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Anyone living with Essential Thrombocythemia with JAK2?

Posted by lindamarie63 @lindamarie63, Dec 3, 2024

Has anyone been living with,ET, jac2 mutation

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jodyjazz | @jodyjazz | Mar 27 8:03am
In reply to @mw2023 "@jodyjazz Did your oncologist reduce the HU dosage or was that your decision? I'm about to..." + (show)
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@jodyjazz
Did your oncologist reduce the HU dosage or was that your decision? I'm about to reduce my HU to every other day and will discuss with oncologist next week. He thinks I can just deal with side effects even though quality of life has diminished. He's very happy since all blood counts are low normal and that's all he wants to see.

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@mw2023
First, I just quit, and didn't ask anybody, for one week, then I got scared of a stroke, so negotiated the evo day schedule.
New blood work suggest a rise in platelets to 441, which they did not see as alarming. I go back in May to check again.
It is your life and your body, but! For me the risk of having a stroke and NOT dying is horrifying. So I will put up with hair loss if need be I guess.

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jodyjazz | @jodyjazz | Mar 27 8:09am
In reply to @mw2023 "@jodyjazz I had same throat symptoms and reflux. Decided to try gluten-free diet. Those symptoms became..." + (show)
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@jodyjazz
I had same throat symptoms and reflux. Decided to try gluten-free diet.
Those symptoms became less in 1 week. It's been almost a year on gluten-free diet and symptoms have never returned.

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@mw2023 Thanks will give that a try.

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vickieannb57 | @vickieannb57 | Mar 27 10:02am
In reply to @mw2023 "@jodyjazz Did your oncologist reduce the HU dosage or was that your decision? I'm about to..." + (show)
Profile picture for mw2023 @mw2023

@jodyjazz
Did your oncologist reduce the HU dosage or was that your decision? I'm about to reduce my HU to every other day and will discuss with oncologist next week. He thinks I can just deal with side effects even though quality of life has diminished. He's very happy since all blood counts are low normal and that's all he wants to see.

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@mw2023 My Doctor reduced my dosage plates are 243 she said we have room to play. If my numbers start up we will add 1 pill at a time . It has been 3 weeks will go for blood work next week guess we will see.

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vickieannb57 | @vickieannb57 | Mar 27 10:03am
In reply to @vickieannb57 "@mw2023 My Doctor reduced my dosage plates are 243 she said we have room to play...." + (show)
Profile picture for vickieannb57 @vickieannb57

@mw2023 My Doctor reduced my dosage plates are 243 she said we have room to play. If my numbers start up we will add 1 pill at a time . It has been 3 weeks will go for blood work next week guess we will see.

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@vickieannb57 the above comment was from @vickieannb57 not @mw2023. Sorry if that confused anyone

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jfranz60 | @jfranz60 | Mar 28 11:36am
In reply to @dewz13 "I have been on Hu for about a month now. Have had one update on labs...." + (show)
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I have been on Hu for about a month now. Have had one update on labs. I noticed my WBC declined. I guess this is why they say you are more susceptible to infection/ colds etc. My question is, does this level out? Do you review with your doctor at each check in?

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@dewz13 I’m curious as well. I’ve been on Hydrea for 6 weeks and my wbc count has dropped from 6.4 to 4.0. I see Dr next week and will get his thoughts.

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alikay | @alikay | Mar 29 8:10am
In reply to @jodyjazz "@janemc This is very interesting to me. I went to an allergist due to constant post-nasal-drip..." + (show)
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@janemc This is very interesting to me. I went to an allergist due to constant post-nasal-drip and the annoying constant throat-clearing. He said I was not allergic to anything..........great, and that I had non-allergic rhinitis. Never thought about the HU. And never had this issue till started taking it. I just reduced my dose of HU to every other day 500 mg and my hair stopped falling out, but will try to OTC allergy pill again. Thanks. I know we all are different, and have different reactions but what the heck?/

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@jodyjazz itchy nose and throat and post nasal drip since starting HU in Oct’25 for ET JAK2. I’m using Astepro with success ! Worth a try.

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jodyjazz | @jodyjazz | Mar 29 12:01pm

I will certainly try Astepro............thanks!!

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claire1776 | @claire1776 | Mar 30 7:12pm

I was diagnosed in fall of 2024 but have only just started treatment this past winter. I am feeling fortunate that I have no side effects from the medication.

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claire1776 | @claire1776 | Mar 30 7:16pm

Wondering what the risk factors are for ET patients who get the flu/an effection. I'm in my 70"s. Anyone have any experiences?

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writernana | @writernana | Mar 31 4:46am

I have ET with JAK2, 78 years old woman, diagnosed 3 months ago, Taking HU chemo.
My oncologist and neurologist want me to also take
Cymbalta generic for severe neuropathy pain. Anyone already taking it? The side effects look a bit scary.

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