Hello everyone, I am new here. I am 27 Male and as of last week Jak2 positive. I have my bone marrow biopsy tomorrow to see whats what. My Platelets fluctuate between 550 & 600 and I have really no other symptoms other then the platelets, I wouldn't have known if not for random blood work. I am going to have my hematologist refer me to an MPN specialist as I've seen here that is my next step.
I want to say that this forum is amazing and I am extremely grateful for all the information posted here. I have been a daily reader and it has been a great help.
1. Does anyone use NIR or Red light therapy? It is supposed to reduce inflammation, improve blood circulation, promote collagen & relieve your cells of oxidative stress? there is host of other benefits LLLT offers too but these are the main. (low level light therapy) - Would love your thoughts!
2. Is migraine with aura a common symptom in people with MPNs? I have had them since grade school and found it very interesting to see that when I started reading, a decent amount of people were mentioning they also had them.
3. One of the main questions I have that has not been answered yet is about Crispr Cas9 and Gene editing, specifically for MPNs. I know that there are a number of biotech companies working on and even, I don't want to say "cured" but relieved or helped a number people with sickle cell disease. They seem to be working on an array of other Crispr therapeutics for a number of other diseases. I was wondering if anyone knows of any work being done in the crispr world regarding MPNs and the Jak2 mutations? There is a lot of promise in this industry and a lot of talent flooding into biotech over the years since Crispr was discovered. I was wondering if any one has any information regarding this sector and MPNs. I would love to know your thoughts on this. Thank you for your time.
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Your PLT is not so extreme as you've likely seen here. But details matter and your gene sequence will be illuminating. You should ask for the NexGen Sequencing that looks for 50 or way more relevant mutations. If PLT is your only blood out of range it is more likely to be ET, but you will need more info.
I had occasional migraines in the past that in the worst cases led to beautiful hallucinations. But my MPN has not caused them to recur, just normal head pains.
On Crspr and related immune therapy, this post (and others) has some info. Nearest term benefit, if any, will be with CALR. Jak 2 presents some challenges as discussed here that they are also working on.
Welcome to the forum. Glad you found your way here.
Migraines are indeed a MPN symptom related to microvascular issues caused by the JAK2 mutation. There can be a number of interventions based on your profile. I started to get visual migraines after a brain surgery, with aura, scotoma, diplopia, scintillation and palinopsia (hallucinatory and illusory). I have responded quite well to Ubrelvy (a CGRP inhibitor) to treat the migraines.
Regarding gene therapy , there is research underway. Gene therapy is a complex issue and there is more than one type of gene therapy that may apply to MPNs. there is also an emerging type of treatment that is vaccine-based for the CALR mutations. EPguy provided on link to look at some prior conversations on this topic. Reviewing the literature requires a base understanding of the genomics associated with MPNs. Here are some links for that.
hello and welcome to our forum, so glad that you found us and that reading the posts etc has been helping you. There is such a lot to understand when you are newly diagnosed, I hope that the information on our website has been helping you as well, mpnvoice.org.uk
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