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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)
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@pfscheyer

I was diagnosed with PV in January 2021 when my doctor sent me to the ER after my blood test showed a high potassium level. This blood test did not include a CBC. When a CBC was done my HCT was 70.1. I had numerous phlebotomies the first month and placed on HYDROX (abbreviation) 500mg at first then 1000mg. I had phlebotomies first every month then placed on every 3 months. My numbers were between 48 to 51 before the phlebotomies. Recently I decided to go to a major cancer hospital in Houston, TX to get a second opinion. I went yesterday and they want me to join a study for a new medication-- rusfertide. I am apprehensive. I do not like taking medications, but this new doctor seems to frown on the usefulness of HYDROX.
I'd like to know if anyone is in this study or any other study. Evidently this study was stopped at one point due to skin cancer occurrence. I have a history of skin cancer and with the HYDROX.. I seem to have more, but my present doctor does not think that the HYDORX is causing it. This new drug they do recognize this as a side effect. The new doctor says that both drugs have that side effect, in fact he said all the drugs do. I'm confused and really don't know what to do.
Has anyone experienced this side effect with HYDROX or had any problems with the drug causing skin cancers?
Is anyone participating in this clinical trial?
Thanks so much for your input.

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Replies to "I was diagnosed with PV in January 2021 when my doctor sent me to the ER..."
Lori, Volunteer Mentor | @loribmt | Feb 16, 2023

Hi @pfscheyer, I can’t weigh in on your question about the new drug being offered in trial. However, as your doctor mentioned, Hydroxyurea, as with all immunosuppressant drugs, can weaken the immune system. That makes us much more susceptible to skin cancers. So it’s important to avoid unnecessary or prolonged exposure to sunlight and to wear protective clothing, sunglasses, and sunscreen.

I know taking these meds can be frightening. But they are allowing us to live a ‘normal’ life which would be greatly impacted without these drugs.

I found an article for you regarding the Rusfertide. It looks from the report in AshPublications.come that this new drug has been shown to be quite effective in reducing the amount of phlebotomies and lowers hematocrit. According to the article it’s well tolerated. Might be worth trying it.
Here’s the article for you.
https://ashpublications.org/blood/article/138/Supplement%201/390/478239/Rusfertide-PTG-300-Induction-Therapy-Rapidly
Your followup information could be really helpful to so many members who also have PV. Let us know what you decide, ok?

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albertedward | @albertedward | Feb 16, 2023

Thank you for the information.I am on hydroxyurea and found as they upped the dose to 1000 I have sores in my mouth and using baking soda to cure them.I was told they may put me on a new drug at 35000 dollars a year .But I read the side effects and sounds alittle bad.Was wondering if Some people just have blood drops and do fine?

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