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Question to Lizziep


I believe you mentioned awhile back your Hu intake was 500mg 2x for 5 days, & 1500mg for 3 days, total 16 caps total mg 8,000, and your count was dropping below the 400 range. Can you let us know if you are still on this 16 caps weekly, and has your doctor decided to keep you on this regime, or change it in the near future, should there be changes in your wbc & rbc. mainly the observation of the wbc count?

As for the issue of thinning hair, yea, been there, still there

How long have you been on the Hu for your ET?

Hope you are doing well. Hope to hear from you.

Have a nice day.


3 Replies

Hi Adail,

I am still on the same dosage.

I went to the hospital on Wednesday and my platelet count was 295, up from 255 last time. The haemoglobin was back in normal levels, (just) it was low last time. The only other levels which weren't "normal" were:

RBC a bit low 3.30 (should be a minimum of 3.85)

MCV which was high (113.2 shouldn't be higher than 100.0)

MCH was 37 (shouldn't be higher than 32.5.)

WBC was 5.0 (the range is 3.7 to 10.0)

I take a photo of the print out they give me to take to the pharmacy so I have record of the results of the blood tests.

I also told them about my hair loss and they said if it is still coming out next time I go, in 12 weeks time, they will consider changing the HU to something else - didn't say what though

I do often get quite forgetful and lack concentration but they said that was nothing to do with the drug - which is a worry! Although I have heard other people say they have "chemo brain".

Hope you are well.


PS Merry Christmas



I' absolutely sure chemo brain is associated with HU - I too have noticed a lack of concentration and hopeless memory!!




Thanks! I've never had a fantastic memory but I'm definitely a lot worse than I used to be! As for concentration....... now what was I doing........!



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