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Profile picture for 1pearl @1pearl

Hi @janemc,
You are very lucky that your oncologist/hemotologist told you that Hydrea helped your bone marrow. Both the oncologist/hemotologist and bone marrow transplant specialist I saw last year when I had Kaiser insurance told me that Hydrea did nothing to protect bone marrow. It just reduces blood cell counts and my platelets went down by 400 with me taking nothing! Maybe that is why I never considered taking Hydrea and will not ever take it. The bone marrow transplant specialist said I was in no need of a bone marrow transplant when he saw me and was not sure if I ever would need one. I will see a true MPN specialist soon since I changed my insurance 1/2026 and my new primary doctor honored my request to see the head MPN specialist at UCSD for the CALR mutation I have. (Kaiser has no MPN specialists.) I am looking forward to finally seeing one and blessed that I feel fine with no symptoms as I always have.
Happy 4th July long weekend to all!

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Replies to "Hi @janemc, You are very lucky that your oncologist/hemotologist told you that Hydrea helped your bone..."

@1pearl

I'm so glad you're doing great!

This is yet another example of why an ET diagnosis is so diabolical.

I hear one thing from my oncologist . . . others hear something else entirely.

Utterly confusing.

To me, what I heard makes sense: manic overproduction of platelets strains bone marrow. With HU, the stress on the bone marrow is reduced.

Without intervention, the bone marrow is depleted. And the success of a bone marrow transplant is far from assured.

How long will it be before MPNs are truly understood? Not in my lifetime, I'll bet.