The results are in from my labs on 12-02-2024. Overall, it is good news.
JAK2 VAF is stable at 10%. This is the same as last year.
History JAK2 VAF - 12/23=10%, 12/22=9%, 05/21=38%, 10/20=29%, 9/20=26%, 03/19=25%
This is my take on this. While I would like to see the JAK2 VAF continue to decline as it did from 05/21 to 12/22, I am OK with it having plateaued. Looking at the numbers from 09/20 to 05/21, the JAK2 VAF had increased from 26% to 38%, That is a 12% increase in less than one year. Note that in the year prior the VAF had only increased by 1%. I take this as a possible sign that the MPN was picking up steam with potential for progression. I am going to review this theory with the MPN Specialist in January. We will see what she has to say. Regardless, not progressing is a good thing, particularly considering the dramatic VAF increase from 09/20 to 05/21. Noting that 05/21 is when I started on PEGylated interferon, I do not think reversing/arresting the progression in VAF starting on this date is a coincidence. I am in agreement with my MPN Specialist that reducing VAF is a good thing even if we do not know how good it is.
The CBC looks good. HCT is gradually creeping up. Now at 44.8%. This is not surprising given that my iron levels are also creeping up. All iron numbers are now in the normal range for the first time in a long time. NEUT is low at 1.46, but still above the cutoff we set (1.00). LYMPH is also low at 0.71, but still above the cutoff we set (0.50). I will discuss with my MPN are team whether I may be able to tolerate a bump up in the Besremi dose to from 175mcg to 200mcg as an alternative to another venesection. PLT is well controlled at 202. All the other numbers look good.
The CMP numbers are OK. AST/ALT are both a bit more elevated this time, about 2X/Upper limit of normal. That is the highest it has been in a while since I started on the Milk Thistle Extract. I am not concerned nor surprised. I have been making a bit merry during the Holidays. Reminder – Be Kind to Your Liver.
The update on my brother is looking better. He just completed his third round of RCHOP to treat the Grade 4 Lymphoma. The full body PET scan can no longer see the lymphoma. That does not mean the cancer is gone but it is a very good sign of his treatment response. He has three rounds of RCHOP to go, then reassess his status. He will likely need two orthopedic surgeries as well. Something to note is that the hospital he was at was not doing a very good job with his care. Likewise, the orthopedist he was seeing. He has switched his care to an excellent oncology center, City of Hope. The cancer care is significantly better. It is a good example of why it is so important to not accept anything less than optimal care. Your life may depend on your choice. Assertive patients receive higher quality care. Passive patients do not.
I will meet with the MPN Specialist on January 13. Will update when I have more news.
Meanwhile, wishing all of you a Peaceful and Joyous Holiday Season.
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hunter5582
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Great news Hunter! Thank you for sharing and for the detail you give on your numbers. It is always helpful to have results from others with MPN and gives us more data points to compare and track. We will be interested in your updates after your January session with your MPN Specialist. Thanks also for an update on your brother's progress. Wishing you and your family a very happy holiday
How will you decide whether to increase your dosage or tolerate an infrequent venosection? It's a balance on risk of increased dose vs risk of infrequent venosection.
It is a balancing act question. While I would prefer to increase the Besremi dose, I have experienced lymphopenia and borderline neutropenia. A higher dose risks dropping below the thresholds we set. I feel much better with my iron levels normalized, so I am reluctant to lower then with a venestion; however, the occasional venesection has been tolerable. I feel OK provided the iron levels do not go too low. I will discuss the issue with my MPN care team.
Understand. For me a once or twice a year venosection would be preferable to getting side-effects that could jeopardise on-going use. I'm now likely to have to stop taking Peggy due to Neutrophinia.
Thank you for the updates on you and your brother and glad it was mainly good news. You made me smile re. making merry; good to hear you are (as usual) living your life while keeping an eye on the numbers.
Thank you as well for your posts this year - they’ve helped me understand everything better, work out what to ask and try to keep things in perspective.
I wonder if you’d mind me asking:
- ‘you write ‘This is not surprising given that my iron levels are also creeping up.‘ . Does hct increase mainly because more iron feeds RBC production? Are there other key factors?
- I’ve been poorly this week ( v nasty cold with a lot of fatigue and dizziness). I swapped to Besremi from Peg a few weeks ago and having more frequent venesections until that takes the load. I’m trying to work out why the cold hit me so hard - coincidence, change of drug, timing venesection (probably a combination of the above?). You mentioned the affect venesections had on you previously - was this fairly immediate in terms of fatigue? I’m not anaemic but my ferritin was near the bottom of normal range before my last venesection.
You have it precisely correct. Iron is the fuel for RTBC production. Less irton = fewer RBCs. AT the core, PV is an iron dysregulation disorder. Due to the JAK2 mutation, the body is constantly using the available iron to make RBCs even when they are not needed.
You also correctly point out that you can be iron deficient as indicated by low ferritin but not anemic, having adequate or too many RBCs. unfortunately, iron deficiency without anemia can still have adverse effects. For me, this included fatigue, memory/concentration loss, and cold intolerance. At one point my ferritin got so low that it did not register on the lab. The loss of energy levels and other symptoms took some time to show up. It was not immediate.
