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Hi Lori. Becky had her first blood test today, 2 weeks after starting the hydroxyurea. We were disheartened to see that her platelet count went from 625 to 629. Not a huge increase but we were hoping it would go in the other direction. If Becky was on the correct dose of hydroxy, would 2 weeks be enough time to see a drop?
She has another test in 2 weeks then a trip to the oncologist to discuss.
On another note that may or may not be connected, she has had a swollen left leg for at least the last couple of years and just had a total knee replacement a few months ago and still has the swollen leg. The docs, (not her oncologist) but her TKR surgeon are doing ultrasounds on the leg to eliminate the possibility of blood clots and she is scheduled for an MRI. Not sure if this could have any connection to the ET.
Anyway, that's a long story.
Thanks for listening.
Steve (for Becky)
Replies to "Hi Lori. Becky had her first blood test today, 2 weeks after starting the hydroxyurea. We..."
Hi Steve & Becky. I’m a little late in reply and see that @janemc said exactly what I would have, that it can take months to find the effective HU dose. We’re all unique. So while a particular medication may be the correct treatment for a condition, we may not all react with predictable outcomes to a specific dose. I found that out through my own pharmaceutical history with the bone marrow transplant and chatting with fellow BMT patients. We were all pretty much on the same meds but many of us different dosages or different periods of time. Most patients are off their immuno suppressants in 3-6 months. It took my new cells 2.5 years to decide they’d tolerate me! LOL. Now we all play well together. But it just shows ‘one size does not fit all’ in a manner of speaking.
So stay the course. Since ET is generally slow to progress, Becky’s frequent blood work will pick up any changes along the way. Her doctor will help regulate her dosages to find that sweet spot. And if it’s not HU, then there are other options.
It’s not a bad idea to have the ultrasound of Becky’s leg to rule out involvement of a blood clot. Edema can be caused by a problem with how blood travels through the body but there can be other reasons as well.
I’m guessing Becky is feeling a little deflated or defeated right now with the past few months of not being at 100% of her game. It hits us when we think our body has let us down after ticking along just fine for years. Distraction and diversion are keys for climbing out of a funk like that. I hope she can find some normalcy daily, fill her days with positive activities & events to let her know this is a momentary glitch in her life. When the newness of the diagnosis wears off, she’ll learn that nothing has radically changed. She’ll get used to the meds and realize she can enjoy a full and happy life not worrying about ‘what if’ or waiting for the other shoe to drop. Every day is a gift and shouldn’t be spent worrying. Worrying does not take away tomorrow’s troubles. It takes away today’s peace. ☺️
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It can take months to find the effective HU dose.
Adjusting the dose step by step requires some patience, but it's the best way to avoid side effects.
All good wishes to Becky!