Hairy Cell Leukaemia

[Dustina8]

Hi. My name is Dustina. I was diagnosed with HCL a year ago yesterday (4/12/2015) and had cladribine January this year. Have felt like I was on a conveyor belt and told a number of times if I was to get Leaukemia this was the one to get .... Err no ! Any type is awful to have. Thankfully I'm a strong person and have managed to get through everything with only the support of family and a FB group based in America. It's through them that I have found out so much. Hopefully this group can provide the support and information that doesn't get given from hospitals. A few leaflets didn't help. Nurses were fantastic but I've never seen the same Consultant twice. Apparently once diagnosed . ... treated . ....you're then remission . ... Some do have other symptoms . ... Personally for me life is great but I would like to see more support as a 5 minute appointment is not enough. It would be interesting to know how others have coped and been treated.

[mikefergus]

'FB' group?

mikefergus

[Dustina8 in reply to mikefergus]

Facebook

[mikefergus in reply to Dustina8]

Thank you: I would never have guessed.

Best of luck.

[LCNurse LeukaemiaCARE Nurse]

Hi Dustina

Thank you for joining the leukemia care forum. We have had a few posts about hairy cell leukaemia since we started the forum a few weeks ago. So there is an obvious need of support for you and others that have been diagnosed with this rare condition.

We are here to support any patient with a blood cancer plus we have lots of information on our website. We also have the careline if you feel you need to speak to someone.

Please look a the other posts and you may find the support you need.

[dutchy55]

hi justina, you are right some do have other symtoms, i myself am tired most off the time, occasional pain under both side ribs, spleen / liver ? and my skin seems to mark easily ,i have had this about a year, no treatment yet just watch and wait , what is fb america, regards barry

[Dustina8 in reply to dutchy55]

If you have a FB account search in the friends search box for Hairy Cell Leaukemia and there are a couple of groups. put in a friend request and they'll accept you. A number of us in UK are in their groups. They're a great support

[Aster_]

Hi Dustina, I am new to this forum, but I see you posted about HCL previously. I was diagnosed last year and wondered how you were getting on now so far on from diagnosis. Have you needed any further treatment? Thanks Aster

[Dustina8 in reply to Aster_]

Hi Aster. Seems so long ago that I was diagnosed and had treatment... 8 years now. Things are generally great. Had a number of iron infusions as red blood cells keep dropping so I become anaemic. Apart from that life goes on as if there was nothing wrong. Very lucky. When were you diagnosed and how are you feeling?