Hairy Cell Leukemia (HCL)

March 21, 2011 - 12:21

Hello

Wondering if there is anybody out there who has been diagnosed with Hairy Cell Leumkemia?

I've just been diagnosed, and will start treatment soon - so keen if there are others out there?

It's a pretty ununusual cancer - informal stats show a lot less that 10 people in Ireland diagnosed each year.

Up to this point - I have found this dedicated HCL forum pretty useful
http://www.network54.com/Forum/263810/

Kevin

March 23, 2011 - 01:00

Hi Kevin,

I had ALL, fairly common but I had an unserlying bone marrow problem called Myloid Perpheral Disorder or something to that affect. I was told that the bone marrow disorder I had had only had 100 diagnosed cases ever! Scary stuff when told that.

So had full body irradiation(this day last year actually) and then had a bone marrow transplant. second person to have it for my condition and the first person had only had it and was not out of the woods yet.

So my transplant was a year ago tomoro and I asked how the other person was doing and they are flying along, just like myself.

I'm not sure if u can get a Bone marrow but i wouldnt say its off the table anyway.

My point is I had a rare type, as did this other person and we both got through it!

As Lance said "hope is the answer to all fears"

March 23, 2011 - 09:32

I think I'm possibly "lucky" in that the huge majority of patients respond well to the HCL treatment that is currently available.

You sound as if you have been through it big time!

March 23, 2011 - 15:16

Well the odds are with you! its not nice being sick but wat doesnt kill u(and it wont) makes u stronger!

I was diagnosed in september 09. To be honest I was scared! I spent 6 out of 7 months in hospital being treated and had my transplent this day lat year! I went back to college in September 2010 and am finishing up in May. I play the odd game of indoor football and will be back playing a bit of tag rugby in the summer and hopefully be back to full contact come next september!

So ye it was a tough few months out of my life but its behind me now and soon enough it will be behind you and u will be back doing the things you love after it!

The treatment is unreal these days! I met a woman who is trying out this new drug for i think it was AML and all she has to do is take a tablet twice a day. Think it was found in Trinity. but thing is soon enough id say they will come up with a tablet for our two types soon enough.

Anyway, keep the bright side out and good luck with the treatments.

Kev