Hydroxyurea causing mild anemia

The ET road is different for all of us. I sense you feel frustrated with your doctor. Is getting a second opinion possible? Having an oncologist you really trust is the key to finding the care that's optimal for you.

It would be wonderful if we had a medication that only lowered platelet production. Instead, we have HU, which over time can also reduce our white and red blood cell counts. It's not uncommon to see these effects over time.

A good oncologist monitors and balances these changes.

It's great you've never had any symptoms of ET. Who knows? You may be an exception! Generally, though, ET's risk factors must be taken seriously.

Platelet-heavy blood means greater vulnerability to blood clots. And platelet overproduction stresses our bone marrow. So I'm grateful for HU, imperfect as it may be.

Hope you will find the way forward that's best for you, MJ!

I’ve been on HU for 3 yrs with ET. My platelets fluctuate and my doc makes minor adjustments every few months to the dosage.
I’m scheduled for knee replacement surgery and my leg pain could have contributed to a higher recent count so I’m taking 1 additional pill.
Anything you’re experiencing will affect every system in your body.

Pls make sure your doc knows EVERYTHING going on with your entire body - not just their specialty.
Also, tell your doc every prescription, vitamin / dosage you’re taking, and changes to your diet.
Good luck.

I second the suggestion for a second opinion. Depending on age, type of mutation, and other factors, you may not need more meds every time you spike into the 400s. I am 72, no clot history, have CALR mutation, and my doc is happy with my being in the 400s, even with a spike into 500s once in a blue moon. I've been on HU x 8 years, with just one adjustment to current dose after the first year when platelets "stalled" in 600s.

If your RBC is low, your hemo should give you advice on treating it. If your current doc isn't offering this, that's another reason for a second opinion.

Thanks...I think my hemo doctor feels the higher dose caused the mild anemia and dropping one HU pill should correct the issue.
Was wondering if your other blood lines, RBC,WBC,HGB & HCT adjust over time to the HU increase.
It's a bit of a dance keeping the platelets suppressed and the other blood lines staying in the normal range. RBC & WBC have been low for 9 years on HU...BUT first time HGB & HCT went a little low out of the normal range.
My dr. wants it below 400. It was at 286 a week ago after she doubled the HU to 1000mg M-F and 500mg on Weekends. Now she's dropped it to 1000mg M-Th. And 500 MG F,Sat,Sun
Every time it creeps up to 400k we add a pill.
Started out 1 HU 500mg a day.
So in almost 9 years it's creeped back up to low 400K 5x.
Been doing this for almost 9 years...never had an issue with anemia.

@mjfp49 good morning , I've been on HU for 10 months now! I'm treated at Baptist Cancer Center in Memphis TN. My Hematologist/oncologist has me on HU 1,000 every other day alternating 1,500 plus a baby aspirin every . I have to use a pill box to keep up with it. !!! He has noticed RBC going down as well as WBC. I go this Monday for a shot of Reblozyl every 3 weeks to get counts back up, I will be monitored carefully. Unfortunately he does not want to lower HU dose because it is at the level he feels it needs to be. don't know if this helps someone. In addition I just had a total hip replacement 2 weeks ago, doing well with that. He replaced the baby aspirin with Eliquis for 4 weeks 2.5 mg then back on baby aspirin.

Hi krag1949,

Thanks for sharing your experience. I wish you all the best.
I have found ET pretty easy to live with for 9 years now and I hope you will feel the same way.
How high were your platelets when you were diagnosed?
Mine had hung around in the middle 400k for nearly 2 years and then jumped to 700k...that's when I had to see a hemotologist.
I have the JAK2 gene mutation.
Never had an issue till now when the Dr. upped it by 2 pills and now dropped one pill.
I know the platelets want to push back and climb again but it usually takes over a year before it hits the 400k mark.
I am hoping my other blood lines will adjust and move back to the low normal range...but I also know the platelets will slowly climb too.
That's the dance we do.

I've been on same dose of HU x 7 years. Platelets are stable, but other bloods are dropping. None yet in below normal range, but that's been the trend.

I have beefs with the regional cancer clinic since my old hemo/oncologist retired. (It always seems to me that when a hospital builds a big new facility with "art" on the walls, the care goes to pot.) After the current kerfuffle with my heart valve is resolved, I will ask my GP to send me to a hematology specialist for a second opinion.

Medicine is big corporations now...not nearly as attentive as the family doctor.
Having said that...sounds like you're pretty stable.
HU effects all bloodlines...think if you're not anemic...they just let things be.
Good luck with valve.
Thanks for sharing.
MJ

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@nohrt4me
Hi thanks for sharing.
How high were your platelets when you were first diagnosed?
Mine were in the 700k range.
Yes, corporate medicine is a whole different ball game.
If you're stable for 7 years maybe your doctor will consider taking away 1 pill to keep you're other blood lines from getting too low.
Good luck with valve.
MJ

@mjfp49 Just on aspirin x 3 years, but when platelets started through 700s to touch 800, HU was introduced. One per day got them to 600s. They stalled there for a year, so an extra HU added M-W-F. They've stayed in 400s since then. I have asked about ditching one cap per week as other bloods have decreased, but I mostly see the nurse, and she says no. I am grateful to have been stable for these years.