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How did you make the final decision to begin HU protocol for ET?
Blood Cancers & Disorders | Last Active: Jan 22, 2023 | Replies (75)Comment receiving replies
Today diagnosed with ET/JAK 2 mutation.
Hello ~ I have been reading other posts and recognize that initiating this one may move me to a more appropriate/helpful thread - which I would be very grateful for! Today was my second consult with a specialist in hem/onc to discuss bloodwork results. Dx = ET/JAK2 V617F (MPNs). Tx = ASA 81mg 1xday. A bone marrow biopsy is her next diagnostic plan for identification of secondary process. She is advocating for hydroxyurea starting with a low dose. So first, I am overwhelmed by this diagnosis. I would not have even sought medical help but this (platelet count 621)was discovered in a pre-op screening (as an aside, I was cleared for UKA which I had 11/15 - all went very well and rehab is also going extremely well). Aside from "verbally vomiting" here my initial response is....I am very thankful that I found this group/resource as I take my first step on this journey. Next, I imagine I will want second opinion(s). Did others do so as well and did you do this prior to having a biopsy? Prior to starting medication? Aside from a minimum dose estradial patch/progesterone I am not on any meds so this is all quite dauting.
Sent with great gratitude ~
Replies to "Today diagnosed with ET/JAK 2 mutation. Hello ~ I have been reading other posts and recognize..."
I did not have a second opinion, but my dad had ET, so I knew about it and felt the oncologist at my regional hospital was doing the right stuff.
That said, I think second opinions are a really good idea. I also plugged into some seminars from MPN groups, both live and online.
I did ask my cardiologist and GP about hydroxyurea vs anagrelide after my diagnosis because, as platelets rise we all end up on something. My cardio told me HU was the better choice because anagrelide can cause heartbeat issues.
Do what you need to do to feel you are informed and feel you are making the best decision for you!
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@jsslmt53, welcome. We have many members who are living with Essential Thrombocythemia and talk about JAK2 mutation and treatment options. I could've moved your initial post to any number of discussions where you'll find helpful and supportive members to journey with you. I chose to start you here:
- How did you make the final decision to begin HU protocol for ET? https://connect.mayoclinic.org/discussion/how-did-you-make-the-final-decision-to-begin-hu-protocol-for-et/
Here you'll meet @eansgardengirl @arti4 @treeore @rjgregory440 @koryw208 @athl @nohrt4me @eileen11108 @claire39 @anno @garyinmo @cleo2 @mortysdad @biddypoppop @cowestwinds @marthajones and others.
Here are additional discussions you may want to check out:
– Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
– People living with ET and taking Hydrea: Anybody setting records? https://connect.mayoclinic.org/discussion/anybody-setting-records/
– I have JAK2 ET and MPN: Anyone else have these symptoms?https://connect.mayoclinic.org/discussion/jak2-et-and-mpn-symptomscause/
@jsslmt53, you're asking all the right questions. I look forward to seeing the guidance you'll get from others.
PS: Verbal vomitting allowed. 🙂