Surprised at results. An update.

[Buddhability]

My dear friends. Just sharing my update.

So I started 6 weeks ago taking Inteferon my first medication since starting on aspirin in 2016 for my jak2 ET, I’m 61 living in south London.

So for the 1st time I injected myself at the hospital to get some supervision. By the late afternoon the flu symptoms hit me very hard. The next day had a migraine, felt absolutely awful. Didn’t know if I was coming or going. What was the meds, what was the migraine. Still wiped out the following day. But the day after that, I returned back to how I was pretty quickly. Next jab was for the week after next, so every other week. This time, as recommended, just before bed, a paracetamol and nothing like as bad as the first time, the next day. Great relief. Week after next, 3rd jab, same procedure and I hardly noticed anything at all the next day. I was very happy with this. The following week I had my bloods taken during some booked scans, CT and MRI.

The results - I got a call from the nurse on my haematology team at Guy’s. My platelets which normally hover around 700 were 359. Wait…what? Three hundred and fifty nine! That was super fast!! Delighted my team says to keep me on 45 dose but go 3 weeks between jabs instead of 2. I was utterly thrilled!! The team surprised how quick I have responded.

Hot on this news, infact the very next day, came an itching during the day and just before going to sleep, like I experienced a few years back after I would have a shower. But you know what? I’m not bothered. I’m feeling too elated about my blood count. And I’m sure the itching today is a lot less than it was before.

It is such early days for me but I really wanted the Inteferon to work as it carries the potential for remission and that is my goal.

All of this, every bit of my journey, is thanks to the sharing, the knowledge and the understanding of the community here. I’m totally in debt to you all and feel my small victory is something to share with you. Absolutely every aspect, every detail of my journey has had the light shined on by one of you good people. And to be honest, I’m as happy as I can be with my condition, it’s mine, and I feel total ownership.

The bad days I’ll take for granted. The good days? I’ll share with you!!

My deepest respect and gratitude to you all.

John

[Hopetohelp]

That is fantastic news. So pleased for you and please continue to keep us updated. Positivity at it’s highest and let’s all let that light shine😀☺️

[Buddhability in reply to Hopetohelp]

Thank you. And you are reassuring me as I questioned whether my post was appropriate. Some people and at some point I will too, be having a tough time, where things are getting worse. But as you say, it’s important to keep shining the light of positivity. Thank you Hopetohelp! 🙏❤️

[Barbiebreath in reply to Buddhability]

We need to hear the good news. I’m happy for you. I haven’t had any medication yet. I know we all react differently but to hear anything positive….. YES PLEASE! 😃

[Buddhability in reply to Barbiebreath]

You have a beautiful heart Barbiebreath! Thank you!!💟☮️

[mhos61]

That’s a remarkable response. You’re obviously a perfect candidate for interferon. Absolutely delighted for you; I think treats are in order!

[Buddhability in reply to mhos61]

You’re right. It is a remarkable response. I hadn’t thought of it like that. Treating myself? I hadn’t thought of that either!!! Again, I think you’re right!Xxxx😊

[Dan39]

Great news! Hopefully you can achieve your goal asap! Im actually the opposite, was hoping to catch et or pv since my jak2 positive last year, but primary myelofibrosis intermediate 1 instead😅 waiting again for my ngs panel test in July, whether i need to do transplant or look for clinical trial, anyway keep the faith🙏🏻💪🏻

[Wyebird in reply to Dan39]

Oh how awful for you. Make sure you are seeing a specialist MPN, I was part of Guy’s forum last week. New trials starting soon in 6 Uk hospitals.

[gilded in reply to Wyebird]

Hello! You posted a while ago about new trials happening soon in UK hospitals. Could you elaborate a little, please?

[Wyebird in reply to gilded]

Hi, I’m shooting off out. I’ll dig out my notes and private message you. I know it will be invitation only x

[Buddhability in reply to Dan39]

Dan! I’m not sure what happened, I wrote a response to you and included a photo, so struck and grateful I was by your response. But I managed to not successfully post it! I won’t try the photo bit again but it was a quote. I hope you don’t mind it was from my Buddhist mentor (SGI Daisaku Ikeda) but I feel it’s very translatable for any faith or any belief. I hope you get something positive from it :

“Health is not simply the absence of illness. Real health is the will to overcome every form of adversity and use even the worst of circumstances as a springboard for new growth and development. Simply put, the essence of health is the constant renewal and rejuvenation of life.”

