Besremi increased to 175mcg on 11/22/23. As of 12/15, HCT is basically stable at 45.4% following two increased doses of Besremi 175mcg. HGB is stable at 14.7. PLT is down to 235, the lowest it has ever been but not a concern. NEUT down from 1.23 on 11/13 to 1.05 on 12/15, the lowest it has ever been, which is a concern. The cutoff for too much compromise to NEUT is 1.00. LYMPH at 0.61 on 12/15 is in the range it has been for some time. The cutoff for too much compromise to LYMPH is 0.50. AST/ALT are very slightly elevated and not a concern. HCT is slightly above target (45%) but HGB is slightly below target (15.0). My MPN Specialist uses HCT as the target. My ongoing care hematologist uses HGB. Thus, I pay attention to both and make my decisions accordingly.
The JAK2 Quantitative analysis shows a slight increase from last year, from 9% to 10%. Not alarming, but it is a disappointment after seeing a reduction from 38% to 9% from 5/21 to 12/22. Note that VAF had increased by about 10% from 2020 to 2021. I consider decreased allele burden to be an important treatment endpoint/marker. While I had hoped to see the VAF get even lower, at least it is not increasing significantly and 10% is certainly better than 38%.
I am not inclined to increase the Besremi dose given the level of neutropenia that is currently evident. I am thinking of holding the dose at 175mcg for two or three more cycles. Repeat CBC/CMP. See where I am at then before making any decisions. We can discuss the next steps at that point. If erythrocytosis is a concern at that time, then I would be inclined to opt for a therapeutic phlebotomy. While I feel better with my iron levels higher, I do not want to risk too much compromise to my immune system.
My next doses would be 12/20, 01/03, 01/17. An appointment with my local hematologist is pending. I am scheduled for a consultation with the MPN Specialist 01/22. I am thinking we will do at least the CBC/CMP one more time before the appointments and whatever other tests the docs want to order.
I am having the above conversation with both of my hematologists. Currently awaiting their response. We will likely wait until after the January appointments to make any decisions.
While I am disappointed in the VAF not decreasing, further, I feel better than ever. My quality of life has improved on Besremi, and it is the best treatment option I have tried. Sometimes we must be patient when treating MPNs. It is a marathon, not a sprint. Provided I continue to maintain a good quality of life and remain mostly symptom free, I am confident I am on the right course of treatment.
We are very fortunate to have an increasing number of options for treating MPNs. The progress that has been and is being made is very exciting and hopeful.
Wishing all of you all the best. Merry Christmas to all and a Happy New Year. I hope and pray your year will see success in managing your MPN and that we will move towards a cure for MPNs.
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hunter5582
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Thank you for sharing your MPN journey. It tells me how important it is to be knowledgeable about our disorder so we can put input into our treatment too.My WBC were slightly below the limit recently and my Haematologist told me to dose 45mcg Pegasys fortnightly, instead of weekly as before.
Merry Christmas and Happy New Year to you and your family too 🙌🙂
Thanks for sharing. It is a good way. In my case I dont change the doses. I know this is a long lasting drug. I have been taking Besremi for 2.5 years and always 100mcg. I know that the higher doses the higher toxicity I will have and my body is delicate to toxicities. I think we have very sensitive to enviromental pollutants. Everything is in range, no symtons, VAF lowering. Being aware I have a whole life changing to adhere to Besremi. Merry Christmas!
I agree about going with the lowest dose of Besremi needed and raising the dose only as it is tolerated. Low and slow is a better approach in my experience. A safe and tolerable response is usually more important than a rapid response. We need a durable response without undue risks of adverse effects.
Good to hear from you with your update. Some small ups and downs but the fact that you’re feeling well is the best sign. I know you have the knowledge of your MPN to make the decision with your two Doctors’ consultation when the time comes as to increasing the Besremi. In the meantime, sending best Christmas wishes to you and yours and good health in the year to come. Best Regards, Fran.
No alarms for progression of the MPN. I was hoping to see the allele burden further reduced, but is has stayed the same for the last year. While a bit disappointed, I am not worried about it.
You are very knowledgable Hunter . Have you gained all your experience from reading up about MPN’s I am waiting for appointment phone call today . Hoping to not have to go for another venesection . Don’t suit me well . I’m supposed to double the hydrixycarbamide but I get so dry a mouth and throat at night . I don’t want to take more pills . Maybe I’ll ask to try a different pill ./treatment .
