimal residual disease"/"operational cure" in myeloproliferative neoplasms."
I think I fit in this category. I am 42 and have been on Besremi for a year. Even before it was decided that they wanted to put me on it I wanted to try it. It has potential to slow progression to MF or AML. To me it was worth trying it. It was the reason I joined this blog. Asking real people who were taking it how it was going. They all reassured me. I am now treated for hypothyroidism but to be honest I probably previously needed to be treated. I went back recently through all my old thyroid labs and my tsh was always 5-7 before starting Besremi. I just never complained of symptoms. And really besides my thinning hair from it when Besremi bottomed out my thyroid I have been ok. Had some menstrual issues too which again is more likely due to the thyroid. I am now a proud owner of an iud, but that too has gotten better. I feel great! Working out 6 days a week, working, I am a mom and a wife. My last two cbcs were normal. I haven’t had phlebotomy in a year. I am not saying I haven’t had bumps in the road but nothing I can’t handle and worth the future potential! If you ever have any questions I am always here to help!
Important question. When I was diagnosed with ET Jak2+ a few years ago at 48, I was considered low risk as well but that is primarily driven by age (<60) no history of thrombosis and no symptom burden...after my BMB revealed an allele burden of 40% (ET avg usually about 24% and pre-PMF in studies about 38%), min fibrosis (between 0 and 1) and given my persistent leukocytosis (WBC always above 13); high LDH and low EPO - I pushed my MPN specialist to take another look to see if we were dealing with pre-fibrotic PMF and not ET (the WHO had just published the diagnostic criteria for pre-PMF and from my reading of the situation I had all the major criteria and 2 of the minor criteria). His initial reaction was that we really would not treat the two differently at this stage - I pushed back and said that while there might not be all the scientific evidence yet in that progression is linked to level of allele burden - I would have to believe that lower is better all else being equal and given that I would hopefully have another 30-40 years with this disease I had even more time for possible progression so why not try what we could...
He agreed and it actually became a moot point when my PLT shot up to 1,400 and I had some bleeding - cytoreduction was indicated so we started (first Hydroxyurea until again I pushed for Peg and he got the hospital review committee to approve it) - I am very glad I started on Peg. We haven't checked the allele burden again but likely will after we hit the 2 year point on a steady dose of Peg (there was some ups and downs as we adjusted dose and timing)) - but my recent blood tests indicated that ALL my readings were within normal limits for the first time in at least a decade....
Have not had, beyond some initial elevated liver enzyme readings (which we addressed by taking a med holiday and then going back but halving the Peg dose) and some initial fatigue any side effects (and the fatigue also dissipated after about the third dose). Of course, I am also a firm believer that exercise and eating right help a lot but am very happy to have started the Peg as an initial "low risk" patient - I also have a low TET2 (4%) driver mutation...
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