Last week I saw an MPN Specialist at Stanford in Palo Alto, CA (Dr. Gotlib) and it was nothing short of AMAZING! I waited months for this appointment so by the time it came around I had a binder full of questions. My Husband and I spoke with him, his Fellow and Nurse for almost two hours about my disease (ET+ CALR ) and how to treat it. He agreed that Interferon (Pegasys) is the best treatment at this point. I asked him about Besremi and he said that only people with PV have this option (from insurance companies) but he doesn't prefer one over the other. So Pegasys is fine. I also asked him about the trials being done right now for the new drug that treats people with ET+CALR mutation and not only did he know everything about it, he was actually giving a presentation on it days later. Eventually he wants me to go on this drug and of course the goal of all of this is to go into remission. But I'm researched enough to know that this is a marathon and to take it all one step at at time. If anyone has any questions send them my way. We talked about A LOT. I wish I went to him when I was first diagnosed as my life could have been so different. Thank you so much to this forum for giving me the confidence to seek an MPN Specialist and providing such important information.
Side note: Just did my 5th Pegasys injection (once per week @ 90mcg) and feeling great! Getting labs next week to see where my platelets land.
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Zeppelin11
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That is fantastic news! Seeing a great MPN Specialist makes such a huge difference. Kudos to you for advocating for yourself. Please do let us know all that you have learned. Everyone can benefit from your knowledge and experience.
Very interesting and encouraging piece! I have same diagnosis and in UK treated almost identically. Glad to know our respective haematologists are on the same page.
Yes! It was comforting to know I'm on the right track. He even said he would have me on an aspirin regimen because I'm level 1 (low risk) however when my platelets are in the millions I start o have side effects such as major fatigue and dizziness (like I'm on a boat) so we have to keep my platelets below 800,000 with medication so I don't have those symptoms.
Thank you for sharing your story. I am also ET+CALR, and I have been on Hydrea for two year with a few increases along the way. I know take 19 capsules a week and my platelets stay around mid 600s. I had a TIA which started me on the hydrea in 2020. I am 56. I am curious if you had started on Hydrea?
Yes I did, I have been on Hydrea since 2017 and I'm 38 now. I was on 3 pills a day and I think my body was growing a resistance to it. Because I'm so young and feared the side effects of this drug I wanted to explore my options. Pegasys has been a great fit so far however I have only been on it for 5 weeks. Curious to see how my body reacts and if I can get my Platelets stabilized at a good number. Very hopefully about the new drug going out for what we have as well! My MPS Specialist is at the forefront so I will provide any updates.
Hi Zeppelin. On Peg, over course of a few months, my platelets dropped from over 1200 to around 510 from which they haven’t budged! Consultant encouraged by fall but is not too worried about current level, provided it doesn’t creep any higher. In ideal world it should be around 450 but hopefully it will fall incrementally. I’ve bought myself a blood pressure machine. Haven’t tried it out on myself yet! Haha!
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ET CALR mutation mail 53y.o.
ET CALR