Again, hope you can translate that to your faith.

I sincerely wish you Dan renewal and rejuvenation in every cell of your body!

Wyebird has replied a great reply to you.

Wishing you the absolute best Dan on your health journey.

😌

🙏

[Dan39 in reply to Buddhability]

Amen! Thanks for the quotes and support! Cheers to our goals and dreams🍻to us actually me that ine day i can depart peacefully to what eve we struggle in our old days or hits us.🙏🏻🙏🏻🙏🏻💪🏻💪🏻💪🏻

[Mostew]

You were born with wings, glad you are flying!!!!!

By me ..

You were born with wings ,why crawl through life

By Rumi

Great news .Long may it last

Carolyn

[Buddhability in reply to Mostew]

I love your quote Carolyn!! I was definitely flying for a few days on the good news. Wishing you very well, hope you are strong and I’m very touched by your response! Thank you!!

[Hidden]

That’s wonderful news

[Buddhability in reply to Hidden]

Hey brother!! Same age, same condition! Thank you. I deeply hope good news is heading your way. ☮️

[EPguy]

Such great news. You're on Pegasys, (PEG) it seems. That's your first MPN medicine you've used, right?

45 per 3 weeks is a very low dose, you should be feeling well on that.

I agree a temporary misery is worth the potential benefits.

It seems that PEG might gives its effects quickly, in a day or so, while I and at least one other member gets them the next week with Besremi.

[Buddhability in reply to EPguy]

Thank you EPguy! You are such a solid part of the community it’s great to get your reply. You are right. My first medication. It was a big deal for me. But I was not expecting results like I got. I was expecting a long wait and for the dose to increase. That all might still happen, it feels like health is a moving and changing scenery so I’ll enjoy what’s happening to me as it comes. I so hope your benefitting from your Besremi. My absolute best wishes to my friend and again, thank you.

[EPguy in reply to Buddhability]

Another member has reported side effects on PEG also starts the next week, so that pattern for Bes (1 week) vs PEG (days) is not holding up for all in our tiny sample.

[Buddhability in reply to EPguy]

It’s astonishing how unique and individual people’s response to the condition is and to the medication. It seems to me it’s as diverse as the shape of people’s faces (I’m a portrait sculptor!). I was expecting INF to take up to year! All I feel I can do is affect the bit that I have control over. So I’ve joined a group that hike once a week and I’m fanatical about hydrating! My diet as a vegan is, you can imagine, already very controlled and leans heavily on the healthy side. But I’m so gratefully informed by good people like yourself EPGuy, especially you guys that regularly enlighten us. My deep respect.

John

[Lena70]

That's fantastic. I was feeling a bit bummed today and reading about your positive response cheered me.

[Buddhability in reply to Lena70]

Oh Lena! That is such a treat for me to hear. Not that you were having a rubbish day! But that you were cheered by my good news. You have a beautiful heart! Thank you for sharing my joy. That’s what I hoped for! 💟☮️

[KC63]

Great news John!

[Buddhability in reply to KC63]

Hey KC63!! My absolute pleasure! Wishing for the same, for you!

[Wyebird]

FANTASTIC news I too responded quickly, I inject every 10 days and am hovering mid 300s. My haemoglobin has shot up too.

[Buddhability in reply to Wyebird]

Thank you!!! Mid 300’s that’s us in normal land isn’t it?😁Forgive me, I’m still very new to this, I’m not sure your haemoglobin shooting up - is that good or bad?

[Wyebird in reply to Buddhability]

Haha it’s brill.! Anything below115( varies slightly area to area) means you are anaemic. So you usually get put on iron supplements. Unfortunately for me excess iron in the body doesn’t allow me to have them.Basically I had all the ingredients but still couldn’t make the haemoglobin which is necessary to carry iron around the body.

I have far more energy now.

[ciye]

Brilliant news for you. I am envious been on 135 dose of interferon for 12 months and count barely budged ET mpl

[Buddhability in reply to ciye]

Your reply really prayed on my mind. Especially after reading about your lung cancer and grandkids!!(did they come and stay with you?) Ciye, I really hope and pray that you get a burst of good news with your health journey. I was expecting a very long wait for Inteferon to do its thing. Like a year! I’m sure you’ve seen it here how it can take a very long time. We are all so very, utterly and completely unique and it shows here on this site even within our own conditions peoples experiences can differ so much. I’m sure my health journey will have its own ups and downs. F’sure. But you touched my heart in responding and I thank you, deeply. As an SGI Buddhist my understanding is that health is not the absence of illness so much as an inner strength, regardless of what’s happening. And that dear Ciye is what I wish for you, inner strength. And a burst of good news!Much love

John

[ciye in reply to Buddhability]

Thank you for your reply, I am hoping my next set of bloods will be better. My grandsons live with me permantly. I wish you well..

