ET Sufferer

[peter552]

My name is peter and have ET CALR and just learning all I can about this been diagnosed 6 months

[AndyT]

Hi Peter - welcome..! I'm ET CALR too - diagnosed 13 years ago and just started treatment with Pegasys last October. Lots of information here and on MPN Voice website - ET isn't as scary as it first seems, so long as you keep up with regular check ups etc...

[peter552 in reply to AndyT]

thanks so you went 13 years with no meds I am talking about meds with hemo at moment my platelet count is high but not symptoms just tired they want to put me on hydroxyurea I do not like the sound of this . I think being a inflammatory desease I want to try the best diet I can. My blood is thin with calr not thick like most ET people.

[AndyT in reply to peter552]

Hi Peter - main reason I stayed off treatment so long was count below 1000, age below 60 and no other risk factors. That changed when counts started to be over 1000 consistently and 60th birthday approaching..! Definitely worth discussing all options with your doctors... Good luck, Andy

[Hidden]

Hi Peter, I am from NZ. I have found treatment is slightly different here. I am 64 and have CALR postive. I am aspirin 100mg daily. I was diagnosed by blood tests which firstly found my platelets were moderately high 750. They did at one stage go ad high as 900 and as low as 635, which is just above normal, being 450. Then I was referred to a haematoligist which did further special blood test which picked up the CALR gene. I also had a bone marrow biopsy which sealed my fate!!! This is almost one year ago. I have no side effects from ET. Blood clots being the most dangerous that we can incounter, hopefully the aspirin will keep them away. Good luck with your research. Cheers Lyn

[peter552 in reply to Hidden]

thanks Lindiloo3 my platelets count is 1500 and my blood is thin so no aspirin which is weird as most people have thick blood with ET. I have a bit of tired but worry about the meds. Am thinking of trying an anti inflammatory immunity boosting diet .I lived in Greymouth NZ foe 3 years nice place. Thankx for reply

[Mazcd Partner MPNVoice]

Hello Peter, welcome to our forum. I would advise you to read as much as you can on our website mpnvoice.org.uk, I can also send you some of our booklets on ET and for the medication you are taking, if you would like some then please email me at [e-mail] with your postal address and details of your medication. You will find that there are lots of very supportive people on this forum, so please do ask any questions that you have, we will all do our best to answer them for you. Best wishes, Maz

[peter552 in reply to Mazcd]

I am not on any meds at moment but talking to my hemo my platelets count is 1500 and my blood is thin so no aspirin . Bit tired at times but worry about the medication hydroxyurea they want to put me on. I am in Australia and am finding lots to read online .I would not ask you to mail so far away.

Thanks for help.

[Mazcd Partner MPNVoice in reply to peter552]

Hi Peter, I can understand that you are worried about taking Hydroxyurea, many of us felt the same when told we had to take it, myself included, I have ET. It is a difficult decision to make, to take the medication or not, and it is one that you will have to make after discussing the pros and cons with your hematologist. I personally feel much better, it has helped with my symptoms which were at times horrendous, and has given me back my life. And don't worry about posting information to Australia, we have a few people registered with us living over there and I post information to them, if you want information we will send it. Best wishes, Maz

[lizzziep]

Hi Peter! I have ET, diagnosed 5 or so years ago. I was very scared at first, thought I probably only had days to live - especially after Googling the condition and treatment 😳😳. However I have found this site very reassuring and have got more information from here than from the hospital.

I started off on aspirin but when I got to 60, three years ago, the counts jumped over 1000 so I was put on Hydroxycarbamide. My dosage has changed slightly as have my counts, they were stable for a while but started to climb again so currently I'm on 17 capsules per week plus the aspirin, which has brought them down a bit again.

I can't say the ET impacts my life that much, I have far more trouble from my arthritis! I get tired sometimes, get itchy too sometimes. I also get pain from my spleen, but we could have something a heck of a lot worse!!

If you have any questions, even if they might sound a bit daft to you please ask - someone on here will have the answer 😄

There are people on here who have had ET for donkeys years and are still going strong!

Best wishes

Lizzie

[peter552 in reply to lizzziep]

Thanks for your repy I have to consider the medication hydroxyurea which worries me will read the content here thanks

[lizzziep in reply to peter552]

I was terrified of taking hu but 3 years down the line I still don't glow in the dark!! It's better than a stroke. If you do go on it you'll be monitored regularly and dosage adjusted accordingly. It's a lot to take in at first, when I read the leaflet that came with it I panicked and thought I would develop all the side effects, however there is more chance of winning the lottery.

Best wishes

Lizzie

[funnyfeet]

Hi Peter and welcome,

I too have ET and was also diagnosed about six months ago. You will find lots of information and get lots of help from the lovely people on this site.

Karen.

[ourlife]

Hi Peter,

Welcome, I had ET for 16 years the first 10 yrs spent in denial my only real problem was and is me ! (and the fatigue ) I have progressed to PV and have found this site to be so valuable. Don't be afraid to ask any questions here.

Good luck,

Ourlife

[peter552 in reply to ourlife]

so first 10 yrs spent in denial did you not take any meds I feel like this now I worry about the medication hydroxyurea they want to put me on thanks for reply

[ourlife in reply to peter552]

Yes I was on HU from day 1 wish this site was around back then

[tclementi]

Hi Peter! welcome and i agree with all the other comments! Also a great resource (and partner with MPN voice) is Patient Power. Check out their MPN and ET videos here- patientpower.info/myeloprol...

[Kerri2]

Hi Peter, welcome. ET jak2 positive diagnosed 7 mos ago. On HU as well X once they get your counts down the will try to lower your dosage, currently only taking 500 mg and aspirin. It does sound frightening but a stroke is not something I want to ever experience again, TIA 3 yrs ago. Keep the faith it will get easier.

[peter552 in reply to Kerri2]

Thank you i have platelet count 1500 and my blood is thin so prone to bleeding calr positive no meds yet worry about the meds talk to my hero in 2 days had another blood test today

[Kerri2]

Dropped from 1300 to 220 in about 3 mos so now only on half original dosage. When abouts 1500 you can actually have uncontrolled bleeding because the platelets don't function properly.