Hi. This was the chance I was given of having my sct work. The donor is in America so I have a few weeks yet. 15% chance of death. 30 to 40% of relapse. Are these numbers fairly common in your own experience? Thanks.
I can only relate to the many conversations I had with my SCT consultant.
She started by saying that everyone are a statistic of 1 and not to look at trying to fit ourselves into any specific statistics range as it’s far to complicated but in my case, she was very clear that my chance of survival without a successful Allo SCT was 0% and gave me two and a half years on the clock.
She said the then national average SCT survival rate (2013/14) were at 90% with her unit being at 92% going on to long term remission (3-5+ years)
She also said she did not have the national figures, but for her unit the average life expectancy for folks who did not go forward with a SCT when it was offered and was not taken up was 3 years.
The 8% in her unit who did not survive were average age of 59 (I was 58 on my first Allo and 59 on my second) with all having at least one underlying other health issue and that their pre SCT prognosis was very poor with their conditions not responding to the SCT process. I have Asbestosis and this was looked at very closely but as my prognosis was not great we rolled the dice......and got the 6.
I then asked her, so why are the figures used during what we call 'the talk' so different from the reality? and she basically said that it was the only way of showing the worst case scenario and infect the figures used were normally based on the lowest performing UK units, but she also said who knows if we can keep our success rate as good as we are doing now but we are doing good so far but it is all about how well the folks coming through the doors get on with the process.
She also said that her units long term remission rate has been going up for years now and the stats will always be lagging behind the reality at looking at folks three years down the line......... but I have found out through a back door source that their stats have indeed improved in the past 7 years :)
Hi Naiad
When I was in remission from ALL I had my chat about stem cell transplants I was told if I didn't have one there was an 80% chance it would come back and if I went ahead with the SCT there was a 30% chance of it being successful. I had the SCT 9 1/2 years ago and it all worked out for me. Like Mike has said they have to give you the worst case scenarios but it can be quite the opposite.
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
Naiad Hi
No not really. I work, travel, go out, play sports etc. My immune system was a bit slow to get going so I went onto immunoglobulins which I do at home about 5 years ago. Not sure if I still need them but due to Covid coming off them has been put on hold for the last two years. You can read my profile by clicking HERE
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
