jak2 90%

[Pv2003]

hello all!

After many years of having just 2 phlebotomy’s a year, I now have had 4 in the last 5 months. We checked my Jak2 and it is now 90, up from 7 in 2020.

2020 we were taken off Pegasys, which I had been on for 12 years, because I got nhl. I have not been on pegasys since. My counts have slowly been rising over the last 5 years. Counts now, wbc around 11 platlets between 350-450, spleen only 13cm, some mild itching after showering, is the only symptom.

I will be seeing dr.stein at northwestern in May,and will hopefully get on interferon. Expecting a fight from insurance though.

Anyone else have a Jak2 burden around 90 with pv and how is your experience with burden that high?

I had 90 Jak2 burden in 2008 when I started peg.

Back then spleen was as large, wbc was near 30 and platles around 700

Got down below 10 after many years.

thanks

[hunter5582]

If by NHL you are referring to a Non-Hodgkin's Lymphoma, very sorry to hear you had a secondary cancer. If so, it seems likely you may have had to come off the PEG to treat, perhaps with R-CHOP.

The complexity of your case assuming the above is accurate makes it very important to ensure that you consult with a higher level MPN Specialist. Perhaps consider a second opinion as well.

Now that Besremi is making it onto formularies, it is not as difficult to get is approved. It can still be a challenge on some plans. It helps that it is in the NCCN guidelines as a preferred treatment option for PV. It is worth noting that if your doctor cannot get it approved, that is not the end of the process. Patient-filed appeals can succeed where doctor-filed appeals do not. It is imp[ortant to understand how the process works in order to succeed.

Wishing you success moving forward.

[Mieshie]

I have ET, no PV. Diagnosed 3 years ago. Been on peginterferon for almost 18 months after trying HU and anagrelide. Each started to lower platelets but after short while side effects were overwhelming. No problems with spleen or WBC, only had high platelets at 1.3M. Had increased liver enzymes with all 3 drugs. Milk thistle extract has worked well to get them back to normal range. You have been on IFN before with good results. Hoping restarting it will be as good. Low dose starting and slow increasing may be advised but seeing MPN expert will certainly help set up your appropriate treatment plan. Maybe even a newer drug as noted by Hunter. FYI availability of IFN for me in Michigan has not faltered at all under new manufacturer. I don’t use a pen, get traditional vials through local hospital pharmacy. It’s retail cost is still expensive but thankfully covered by Medicare. I have a $5.11 drug copay per vial. Best wishes to your treatment getting back on track. Stay safe!

[Aldebaran25]

I have a very high allele burden, it was 79% when I started Pegasys in Nov 2022 and had climbed (!) to 86 % in Mar 2024 when I switched to Besremi. I am due to be tested again next month. I do not have any particular issues to be honest, the interferons have been controlling quite well my blood counts (I just had a phlebotomy after a whole year without) and I do not have any particular other issue. I think we tend to over simplify the meaning of JAK2+ VAF. It certainly is an important measure but there are many other genes involved and the outcome is very individual.

[EPguy]

I see that nhl can be connected to autoimmune diseases. Have you been carefully checked for such possibility?

[Pv2003 in reply to EPguy]

I never had an autoimmune disease. The nhl was stage 1, we thought it was a hernia at first. I likely had it for at least a year and 1/2 before getting it treated. No side effects from the treatment, and it was not a horrible experience. I was in good shape and only 52 at the time, so that probably helped.

I will be seeing an expert in May. I should be able to get on inteferon. My experience it just takes a while to work and high doses for me. I am hoping the new targeted jak 2 drugs by incyte and Ajax will work for us in the near future. We should know initial results of the phase one trials later this year.

[EPguy in reply to Pv2003]

That's good if a condition has effective treatments, sounds like you're ok on the nhl.

Agree on the new inhibitors, hoping for fewer sides and more effects. Is there info on data this year? That would be good progress.

On clinical trials.gov:

AJX-101 has primary ph1 completion late 2026 for MF.

INCB160058 has mid 2027, for any Jak2 MPN.

These two target the mutation specifically and require failure on an older Jak1I believe.

VGT-1849A has no trial record yet. It more broadly targets Jak2, but leaves out Jak1, which Rux also targets by design..