I also thought i was young and so did the doctors as it took them quite a while to diagnose as they could not understand it as they thought i was too young!- No-one tells me i am too young any more (now 44).
Had my last push of pentostatin this week (15 in total) and will do and see my consultant in the New Year for tests to confirm remssion (fingers crossed).
I had been in remission for 10 years and you are right you do feel better as the years go by.
The best of luck with your results in the New Year. Let us all know the outcome.
I've only had HCL once so far at 28. I'm 33 years old now and am enjoying being in remission. However, I am aware in the back of my mind that some day my number will come up for round two.......unless I am extremely lucky and never get HCL again. Statistics don't support that line of wishful thinking though.
How was it psychologically second time round for you? Did "knowing your enemy" make it easier to deal with?
The second time around i found quite difficult psychologically as i was not expecting it to come back. Initially when i had the pentostain in 1993 i was told that this was a cure. I was the first person in Wales (if not Britain) to be treated with pentostatin so when i relasped at the end of 1997 both me and Angie (my wife) were in shock. It was also difficult as i had not tollerated the pentostatin well the first time and i had quite few infections that had to treated in hospital. I also had 15 cycles (one every two weeks) so the treatment went on for quite a while.
I was treated the second time at the begining of 1998 with cladrabine. I went into hospital for seven days, had no side effects (only boredome) came home, led a normal life for the next 10 years before relaps last February. Again this was a bit of a shock as i still thought at the back of my mind that iwas cured but the worst part was being told when i went into hospital to start the cladrabine that it was not available and that i would have to have the pentostatin.
I had my 15th cycle last week and started on my birthday back in April (14th) so the time it takes to complete the course is a bind. I have tollerated it better this time as i feel there are more preventaive measures that i was given this time. Also there are sites like this one were we all can find out the facts so can be better prepared- i had nothing back n 1992 or 1997 or this latest time even because it was so far at the back of my mind i was not aware of sites like this and had never bothered to research untill i found myself at home after the chemo feeling sorry for myself .
I was going for blood tests once a year and when i went this year i was worried that if the test was ok they would tell me as it had been 10 years they would not want to see me ever again!
When fist diagnosed i would have loved to speak with someone who had the same condition, i have still never met anyone face to face with this condition.
I think it is part of human nature to think this will not return once we are in remission and who knows, statistics are not always reliable so to think along these lines is a possitive step as opposed to the thought of it returning.
When and if it does return it can be treated again and i was in remisson longer the 2nd time around- here's hoping it will be even longer the 3rd tme around.
We all should live our lives as normal as possible, this disease does not stop me from doing anything (I still race motorcross) and if i need treatment for a few months every 5 to 10 years( 10 is better!) that slows me down for these months so be it.
Thanks for sharing that with me Dave. Its helpful.
Next Summer I will have been 5 years in remission. I've had it once and I know its likely it will come again. I've tried to ensure my wife is aware so that we are both prepared (as well as one can expect to be prepared anyway) and I now just try to get on with life.
I doubt I will ever fully close the chapter. There will always be that anxious wait before my test results.
At least I have my wife and son. We have such a great life which takes my mind of it.
Would you believe, the other year LeukaemiaCARE had a one-day patient conference in London featuring hairy cell and a few other leukaemias. Well attended, about 80 people I think, and, TEN with hairy cell all in the same room! And Richard even organised a hairy couples weekend in the New Forest, think six of us went... had a jolly good time too.
Interesting reading your story, I'm a bit like Nicolas - 5 year remission, oh, I'm probably twice his age though, even picked up my bus pass this year. you mentioned for your last treatment, cladribine wasn't available so you had pentostatin - was that because of cost, as I thought cladribine was now the preferred treatment?
Cladrabine was not available as the factory where it is made were moving to another state in America so supplies were short.
Cladrabine is in fact much less expensive than the pentostatin.
It may be available by now as we were told that it would be available again by August but i could not wait untill then.
Hi Dave,
I too had pentostatin first in 99 and hed 8 treatents fortnightly, and again in 2001, 8 treatments . its amasing how the treatment amounts differ, infact in 2001 my specialist stated that she didnt think that i needed the last 2 as my levels were good enougth, but changed her mind, perhaps fortunately as second time round ive been in remission 9 years. I realise it will probably come back,but i just live life to the full , im on a caribian cruise over christmas and new year.
all the best
Richard
I think they guess!!
After 6 my consultant told me he did not think i would need any more as my bloods were good, he then did a bone marrow test and i had another 9!- could not beleive it- never mind, better i think as hopefully i will be in remission longer- 9 years i would settle for and 10 would be brilliant.
Its funny how you were also in remission longer the 2nd time as all the information i have seen on the so-called medical sites seem to state a shorter remission the second time and both you and i prove that this is not true.
Caribian cruise over Christmas and the New Year- very nice- make sure you have a drink in your hand at midnight New Years Eve (UK time- you may have to start early- or late) and we will toast the full life, long remissions and all our friends who we have become aquainted with on this site.
