hcl

[dutchy55]

hi everyone , i am new today Monday 14/11/16 and i would like to talk to people who like me suffer with HCL hairy cell leukaemia ,very rare 0.3 in 100 000, i think that equates to 1 in 350 000 there might be someone out there with it that could share stories

[Kwenda]

You might try Chris with a private message via HealthUnlocked on the CLL forum..

You will see him under cllcanada.

He is amasingly knowledgeable and I expect he has some contacts for you..

Hairy cell is very very rare and it could be worth getting a second opinion.

[LCNurse LeukaemiaCARE Nurse]

Hi Thank you for joining our forum.

We have a booklet about hairy cell leukaemia that you can access on our website leukaemicare.org.uk or i can send you one in the post.

our telephone number is 08088010444

[mikefergus]

I have had HCL since 2003. I have had chemo twice: 2003 & 2011 (on relapse). On both occasions the chemo (cladribine) delivered remission, and had NO side effects.

HCL patients are not thick on the ground; but the Royal Marsden (RM) within the last two years held an HCL conference and it was booked to capacity (c. 100). It was a part co-operation between RM and the American HCL Consortium. It is worth keeping contact with both, & of course Leukaemia Care, to learn of future events specialising in HCL.

If I can help more, do come back on the chat room.

[dutchy55 in reply to mikefergus]

thanks for your reply i am glad your chemo worked, i am not having any treatment ,just watch and wait and check blood every few months, i will keep an eye on rm and american hcl, thanks again be in touch barry

[Dustina8]

Hi I was diagnosed with HCL a year ago yesterday 4/12/15. I was treated with cladribine. You can contact me if you like