While I don’t want to waste your precious time, I do so want to reach out and say, although new here, I have read practically everything that gets written here. Some of you feel like friends. But on hearing the passing of Frank (Big Ted) I feel the urgency of expressing my deep gratitude towards this community. Next week I should be starting my first injection, Pegysis inteferon for my ET JAK2 V617F. I won’t lie, while I’m upbeat, happy and committed to this, I am a little anxious. The decision has been a year in the making. But this desire to sincerely thank everyone here has got me writing my first post. Diagnosed 2016, aspirin daily, joined MPNVoice October last year. I’m 61 and from South London with this month seeing my highest platelet count at 725.
But thanks to you guys, I feel so reassuringly informed on my condition. A warm greeting to you, this amazing global community.
Thank you.
🙏🙏🙏
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Buddhability
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I read your comment with great interest. Thank you dear Otterfield! I have ‘seen’ you here as someone whose warmth is always communicated. Thank you for taking time to shine some light on this. I do hope you are well. Yours
Thanks Pte82. Gosh, no I can’t say I have. I appreciate the suggestion. My, I never thought that I might enter into a situation like that. I just had a quick look on the internet. Wow! I hope this finds you well my friend.
John, I raised that because my wife's oncologist never mentioned a transplant. He retired and his replacement did and said she was no longer a candidate. I encourage you to investigate the subject and have a discussion with your health care provider.
That’s a lovely thoughtful post. This forum is here to support fellow members, you’re not wasting anyone’s time. I’m sure you’ll get plenty of encouragement from the many members on Pegasys treatment.
You were diagnosed the same year as myself, also ET (Jak2+). I’m on a low dose of hydrea, which suits me just fine.
It’s natural to feel some anxiety at the thought of starting meds. I’m making an assumption that living in South London, you’ll probably be under Guys. If that’s the case, you’ll be monitored well.
Thank you so much mhos61. It’s remarkably reassuring to ‘meet’ someone in a similar situation and you are absolutely correct I am under the wing of Guy’s hospital. I have to confess to being a massive NHS fan. Again thank you for writing, it’s incredible how empowering a letter such as yours can be. I do hope all is well in your world, I wish I could reciprocate your warm wishes to me at my journey onto you on yours. Yours
We are stronger together, What you post is never a waste of anyone's time. We are blessed to be able to be there for each other.
Glad to hear you are upbeat about starting on PEG. My experience with it has been quite positive. It was one onf the best decisions I made in managing the MPN.
Hunter, you are a magnificent part of this community. It’s an honour to get your message. I have found it nothing short of shocking and equally inspiring your own health journey. As you say, we are stronger together and I have reaped a huge, bountiful source of reassurance and knowledge from so many of your posts. Thank you.
You're right about this forum, it's the only social network I belong, and is a great place to meet and learn from each other.
Have you received an allele burden %? You've likely seen discussion here whether it matters, but my thought is it's best to have for future reference for if/when it is shown to matter. It is one of the numbers to track as you proceed with INF therapy.
For the transplant discussed here, it is often curative for those who tolerate it. We would all like that. But it is risky, much more so than the medicines we take. That is one reason it's reserved for later stages of MPNs. With the mild ET that you seem to have it very well may not add any longevity and with the risks could even reduce it. I would be surprised if a Dr proposed or agreed to it. But if you hear otherwise we will all be glad to learn from that.
I too am on hydroxycarbamide low dose ,tolerating it well ,I am ET jak2 mutation feeling really good been on it since June 21 with aspirin so I am fairly new here hope you remained well ,along with all our fellow MPNers
Sorry to take so long to reply. Really appreciate your reply. I will mention my Allele Burden when I go back to the hospital. Wishing you every success with your INF Besremi! And thank you! Your welcome to our garden of friends truly warmed my heart!
Bobbie that is so cool and reassuring for my part! Thank you! Your Peg journey emboldens mine I can assure you. I will think of you when I’m next at Guy’s. I do feel lucky. Thank you.
Hi Peg is a breeze to take and that’s from someone who is still terrified of vaccinations and having blood tests. Put an ice pack on your tummy for 5 mins prior to injecting. You won’t feel a thing x
Hi William. Great question that had confused me for months when I was asked to choose between the two medications last year. I was like: I have no idea! So my decision was made knowing that if INF wasn’t working for me I could go to HU after ( I had read of people going in the opposite direction - HU first then INF). If that makes sense. What appealed to me was reading of the possibility of remission with INF, it was nothing more than: I fancy that!
I’ll try that and if that doesn’t work I’ll try HU which a lot of people here seem to be on.
I’ve had a small skin cancer removed off my face before which added into my decision.
I’m in the UK so it’s the National Health Service NHS that I see. That’s a free service (everyone pays into it that works) so I’m not part of an insurance scheme and in the NHS, cost is never discussed (that must sound bizarre to some in different parts of the world!). The team I see only offered me the two options Interferon and Hydroxycarbamide so I didnt consider Besremi. Hope that makes sense William. Thanks for writing.
Hi and welcome to this great and friendly forum! What a lovely thoughtful post you have written. I’ve been a member for 2 or 3 years now and find it so helpful. I have the same as you too, ET JAK2+ and on Hydroxycarbamide 500mg. daily which has been keeping platelets and all bloods at a good level. I’m also taking Clopidogerel instead of Aspirin. I wish you well in your journey. Your platelets, although high, don’t seem too bad.Best wishes, Fran
Fran, a delight to read your message! It’s so reassuring to ‘meet’ people in the same boat so to speak. Thank you for your sweet thoughts and for me, the opportunity to travel this journey in good company!
