Currently I am on 'watch and wait'. It would be fair to say that I have had a couple of 'wobbles' but I can't fault the level of attention I am getting and the quality of my local surgery and hospital.
Given the comparative rarity of HCL it is proving quite hard to find out much about what may happen, and when, which is both good and bad.
I suspect there will be ups and downs along the way, and obviously everyone is different, but it might help both myself and those around me to come to terms with the future if I can hear from other people with the same condition who are further down the road than me.
Hi and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and to hear about your diagnosis.
I am Mike and I help out around our various Blood Cancer groups.
I don’t have Hairy Cell Leukemia (HCL) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well….. and I was basically on Active Monitoring (Watch and Wait) for 14 years before I needed any full on treatments.
We have a dedicated group covering CLL, SLL, HCL because these types of blood cancers, although have the word Leukaemia in then, in Heamatology terms, actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say.
Lets look for any lurking group members to pick up on your post.
Do 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 inks 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 also 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
