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What are most common side effects when starting HU (Hydroxyurea)?
Blood Cancers & Disorders | Last Active: Apr 30 3:41pm | Replies (164)Comment receiving replies
"Shocking" is the perfect word for an MPN diagnosis.
And nobody wants to take a chemo medicine every day.
Unfortunately, our bone marrow doesn't care how shocked or reluctant we are. It just keeps churning out too many blood cells, pushing itself towards depletion.
Before HU began to rein in my ET, I woke up with a blinding headache that lasted all day. I was exhausted all the time. I had to pause just walking up a flight of stairs.
For me, HU has really been helpful. From hating those capsules, I'm now grateful for them.
This is not to ignore the problem the dye in the capsules may pose.
Please ask your oncologist for her or his suggestion. HU is in wide use, for sickle cell anemia and some types of mouth cancers as well as for MPNs. With so many people using it, I have to hope it can be dispensed in a form other than the pink and green capsules.
Would you please share what you learn, so others with the dye allergy can benefit?
To me, the pharmacist's "advice" to open up the capsules and mix the HU into applesauce borders on malpractice! NO, NO, NO.
I am so sorry for your diagnosis, gigi05.
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@janemc
Thank you so much for your caring response. It felt so good to read your last statement, 'I'm so sorry for your diagnosis" I'm going to remember that and remember to tell other newly diagnosed folks that. You see, I have not really heard that from people close to me. In fact, they have told me straight up to my face, things like, you don't have a diagnosis, or disease, you (just) have a condition. It's sort of like, what's the big deal, stop talking about it, or stop worrying about it, etc. I understand some people just don't have the emotional skills or empathy, but sometimes you just hope to hear it from those closest to you. So, thank you!
Now about the dyes, I mentioned it in another post just now. But perhaps others are like me, sometimes i cannot find the other posts again.
I spoke with a compounding pharmacist connection, and she told me that she cannot compound it for me and leave all the unnecessary toxins out because HU is so toxic and would need to create a special setup. she told me that there is a white tablet available, and that the dyes are the just in the capsules not in the white tablet. Dont know yet whether the doc needs to write the script a certain way, or what, and also I don't know yet what that means for the titanium dioxide, grrr, but will post again once I know more.
My platelets are still just hovering around 500. Had a headache yesterday, but remembered to really up my water intake, and take B vitamins and that seemed to help.
Hope this helps you a bit.
Hugs---