Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
I am so pleased to have found this forum as I would like the chance to speak to an adult who also has/had ALL.
I am a 57yrs female, slim, fit healthy eater non smoker etc so to be diagnosed with Leukaemia on 30th July, after having only just had blood tests that same morning, was a huge shock to myself, family and friends, who I have to say have kept me going especially as I have only had one week at home in 12 weeks much of it in an isolation room.
I completed my first stage aggressive treatment and am classed as in remission. I am nearing the end of the second phase but my platelets are too low and a transfusion has been unsuccessful (boo). I am scared that this will delay my going home as I am getting fed up of this Ground Hog lifestyle.
I have been referred for a stem cell transplant and am awaiting my initial appointment with the team. Could anyone tell me how long they waited for an anonymous donor?
It is good to read of so many happy endings which is what I am determined mine will be. I also use a lot of humour to get through. Only the other morning I woke up with a magnum moustache when all the hair I had shed overnight had stuck to my lip balm
well done on getting into remission after the first rounds of chemo. I was diagnosed with ALL in Sept 2012 aged 43 and like you I was healthy and fit leading up to it.
I got into remission after the first cycle as well and also had issues with platelets etc during the 2nd cycle.. they just kept putting more of them into me.. I think I was in for about 5 weeks and my counts just didn’t want to improve.. slowly the crept upwards and I got home.. once a decision was made that I needed a transplant they found and confirmed to me that there were 2 9 out of 10 matches within a few weeks.
I was due to have the transplant at the end of Jan 2013 after cycle 3 of chemo but this was delayed as I reacted to one of the chemo and got pancreatitis . Eventually I had it at the end of May 2013..
So I am now over 5 years post transplant and have been officially told that I am cured..
If you have any questions ask away and hopefully you will get home soon.
Good luck. Paul
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Thank you Paul for replying its given me a boost to hear your story. I know that I have a long road ahead but it's great to hear about other adults who have been there, done that and come out of it with a positive result. All my counts and platelets still too low but you have given me a push to be patient .
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