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Anyone living with Essential Thrombocythemia with JAK2?
Has anyone been living with,ET, jac2 mutation
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Has anyone been living with,ET, jac2 mutation
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
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@sanlee7
Just getting started, and now you have to change horses midstream! I'm so sorry you must look for a new doctor.
Maybe you can find where your current hematologist is going, and call that practice?
In the meantime: Please continue doing exactly what your doctor prescribed!
Aspirin is not a substitute for HU. Instead, it's Robin to HU's Batman.
HU reduces the number of blood cells that our bone marrow produces. This is essential because over-production taxes our energy, crowds our blood vessels, and wears out our bone barrow.
HU doesn't instantly lower your count, though! It can take weeks, months or even years to get the desired reduction.
That's why daily aspirin is helpful, for those who can tolerate it. Aspirin literally makes our blood more slippery. Every dose helps discourage our platelet-heavy blood from clotting.
With every dose of aspirin and HU, you are taking control of your ET.
Of course you're scared! But you are doing everything right.
Keep up the good work!
Please let us know how you're doing.
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5 Reactions@janemc Thank you so much for the info!! I do take a baby aspirin every nite and I hope to find a new doctor by Monday.
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3 Reactions@mdramsey48 Thank you so much for elaborating on this topic again and helping me out with your valuable experiences. However i have to admit that not the procedure itself is worrying me. Mostly the possibility of a negative outcome is the thing I am frightened about 😅.
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4 Reactions@sanlee7 Lost both my cardiologist and hematologist to retirement, and it is hard to adjust to the new person sometimes, especially if you're older and in the middle of something. As the age gap between you and your docs grows, it's a bit harder to build rapport. Hang in there!
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1 Reaction@janemc Batman and Robin. Perfect!
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3 Reactions@nohrt4me
That makes you Catwoman!!
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1 Reaction@birgitr
Anyone would be frightened. Knowledge is power, though.
Please keep us posted.
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1 Reaction@janemc My favorite villainess! Loved both Julie Newmar and Eartha Kitt in that role in their slinky catsuits. The real cat looks totally bored, tho.
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7 Reactions@birgitr Well that is a valid fear. I hope everything is good and no scarring. I was left to decipher my BMB results on my own and I was positive I had all kinds of genetic mutations until I got breast cancer and a new doctor lol. It looks much worse than it is for sure but still no fun being told you have a lifelong cancer at the very least. Best of luck!
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2 ReactionsMy daughter is 24 diagnosed last July with ETJak2. She has a number of symptoms the worst are joint hip pain, extreme fatigue and nausea ( she can’t eat anything). She started on pegasys and it was too hard on her body so she was moved to Besremi. We learned she is the second patient ever to be allergic to the drug and she can’t take it. So back to Pegasus which keeps her in bed for three days and unwell the rest of the week and then it is a rinse and repeat cycle. This is not sustainable. They will reduce her pegasys down to 22,5 I don’t have hopes that it will give her a much better life. She has been to Castro, endocrine and a physiatrist with little results. We need help and we are desperate
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5 Reactions