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Effects Of Taking Hydroxyurea

A myMPNteam Member asked a question 💭
Santa Barbara, CA
September 7
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A myMPNteam Member

I also practice Qigong and Gung Fu as well. There is no question that there are clear benefits to this. It certainly promotes overall good health.

I am in complete agreement that at a certain age we can and should prioritize quality of life over length of life. This is a core principle of how I make treatment decisions. I inform all providers of this in the agenda I bring to every appointment. The agenda starts with my treatment goals.

Treatment goals:
1. Extend quality of life.
1. Protection of cognitive function is the single highest priority.
2. Protecting vision, hearing, other senses, and mobility/physical abilities second priority

2. Extend length of life (only when QOL intact)
1. Philosophically – better to get less treatment benefit and preserve QOL with any tx
2. My medical POAs have very specific instructions regarding my care and when to discontinue all treatment.

My reason for choosing Besremi have everything to do with quality of life. HU made my quality of life worse and was ineffective. Phlebotomies were effective at controlling erythrocytosis, but made my quality of life worse and caused reactive thrombocytosis. The interferons (Pegasys then Besremi) improved my quality of life and were more effective. Specifically, I am maintaining a hematologic response and have reduced my JAK2 VAF from 38% to 10%. I feel better now than I did 10 years ago.

We are all different in how we respond to MPN treatment options. We need an individualized treatment plan that considers our treatment goals and risk tolerance. One size does not fit all and HU is not the best choice for everyone. Neither are the interferons. We each have to evaluate our options and make the best choice we can.

Wishing you all the best.

September 13
A myMPNteam Member

I decided to take the hydroxyurea. I began it yesterday. Let's see how my body deals with it.

September 11
A myMPNteam Member

Hydroxyurea gave me neuropathy. I don’t think platelets were an issue back then so I can’t say how much it helped with platelets. When I switched drs, I was told to stop.

September 10
A myMPNteam Member

Steve, thank you for your reply. I am considering just taking my chances without medication other than baby aspirin. I'm 79 years old. Because I practice tai chi and qigong daily (3 hrs/day), I've been able to stay free of fatigue. I am asymptomatic - no night sweats anymore. My doctor prescribed hydroxyurea, but I'm asking him if we can just hope for no stroke or heart attack, sans medication. Frankly, I would rather die early than live a life with miserable side effects. Of course, a stoke could be horrible, as well. How do you think about this, Steve?

September 7
A myMPNteam Member

We all respond differently to hydroxyurea and the other medications used to treat MPNs. While some can benefit from hydroxyurea and tolerate it, not all can. I am one of the latter. I was refractory to and intolerant of HU. It did not adequately deal with the erythrocytosis and I experienced intolerable adverse effects. I have done much better on the interferons, Pegasys then Besremi. The IFNs have been more effective and much easier to tolerate for me.

Since you are considering HU as a treatment option, there is information that is worth considering.
https://www.drugs.com/monograph/hydroxyurea.html
https://www.oralchemoedsheets.com/sheets/Hydrox...
https://ethrombo.blogspot.com/2017/10/taking-ch...
https://www.ncbi.nlm.nih.gov/books/NBK537209/#:....

Taking chemo? Use a condom
Taking chemo? Use a condom
https://www.drugs.com/monograph/hydroxyurea.html
Hydroxyurea Toxicity
Hydroxyurea Toxicity
September 7

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