Update 5.7: Now at 8 weeks out from initiating... - MPN Voice

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Update 5.7

hunter5582 profile image

Now at 8 weeks out from initiating treatment for PV with Pegasys, things continue to go well. I am still not having any adverse effects at 45mcg/1x-week. Platelets are down to 477, the lowest they have been in quite some time. HCT is slowly creeping up, now at 44.2%. HGB 13.4 and RBC 6.68 also slowly creeping up. LYMPH slowly dropping and remains below range at .83. WBC now low at 3.90. NEUT (the most important WBC) has dropped but is WNL at 2.41. While I would like to see the HCT not rise at all, it is unlikely we will increase my PEG dose with the WBCs dropping off. The LYMPH is not low enough to be a concern and while the NEUTs have dropped significantly, they are also not low enough to be a concern. The plan at this point is to stay at the same PEG dose and monitor again in 4 weeks. I am choosing to wait until the next CBC to see how things go and then do a phlebotomy if the HCT creeps up more.

Like all things MPN, it is all a balancing act. We just have to find the right balance for each of us at any given point in time. My regular hematologist pointed out that it is symptoms that matter, not the numbers on the labs (unless they get too far out of whack). Provided I stay infection-free, then the WBC numbers do not matter all that much. On the whole, I am responding well to the PEG and I am pleased with how it is going. I am going to consult with my Integrative Medicine Specialist regarding strengthening my immune system to prevent infections.

In other news, I saw the nephrologist today. She was not concerned with the minor findings on the renal ultrasound and all of my kidney function labs are looking better. Her assessment is that my kidneys have weakened and just need more hydration to function properly. The plan is to drink more water, be nice to my kidneys, and monitor kidney function going forward (which I need to do anyway due to the PEG). So good news on that front.

More good news – my last MRI of the brain looks good. I am continuing to heal from the surgery and there is no sign of tumor recurrence. I do continue to have occasional minor visual migraines, but the Ubrelvy works really well to control the symptoms. I must say for those of us with migraines that my experience with a CGRP inhibitor has been very positive. All benefit with no side effects at all. My niece who has debilitating migraines has found that the long-acting Ajovy has “transformed my life.” The convergence insufficiency has improved with the Brock Bead exercises, but diplopia remains a problem. I will likely have to have the cataract surgery to fully correct the problem. It is the only surgery I am actually looking forward to. Will see about that later in August.

In even more good news, I just got back from volunteering at Brainy Camp, a Summer camp program run by Children’s Hospital of DC for youth with chromic medical conditions. brainycamps.com/ . This program is the only way most of these kids would ever be able to have an out-of-home summer camp experience like other kids are able to have. I had the chance to do a lot of fun activities with the kids and also taught sessions to transitional young adults about how to advocate for yourself in managing your own medical care. It was a very rewarding experience.

As usual, I have gone on for quite a bit. Thanks to all who were interested enough to read this tome. All the best to all of you all.

56 Replies

I always enjoy your posts. So glad to hear the good news regarding your brain surgery and that your kidneys are doing better. Also, that is such a wonderful thing you are doing with the children . I’m sure they enjoyed having you as much as you enjoyed being there. It sounds like it was fun and educational, the perfect combination.

Have a good night. Off to bed.

Cindy

krotsida profile image
krotsida in reply to Cja1956

I wish nothing but the best for you. God Bless You.

Hunter great news and sounds like a very rewarding time at the camp. Like CJA said we always enjoy reading your posts and you have been such a great support to this community Thanks for all you do

Thank you hunter5582. Your posts are, as usual, informative, positive, and a great read! I’m glad things are going well.

Your post is extremely informative and studied as always . Most valuable is the detailed medical observations you are providing . I do believe you know that this cam provide a very clear information path fir some who may find himself- Herself at a similar treatment point . Thankyou for giving detailed information …… Please do continue to update in a similar manner ongoing …….. it is invaluable 🙏

Also I am very keen to know if the Pegasys is succeeding in bringing down your mutant allele burden …….. when do you plan to check on that ?