I think you likely have it right about a combination effect. It may be largely just a nasty cold, but your body is also responding to the change in medication and having a recent venesection. You will know better then the cold resolves. It will be important to let your MPN care team know if the fatigue and dizziness do not resolve with the cold.
Thank you. As my congestion clears I'm feeling more human so I think it was just a really nasty bug and rubbish timing.
'Good' to have had the PV diagnosis this year - the many years of taking iron tablets (& iron infusion last year) were clearly not the best course of action!
Hunter - thanks for the update and reminds me I need to do one as well - it looks like things are going well and may they continue that way. Happy, Healthy and Joyous Holiday Season.
hello hunter - so good to hear things stable(ish) for you with some decent blood results and that your brother responding to treatment (that’s a harsh regime and as you say so important he has a better team - I maybe taking a leaf out of that book soon after I get the results of my re staging on the lymphoma side)! Very best to you for the holiday season. Anne-Marie.
Thank you for your update and all the information which helps us all. Wishing you and all your family a very Happy Christmas and a happy and healthy 2025.
Not increasing VAF is a good medical outcome. That is a very fast test result. I just got a draw for VAF level, but it's usually been 1-2 weeks for results.
Wishing your brother well. seems good news so far.
Thank you for letting us know how you are; it sounds like generally good news and a better end to a ghastly year. I was so glad to hear about your brother although the treatment must be so tough for him. Thank you for all you do for us and for your message of assertiveness. Wishing you and your family a healthy Christmas and good times together.
glad to read that your results are relatively stable. Hope you have a special time at Christmas with your family and brother, if you are meeting. You both now have good medical teams which is key to good treatment, and a lot to be thankful for.
All still sounds positive. I have never asked for an allele burden and neither oncologist has done it. Of course if we do it now it would at least give us a starting point to compare in the future. But you know I am a weirdo! I have this funny feeling which has no science behind it. That my stuff was all driven from pregnancy. Then the MS which I never knew I had. But my labs on Besremi have been good, besides the need to watch the wbcs and now my platelets. I still don’t think it is a coincidence that both diseases are treated with interferon. My labs this week were hct 37.4, wbcs 2.6, neutrophils 1.9, lymph 0.6, platelets 124. I am going to ask for once a month dosing in February at my next appointment. I haven’t had phlebotomy in almost 2 years. I think my case is just weird! Some in good ways and others in I don’t know what the hell happened way! I am still on 175mcg like you. Trying to keep local oncologist calm, MDA says keep going as is! My other labs seem to be tolerate it too so I never want to stop it! My GFR is not what I want, 86 which is ok, but drives me crazy! Who knows how that happened, but it bothers me. But been that way for 3-4 years now. Going to do some additional tests for MYSELF in February, I apparently am the only crazy person that cares about it, sorry made this reply about me! I am glad to hear your brother is doing better!! And thanks for all of your updates it is very helpful!
Your low counts are a great response and do suggest a dose reduction. Has your Dr said why not? My Dr early in my Bes period wanted to hit the VAF hard, hence a higher dose than I wanted, But you're not tracking it and does the higher dose help anyway? Odds are your mutation is responding well with those great blood numbers.
Did your GFR change with any new meds or conditions?
My local doc would reduce in a heartbeat. MDA doc last time was hesitant I guess because I was doing so well. I think once a month dosing is the next step that is going to work. Going to discuss and push for it at next visit. I really think I am responding well.
As far as the GFR. Not much has changed since I started this journey. Was better before I had my daughter and right after. And was a tiny better in the ER the night I presented 4 years ago. I believe the high hct and PLTs affected it. But no one has worried about it but me. I also lost weight, and I was small to begin with. And I work out a lot. So going to get c cysteine level in February too as that is less affected by muscle mass. It only bothers me! I literally drive my love ones crazy over it and it is silly! No one else, nor would that GFR bother me with any of my patients. I think it is just everything else seems to be lining up so it bugs me. But it truly hasn’t changed in 4 years which is good. It will bounce around a little but really mostly in the 80’s which technically is ok. And I don’t have high BP or diabetes. Just another irritation I can’t control and have to accept! But grateful I am still ok.
Thank you for your input! Always appreciated! Hope you are well! Happy Holidays
It's great to hear good news. May you continue to always have a good report. Sounds like your brother is on the path of remission which is fantastic. May you both have a blessed Holiday Season and continue with good health. Blessings from LA( LOWER ALABAMA)😁
Ditto - thanks Hunter for your update on your health and your brother's too. You are a fabulous role model for all of us and we are indebted to you due to to all your knowledge which you tirelessly share. Merry Christmas to you and all the family and a sincere thank you.
Thank you for taking the time to write this in depth update. As always very informative, measured and wise It is good news indeed to be stable and that your brother is responding well to treatment! Wishing you and your family a Merry Christmas and a healthy New Year ahead!
Good luck Hunter and many thanks for sharing your joys and sorrows with us. Your posts are always worth reading and so knowledgeable. Have a very good Christmas and all good wishes for the new year.
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- it looks like things are going well and may they continue that way. Happy, Healthy and Joyous Holiday Season.
Clinical impact of mutated JAK2 allele burden reduction in polycythemia vera and essential thrombocythemia
