Cal-reticulin positive

[Bill_E]

Hi can anyone tell me whatever means to be Cal -reticulin +ve. My platelets having been creeping up, not managed by 2 gm per day hrdroxycarbamide (3 days) with 1.5 gm on alternate days, so have just started peg interferon. 

My haematologist says nothing to worry about, but of course I can't read enough about it. Does anyone else have a similar experience? I have ET by the way

[AndyT]

Hi Bill,

I have CALR+ ET - all it really means is that they have identified the genetic mutation that has caused us to have ET - what we don't know is why we have that mutation. There is some research that suggests we with CALR may have a better prognosis than some others, with slower progression and less risk of transformation to MF or CML but CALR was only identified a few years ago so it's probably too early to be sure of that... I've been on Pegasys for about 8 months now and it's worked really well for me - down to one injection a month and no significant side effects. Good luck..! Andy

[swess in reply to AndyT]

Hi Andy - I always feel good to read your posts as you are always being positive even at your age. You know, I am still learning to accept that I have this genes and will not know what happen eventually.. You mentioned you discovered 13yrs ago and still doing well now? No other symptoms right?.. cheers, swess

[AndyT in reply to swess]

Hi Swess - as far as I can judge ET has had very little impact on me - I get very tired but really can't judge if that is linked to ET/meds or just getting older and still leading a busy life - maybe it's a bit of both..! Side effects from Pegasys are dry skin and occasional mouth ulcers but not bad - maybe it makes me tired too..?

[swess in reply to AndyT]

Hi Andy, thanks for your reply. Did u verify with the doctor is the side effect that you mentioned, dry skin and mouth ulcer due to medication?

[AndyT in reply to swess]

Hi Swess - doctor agrees re dry skin - not so sure about mouth ulcers but I only get them 2/3 days after I inject so I'm sure they are linked. Not a big problem though as they soon subside again...

[Hidden]

Hi Bill I am like  Andy with ET and  CALR postive.. I agree with everything he has said, I was told the same info. I only take aspirin 100mg daily. I am coping fine with no side effects from ET. Working almost full time. I walk heaps and eat a healthy diet. My platelets sit between 635 and 735. My haematoligist said you can expect 10% changes in your blood results and it is not a worry. So far so good! I do know good old stress can push those platelets up!! Keep calm and  breathe deep.  Regards Lyn

[Islander47]

PMF 26years, Calr+. It's one of the better mutations to have.

[swess]

Hi there, I am calr + ET as well.. No medication now.