Calr type 1

[Johan2021]

Hi!

I am looking for calr type 1-buddies!

For how long have you had ET ? Are you on meds? For how long?

[mother2britton]

I’m calr type one diagnosed with low risk in 2019. I had a cardiac thrombotic event in May of 2022 thus putting me in the high risk category. I started on HU switching to Peg after a few months. I’m currently on 150mcg weekly but haven’t seen any results as of yet.

[Morris941]

Hi

My husband was diagnosed with ET - CALR in Jan this year following a bone marrow biopsy. He is 50 years old so classed as low risk at the moment so taking daily aspirin. However his fatigue is unreal and so he will be making contact with his consultant as he doesn’t know what his options are in terms of medication. The only thing he has been told previously is that he will be monitored every three months and will go on medication when he turns 60 as he then becomes high risk due to age ☹️

[dbus1417]

CALR type 1 here. 39 yo male going on 2 years diagnosed but likely had it for a bit before that.

Found out through routine blood work. Everything in normal range except platelets of 600. Since diagnosis all bloods are good except platelets have doubled to 1.2M. Hematologist started me on HU a week ago. So far I am tolerating it well but it’s very new.

Going for follow up on the 5th to see how/if the HU is working. Goal is to get on interferon as soon as platelets come back down to earth. Hopefully one of the novel CALR therapies has success and we can just jump right to a cure. 😄

Feeling fine, exercising, eating right and trying to make my ET take a back seat to my life. 🤙🏽

[Ayla13]

Calr 1 diagnosed in 2020 . ( but had high platelets since 2015 ) Female , 65 years old soon. Taking Hu due to my age .( over 60 ) M- F 1000 mg , 500 mg on weekends . Here in Toronto there is no other option for Et . They reserve interferons for Mf patients . But there’s talk that it will soon change. Tolerating Hu ok. Continue to have groin and shin pain and hot feet and some dizziness . Do all activities as always . Walk daily 4 km . Good luck on your journey .

[Whitehair51]

I was diagnosed June 2020 and have been taking hydroxyurea, mostly 500 mg per day, recently added two doses per week as my platelets were closing in on 600,000. I also take low dose aspirin daily. I'm72 years old, in good health and don't have many symptoms other than some fatigue and hot flashes. The hydroxyurea has caused some hair loss.