What precautions have Dr's advised you when taking Hydroxyurea?

Posted by bgerges @bgerges, Sep 13 4:51pm

I have been diagnosed with ET with Jak 2 mutation.. I am not taking HU yet but my oncologist has recommended I start taking it to lower platelet count. I have read that precautions have to be taken with body fluids (bathroom, blood, sweat and sexual.) I was wondering how others who are talking HU are dealing with this and what their Dr has instructed them to do.

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nypara66 | @nypara66 | 6 days ago

In reply to @1995victoria "My oncologist approved all vaccinations, covid, flu, shingles, rsv, dtap, pneumonia. The new shingles vaccine, shingrix..." + (show)

@1995victoria
GM I’m curious to your diagnosis? I have PV JAK2 positive. I was told I could take ibuprofen and I take a baby aspirin daily. I specially asked my doctors if there were medications I can’t take and they just said the live vaccines and any new prescriptions I can’t take run by him but the pharmacist will know also. Maybe it’s a combination of the HU and which blood cancer we have that makes these decisions for us?

hun8ln2026 | @hun8ln2026 | 6 days ago

I have ET with Jak 2 bn taking HU for 3 years, was told to stay out of sun, use sunscreen and wear hat if in sun. HU has not brought my platelets down. Changed doctors, he is changing my med to Anagrelide, pharmacy has to order it so I haven't started taking it yet. HU does not work for everyone I was one of those people. I only took Tylenol if I needed anything for pain. While taking HU I had extreme fatique, just wanted to sleep all the time. Hope you do well with it. A lot of people said they take HU with few problems.

1995victoria | @1995victoria | 6 days ago

I also have ET Jak2......taking HU and baby aspirin almost 7 years now.

Sandy Morris | @esperanzam | 6 days ago

In reply to @janemc "@petoskeyb In my comment, I should have mentioned bgerges, to whose question I was responding: "I..." + (show)

@janemc
I have never heard or read of ET or HU being a contagious problem to be worried about.

janemc | @janemc | 6 days ago

In reply to @hun8ln2026 "I have ET with Jak 2 bn taking HU for 3 years, was told to stay..." + (show)

@hun8ln2026

Hope the Anagrelide helps you quickly!! Please let us know.

johnrosling | @johnrosling | 6 days ago

I have AML. Why do my platelets fluctuate so frequently.
I am remission but platelets change frequently

hun8ln2026 | @hun8ln2026 | 6 days ago

In reply to @janemc "@hun8ln2026 Hope the Anagrelide helps you quickly!! Please let us know." + (show)

@janemc I would like to find someone that is taking Anagrelide to know if they are having side effects, I am taking it for the first time tonight, pharmacist said I may feel dizzy, I hope not, I will let you know how it goes. Thank you, I hope it helps quickly also. Prayers for you janemc! 🙏

janemc | @janemc | 5 days ago

In reply to @johnrosling "I have AML. Why do my platelets fluctuate so frequently. I am remission but platelets change..." + (show)

@johnrosling

It's stressful when our numbers are "off."

From what I've heard, it's natural for our platelet counts to show some variation.

May I suggest that you bring your concerns to your oncologist? Believe me, I know that is NOT easy. But it's the only way to get answers about your own situation.

All good wishes!

marykatherine62 | @marykatherine62 | 5 days ago

In reply to @janemc "@1995victoria Once again we see, different doctors tell us different things. In my case, my oncology..." + (show)

@janemc
I just got my first shingles vaccine yesterday after verifying with the pharmacist thar it's not live. He said they dont make it live , haven't for years.

janemc | @janemc | 5 days ago

Thank you, marykatherine62, for sharing this helpful information!

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