Thank you for sharing hunter5582 and for explaining everything so clearly. You really do make a difference to us all, with your support and comments, and you inspire us to push for working together with our medical teams.
I hope all goes well for you, with your upcoming appointments.
Happiest Holidays to you and your family Hunter. Thank you for sharing this information. Hopefully your WBC stabilizes. I found my WBC dropped significantly with Besremi. January is a year taking it. My platelets responded 800’s to 200’s. Always good to follow what works for other’s. You are truly so helpful on this forum, and want you to know how important your sharing has positively helped me.
Hunter the best news of all is that you are feeling better than ever! I do love to read your posts and comments and even more love the outlook you give and the hope for future advancements. merry Christmas to you and your family.
I think low and slow is a great approach. It is what I have been doing and it seems to be working. And I always try to get labs done about 3-5 days after my shot. Maybe a mental thing for me but I think this seems to be the optimal lab time. It still sounds like you are doing well! Glad you feel good, that is half the battle! I feel the same way! Merry Christmas!!! Hoping 2024 is an even better year for all of us!!
May you know the joys and blessings of this Christmas season. Thank you for all your contributions, help and advice to everyone who uses this forum . For reassurances and support. Very glad to know you are doing so well, albeit there maybe a couple of tweeks you would prefer to see in your stats. Have fun and enjoy.
As many have said, the best news is you feel so well. Your insights et al and positivity here are much appreciated. “Bonne continuation” on all you do.may the festive season be joyful for You and Yours!
Hey Hunter. Happy holidays. Glad you’re feeling good. My doc wanted to keep pegasys dose up for a while for VAF reduction but my HC and whites got too low so had to reduce dose. All good. And stable. Take care.
So pleased to hear that you’re feeling better than ever. You have been an amazing support to me and everyone else on this website. Thank you and best wishes. Irene
Hunter - it looks like things continue on the right path! As you said this is a marathon and we are lucky to have options on how we approach treating our diseases!
Thanks for the update on your progress. Sorry, also, your VAF didn't drop further, but very happy to see your numbers looking so good and to hear you are feeling so well. I'm online almost daily researching symptoms, treatments, side effects. It is my new job I believe. Merry Christmas to you and those you love!
Good to see you are looking forward to next year, concerning your own heath! You've been a rock for many on here, my wife doesn't fear interferons like she did, and may well be giving them a 'go' next year too. She's not too bad atm but we are pretty certain her loss of blood has something to do with the Anagrelide and or hydroxycarbamide she's on. All the best for Christmas and the new year too.
thank you so much for sharing your results and of course, for all of the help you give to others. I am so glad that you feel good since that is the most important thing as far as I am concerned.
Wishing you even better results in the next year and happy holidays!
Hi Hunter! As always, your level of detail is informative.
I had an annual appointment with my Stanford hem, Jason Gottlib and he mentioned that he has seen JAK2 numbers increase when taking Besremi. I didn't sound like he has seen it very often, but it was surprise to me that it could increase. His suggestion was to increase dose if it did, but of course watch WBC's.
I asked to see him (I also have a local Hem) because he has approx 20 patients on Besremi and I wanted to to ask him is there was some early warning signs to be on the look out for as far as complications.
He also said the same thing as you--it is a balancing act and there is no right dose for everyone.
It can get a bit complicated. Sometimes it feels like a balancing act, riding a unicycle on a tightrope while juggling. Having a great care team and support like we receive on the forum helps to make it manageable.
Both of my hematologists weighed in. They concur with keeping the Besremi at 175mcg and give it some more time. I am close enough to target to not sweat it for now. They also both feel that the absence of thrombosis/hemorrhage and feeling good/quality of life are the most important goals. The MPN specialist mentioned it can take years for the allele burden to get lower. We all agree that it makes no sense to try to increase the Besremi dose based on my ability to tolerate it. I really do not want to see the neutrophils get any lower.
Glad to hear that the consults with the MPN Specialist are helpful. I really like having two hematologists. My local hematologist may not be a "MPN Specialist, but he is a wonderful physician. I always get a second opinion on each decision from a source I trust.
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