Lynne thank you!! Sorry to take so long to reply. I really appreciate your message. You really are a champion! A much needed ally on my journey. Warm wishes to you.
Hi, John, I’m really glad you decided to finally post something. It gives you an idea of all the support you can get on this site. It has been a lifesaver for me
I understand your anxiety regarding Peg. I am post Et Mf and have been on hu on and off since 2008. It’s no longer successful at lowering my platelets. My present hematologist just recently suggested I try peg interferon. I also have reservations, but it seems that several people on this site have had a positive experience. So I’m giving it some thought.
Wow! Thank you Cja1956. I am humbled by your health journey and praise of this community. I have every confidence you will reach the best decision, as you say, there are people’s experiences we can and do draw on here.
Hello Buddhability, you most definitely are not wasting our time with your post, it is a pleasure to hear from you and to know that reading the posts and replies on this forum has been helping you.
It is very unsettling and scary when you have to start taking medication for your MPN, so we understand how you are feeling, I hope that it all goes well for you when you start it next week, keep us updated and remember, we are here for you.
I stay between blissful denial and emotional anxiety too. I love how you put that. My doctor recommended that I do nothing for now which is also scary. It’s all scary to me. Let us know how it goes. I love this site. Everyone is so helpful. When I try to explain PV to my friends and family they go from horrified to - Oh, so it’s not like you’re dying…. 🤦♀️ Neither response is comforting. It’s nice to belong to a group that totally understands. ❤️
Don't worry. The best thing that happened since my diagnosis (exactly the same as yours) was being prescribed Pegasys. First told to use the full 180 mcg but happily, I'd done a lot of research and asked if I could use the lowest dose in order that my body could get used to it. I have a lousy reputation for being intolerant to just about anything I'm prescribed. After an initial few months getting used to the side effects, my bloods leveled out well on just 45 mcg, so I'm happy. Still using it for the fourth year.
Wow! Wow JackLina! You’re amazing. I really feel you. I remember it so vividly, last week when my consultant said they would start me on a low dose with the option of going higher.
You journey could not be more encouraging for me than it is!
You are a star!
I’m actually happy to share the same diagnosis as you if that makes sense.
Really pleased to be of help. This hasn't been the easiest journey, of course but since being on this dose it has stayed the same apart from going from weekly to fortnightly. Tried every three weeks but my body rebelled.
I hope all goes well with your own 'journey'. as long as you recognise the 'new normal' you're going to embrace, you'll cope!
I understand your anxiety about starting medication for your MPN I too am very nervous I was diagnosed with ET jak2+ several years ago but following a BMB last year was told its now PV. Currently my PV is managed with aspirin and venesections when required but I've just turned 60 so I guess at some point I'll be starting medication 🤔 I've also been diagnosed with lymphoma, for which I'm on watch and wait and recently I was diagnosed with polymyalgia rheumatica for which I've had to start predesalone which I'm now trying to taper down but my GP said it will take about 2 years to get off it completely maybe longer.
Like you I too read lots of posts and have learnt so much on here about my MPN including information around various medications which is good because now when I do have to start meds for my MPN I feel I'll be better informed to discuss the best treatment option with my hematologist.
I really don't think you need worry about wasting anyone's time as in my experience on this site people are more than willing to help with any problems or queries you may have.
Good luck on your journey sounds like you have a good team at Guys.
I had some excellent advice and support on here when I was diagnosed with ET Jak2+ about 10 months ago and started on pegasys. Within a few months my numbers all came down and now all my blood levels are normal. (Beautiful as the doctor put it) I have been on a dose of 45mcg since I started and I still am. I was really surprised at how fast it started working, the only side effect I have had is being tired all the time. Small price to pay though.
Good luck on your pegasys journey and I hope it works as fast for you as it did for me.
Jynx please forgive me, I’m not sure how, but I missed seeing your reply until today. What an amazing and inspiring journey you have had with the medication. I’ve yet to start as the appointment for me came through as late March. To be honest, the anxious side of me was happy to delay as I had thought I was going to start straight away earlier in February. Thank you deeply for your reply. I will let you know how I get on but will definitely be hoping for results as swift as yours! Best wishes. John
I found it rough at the beginning but stuck with it and a year on was so glad I did. Body has adjusted to side effects and they’re minimal now on a 90mcg fortnightly dose. Platelets are down to 244 at last count and it might be coincidence but my mpn symptoms have significantly eased since platelets dropped.
Sarah you are amazing!! I’ve just read a thread of yours, the one where you said that us MPNers were so awesome we could take over the world if we weren’t so tired! 😂 I’m still laughing at that!
Incredibly touched that you ask, I haven’t started yet. I thought it would have been straight away at the beginning of the month but my appointment came through a few weeks later for the end of March. I won’t lie, that fed nicely into my denial about the whole business so I’ve mentally put it, not on the back burner, but to the side f’sure. Really sweet of you Sarah, I hope you’re doing fine yourself. My very best wishes, John
No harm in having slow start! I know many of us here did myself included. It can help to get in the right mindset to deal with a couple of months of side effects while adjusting to peg. Fingers crossed you’ll be like some others here who breezed through the transition 😊
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Thank you MPN Voice! Where are you from?
Thank you all. 
