The Good News is that all CBC and CMP on 08/16 numbers are looking good.
HCT=43.9%
PLT = 294 (lowest I can remember seeing)
NEUT = 1.79 (WNL)
LYMPH = 0.68 (low but acceptable)
ALT 07/05=60(H) 08/16=43 (WNL)
AST 07/05=53.0(H) 08/16=34.0 (33.9=WNL)
So a brief blip up an the liver enzymes that resolved. Be kind to your liver! It seems that 150mcg Besremi is the right dose for me. No issues with the itching/rash lately so the Claritin seems to be working (or I am just adapting to the Besremi). Most importantly I am feeling great these days. My quality of life is certainly better since starting on the Interferons.
New Old News. Very peculiar. I was looking for my CMP on the Labcorp portal and found a report I had never seen and was never noticed about. Turns out my hematologist ordered a JAK2 Quantitative Analysis on 05/19/21. Since my doc and I never discussed it and it is not in my record at his office, I am assuming her never got noticed either. It was significant in that there was a jump up to 38%. This was after a period of very slow progression. I take this as a sign that it was a VERY good thing that i started on the IFNs.
MAB hx
03/20/19 = 25%
09/28/20 = 26%
10/23/20 = 29%
05/19/21 = 38%
I will post the JAK2 report below for anyone who has not seen on before.
A bit more good news - I am off to Europe for a holiday starting 08/22. going to Brna, Czechia to visit family then heading out for a 12-day cruise of the Mediterranean (Italy, Croatia, Monaco, Morocco). I am really looking forward to the trip.
Wishing all of y'all all the best.
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hunter5582
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Wow that’s those are some great results! Do you do anything different to bring your liver enzymes down? Mine are all above normal. Congratulations and have a fabulous trip!
I had a "be kind to my liver month." In the weeks prior to the 07/05 CMP I had a nightcap almost daily. More than I usually drink. I cut back on the alcohol and the numbers came back down. Besremi can be a bit hard on the liver. Best to not take chances.
Great news ... And it must be reassuring for you. Enjoy your holiday and seeing your family. Thank you for sharing your wisdom and knowledge on this site - very much appreciated by many of us. Save travels!
Thanks. A question, do you know what to do if you forget a doses? Where can I read about it? Good trip!. This is wonderful. I went there before Covid times. Have a good time there.
I do not ever forget a dose due t multiple notices on my computer and phone. If I did miss a dose, i would take it as soon as i remembered. The instructions say to skip the dose if it has been more than 2 days since you were supposed to take it. ema.europa.eu/en/documents/...
Wow that is such a great outcome so far . Makes me a bit hopeful. I start Peg In October as HU was horrendous. Delay because I caught Covid & told have to wait until out of system. I am ET Jak2 positive & sensitivity is bad to all drugs . Have a great trip some lovely places on your list.I sail as a hobby & volunteer on a charity Tall Ship Jubilee Sailing Trust. I went across Pacific on it & lots of friends from U.S, made .
So hoping I can get used to injections & continue travelling once used to them & carrying them abroad . Thnx so much for all your information . Julia . Devon . U.K👍
My doc has no problem with ordering tests when indicated. Fortunately I have good insurance that covers it.
Liver numbers are back within normal limits. Be kind to your liver! thyroid numbers are fine.
I am 67.
I have been on HU three different times in the last 30 years. The first two times were OK. The last time in 2018-2019, HU was ineffective and I experienced significant toxicity even at very low doses. The MPN Specialist I consulted said it was very clearly the wrong drug for me. I have tolerated Pegasys and Besremi quite well and the interferons have been far more effective.
I am very glad I started on the IFNs. They are more effective, easier to tolerate, and my quality of life is better.
I was diagnosed with ET in my 30s. It progressed to PV around age 59. I am now 67. I was not able to tolerate HU and it was ineffective. I am very glad I started on the IFNs. They are more effective and easier for me to tolerate. My quality of life has improved significantly. In addition, I have a non-driver mutation (NF1) that increases my risk of progression. The IFNs are the only disease modifying treatment option, reducing risk of progression. I am very glad I opted to treat with the IFNs.
Not a doc. Just a guy with PV who has done a lot of research and educated myself so I can make good decisions.
Regarding HU vs IFN, we all respond differently. HU was just too toxic for me to tolerate. i have done way better on the IFNs. The newer PEGylated interferons are much easier to tolerate than the older versions of HU. I am very glad to be on Besremi. It has certainly improved my quality of life.
Thanks for posting this reference. It is consistent with what I have seen before and supports my own opinion that when it come to JAK2 MAB less is better. More not so much. I expect that monitoring MAB and other genetic factors will become the standard of care before too much longer.
Looks good, I heard that AB Can jump around a bit and only one was up, the next one maybe more meaningful, it still low at 38. Dr Spivak said that us with AB under 50 are likely in for an easier ride.
The interferons have the potential to reduce allele burden. Sometimes the JAK2 mutant cells can be reduced to less than 1% - undetectable. This is considered to be a complete molecular remission. It is not clear how long this will last. It is not considered a "cure" but it is certainly a desirable outcome. research is underway to see if people who achieve remission can stop treatment with Besremi and stay stable.