[Wyebird in reply to ciye]

From what I have read about Peg you could go up a dose . Is it 135 every week you take it? Some people are on Peg and hydroxi. It’s taken me almost 7 years to be this stable. Platelets up meds up platelets up meds up!! I’m so relieved that seems to be in the past.I’ve read a reply to you regarding lung cancer.

I have a really bad memory. I can never keep track of individual’s post. I’m so sorry that you are having to cope with that also. May your Peg react favourably soon.

[ciye in reply to Wyebird]

My lung cancer thankfully was caught at the early stages and surgery was done during the first lockdown down. I struggled with the HU and although Dr wants to add it in again I am reluctant. Struggling with shortness of breath and chronic fatigue, and the side effects of meds don't help.Hopefully the interferon will kick in and I will feel better. Waiting on a referral to see professor Harrison. It's so nice to know that it does take quite some time to get stable.

[Wyebird in reply to ciye]

Are you waiting for Proff Harrison appointment or a referral to come through? She is an amazing lady. Fingers crossed interferon will kick in and you get to see the Proff.

[ciye in reply to Wyebird]

Dr will refer me once I have spleen scan and bmb as the professor likes to have those. My ET was diagnosed through bloods.

[Wyebird in reply to ciye]

I didn’t have a BMB I transferred to Guy’s after two months of diagnosis. Good luck she is in demand xxx

[ciye in reply to Wyebird]

Thank you.

[Oscarsboy]

Amazing, wonderful to hear some good news. Keep going.

[Buddhability in reply to Oscarsboy]

👏you make me very happy Oscarsboy! I questioned whether to post this as I know some people will be having a tough time, but I’m glad I did, thank you!! My very, very best wishes to you! ❤️

[Exeter21]

Wow so good . I am on Hydroxycarbamide & been so I’ll on it with constant diahroe no matter what food I eat. Lost too much weight & now 4 weeks off to see next plan . But it helped bring platelets down . 👍

[Buddhability in reply to Exeter21]

Oh gosh Exeter21! That sounds tough! Like, super tough. I can’t help but think that you are here though, and this place is phenomenal in terms of practicable advise, tips and suggestions. I can only wish you every success on your journey and hope and pray that some good news is heading your way. As soon as possible!! All my love. John

X

[Cja1956]

Amazing results! Thanks for sharing your wonderful news. Your posts are always uplifting. I’m post Et Mf, I’m an unusual case in that my platelets are always high (last count 845) with low red blood cell counts. I’m going to ask my doctor again about Interferon. My doctors, so far, have been reluctant to try it. May your good news continue!

[Buddhability in reply to Cja1956]

Cja1956 you are so very kind!! Thank you!😌

🙏

I felt like I got complete ownership and to a good place inside about my condition before I decided on the choice I was given by my London NHS haematology team of which cytoreductive I wanted to take - Inteferon or hydroxycarbamide. I had no idea! It was here at MPNVoice that helped me solidify my decision. Because I was driven by my wish to be around for my daughter for as long as possible I didn’t mind which one, just hoped that it would do it’s thing. I chose Inteferon because I read it has the potential to send the MPN into remission. That was all I needed hear. I asked the team if the Interferon didn’t take with me could I switch to hydroxy (I had read that people switch the other way) and they said yes, so I started on Inteferon. It feels like the first baby steps on my journey though, I get the feeling it will chop and change. I sincerely hope your doctors can move from their reluctant position you have with them. Sorry about the essay but your post thrilled me and I so want to say to you that I hope good news blossom’s for you too!! 🌺☮️💟

Thanks again!

Yours

John

[Stephen399b]

Thanks for this news. So pleased it works for you.

I have been on HU for last 6 years, which has kept platelets stable at about 350, but starting to edge up now so taking a bit more.

Next stop probably interferon, so good to hear that it works.

Take care.

[Buddhability in reply to Stephen399b]

Just read a bit about your journey Stephen, some of your posts in Advanced Proste Cancer. Oh my gosh, wow! You seem super strong to me! What an inspiration. If the Inteferon bus has your name on it, I just hope it rocks up with the engine running and gives you first class seats!! Best wishes to you my friend!

