ET worry

[PHGR]

My mum's PLTs are a bit under 1000s while six months ago they were within normal range lowest ever since she got in the ET journey. Her hematocrit is also around 33..she has an appointment in 2 days with her doctor. Anyone faced these levels while everything seemed to be normal again.? Her doctor reduced the hydroxurea dosage because it affected her white cell count. We are deeply concerned over this change. Thank you for your time

[EPguy]

Do you mean the PLT is 1000 and HCT is 33 now while PLT was normal six months ago?

[hunter5582]

It sounds like your mother is refractory to hydroxyurea. Her dose had to be reduced due to the leukopenia and even at this dose she is anemic (apparent hemolytic anemia). With platelet levels in the 1000s, she is at higher risk for hemorrhage as well as for thrombosis.

It is worth noting that getting PLT < 600 is the target used by some MPN Specialists; however, that would still take a higher dose of HU than it appears she can tolerate. This is definitely time for a consult with a MPN Specialist rather than a regular hematologist. There are other treament options that may work better but she needs MPN-expert advice. Here is a list just in case you have not seen it. mpnforum.com/tsr-the-list/

[PHGR in reply to hunter5582]

There's not an MPN specialist in my country as I went through the list and found no one.. Are there medicines that don't bring the white blood count down? Thank you for your always helpful replies

[PHGR in reply to hunter5582]

We went to the doctor today and he increased her dosage to 2 pills of HU daily Monday to Friday and one daily over the weekend. She will be tested again in 21 days to see where she stands...

[hunter5582 in reply to PHGR]

She will need to keep a close eye on her level of anemia. Anemia can have significant adverse effects. It is also important to pay attention to the leukopenia. Note that with mild leukopenia the body can still respond to infections. It is important to have targets for the WBCs to ensure your body is able to respond adequately. I also experience mild lymphopenia and borderline neutropenia due to the Besremi. The targets we have set are LYMPH > 0.50 and NEUT > 1.00.

Wishing you and your mother all the best.

[hunter5582]

Anagrelide is another option for treating ET. It typically has little to no affect on WBCs; however, there is a risk of heart issues, which is why it is a second-line treatment option. PEGylated interferons are another treatment option but can also affect WBCs. Not sure what country you are in but if there are no docs on the list, suggest checking with a large hospital/university research center where you live.

All the best.