Not really apart from getting mouth ulcers but not till I'd been taking it for a couple of years - I can go months with none then have a cluster- funnily enough ive just had my worst cluster ever for 7 weeks but thank goodness they've gone now - I don't really worry about Corona so not caused by stress - i could change to interferon but I'm doing so well on chemo I'd rather stick with it for now - I think I get tired quicker but hey that could be my age lol 

Good to know. Thank you for your help, Jenni - will hopefully speak again once I'm into my treatment xxx

Yes do and I'm keeping everything crossed for you

Hi - just read your post. I am 67, and at exactly the same stage as you..:..

As per my previous post, I was diagnosed with ET (CALR gene, platelet count then 1100) in May. It was a shock, but from the start my haematologist was very reassuring about the condition. Hydroxycarbamide is a very mild form of chemo, well tried and tested (since 1965!) and very well tolerated by almost all patients. 
Like you, I had a very jittery heart prior to starting my treatment. Both my consultant and my GP said this was unlikely to be connected to my ET, but since starting on the chemo tablets, my "jitters" have completely stopped - a big relief since I had had a TIA in January (which was how the ET was discovered) and I was worried I had atrial fibrillation on top of everything else!
I do get the occasional headache and have the occasional "off" day, but generally speaking I have felt much better since my treatment began. I am sure it will be the same for you once your body gets used to the drug and the dose has been adjusted and balanced.

Within 5 weeks of starting the hydroxycarbamide, my platelet count had dropped to 650. Next week I have my first consultation with the haematologist since starting treatment and am hoping the progress has continued.

As you say, the big thing is "getting your head round it". It's bound to take you a little time, as it has me. But remember,

ET was only reclassified as a blood cancer 3 years ago - my consultant and his team still don't consider it to be one.

Once your daily dose of hydroxycarbamide is balanced, your prognosis should be very good and, as my consultant and others on this forum have said, you should be able to forget you have the condition and get on with enjoying life. After all, everyone gets diagnosed with something at some point - and our diagnosis could have been a lot worse!

I have everything crossed for you. Do keep in touch and let me know how you get on.

Hi I was diagnosed with ET CAL mutated with a count of 1000 when I was 27yrs old.I had no symptoms but trying for a second child my blood test showed up high and I was referred to a consult and after a bone marrow biopsy was discovered I had ET.I have been on hydrocarbonmide and aspirin with 3 monthly check ups at the hospital and over the phone during COVID-19 I have had no symptoms or illness at all.Well this may surprise you but I'm here to chat/support anyone who would like to after 30 years  living with ET I'm 57yrs old and female 

Hi Carol lovely to have you on board - I've had ET for about 7years- I have the Jak2 mutation in my bone marrow -  I have been on hydroxycarbomide up to very recently but I had so many mouth ulcers this year (previously ok) that I'm now on Interferon injections - my platelets have  rocketed to just under 1000 again  -  with chemo had been kept down to 350 ish - its still early days and the dose has been increased 3 times but so far I'm tolerating the side effects and hope I can continue to as still better option than a mouthful of ulcers all the time -  is there anyone else on here on interferon? And if so do you suffer any side effects?  Its also nice to hear from someone who has had it 30yrs and it's not affected your life too much - at 68 I'm keeping as well and fit as possible and so far I'm living a pretty much normal life

Morning Carol,

This is an old thread I am responding to, as I was diagnosed with ET Calr last year. Was confirmed during blood test night before I was due Meningioma brain tumour removal via craniatomy.

Platelets were 1100, to high for safe procedure.

I was discharged. 

Its a long story, but in the short: was placed on hydroxycarbamide to get levels down to achieve safe Surgery. Which happened in August 2021. Tumour size of satsuma.2

Stopped hydroxycarbamide after surgery and monitored via haematology team. Continued Aspirin though.

Platelets from August to February 2022 rose to 1665, so was placed back onto hydroxycarbamide in March 2022.

Last blood count all good, Platelets 377.

Altetnating between 3 tablets and next day 2, and so on.

Calr ET was also confirmed after BMB, and a spleen scan.

My reason for replying is just anxiety, I read ET should not shorten your life. But its such a worry, I am a 45 year old male. To read your post has raised my spirits, as you were younger on being diagnosed. To be 30 years on as well as taking Hydroxycarbamide is a positive story.

I have been referred to hospital, to meet the MPN specialist their. Who will direct/assist my haematologist for my long term management. But again this referral out the blue worried me.Have you been referred to MPN specialist?

I have good days and bad days, regarding the worrying of this condition. I just want reassurance that I will live a long and normal life. See my kids 10 and 12 grow up and move on to start there family. Having the brain tumour was a big worry, but since it has been successfully removed. The worry is now my ET which cannot be taken away.

Physically I feel fine, mentally has been a challenge this last year. I have become such a hypochondriac as well, any aches and pains are now worse case scenario.

Sorry to go on, but was again reassuring to read.

Thanks

Mark

Hi Smudger - I was diagnosed with ET about 8 years ago and like you on chemo for life as I have JAK2 mutation - I started on a similar dose to you but it's been reduced as my platelets became stable- apart from one hiccup where I changed over to interferon injections (side effects not good for me) I have remained well and active - I'm now approaching 70 but still part of a walking group and love gardening etc - if your ET is managed well which it seems to be with a low platelet count you should live a normal active life - it was a shock for me too as it was picked up after bowel surgery for bowel cancer but now it's just part of me and I don't give it a second thought - hope this helps reassure you 

Jenni

Thanks Desmum for your response.

It seems most people have Jak2, im trying to learn more about the Calr variation which I have.

I am hoping that my hydroxycarbamide will be reduced as my platelet levels are under 400 now. Perhaps Guy's hospital will look into this?

My concern is side effects of hydroxycarbamide in the long term, that's why I was so pleased to read Carol's post. As she has been possibly on these for 30 years.

I've googled to much and read negative reports on Calr, and also long term hydroxycarbamide use.

Again thanks for your response, extremely positive.

Enjoy your today, weather looking nice.

Kind regards 

Mark