My deepest respect

John

[hunter5582]

That is great news! You are obviously very responsive to IFN. You also have a very balanced view about the side effects. It is really important for us to take a balanced view about our treatment options.

Regarding the itching, I have also experienced that as an adverse effect from Besremi and Pegasys. It took is several months to show up for me. I experience is as broad areas of itching, deep in the dermis. Usually on my back, but it can be anywhere. I have found that an antihistamine (Claritin) is very effective at managing this AE. I also experience occasional small popup rashes. I use Eucrisa (prescription eczema ointment - PDE4 Inhibitor) to treat this. It stops it right away.

Please do continue to share the news good and bad. We all can learn from your experiences. We are stronger together.

[Buddhability in reply to hunter5582]

You are such a rock and tireless source of support and knowledge for us Hunter. I literally cannot thank you enough. I’m definitely, without a doubt stronger and more informed thanks particularly to yourself and absolutely the community here. The itching really puzzles me. Mostly my upper arms.

I was working late last night, nothing, at all! But as soon as I go to bed, it starts!?!? Right now, in the morning - nothing!

I’m dying to ask my Haematology doctor what causes the itching. I have an appointment at the end of the month. I had imagined that having high platelets was the cause that affected the blood flow as it got into smaller capillaries and closer to the skin. But if my platelet count is normal at the moment, what’s actually happening?

Do you have an understanding Hunter of how it works?

My curiosity is as triggered as the itching!

Thank you so much for your reply.

My upmost and deepest respect to you Hunter!

John

😌

🙏

[hunter5582 in reply to Buddhability]

The itching is not directly related to the platelet levels, though some do find a correlation. It is actually thought to be a histamine response. The upregulation of the JAK-STAT pathway also causes an overproduction of mast cells. These are the cells that release histamine - which is what makes us itch. Here is a nice KISS explanation. Note that while it makes reference to PV, this can apply to any MPN.healthline.com/health/polyc...

Interferon is an immunomodulator. Itching and rashes are known adverse effects. I know from my reaction to other medications and environmental triggers what a histamine response feels like. This is exactly what I am experiencing with the IFNs. In a bit of diagnosis by medication efficacy - Claritin/Benadryl (antihistamines) make the itch go away. Sometimes 2 + 2 = 4.

The important thing to understand with the JAK2/ET is that there are multiple consequences to the deregulation of the JAK-STAT pathway. There is more to it than the thrombocytosis. There is an alteration on how the blood cells behave, resulting in a risk of thrombosis, hemorrhage and microvascular symptoms. In addition, there is an increase in the production of inflammatory cytokines which is thought to be responsible for many of the secondary symptoms we experience. Managing the secondary symptoms is often the bigger challenge and they often have a greater impact on our quality of life.

Thank you for your kind words. We are all in this together and are stronger for it. All the best. Please do let us know what your hematologist says.

[Buddhability in reply to hunter5582]

Thank you Hunter! I find that really helpful. For me a little knowledge shines a light that illuminates the situation as opposed to being in the dark which can feel isolating and uncomfortable. Just that term, ‘secondary symptoms’ creates an inner dialogue I can have with myself to reassure myself what’s happening to me. THANK YOU!

☮️

[hunter5582 in reply to Buddhability]

Knowledge is power. Feeling disempowered is a bad way to feel. That is why understanding what is happening os so important. The symptoms can still be unpleasant, but are easier to manage when we understand what is happening.

[Buddhability in reply to hunter5582]

100% Hunter.

[EPguy in reply to Buddhability]

On itching I've had new Pruritis since starting Bes. It's also mostly in my arms and is mostly after shower as is common with PV. But I didn't have it before. It's minor is my case.

It is known in this label:

<<The most common adverse reactions reported in > 40% of patients were influenza-like illness, arthralgia, fatigue, pruritus, nasopharyngitis, and musculoskeletal pain>>

accessdata.fda.gov/drugsatf...

[lizzziep]

Great news 👍

[Buddhability in reply to lizzziep]

Oh Lizzziep! Thank you!!!😁👏It doesn’t happen often, gotta spread that stuff around no? 😊Xx

[Manouche]

Amazing clinical response… and just the beginning of fantastic journey !👍🏻

« Moshe Talpaz, MD:

One of the problems with interferon is that you need the observer, the investigator, to live a very long life in order to control the studies. Because you may need to do studies that stretch over 20 or 30 years in order to have definitive answers, and we may not be able to get this. I’ll give you an anecdotal case.

