Allele burden reduction!

[Lucylottie]

I have been on Pegasys for the two years since my diagnosis of PV at age 59, initially on a weekly dose of 45 mcg and for the last year on 67.5 a fortnight. My JAK2 allele burden was 34% at diagnosis but my 2 year test results have just come in a phone call from my very excited MPN specialist - my AB is now 2.1%!!!! I realise my PV journey could be a rollercoaster ride moving forward but I feel delighted with this news and will be keeping everything crossed that my allele burden remains this low and Pegasys remains available 🤞🏼I hope this result can offer some encouragement to others on this journey.

[dbus1417]

very cool. Hope it stays low! I think less than 1% is within detectability limits for the test 🤯

I’m curious how my ab is doing now 🫣

[ainslie]

congratulations, delighted to hear it’s going well for you

[Solyesh]

What great news! Yes let's hope they get the Pegasys supply sorted and quickly

[Spanelmad]

What a result!!

[hunter5582]

Great news. Glad to hear it. You may be one who reaches a molecular remission.

[kamiilos]

Well done Congratulations.

[Minify]

Was that a bone marrow or blood allele burden?

[Lucylottie in reply to Minify]

It was a blood test

[Ovidess in reply to Lucylottie]

Are the blood tests a new option? I'd rather not go through a BM biopsy again, but they did not give me an option. Are they equally accurate? More expensive? Anybody know?

[EPguy in reply to Ovidess]

For Minify: Bone marrow here means a biopsy (BMB) to take a marrow sample and diagnose the condition of the marrow. Allele burden is the % of Jak2 or others (CALR, MPL, ASXL2, TET2...) that are mutated.

Blood test is the more common way to get regular allele burden (VAF) results since it is less painful and easier to do. It gives reliable results. The one from BMB (marrow) is also reliable but can give a different result than blood. So a blood results can be compared over time but should not be compared to a BMB result. Mine were 14 and 19%, quite different.

Blood should be cheaper since there is no Dr procedure required. It's not a new option, mine was in 2020 and I know it goes much earlier than that.

[Franko21]

That’s such good news for you . I too hope Pegasys is sorted soon .

[ABPD]

Great news

[Lyndjs]

Brilliant, thank you for sharing 😊 so happy for you, gives us all hope xx

[lizzziep]

Good news!

[Looolooo]

Really great news! What all of us hope for.

[RedCardRob]

Great news after 2 years

[NickyRobinson]

Congratulations, it lovely to get great news, it’s always makes you feel a lot more positive when dealing with having an MPN ❤️

[Bluetop]

Good news to share! Hope it continues.

[Mishie14]

Congratulations! I am very happy for you and us MPNers who have another example of treatment that is working. Good job Lucylottie.

[Roxanne22]

Thanks Lucylottie. This is wonderful news and I am hoping that my trajectory is following a similar success story in year or two ahead. I started besremi this week, and have been delighted so far as no tangible side effects so far! And the first time no night sweats in years. Great start, however my main objective was to reduce AB which was around 77%. Fingers crossed and thank you for sharing your pos+ news! All the best.

[RoundTheWorld in reply to Roxanne22]

I'm new to Besremi too (started a week ago, previously on Peg. since this summer).

[Roxanne22 in reply to RoundTheWorld]

Ooh hope it goes well for you. Has transition gone well? I wasnt on anythg at all excp venesection and aspirin so brand new line of treatment. I hope your nxt chapter goes well. Let me know how you get on!

[RoundTheWorld in reply to Roxanne22]

Thanks - no problems with transition and it’s nice to only having to inject fortnightly.

Had a venesection yesterday but nothing to do with Besremi (HCT had annoyingly gone back up a bit on Peg. before I switched - maybe due to a slightly longer time between doses due to the shortage, or maybe coincidence).

Obvs v interested in how you get on too. A few of us seems to be swapping over at the moment. Here’s hoping it does its its job well.

[KLCTJC]

I needed this today! I did labs yesterday and will get results today. I always get so nervous and was looking for encouragement! This was it! I am so happy for you and thank you for this!

[SouthSideA]

This is great news and encouraging for all of us on this medication. Thanks for letting us know. Do you or others know how long it takes for Pegasys/Besremi to lower the allele burden significantly? I began the medication in June and my allele burden has not moved much. Thoughts?

[Dovakin]

Amazing news and results!

[Pogm]

What great news! You give the rest of us hope!!