I am going to discuss it with the MPN Specialist and see what he suggests. Certainly it will be at least one year, but maybe two years out. Reduction in MAB is not something I would expect to occur rapidly; however, I do seem to have responded very quickly to a low dose of PEG. Certainly we will recheck if there is any sign of a change in PV status.

Sam2022 profile image
Sam2022 in reply to hunter5582

It would be great to hear MAB reduction from you. I am working on the PEG to treat my JAK2+ ET as well and hope can start soon.

JackLina profile image
JackLina in reply to Sam2022

Hi Sam. I too am ET and JAK2+ and asked the haema the same question re allele burden and had the usual response.....'why do you want to know that? What difference will it make? Pegasys doesn't 'cure' the ET!

I would really like to know what your experience is with your own haema knowledge/belief.

ATB Penelope

hunter5582 profile image
hunter5582 in reply to JackLina

Some hematologists do not know what to do with the information. Others disagree. My MPN Specialist does think it is relevant. We will recheck the MAB when there is a change in disease status. While there is not a straight linear relationship between MAB and symptom burden, it is a marker for disease progression/status. I like the question posed by Dr. Kiladjian, to paraphrase - "Is there any hematologic cancer where reducing the burden of the malignant clone is not seen as a good thing?"

If you want to know your MAB as part of determining your MPN status, that is your prerogative. It is a very reasonable thing to do. Hope you are able to follow up on this as you wish.

JackLina profile image
JackLina in reply to hunter5582

Thank you very much for this 'further' information. When I requested that to be done I was told it cost £250 and there would be nothing to be gained from it!!!!! I'd pay for it if I thought it would!He also stated that to stop the medication as a result would undoubtedly cause my ET to spike. I was under the impression that the full effects of Pegasus were as yet unknown and that it is a possibility that, in some cases it could result in dealing with the JAK2+ mutation. I based that on my own previous research, which taught me about the allele burden beginning with one or two mutant genes, which if not treated would cause more to become mutated. My understanding of this means that if (with my very low platelet count) mu want genes has completely disappeared. If that is the case, why would I. need to be continuing with the medication?

Am I wrong? Very possibly but I would be happier to know the burden. the only time it has been done it was 14%. I have no idea if that is good or bad but if it's reduced further, surely that's a good thing.

hunter5582 profile image
hunter5582 in reply to JackLina

Stopping the PEG at this point would be expected to result in a return to symptom. There is some research looking at PV patients who have achieved complete hematologic and molecular remission discontinuing the PEG. At least some are able to discontinue for at least several years without a return to symptom. I do believe this is a small percentage of people who were treated for PV and would not consider this a likely outcome for most people with MPNs. As nice as it would be to have this outcome, it is not what I expect to have happen. I look at PEG as a way to better manage my PV symptoms and prevent/delay disease progression. I am HU-intolerant and also have the NF1 mutation. The phlebotomy-induced iron deficiency has been causing additional bothersome symptoms. PEG is simply a better way to manage the PV, which has at least the possibility of complete hematologic and molecular remission. It is the closest thing we have to an operational cure for PV.library.ehaweb.org/eha/2021...

The good news is that Besremi is in clinical trials for ET. Some feel it will be easier to tolerate than Pegasys. Here in the States, there are no FDA approved meds for ET. HU is not FDA approved for any MPN. We will soon have Besremi approved for PV, which is really good news.

Back to your question on MAB, I agree with you that it is worth checking. It does say something about your MPN Status. The question is when. I plan to wait at least 2 years unless there is a change in disease status. It really is symptom burden that matters most of all, but it is a good idea to have objective markers for treatment efficacy. Along with monitoring your CBCs/CMPs and splenomegaly, MAB is a viable marker to pay attention to. I think the real question is whether it is worth £250 to you to know at this point. It is your body, your money - your choice.

All the best to you.

JackLina profile image
JackLina in reply to hunter5582

Thank you again Hunter. Yes, I will take your advice regarding the test and realise it is a very different story for PV sufferers. In fact, I'm in a much better position than most. The knowledge that Busremi is being considered for ET sufferers is very good news as my biggest daily problems are caused by the side effects of Peg interferon. Not least of my problems are the fatigue, body pain and overheating! Stay safe. All the very best now and always.

