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Need help newly diagnosed with a high platelet count and the JAK2 gene
Blood Cancers & Disorders | Last Active: Sep 29 9:06am | Replies (28)Comment receiving replies
Hi everyone and thank you for your support. I went for my follow-up today and was officially diagnosed with ET. Doctor would like me to go on hydroxyurea immediately. Have no idea what to expect. Doctor said I may have several side effects, however, I wanted to reach out to everyone and see what experiences everyone else has had on this drug (because I have heard good and bad), before I start freaking out. Dose would be 1 pill seven days a week for the rest of my life (have no idea what the dose is yet), because this is all being put through insurance as I speak. I will have to get bloodwork every week for the first month. Any advice on side effects...I still work full time and just don't have a clue as to what I should prepare for or tell my employer. Doctor mentioned: rash, ulcers in the mouth, nausea, diarrhea, fatigue (any insight would be most helpful) thank you!
Replies to "Hi everyone and thank you for your support. I went for my follow-up today and was..."
Hi Linda,
I am 80 and have been dealing with ET JAK2 for over two years. The standard dose of HU (Hydroxyurea) is 500 mg capsules. I have taken one at different timeframes. I started one daily…had a little lightheadness, slight headache, but generally okay. Eventually I dropped to one every other day. Now taking one four days a week. I get some headaches and fatigue. I already had arthritis so some fatigue came with it.
I was diagnosed with ET Jak2 over a year ago my PLTS range from 450 - 700 My oncologist said I am fine to just take baby asa no HU until I hit 1000
Hola, tengo 41 años y tomo hidroxiurea ya hace 10 años.
Tomo 2 comprimidos 5 días a la semana y 3 los otros 2 días.
El síntoma más importante que he tenido es la fatiga. Intento descansar cuando puedo y a su vez hacer algo de actividad física funciona contra la fatiga.
Saludos y suerte, Vanessa desde Uruguay!
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Hi Linda. Hydroxyurea is a standard first line treatment for some blood conditions such as ET. The hydroxy can help curtail the over production of white blood cells associated with essential thrombocythemia. I know the thoughts of taking a new medication, especially one that’s classified as a chemotherapy drug can stir up the anxiety. The side effects for most people seem to be minimal with fatigue being the more common among the experiences shared on Connect. I’ve found three related discussions you might want to scan through. More can be found by typing in Hydroxyurea for ET or Hydroxyurea or HU in the search bar at the top of the page. You’ll see a huge list of conversations about the medication.
Here are the links…don’t hesitate to pop into any conversation! 😉
What are most common side effects of hydroxyurea?
https://connect.mayoclinic.org/discussion/hu-side-effects/
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How fast do you start to feel hydroxyurea symptoms? https://connect.mayoclinic.org/discussion/how-fast-do-you-start-to-feel-hydroxyurea-symptons/
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Any suggestions on what time of day is best for taking Hydroxyurea? https://connect.mayoclinic.org/discussion/any-suggestions-on-what-time-of-day-is-best-for-taking-hydroxyurea/
I’m not sure if you really need to say anything to your boss or not. Under the HIPPA laws, that’s really not necessary but certainly your prerogative. There is a recent conversation started by one of our members who had a bone marrow transplant several years ago. She asked the question about whether or not she needs to inform her new supervisor of her medical history. This might be interesting for you to read through too:
Do you share your medical information with your boss?
https://connect.mayoclinic.org/discussion/do-you-share-your-medical-information-with-your-boss/
Was your doctor helpful in explaining about ET?