Moshe Talpaz, MD:

I studied it in 1998; it was a long time ago. A patient who I started with essential thrombocythemia but JAK2 positivity. I started to treat her in the late 1980s. And she developed a complete molecular response after 25 years. She is in remission now, after 30 years on therapy. She still gets it on and off. »

[EPguy in reply to Manouche]

I don't recall seeing that one re 1998. Neat. Wording suggests response improved thru a 25 year period. Unlikely there is data prior to 2005 (Jak2 discovery) but at least since then maybe they have allele plots. We're limited to 7 years with current larger studies.

[Buddhability in reply to Manouche]

Thanks Manouche!! And what a stunning read that is! You’ve really inspired me. I don’t know if it makes sense but I practice a form of Buddhism, (SGI, biggest and central part of my life) we chant, open eyed and super alert. So it’s quite common for us to ‘aim’ our chanting at a specific area: loved one, job, something we want to affect. So at times I’ve chanted for the cells in my body, in particular my bone marrow, to steer in the direction of remission. So you have really given me fuel to add to that fire, thank you!!

I can imagine and hope that is translatable for any faith or belief.

Thanks for your superb post!

💟☮️

[gvibes]

Good news! Seems like It must be changing the mechanism of platelet production for you instead of just killing cells. Interferon has very little effect on my platelets numbers (which are in normal range) but controls my red blood cells. All the best.

[Buddhability in reply to gvibes]

Steve, please forgive my very late response. Thanks for your reply. I just went to look at your profile and posts. Miles and miles apart, you in New England and me in old! I too wish you the very best! Again, thank you for responding!

😌

🙏

Yours

John

[JackLina]

So pleased for you. It had a dramatic effect on me also. I do have all the side effects you can imagine but as you say, the bloods are good ans everything could have gone a lot worse. Particularly as I'm so prone to problems from medication.

Long may it last ATB

[Buddhability in reply to JackLina]

Thanks for your reply JackLina! I’m so sorry it’s taken me an age to get back to you. I had a peak at your posts. So can I share with you I have just joined a weekly hiking group, I live in fairly central london and the hiking is done in the country - I love it! Rain or shine! And a few days ago finally fixed the puncture on my bicycle! I believe the symptoms of my ET contributed to halting my fitness regime last year. I’m so happy to be making small steps back. I saw you used to cycle? And used to play squash? Anyway, I really appreciate you taking time out to be pleased with me on my rapid response to INF. I do so wish you JackLina are having a good time with your condition and medication.

Again, thank you!

My deepest respect

John

[Mazcd Partner MPNVoice]

Really pleased for you, such an amazing response, I hope you get the dreaded itch sorted out soon. It's nice to read such an uplifting post. Best wishes, Maz

[Buddhability in reply to Mazcd]

Thank you Mazcd, thank you so much! I am feeling extremely fortunate at my rapid response. The itching can present itself loudly at times, but to be honest, I am managing to pay it as little attention as I can as it always seems to step down after a while. I’m treating like nicotine withdrawals when I gave up smoking 20 years ago or so. They would come strong and demanding, but after a while, disappear!Again,

Thank you for writing and even more so, thank you for your tireless efforts here at MPN Voice. It is such a valuable treasure trove of advice, comfort, camaraderie and tips!

I am always talking about the international community I am part of! 😁

My very best wishes to you

John

[IrishSarah]

Fabulous news John! Always wonderful to hear the good stuff 🥰 The dreaded itch was a side effect of peg for a number of months for me too, eased off over time so hang in there! Daily antihistamines helped with itching & pain

[Buddhability]

Bless you IrishSarah that’s good to hear! I don’t know if this makes sense, but I’m treating it like when I gave up smoking, over 20 years ago now. The cravings at first came on strong and all consuming. But after about 5 or ten minutes would totally disappear until they came back. The times when they weren’t there, grew and got longer till it would happen only once in a blue moon, like once a year. Not even that nowadays. So it helped me having the attitude that - it would pass, and I’d try not to pay it too much attention, and sure enough, that all consuming feeling would pass. So I’ve noticed right now I haven’t had an itch attack for a good couple of days!! I’m sure it’s as you say Sarah , it’s easing off over time. Lovely to get your response. 😊

🙏