Hi Hunter, great news that Pegasys is beginning to improve bloods, it does take time to get the right adjustments , just going through a decrease in dose myself at the moment. Glad that all the rest of your news is positive, just making sure you stay infection free sounds like a good plan.What a brilliant way to help youngsters, you are always reminding us to be our own advocate, I’m sure they will have gained useful insights from your input.

Take care

Nellin

Very happy everything seems well controlled. Great that you help others with volunteering! So nice to be able to give back and help others. Keep on Truckin’ Hunter♥️

Great news hunter5582! Praying all keeps going well for you.

Hunter,

Gosh you really have been going through the mill. I send you my heart felt good wishes for your continued improvement.

With all this going on lately, I have been wondering whether you have been able to have your Covid vaccinations? I had mine earlier this year, astro zeneca. My haematologist ordered up an antibody test 4 weeks after 2nd jab and she told me the other day that I have had a good response to the jabs.

I take 15mg of Rux twice each day to manage PV which I've had since 2006.

I do hope that you've been jabbed or that you can do so before we get into the late autumn/winter season when there's greater risk of infection.

Stay strong! Very best wishes, Lyn

hunter5582 profile image
hunter5582 in reply to Lyn44rms

I most certainly did get my vaccine as soon as I could. I got the Moderna vaccine. It was a big relief.

Hunter , it’s a pleasure to read your update contains so much positive news .

I’m sure your approach has helped as much as the meds .

Great to hear your about volunteering .

Sounds a worthwhile project for all involved

Warmest wishes to you

Carolyn

Personally, I would chose to slightly increase the Pegasys dose. There’s no evidence that your WBC would keep dropping with a higher dose, although that’s a possibility. The idea is to avoid phlebotomies as much as possible to prevent their counteracting effect on interferon.

hunter5582 profile image
hunter5582 in reply to Manouche

Interesting thought. I would expect a higher dose to further inhibit leukopoiesis. I will have to ask the MPN Specialist about that.

Hi Hunter, I is so great to hear such fab news! I love to hear that you have been working with kids in the hospital I am sure that u added to a positive summer experience. B x

As always your messages are worth the read. Thanks for taking the time to help us with your ongoing medical info. It is more helpful than you know. Kind regards!

Yay for so much positive news! Great to read your updates, don’t apologise for length! Xox

Fantastic news!! You are my inspiration

You are a wonder Hunter thank you for sharing.🙏Adiewon

Hi Hunter, Glad to hear from you lots of good news. Your knowledge on MPN and love to others make your life so enjoyable! Have fun with kids and hope hearing more good news after you CBC in 4 weeks.

So glad to read al your good news. PEG seems to be the answer for you. Pleased to hear a good report on the brain too and the kidneys. Keep up the good work. Nice to read your post as always. Fran

I am delighted to hear that things are going well for you - you have certainly been through some difficult times.

Thank you for sharing your information with us. It seems that things are looking up for you. We are all glad for that, we need your experiences and expertise on this forum. Absolute best to you going forward. You have certainly been thru a lot. I heard an interview with the actor Jon Voight recently and he said when he was at his lowest he was saying to himself - why are things so difficult. He said he heard a voice in his ear that said to him - it's supposed to be difficult. He said it changed his life and he is doing much better now. Food for thought?Good luck to you.

Well it certainly has been an interesting couple of years. There is a Chinese curse "May you have an interesting life." I get that now; however, we can't let life's challenges destroy us. We all face them. We are defined by how we handle the difficulties we encounter. I have become a strong believer in the wisdom of the Serenity prayer. God grant me the Serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference. I start every day with that prayer. My faith, support from friends and family, and active engagement with my wonderful care team help me deal with what is on my plate. There is so much we can do to make things better based on how we choose to deal with the difficulties we face. We have to find the will to do so.

All the best my friend.

