The Pegasys was finally authorized and arrived yesterday. I did my first self-injection of 45mcg PEG at my hematology office the same day. The wonderful nursing staff did the training and supervision for the first injection. Was observed for about 20 minutes and then went on my way. I have had no reaction other than very mild injection site tenderness. Seems like I am off to a good start. We set up the monitoring protocol at initiation-2-4-8 weeks to look at all the relevant numbers.
I am at a good starting point. PLT = 677. HCT = 43.1. I may have time for the PEG to kick in and move towards goals without needing another phlebotomy (given how slow HCT has been creeping up). A bit more good news is that some of the kidney numbers are looking better (eGFR = 85, 76). Uric Acid came back at 5.7 - WNL. TSH (2.040) and EPO (7.8) are also WNL. There are some findings on the Renal Ultrasound that we need to look into, but do not think it is anything major.
So all in all - good news. I am feeling great today one day out. Hoping the favorable response continues. Time will tell.
All the best to all of you all.
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hunter5582
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Hallelujah 🎉 Hunter that’s absolutely fantastic news! You definitely deserved a break. Trusting things will go from strength to strength for you 🤗 What a total blessing you are!
Great to hear! I hope you get a brilliant response from Pegasys and glad it's all started well. Good time to start with platelets and AB on the lower side might get a better result. Keep us posted! Bx
Well done Hunter. This is good news.I do admire your understanding of MPNs and am always grateful for your explanations. I shall follow your progress keenly especially as I am hoping to follow you on the Pegasuys route soon.
Great news Hunter! As a tip from someone else on PEG, make sure to stay hydrated. I feel pretty thirsty for a few days afterwards and get dry skin (which I didn't get before). So I always keep a bottle of water with me and some moisturiser. For me, these are side effects which are very manageable, I just wish someone had given me this tip when I started!
Thanks. I am being especially aware due to to the kidney issues and tentatively it does seem that increasing hydration is helping. Will definitely stay well hydrated.
Well done. First hurdle over! I agree with previous reply to drink loads of water for the next few days. I wee a lot after the injection and it’s really important to replace those liquids. Proof in the pudding is waking up feeling like a slight hangover present. That means drink more! Which will need to be loads, but not difficult. Good luck and keep us posted
We all love to hear good news especially for you Hunter as you continue to be a positive influence to everyone on this forum. As you can see, we are all delighted for you.
Excellent! We know that you work, probably harder, than most in keeping up on your condition and helping others. Hope it works perfectly for you for a long, long time. Continued success to you, stay well.
The decision to move to Pegasys is based in part on achieving better symptom control. I have been on a phlebotomy-only treatment protocol. I am quite severely iron deficient now, with Ferritin hovering between 6 - 8. The chronic iron deficiency is causing bothersome symptoms, inclosing pushing my platelet levels up by about 200K. I used to cycle between about 500-700. Now cycling around 700-900. The PV is also causing bothersome secondary symptoms that phlebotomy does not help with. The additional factor is that I also have the NF1 mutation, which is one of the non-driver mutations that increases my risk of progressing into AML. Given the current research indicating better progression-free survival with PEG-IFN, we decided it was the right time to change to this protocol. The potential benefits outweigh the risks. This is the right decision for me at this point in time.
I hope it works well with you. As my treatment is similar to what you had but I only had two phlebotomies and my haematocrit is stable over one and a half years now, I still hesitate to follow some other treatment as I know I will gather upon myself all the existing side effects! So I am following you with interest and hope to hear good news from you. I have not done any examination for possible mutations yet apart from being Jak2, but intend to.
That sounds like a good plan. I was pleased with the phlebotomy only protocol initially, but it took phlebotomies every three weeks for about 6 months to get my HCT stable. Then we overshot the mark and I ended up with HCT=32. After that, I went 14 months with no phlebotomies, then had two in 6 weeks. Then none since August 2020. It is all a balancing act with each of our treatment choices. Each has its own risk/benefit profile. Not only do we each not respond the same, our needs change over time. There are not always clear answers and we just have to make the best judgement that we can.
Having more information is definitely better than having less. It is better to know relevant factors like your mutant allele burden, how it is changing over time, and whether you have any non-driver mutations present. Along with considering cooccurring medical conditions this allows you to make informed decisions.
FYI - the MPN Myeloid Panel I used was the Intelligen MPN Myeloid Panel.
Second PEG injection not big deal. No reaction. No side effects beyond very mild injection site tenderness. Would not have even noticed that without effort. Will be doing follow up labs at 2-4-8 weeks. Will see what the numbers say. Not expecting a rapid response. A gradual downward trend in RBCs and platelets will be fine. We will see what happens.
Good news! I hope this all keeps on the right track for you without negative side effects. It would be great for you to leave the venesections behind. Do keep us posted.
There is an emerging consensus regarding the role of mutant allele burden. Emphasis is on the emerging part. While there is an associating m=between allele burden and symptoms/progression, it is not clearly linear. There is variability due to a number of factors. It is quite complex and there a number of other factors including cooccurring non-driver mutations, whether the mutation is heterozygous or homozygous and more. Here are a few of he references on this topic.
Sounds like you are on the same course i was. I started at every 6 weeks than had to go to every three weeks. We eventually overshot the mark and I ended up anemic with HCT = 32%. It is important to pay attention.
I am also quite severely iron deficient. Ferritin = 6-8. The iron-deficiency symptoms become so troublesome that I decided to opt for PEG-IFN tx. I had hope to qualify for the PTG-300 (rusfertide) clinical trial, but did not qualify. This is a very promising new form of treatment that allows your iron levels to come up while still controlling erythrocytosis. I may well add it to my treatment regimen when it becomes available.
I hope you are able to try Pegasys. It is going quite well for me so far. Hoping that continues to be the case.
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Update - Good News on Peg
Update, sort of good and not so good news
