Hello forum members, I have been diagnosed with HCL. I know that it’s rare, I would appreciate shared experiences of treatment with Cladribine.
Hi Sunni and a warm welcome to this corner of the Community although I am always sorry to see folks joining usand to hear about your husband's diagnosis. I am Mike and I help out around our various Blood Cancer groups.
I don’t have Hairy Cell Leukemia (HCL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.
Although HCL has the word Leukaemia in it, in Heamatology terms, it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma this is why CLL, SLL and HCL have their own group - yes very confusing I hear you say.
Lets look for the group members to pick up on your post, you may also want to look through the various discussions abd as Akways you can hit reply.
Do also check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc and cover HCL (All the links are taken from the Lymphoma Action site)
Lymphoma Action run regular Support Platforms both for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
Do check out for a local Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups….. the one I attend does have a few folks with HCL in it so worth checking.
Always around to help more or just to chat