[Bongo63]

well done Lucy, sadly mine did not improve on Pegasys or Hydroxicarbomide, luckily it’s responding to ruxolitinib but I’m no where near your readings. May yours long continue 👏👏👏 my allele burden started at 86.2% it’s now down to 41.61 on ruxolitinib

[ritaandscooter1]

How have you been feeling during this Pegasys journey? Do you get to reduce the amount now? I'm so interested in knowing if there is anyone on this site that is in complete molecular remission from interferon. In other-wards can completely go off the drug. Hope yours is such the case. Kerry

[EPguy in reply to ritaandscooter1]

Member Shiftzz is at undetectable for a while as of last posts. But he is not in remission of the MPN. So this is one case for which VAF elimination has not yet provided the option to pause the IFN. Hope to hear from others.

[ritaandscooter1 in reply to EPguy]

Yes I have followed Shiftzz as well.........just wondering if he can go off the drug now and start feeling better. He's posted often about feeling terrible despite being undetectable. Would be great to hear from others. I only know one person who was cured on the Patient Power MPN site. She had PV and was cured in 6 weeks from Pegasys. This is rare and completely unheard of. Her and I corresponded back and forth about 5 years ago. Her story was the reason I decided to try Pegasys. I just don't hear of anyone being cured on interferon or by lowering their AB. Perhaps more stories will appear. I'm set to go for a Mayo clinial trial hopefully in January......to do with keeping the iron in my body without causing my blood numbers to go up. I'm doing good but have the fatigue from low iron stores. Hope all is well with you. Kerry

[EPguy in reply to ritaandscooter1]

That cured person should be a published case study. Do you know whether that happened? I agree on not hearing of this, even the Silver MPN group has not made such a specific claim I don't think. Do you know what their blood counts and VAF was prior to Tx? It is quite amazing. I think it would take the new Jak inhibitors in trials for most to get there.

Wishing you well on the iron trial, that would be quite useful for many MPNs.

I'm up and down to extremes. The simple malaise I had on IFN was a lot easier.

[Manouche in reply to EPguy]

There’s another case on the literature :

« Case Report

The case is a fifty-six-year-old Egyptian gentleman diagnosed with hepatitis C virus infection in 2011 based on serology. Hepatitis C viral load was 2458678, genotype 4. Concomitantly, he was diagnosed with PV based on the WHO criteria 2008 due to persistently elevated hemoglobin level, above 18.5 gm/dL (13–17 g/dL). Further investigations showed Jak2 was positive with a low erythropoietin level. The patient received pegylated IFNα 2a in a dose of 180 mcg/week for 5 years. It took 2 years for the complete eradication of hepatitis C. He was cured of hepatitis c virus, and hemoglobin levels were normal (14–15.5 gm/dL), and repeated Jak2 v617f was negative. Bone marrow biopsy was done to evaluate for PV at the bone marrow level (panmyelosis). The bone marrow reported normal (no features suggestive of PV or other MPNs) »

pmc.ncbi.nlm.nih.gov/articl...

[EPguy in reply to Manouche]

Their conclusion is interesting:"For patients with concomitant PV and hepatitis C virus infection, IFN2 α is the preferred antiviral cytoreductive agent due to its dual effect."

Hep C has better treatments now but the dual action of IFN makes it still useful for HepC-MPN pts.

That was a very high dose for a long time. I think not many pts can tolerate that, but this one did well. An example of high dose for eliminating the clone.

[Lucylottie in reply to ritaandscooter1]

I have coped well with Pegasys with only a day of headaches and brain fog after injection but this is manageable with painkillers and certainly tolerable. My MPN specialist has suggested that even if my allele burden remains really low she would want to keep me on interferon.

[EPguy]

You're on a good track to be a good responder with ever less mutation. Wishing you exactly that and most important, feeling good.

[shiftzz]

Similar story, my AB/jak2 is now undetectable. I was on 135 pega weekly, them changed to every 10 days, now every two weeks...

Keeping going. .

[beetle]

it’s always good to read good news. So pleased for you

[azaelea]

Great news! So pleased for you!

[Pink1831]

Hi,

That is great news to hear, I wish you continued success in your treatment.

As someone who was diagnosed less than a month ago, please can someone explain the significance of the allelle burden. I have ET JAK2 + and was told my burden was 3%. I have no actual idea what that signifies? I’m thinking this is good as it’s low, but as I’m only on baby aspirin this will probably increase over time?

Thanks

Lorri