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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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eloise999 | @eloise999 | Jun 23 12:44pm

I drink a lot of water too! I did not have the lip biopsy and I don’t have the markers. I did not want lip biopsy-ouch!! However, my rheumatologist gave me the diagnosis anyway.

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lynnebgraham | @lynnebgraham | Jun 23 5:50pm
In reply to @sylann725 "@mib Have a problem with chapped lips. Use lots of Vaseline." + (show)
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@mib
Have a problem with chapped lips. Use lots of Vaseline.

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@sylann725 I have very dry lips and put vaseline on every night. This seems to help.

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janemc | @janemc | Jun 24 5:42am
In reply to @loribmt "@mib. I just want to make sure I’m understanding your situation. You have a bridge with..." + (show)
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@mib. I just want to make sure I’m understanding your situation. You have a bridge with one of the teeth under a crown where there have been some changes to the tooth. Was this the root area seen on a dental X-ray?

You mentioned that there is some resorption of the tooth. Resorption is a process where the body breaks down and absorbs the structure of a tooth. may be influenced by number of factors such as inflammation or possibly medications.

Have you talked to your hematologist and your dentist about the possible link with hydroxy? What has your dentist suggested regarding the bridge?

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@loribmt

Hope you get the answers you need from your dentist and hematologist, mib. I'm so sorry for what you are suffering.

In addition to her blood cancer expertise, Lori shares with us her expertise from her long career as a dental hygienist.

THANK YOU, Lori!!!

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Jennifer | @williamsjen | Jun 25 8:36pm

Hello, I am doing good no real side effects just take my Hydrae daily and continue to enjoy life.

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janemc | @janemc | 6 days ago
In reply to @williamsjen "Hello, I am doing good no real side effects just take my Hydrae daily and continue..." + (show)
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Hello, I am doing good no real side effects just take my Hydrae daily and continue to enjoy life.

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@williamsjen

It's great to see this update! You've made great progress since your diagnosis!

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sanlee7 | @sanlee7 | 4 days ago

I have been on HD for 2 months 500 mg once a day and it has dropped my count from over a million to 650k! My side effects are mainly extreme tiredness and achy ness. I hope they will cut me back soon on the HD.

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janemc | @janemc | 3 days ago
In reply to @sanlee7 "I have been on HD for 2 months 500 mg once a day and it has..." + (show)
Profile picture for sanlee7 @sanlee7

I have been on HD for 2 months 500 mg once a day and it has dropped my count from over a million to 650k! My side effects are mainly extreme tiredness and achy ness. I hope they will cut me back soon on the HD.

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@sanlee7

That's fantastic progress, sanlee7!

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