Hunter, glad to hear the positive news of your update. I started pegasys a couple months before you (presently 90 mcg) and it just seems recently to be lowering my RBC . I ended up having a phlebotomy after I started the pegasys. I have read elseware pegasys may take 3 to 4 months to get going as you have probably seen. Will know more in a few days with a blood test coming. Like you, my WBC levels are low and concerning - they are trending down with the pegasys treatment and will likely effect my long term dose. Hopefully the pegasys will slow your red cell production soon...

take care

What a great report Hunter!!! So glad things are moving in the right direction!! You are such an inspiration to me and so many others on this site. Thank you for all that you do and I am sure working at the camp was fun and very rewarding. Sometimes people, both young and old, just need a little kindness and encouragement!! We can't change the cards in life we are dwelt, by we can control our reactions. Thank again my friend!

Hunter, I don’t write to often on the site, but I do enjoy reading your posts. You are very knowledgable and informative. You also give good unbiased advice. So glad to hear you are doing well at this time.

Take care

It was a joy to read. You manage to fit in so many thanks. Loved hearing about the camp.

Great news Steve, on all counts by the look of it. Your knowledge astounds me every time.

I, too, volunteered at a summer camp as a live in assistant cook. It was a case of put the food out and step back from the rush but I also got involved in the fun stuff. When the kids went back home at the weekend I was in the pool all on my own and it was lush. The pranks the camp counsellors played on each other were hilarious. Good memories.

I hope you continue to do well in the Pegasus. I am hoping to be changed of the Hydroxy sooner than later. Take care my friend

Hope you get the meds change worked out ASAP. You have a very solid case for doing so. Also hope you get to go back to camp too. It is a great experience for both the campers and the staff. We all need more joy in our lives, including bringing joy to others.

I wish Steve, the camp I went to was in Fort Saskatchewan, Alberta. I am back in the UK now and 43 years older

Loved your post, very interesting regarding the HCt and neutrophils. My neuts are also out of range, maybe that’s why they’ve given me a week free peg.😉. As for everything else things are really looking up and I’m absolutely thrilled about they way it’s had such a positive outcome on your health.

Long may it continue to work fir both of us xx

That would make sense. My hemo-doc explained that NEUTs are the WBC they worry about the most. Will continue to hope that the PEG will establish the right balance for both of us. All the best.

All good news! So pleased the Pegasys going well -as you say it's all a balancing act and your other health issues sound to be controlled. So good to enjoy time with children too. Thanks for the update.

Good news Hunter! Thanks for the update, always enjoy reading your informative posts 😊

What a great post and very good results especially about your brain. It seems we all appreciate your brain!

As for the phlebotomy vs increasing Peg I am very keen to hear what your team has to say. Do pass on any things that you learn from your integrative doc about ways to support immune function. I think that he/she/they will say you are doing a lot of things that are good for your immune function already.

I am so glad to hear that this dose of interferon is so tolerable for you (it is for me too). Your camp time sounds like it was a lot of fun. Working with kids gives such a good feeling and is so worthwhile, so glad you are motivated and able. It is particularly important to help them understand as a whole life plan to talk to doctors in an informative and assertive way about whatever bothers them now or in the future. You have the personal and professional chaps.

Keep the good news coming.

hunter5582 profile image
hunter5582 in reply to Planti

The MPN Specialist just said to leave the dose the same. he would predict additional suppression of leukocytes at a higher dose. The plan remains to hold off on the phlebotomy for another 4 weeks and see how I respond to the PEG. We are also in agreement that rusfertide will be a viable option to my tx plan when it becomes available. I am hoping that will be sooner rather than later.

I will update with what the Integrative med doc has to say. I do know that Vit C can boost lymphocytes, but I am not going to start anything without getting expert consultation. Plan to boost my immune system without doing anything too radical.

The camp really was great. Brainy Camp is a great opportunity for those kids. Many of the counselors are grown up former campers. All benefit from the experience. The sessions I did with young adults on self-advocacy were a page right out of our discussions on this forum. We focused on three key points. 1. Who knows your body best? "I do." 2. What is your doctor not? "A mind reader." 3. Who is the captain of your care team? "I am." It is a vital lesson for these young adults to learn as they transition into adulthood with life-long medical conditions. It is a vital lesson for us older adults too.