There is still debate about the significance of a reduction in JAK2 allele burden, but I cannot see how it could be considered anything other than a good thing.
An AB less than 1% is not per se undetectable, but is considered as a deep molecular response. Strangely enough, some patients still need a cytoreductive therapy with a JAK2 allele burden as low as 0.75% . Therefore a full remission would be better defined with an AB < 0.01%.
That is presumably what it means. In addition one would hope remission of the symptoms and risks of the current MPN. Note that the research on Besremi indicates that it reduces risk of progression to MF for PV. It is reasonable to think the same applies to Pegasys and the the treatment of ET. We need more good data on this issue of molecular response.
I think we need to be careful here. The data on besremi shows that it can reduce the jak2 burden. However nobody knows if this translates to lower risk of progression to more serious illness.Not enough data yet to support this.
There is actually some data available on the issue of reduction of risk of progression. Here is one example.
Disease transformation of JAK2V617F-positive MPNs may arise from accumulating genomic instability promoted by the expanding pool of homozygous JAK2V617F clones [12]. High JAK2V617F allele burden is a risk factor for progression to secondary myelofibrosis in patients with PV [13, 14]. Since alfa interferons reduce the JAK2V617F allele burden, this finding is congruent with an improved myelofibrosis-free survival rate reported among interferon-treated patients with PV compared to those receiving hydroxyurea or phlebotomy in a long-term retrospective study [15]. In the PROUD-PV/CONTINUATION-PV trials, conducted in an early-stage PV population, a fivefold lower incidence rate of disease progression (including myelofibrosis and leukemic transformation) was observed in ropeginterferon alfa-2b treated patients compared with the control arm, although these events were too rare to allow statistical comparison, which would require longer follow-up.
We will, of course, need to see more longitudinal studies as well a replication of results.
"although these events were too rare to allow statistical comparison, which would require longer follow-up"Exactly my point, there is not enough data to support
reduced disease progression.
I consulted with my MPN specialist, simple direct question.
"Will besremi reduce my risk of progression to more serious
illness?"
Answer: " We don't know, not enough data to support that
James I totally agree with your above statement regarding being careful about stating that INF can lower the risk of progression. Maybe I'm an outlier when it comes to PV. I am 61 years old, have had PVjak2 for over 20 years, managed strictly with aspirin and phlebotomy's every 3-4 months. My numbers have always hovered around PLTS: 1000-1200 WBC: 22-30 for all these years. Tried PEG very low dose off and on for 7 months. My body/liver couldn't handle this drug so my MPN specialist out of Mayo recommended 2 aspirin a day. I have been almost symptom free except for iron deficiency. Anyway I recently had a bone marrow biospy that showed my AB at 93% and absolutely NO progression and healthy looking cells after 20 years of having PV. There was zero evidence of disease transformation. My hematologist said, there are two large groups of MPN specialists with one believing that AB plays a significant role and the other is not convinced because there is not factual evidence proving this role. Both my hematologist & MPN specialist are not convinced that lowering ones AB lowers the risk of progression. I am living proof that AB at 93% has not led to disease transformation in my case. Kerry
I'm not sure but I think the lowest VAFs require a different sequencing procedure, so if the lab does not use these enhanced procedures they may report a higher limit of detection. Is that reasonable? It could account for mushiness in some data.
Some are even limited to 5% and higher, which puts them in the Qualitative category.
Enjoy your vacation, I am jealous of both your vacation (haven't been on one since the start of Covid) and your chart of results. I would love to see all my numbers for the year in one place. Would help if I didn't go to 3 different labs.
You may have to make your own chart if you are using different labs. That is unless the hematologist has then in the EMR at that end. that is where I am printing these chartes from. it is a function built in to the patient portal. Very useful.
JAK2 mutated hemopoietic stem cells have a clonal advantage over wild-type (normal) cells. Over time, the allele burden tends to increase. This can be very gradual, but at times can increase rapidly. Mutant Allele Burden (aka Variant Allele Frequency) is related to symptom burden and disease presentation. People with ET tend to have the lowest allele burden, people with MF the highest, and people with PV in the middle. Note the use of the word TEND. There is not a linear relationship. MPN presentation is much more complex than allele burden alone.
My allele burden had been fairly steady, slowly progressing. It shot up by 11% in less than a year. There was no change in my PV status based on symptoms, however, I would prefer to not to see this kind of increase. Much better to see this stay stable, or with treatment - reduce.
Numbers look great and it does appear that 150mcg is the right Besremi dose for you! Also good to see your liver numbers back in range - hoping for the same! Enjoy the fabulous vacation!
Good news hunter. Have a great trip. As an aside, my son works for Pfizer which have been pretty conservative with their employees through COVID . He told me they have a two month plan to normalize working conditions starting next month. So you would think they have a good idea of where the pandemic is. I see this as good news. Hunter taking a trip is also good news. Take care everyone.
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