Is ET jak2, curable on hydroxycarbamide. New to the form looking for info
A great big welcome to our forum @MissDaisy and a good question that I cannot answer, but I will copy your post to the Blood Cancer UK nurse advisors @GemmaBloodCancerUK @LauranBloodCancerUK and @Heidi_BloodCancerUK.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
I look forward to hearing more about you, there is obviously a reason for your question.
Look after yourself and take care
Hi @MissDaisy, thank you for posting and welcome to the forum. May I ask how you’re doing since your diagnosis? We do have a support line, and if you’d find it helpful to talk things over, you’d be very welcome to give us a call (0808 2080 888). In case it’s helpful, we also have information about ET on our website- Essential Thrombocythaemia. We also have a booklet about MPNs (myeloproliferative neoplasms), which ET falls under- Myeloproliferative neoplasms (MPN) booklet | Blood Cancer UK Shop.
May I ask whether you’ve approached your haematology team to talk things through at all? The decision to start treatment is a very personal one, and your team will be able to talk you through this in more detail with your individual circumstances in mind. They should be able to support you through this and of course please don’t hesitate to reach out to us if there’s anything we can do to support you at all.
Hello Miss Daisy - I have ET diagnosed some 16/17 years ago - no Hydroxy has no ability to cure ET or any of the MPNs- it’s a cytoreductive treatment that works on reducing the amount of platelet counts in ET and many patients take it for many years successfully. It is a form of chemotherapy and the most widely used treatment for ET in the UK. Another treatment is Pegasys interferon, working from an immunotherapy basis, again to reduce counts but there is some experience that it assists in reducing disease itself in a small minority of patients, research continues.
Hi Tanya thank you for your reply was diagnosed 27/5/2022 went to see haematology doc said I had ET jak2 so signed paper week for hydroxycarbamide after a month levels were down which is great news have a telephone consultation on 15th Aug have since had rash and mouth ulcers which nurse got me mouth wash just think even my doctors not up to date with mpn or am I feeling sorry for myself I am 64 I work with my local council as the village hall caretaker I am quite breathless as it does include lifting table and chairs cleaning etc and have fatigue I also have ischaemia heart disease which I got a stent in some 20 years ago. I live in South lanarkshire Scotland ML11 will try and find a support group or anyone near me with the same diagnosis thanks so much for your reply Mary xx
Hi @MissDaisy you have a right to feel sorry for yourself, I know that I definitely have many a time.
I think that it is so hard when tasks were so manageable before and now they are a real struggle.
Each person is a very special unique person on here with their own medical history, challenges etc. but take your time to get to know yourself and how is best for you to manage your fatigue and breathlessness etc.
If you would like to know how I manage my fatigue I am more than happy to tell you.
Let us know if you find a support group, a virtual one might be easier.
Look after yourself and be very kind to yourself
Welcome to the Forum. Thank you so much for taking time to get in touch & share your current situation. Already lots of brilliant advice and support given by others that i will not attempt to repeat.
However i wondered if i could be of help in signposting you to some local support groups. I understand that Leukaemia Care do hold regional groups virtually and although it does stipulate leukaemia, it often involves patients of other blood cancer groups so it may be worthwhile getting in touch with them- Glasgow Support Group - Leukaemia Care.
Also Cancer Support Scotland offer some excellent resources of support groups, wellbeing sessions and general advise for anyone living with cancer- [Home - Cancer Support Scotland]
Finally MPN Voice have a brilliant Buddy Programme which can be brilliant resource of peer to peer support- Buddy Programme – MPN Voice .
Please do also know should you ever just wish to talk anything through, our support service team is only ever a phone call away- Blood cancer information and support by phone and email | Blood Cancer UK
Best Wishes, Lauran
Can’t add much to what @Jilly20 has said, together with the information you can get from the MPNvoice website. I’m 78, ET, but with the CALR mutation and been living happily north of Aberdeen on daily 1000mg hydroxycarbamide since 2013. Knowledge of ET is a bit patchy between hospitals, but Aberdeen haematology have been excellent. I suspect one reason for there not being so much interest in ET among medics is that we are generally pretty unproblematic and live fairly normal lives until something else (prostate cancer in my case) hits us!
Hi Miss Daisy i too have Jak2 ET - i was told it’s a life long condition - i was diagnosed 8 yrs ago and treatment has kept me very well - apart from one blip when i came off chemo and tried interferon (which made me really ill) ive led a pretty normal life - i am back on Hydroxycarbamide now and doing really well - it doesn’t really impact on my life apart from getting more tired (but hey having just turned 70 could be my age lol) and sometimes some mouth ulcers - if ET is caught early treatment is usually successful in controlling it - I’m checked every 3 months now (was more frequent in the early days) and its usually a telephone appointment since Covid so very easy - i hope this helps to put you more at ease as its always worrying when you’re first diagnosed - i hope your treatment keeps you as well as i am
Hi @MissDaisy I was also diagnosed with ET Jak2 earlier this year. The registrar did think I had Polycythaemia vera (PV) too so I’ve had weekly venesections to bring Haematocrit down. It is unfortunately a life long condition but hopefully it won’t have too much an effect on life span. I have not been prescribed and medication with the exception of aspirin and allopurinol. I do wish you all the best with your treatment and hope it doesn’t have any serious side effects.
Hi @Adw265, I am glad that your condition, although life long, won’t have too much effect on your life, go and have lots of adventures and look after yourself
Thanks @Erica Luckily I have a two week rest from venesections so hopefully my ferritin levels will increase and reduce the fatigue considerably.