Thanks much appreciated 

Hello bobmac1211!

I am on that journey too! I began taking Hydroxycarbamide on New Years Day! Having delayed for 3 months to accommodate life things that needed to be done first! I was diagnosed with the JAK2 genetic mutation in Sept/Oct. I wanted to delay taking Hydroxycarbamide but the platelet numbers kept increasing, so realised I had to say yes. 

How long have you had ET?  

All the best, mariart. 

Hi Mariart

I was first diagnosed in April 2020 with the JAK2 mutation confirmed the same month. My platelet count is now down to 400 and I take 500mg of Hydroxycarbamide Mon to Thursday and 2 x 500mg Fri sat and sun. Generally I've been able to cope with the side effects which have mainly been tiredness and joint pain in my fingers and knees. As you have to be careful with Hydroxycarbamide and not share bodily fluids ie. saliva and semen, it can cause problems with relationships with your partner. Again, generally I have been able to cope with this but feel my partner is struggling. I hope that you are able to take Hydroxycarbamide and not have too many side effects but it certainly brings the platelets down and of course removes the blood clotting worry.

Best regards bobmac1211

Some tricky things there bobmac1211. But cancers have a habit of raising such problems. 

Am glad your platelet levels are now at the upper edge of normal. Mine were 800 in November, and were moving from 720 to 800 over 5 months, so will be interested to see what happens when I have the next blood test and consultation in March after 2 months HC.

I am particularly hoping not to have joint pains in fingers as I do detailed botanical painting, and keen not to have mouth ulcers as I sing, and teach singing! Beggars can't be choosers, but putting my faith in water! 

Do have a good talk with someone about sex and HC. I suspect the nurses will be very helpful if you have a Cancer specialist nurse (CSN). Maybe you and your partner together could have encouragement to work through possibilities. 

I am mid 70s and husband 10 yers older. He has had prostate cancer and I had uterine cancer. I asked the surgeon about such things prior to surgery, but young key hole surgeons have precision in mind, and he wasn't for thinking outside of the box. I rather find my young Haematologist similarly single minded, so have been grateful for nurse input and empathy. 
I supect you are much younger.. And this is a lifetime treatment, not short term. Do get help and support. I think partners need as much support as those with cancers. 

Good luck!

Thank you Mariart for your reply. 

HC brings the platelets down quite quickly and your haematologist may increase your doseage if they plateau out. I play golf which of course involves holding a golf club and walking, although it took me sometime to be able to walk 18holes I found the exercise very helpful. I have had some small mouth ulcers from time to time but an over the counter medicine has done the job.

I'm 69 and my wife is 68 and over the years have had a happy sex life but to be honest I could not do anything sexual for the rest of 2020 and resumed in early 2021. I won't go into details but it has been difficult to get the satisfaction that we both want. I have talked to my GP but it's embarrassing to discuss. We have been advised to incorporate the condom into foreplay but alas not successful for us. The subject has never been brought up with my haematology consultant but I will discuss it on my next visit also sometime in March.

Thank you for your understanding and empathy it really is helpful to chat with someone else with ET.

We're quite rare I believe something like 3 in 100000 people are diagnosed each year. My haematologist said if I was standing in the crowd at Twickenham and someone hit a golf ball out of the centre of the pitch it would most likely hit me. Amazing!! Thanks again for your reply and good luck

Kind regards 

Bobmac1211