I had a stem cell transplant appointment , we had a discussion on how the procedure is done. Can someone help me with there experience and the side effects they faced. I also have a child 3 years how do you cope when you are hospitalised for those weeks. I'm worried.
Hi again TeeM remember that I don’t have HL….. but I have/had 2 types of very rare T-Cell NHL (one is incurable) and eventually I had to have 2 Allo (donor) SCTs the first in June 2014 with the second in Oct 2015……. and 9 years on I remain in remission to this day and am living a great life.
The most important thing at this point in time is seeing this as a temporary bump in life’s road but a massive steppingstone to get long term remission.
The other thing is that regardless what you are told and see in all the information a very high percentage of people who go through SCT will honestly say it was not as bad as it was first made out to be.
My story (LINK) is very complicated as I was being treated for 2 types of Lymphoma at the same time……. My first SCT was uneventful….. but it did not work. I will say that it was a new conditioning treatment that was used due to me having 2 NHLs so it could be seen as a trial…… but over the 10+ years since I had my first SCT there have been others who have followed lowed the same path as me and are living a great life…… my secind Allo was more challenging but it was just complicated.
An Auto SCT has less post treatment issues than an Allo so recovery is often quicker.
Here are a few links…..
Self (autologous) stem cell transplants
Top tips for stem cell transplants
One of the best ways to get to understand what the SCT process is like is to actually talk with someone who has been through the process so I recommend that you look at Lymphoma Action great Buddy Service where you can be linked up with someone who has walked the same treatment journey.
Any specific questions just ask them.
