Hi Everyone, I’ve not posted in a while
I was diagnosed with Essential thrombocythemia (ET) in January 2023 with a positive mpl gene.
I’ve been on Oyxcarbamine, dose now is 3 x daily.
My platelets were going down albeit slowly.
At my last appt they had increased by 30 now at 665. My Oyxcarbamine wwas increased but I’m getting anxious that at myt next appt this week they will have increased further.
Has anyone been on this position?
I feel like my symptoms have worsened too?
I would appreciate if anyone could help.
Hi Everyone, I’ve not posted in a while
Oh, @May14 great to hear from you again, but I am so sorry that you are feeling so anxious.
Firstly, perhaps part of your feelings of anxiety are that you have tests, results and appointment coming up, I know I still feel like that 19 yrs down the line.
Secondly, that at your last appointment that your results had increased and your medication increased.
Thirdly, that you feel your symptoms have worsened too.
That’s a lot of compounded anxiety, if I may say so.
However what you can do is to perhaps write all your symptoms down, their severity and the impact on your life.
You might also like to write down all the questions you have going round in your head.
Others might be able to share their experiences with you.
I am glad your appointment is this week.
Really look after yourself and do nice diverting things and be very kind to yourself and please do let us know how you get on and thanks for looking for help and posting
Sorry to read you are feeling anxious about your upcoming appointment.
I don’t think you are alone in feeling this way.
Appointments often make people worry, especially when, like yourself, the blood counts don’t seem to be improving despite being on treatment.
It’s really important to let the Doctor/CNS know that you’re anxious, as they can reassure you with information about your counts, or possibly other treatment options if your counts aren’t coming down or improving. There will be times when your platelets are up, this can be due to infections, other medications, or other reasons, but your Doctor will be able to discuss a realistic ‘normal range’ for you, so you don’t need to be so worried. There may also be times when you platelets drop quite significantly, again, try not to worry. Over the months and years of living with Essential thrombocythemia (ET), you’ll start to know your own body and feel yourself when your counts may be up or down.
Please do report any new or worsening symptoms, it’s really important to be honest with the Doctor/CNS, they can then best advise you - it could be the higher dose of medication, which would need to be considered with balancing your platelet counts.
If it would help to talk any of this through, before your appointment, please do call our Support Line 0808 2080 888.
Take care, Heidi.
I will let you know how I get on
Hello @May14, I’m so sorry to read about your diagnosis of Essential thrombocythemia (ET) and having understandable anxiety since diagnosis. Like you, this caused me great anxiety. I meant to reply sooner but keep losing my place in the forum! How did your appointment go after all, how are your platelet numbers looking now? Hopefully your anxiety has reduced, but if not I can share some stress-reducing tips if you’d like, just ask.
I’ve got a similar but different Myeloproliferative neoplasms (MPN) to yours, Polycythaemia vera (PV). You know, my platelets and red blood cell numbers have gone up and down a bit too in the few months since my diagnosis. Anecdotally, my platelets dropped noticeably when I changed my iron intake (my latest multivitamin has no iron but I don’t avoid iron-rich foods). Perhaps check with your doctor about your iron intake.
Wanted to share that our treatments can work. My haematocrit level came down to my goal in just 3 months with daily aspirin, daily hydroxyurea, and fortnightly bloodletting. Because my haematocrit level has dropped into the normal range and stayed there it means I won’t need phlebotomy every fortnight anymore. I’ll miss seeing the nurses so often!
I get the impression from other survivors here that our medicines and physical responses to them ebb and flow a bit, depending on so many factors like our overall health, especially stress, how strong our fatigue is, other life stuff. Personally, dehydration and stress seem to affect my energy most so I try to drink lots of water all day and carry a water bottle around to remind me. Oh and try to live as stress free as possible, easier said than done!
Thinking of you @May14, hope all is well.