Long term medication Hydroxyurea

@janemc
I agree. I was 65 at diagnosis and 76 now. So really hard to tell what is diease and what is old age wear and tear. I do think the HU may have contributed to early wear and tear on my hip sockets... had both hips replaced with in 4 years and back surgery in between. No one else in my family has had to have either. And I don't have Osteoporosis but I have osteopenia, which is not quite as bad as osteoporosis. Never have broken a bone. So, hard to tell. But I am grateful for each day and I like to keep up with what is happening and what may be on the horizon. I am grateful that I had a really good hematologist to diagnose me in the middle of VENEZUELA no less, as we lived there as missionaries. Sent my husband to the big city to get Hydrea so I could start it the very next day after diagnosis while he did abdominal sonograms, etc to see the condition of my spleen and other organs.
Amazing! We could not continue there as things are pretty bad as to getting medicine and tests, etc.. But I was able, with my husband's help, to take care of my mom for 5 years until she passed away at 90. I am doing relatively well, for the Thrombocythemia DX and a lifetime of lung problems. On a daily note, my feet right now are my biggest problem. Numb, pain, difficult to find shoes that work. I think I will keep the appointment with the orthopedic doctor that specializes in feet and ankles. Don't know that he can help me but I've already tried two podiatrists without satisfaction. I can at least say I tried everything. May be something I am just going to have to learn to live with. Hard when you have been a very active person. Does keep me from walking longer distances and losing some weight. But grateful I do have feet and can walk enough to get around and take care of us.
Thanks all for your words of encouragement and support.

Those on HU for long term treating ET and taking many pills a week, are your white blood cells and red blood cells staying in range or do they go down also. If so what does your doctor do about it.

@esperanzam

Any chance there's a Y where you could splash around in the pool?

That's such a fun way to exercise.

@dharte47

On a high dose of HU for 3 years, my red blood count sometimes dips slightly below normal, but not enough to cause concern.

My white blood count has been fine so far.

HU's not platelet-specific. It suppresses production of all blood cells. So, our bloodwork may show some ups and downs. This is why we have frequent blood draws, to allow our doctors to take the best possible care of us.

By the way, sometimes your blood volume (BVA) may be high. This is caused by 1) having too many platelets and 2) having oversized, misshapen platelets -- these are the hallmarks of ET.

I always scrutinize my blood work results, and compare them to previous draws. And should I ever be worried about anything, I will ask my doctor!

Diagnosed in 2015 at 35yrs old. Been doing HU 500mg twice a day for about 4 years, maybe more now...
The last two years my fatigue has increased greatly, and neuropathy in feet is increasingly....annoying last 8+months.
My counts are sort of "stable" now with a clinical study at Mayo Rochester (DISC-3405). (still on HU also).
Hope to find a way out of the fatigue, cause at age 47 next month, I'd like to believe I can have some "active" and "healthy" feeling years ahead still. (Plus I still gotta work!)

@janemc
Might look into that. I stay pretty busy but if there's not too many restrictions, they do have a pool at one of the Senior Centers. Just have to sign up and be there at a certain time. I've halfway looked into it.

Good idea though. Thanks

@dharte47
They do go down as well. at least mine have. So far, the main concern has been the red cells, and hemoglobin which has left me with anemia. I try to eat healthy and stay on top pf any infection. So far, I have not noticed a big problem with my lower than normal white cells, although I do keep an eye on all of my labs and ask the doctor to explain if I don't understand. The Anagrelida, as I understand it only targets the Platelets which would be nice if the side effects seem worse than what I have had for all these years and my Insurance company had a problem with it. The trade off in side effects between the Hydroxyurea and the Anagrelide were not worth it to me. I think there is more possibility of bleeding, and other side effects I have not had much problem with with the HU. So, I just keep an eye on my numbers and hope it keeps working like it has been all these years. Maybe someday they will fins something better.
For my low energy and anemia, my oncologist put me on heavy iron tablets every other day. I am also eating something I call my POWER muffins, which are loaded with iron rich ingredients such as Quinoa, and Chia seeds, as well as nuts, and other seeds and pinenuts, almonds, walnuts, flax seed, (which helps with the constipation extra iron can bring) etc. I mad up this recipe and I eat 3-4 mini muffins a day. Anyone interested I'd be glad to share the recipe. Not cheap to make but very nutricious and have helped increase my hemoglobin and helped boost my energy.

Thank you for your message. Very helpful. I would love that recipe. So glad to hear you are solving the issues as best you can.
I don't know if you want to post it here or PM me.
Thank you,