Hi, I am writing this on behalf of my husband who has Essential Thrombocythemia. He was diagnosed with ET in 2011. His type is CALR mutation.
He was on Hydroxruea for long time, but recently he changed to a new doctor about 6 months ago, and the new doctor suggests him to take only baby Aspirin every other day. His platelet count had been stable around 380 when he was on Hydroxurea.
Once changed the medication to Aspirin (he started taking Aspirin once a day), his platelet count increased and the recent count is 1,118 with few Large Platelets.
His doctor said it is not a problem, and told my husband to further reduce Aspirin to every other day instead of everyday although the platelet count seems keep increasing, and his next appointment is 4 months later. His doctor is also reducing the frequency of regular appointments too. The last appointment time was 3 months later between February to June, then this time is 4 months later from June to October. Between February appointment to June appointment, the platelet count increased from 780 to 1,100 with a baby aspirin a day.
I was wondering if anyone has been under the same treatment with taking Aspirin less often while having high platelet counts.
His blood test last time even shows “Few Large Platelets”, which was not shown previous test result either. I am a little bit nervous whether or not this treatment is fine. I know that the CALR mutation has less risk of blood clots than JAK2 mutation, yet I am not sure how much is the safe measure of the platelet count for CALR mutation.
Would it also be safe if Large Platelets number increases with the whole increase of the platelet count? Would the platelet count be stable after taking less Aspirin when the count is over 1,100?
Hi @Tomie, welcome to our forum and thank you for posting. May I ask how you and your husband are doing? Changes in medication routines and blood counts can be anxiety-provoking, and your questions and concerns around this are very understandable. May I ask if you’ve been able to share your worries with your husband’s team, perhaps with his Clinical Nurse Specialist? If you have on-going concerns, it’d be worth sharing them, so that the team are able to support you both and put results in context with your husband’s individual circumstances. In case it’s helpful at all, we do have information about essential thrombocythaemia on our website, which includes symptoms to look out for.
We do also have a Nurse Advisor thread about blood counts on here, and I’ll tag my Nurse Advisor colleagues @GemmaBloodCancerUK and @LauranBloodCancerUK in case they have any more to add. Please do also keep in mind that we have a support line, and you’d be very welcome to give us a call if it’d help to talk things through, on 0808 2080 888.
Best wishes, Tanya.
Hi @Tomie I am really glad that you have found us, welcome.
I cannot really add to @TanyaBloodCancerUK’s response to you but we are all very unique special beings and lots of things are taken into account by our medical teams when considering the way forward.
However we are also human and on an emotional rollercoaster as patients, spouses, family, friends and carers and that makes us scared, fearful etc etc.
If something is concerning your husband it is worth him checking it out as @TanyaBloodCancerUK says.
Please keep posting you are now part of our forum and as @TanyaBloodCancerUK says if you would like to talk to someone the Blood Cancer UK support line is there for you as well.
Be kind to yourselves
A huge welcome to the forum. Thank you so much for sharing this with us all. I do hope your husband is keeping okay?
It’s understandable why you would feel concerned that your husband’s platelet level is increasing & continuing to do so after his Hydroxyurea has been stopped.
After a change in drug it is often normal for a period of monitoring over a number of months to be carried out in order to confirm what step is needed next, if any.
I think it may be important for your husband to contact his consultant and ask these questions directly. This may also be helpful to direct these at his nurse specialist, if indeed he has been assigned one?
You do not need to wait to be invited for another appointment and can contact the haematology team directly to have your questions addressed and ultimately give you some reassurance.
It is often helpful to have this conversation so you can understand the parameters of what your husbands team are working towards and when concern is needed.
Please do also know that if you feel it may help our support line is open 7 days a week on 0808 2080 888.
Take Care, Lauran