All the best.

Manouche profile image
Manouche in reply to hunter5582

My haem wanted me to start at 90mcg in October 2019. I developed a neutropenia after a few weeks and moved to 45mcg. I then developed an erythrocytosis and my haem put me up again at 90 and then 135. The initial neutropenia never reoccurred and the full blood count is normal for about a year now. The bone marrow’s homeostatic system is incredibly complex!

Good to hear your positive news. You are always so helpful and supportive to others here so you deserve the same! Great to hear of your volunteering - rewarding on both sides. Very best wishes to you x

Hi Steve, thanks very much for your update. I am delighted to hear all is going well for you & that you enjoyed the children's camp.

God bless your energy, and your generosity in sharing your strength and positivity with the children & young people ☘

Like others always find your posts very informative and enjoy them hope all keeps going well

Hi HunterThankyou for the post .

It is so useful ,and especially interesting to read about the Peg dose and the subsequent effects on your HCT,and potentially the MAB ,in time.

You have so much to deal with ,and your positive attitude is truly uplifting .

Thankyou.

Pleased all going well and no side effects from the Peg. I got a very quick reduction in Platelets and WBC but RBC took well over a year to respond and had to increase to 130 mcg weekly.

My RBC now about 4.4 but WBC struggling to get over 2, Neuts over 1 and Lymphocytes over 0.5. I’m on 35 mcg every three weeks and trying to balance WBC at 2 or above with JAK2 AB under 12%. Was 80% when I started Pegasys

My T cells and B cells are too low, pro rata to my lymphocytes. However I’ve checked my immunoglobulins and they are normal so my reduced B cells are performing well. My understanding is that Lymphocytes are also stored in the lymph glands so it’s possible my blood count understates my overall count?

Also my Covid anti bodies are 320 u/ml which is good but two people I know c. my age are over 1,000 and over 2,000.

Your experience sounds similar to mine. It is interesting how differently we each respond to PEG and other treatment options. I remain hopeful about the current course of treatment and will continue to monitor and work with my providers. I am also hoping that rusfertide (PTG 300) will offer another option to control erythrocytosis without inducing the issues we experience with iron deficiency.

All the best to you.

Thank you for sharing your encouraging progress! Has PEG helped with your insomnia? Please keep us posted on what your IM doc recommends to boost your immune system while on PEG.

hunter5582 profile image
hunter5582 in reply to jmctrek

No change in the insomnia. Still taking Belsomra for that. Perhaps someday it will get better, but I also have Neurofibromatosis Type 1 which can also cause insomnia.

I will update on what the IM doc suggests.

The most engaged patient on this site posts again...! Any advice on creaky knee joints and osteoarthritis onset? Or is that part of your body the healthy part?!!Seems you keep up on all medical developments...

hunter5582 profile image
hunter5582 in reply to Innessant

I most certainly do know about creaky knee joints having torn the meniscus in both knees, having osteoarthritis, and chondromalacias. The most effective thing I have taken for the osteoarthritis is curcumin. It works better than ibuprofen, meloxicam, or Lyrica for controlling inflammation/reducing pain. You do need to be sure to use a biologically available formulation if you use this agent. I also use L-Glutathione and a Fish Oil derivative (SPM Active). All of this is in consultation with an Integrative Medicine doc.

I was looking at another knee surgery, but opted for a hyaluronic acid (Synvisc) injection into the knees instead. It made a huge difference. The plan is to periodically reinject my knees to protect them and hopefully slow the deterioration of the joints enough to avoid knee replacement surgery. The injections definitely provided short-term relief that has lasted nearly 9 months now. This is a wonderful option for those of us with deteriorating knees.

Finding a way to maintain the strength of the knee joint is also critical. The stabilizers are vital to protecting the joint. I have been in PT, exercise, and practice Qigong. All of these things make a big difference.

Hope you get relief for the creaky knees soon.

Dear Hunter,Great news on so many fronts! I am ecstatic for you! And working with the kids and imparting such important information is just the icing on the cake! Thank you for your wonderful update, my friend. Keep on keeping on!

Kimberly

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