I was asked to record my story for a conference in New York this coming weekend. Was really pleased the way it came out - thought it might be an interesting watch for those living with the disease.
thanks for the story mark i have been in remission for 5 years with HLC.i now get out and do plenty of great stuff.hope yourself and the family are well.....
Frank Hogarth Hi Frank - thank you for stopping by - glad you're in good shape now. There's some very clever doctors out there aren't there?! I continue to remain clear, 2 years after recording this...
i had the cladrabine treatment 5 consecutive days . this was 8 years ago and my blood count is now almost normal . it keeps getting better every year and i feel generally speaking good . i'm not as tired anymore . does anybody else have that as well , tiredness ? my haematologist said it should not be that way .but it used to bother me a lot . now i had that so long i do not know if i'm normal or just lazy :)
My husband had the treatment 6 months ago. He is now in complete remission. Blood numbers are almost all in normal range. He is not tired but works with our son-in-law almost daily.
Thank you for this. I am just in recovery but its failing so they are going to try the duel drug you talked about. They didnt have to remove my spleen I'm hoping the second treatment can get me back to some kind of normal, what ever that is with covid ha ha. But your talk really helps there isn't many out there, and it's nice to see what I'm in for.
Hey Richard - no, been back in the UK since 1998 ...! In deepest Berkshire now. Great to discover like minded people. Maybe I should post the 20 min version!? All the best.
Don't know if you're still monitoring comments, but I would love to know how you're doing. You see, I was diagnosed last month with hairy cell leukemia and I start treatment in three days. Reading about the study you were in online caused me to request cladribine concurrent with rituximab, and thankfully my rheumatologist and my insurance company agreed. How durable was your remission? I hope you are well.
Hi Mark, 'n glad you are ok now. I find your video when i looking in internet for new method treatment for HCL, because i was diagnostic a few months ago and for me it is interesting to find how was treatment, what people say after take Cladribine, etc. How are you know ?
Hi Tara - thanks so much. All is good now - I've been in remission for 11 years - which is amazing really. How are you doing? Hard to tell how old you are from your photo! I hope you are well and healthy now. As far as Leukaemia goes - we're very lucky to have such a rare, yet treatable disease. Best wishes, Mark
That's amazing. Great news that you have come so far. I'm kind of in the thick of it now- have a round of cladribine coming up in January and fingers crossed will all be smooth sailing from there. Have definitely had a few hiccups over the past 18 months (I've just turned 29) but could be a LOT worse!
Tara Mckay You're right Tara - whilst it's a scary thing - we're actually incredibly with our treatable the disease actually is. I wish you well for January and hope everything works out for you. Best wishes, Mark
This is great stuff Mark. Are you still down under or in the UK now? I heard about the conference in NY but can't make it due to work commitments. I'd be grateful to hear about what goes. .
Hi mark I am mohammad from iran I just last week listen from my doctor that i have a HCL. i am afraid of this, but i have to strat treatment soon, My doctor said i can postphon treatment to future. So i dont know what shold i do
My husband was able to monitor his blood (monthly blood tests) for 2 years before he had to have treatment. He did the cladribine treatment. 5 consecutive days.
