Hello! I was recently diagnosed with ET. I had not had bloodwork done in 15 years but just decided maybe I should and my platelets came back 600. They rechecked again 2 weeks later and they were 617. So, I was referred to a hematologist. After more bloodwork there, they found I was also Jak2 positive. My doctor did not act like it was a big deal and did not explain much other than to say I should start taking low dose hydrea. Being that it is a chemo pill, I do not want to take it unless I have to. He said he is okay with me taking aspirin for now and getting monthly blood checks. I am 47 and super healthy. I jog a lot and eat healthy. The only symptom I would say I had was headaches and they are gone now, maybe due to baby aspirin each day? Also, I now have a suspicious nodule on my thyroid they suspect may be cancer??? I did not even know it was there but my gyno found it on yearly visit. How could I have 2 cancer diagnoses in 2 months? I go for a biopsy soon for that. Also, my paperwork shows my jak2 allele % is 13%. Is that low? I do not really understand that part. Thanks so much!
ET/Jak2 postive: Hello! I was recently diagnosed... - MPN Voice
ET/Jak2 postive
Hi! I'm sure others will tell you much more about ET but just wanted to reassure you a little bit as I know it's hard being newly diagnosed. First off, your JAK burden is nice and low so that's good. Second, there is debate about when to start medication but Interferon is better - especially when you are that young. It's harder to get your insurance to pay for it in the U.S. I hear but in Denmark, where I'm from, it's first choice if you're under 65 or something. And third, this is kind of a "nice" form of cancer so try not to worry too much about it for now but make sure you discuss medication with a good doctor. Sorry that you are overwhelmed with cancers! It might or might not be related. Wishing you the best!
Hello and welcome to the forum. This is a great place to find support and hear from the perspective of others with MPNs.
I was diagnosed with ET 31 years ago. It progressed to PV 9 years ago. I have lived a good life while managing a MPN and at age 67 continue to do so. There can be issues to manage with a MPN. It is often the case that the secondary symptoms (e.g., fatigue, pruritis) are more bothersome than the primary risks of thrombosis or hemorrhage. The good news is that there are ways to manage the symptoms.
You have already learned that Et is a form of blood cancer. Many of us look at ET as cancer with a little "c" rather than cancer with a big "C". It is a truism that you are more likely to die with ET than from it. Most people with ET can live a normal lifespan.
One of the most important things to do when first diagnosed is to learn more about MPNs from reliable sources. Educated patients can make better decisions about their care. There a some excellent resources, starting with the MPN Voice website. Here are a few of the better sources
patientpower.info/myeloprol...
As ts75 indicated, an allele burden (AKA Variant Allele Frequency) of 13% is not particularly high. It is pretty common with ET. People with ET tend to have a lower VAF, people with MF the highest, and people with PV somewhere between. The JAk2 mutated hematopoietic stem cells have a clonal advantage over wild type (normal) HSCs. VAF tends to progress over time. This may or may not be accompanied by a progression of the disease symptoms or type of MPN you present with.
The standard protocol for people age < 60/65 is for aspirin and monitor. Unless there have been incidents of thrombosis or hemorrhage, high-risk co-occurring conditions, or symptoms that are a problem, most MPN Specialists would not start cytoreduction at a younger age. When cytoreduction is needed at a younger age, most MPN Specialists would not recommend hydroxyurea due to the risks associated with long-term use. Many would start the patient on Pegasys (PEGylated interferon alpha 2a) instead. Many docs prefer one of the interferons for older patients too.
legeforeningen.no/contentas...
mpnjournal.org/how-i-treat-...
MPNs are rare disorders. Most doctors, including hematologists, have little experience with them. It is very important to consult with a MPN Specialist to ensure optimal care. It is important to consult with a doctor who is up-to-date on MPN care and able ti individualize you care. Here are two lists of MPN-expert doctors.
pvreporter.com/mpn-speciali...
You are not the only person with a MPN who has a secondary cancer (potentially). The JAK2 mutation predisposes us to other cancers. There is information about this in the literature when you are ready to look at it.
Please know that you can plan for a long and successful journey managing a MPN. There is a lot to learn and plenty of time to learn it. There are some excellent patient forum you can attend where you can meet others with MPNs and hear from the leading MPN experts. Here is one example. The presentation by Dr Jyoti Nangalia on MPN Molecular Biology is a great place to start. mpninfo.org/conferences/202...
Wishing you all the best.
To Hunter5582....Thank you for being part of this and providing all of your valuable insight, advice and information. You are a true gift from G-d. Thank you ....
Thanks so much for the info! This was so helpful.
Worth looking into Pegasys or besremi for treatment as another option. Good luck with the thyroid.
I was diagnosed with ET (with JAK2 mutation) in 2017, with a PLT count of 500+ at that time. My oncologist prescribed 500 mg Hydroxyurea and 81 mg aspirin once per day and that brought my PLT count down to about 375, so all is good now.
I read that taking 81 mg aspirin twice per day was 88% more effective than taking it once per day to reduce the probability of having a thrombotic event and my oncologist was okay with that, so that is what I do now.
Thanks for the reply. Do you have any side effects from the hydroxyurea?
Some tiredness and mouth sensitivity, but that's all.
I supplement daily with whey protein isolate to deal with the tiredness and I use Biotene mouthwash to address the mouth sensitivity.
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