I have a "meeting" at the hospital tomorrow to discuss my treatment etc
Id be grateful for any advice on what questions I should be asking
Thanks
Pete
Hi Pete, if this is about SCT you would always be better starting a thread on the Stem cell transplants for blood cancers as you will pick up I formation from more people who have walked the SCT walk.
If it is about SCT - Questions?
Do they see any medical complications that will have to be overcome before you go into SCT
What medical tests will you have to go through - I had a lot.
Double check what type of SCT they are looking at an Auto SCT is using your own Stem Cells or the one I had was an Allo SCT with Stem Cells from a matched donor (my brother in my case)
What type of Conditioning (chemo) would they plan to use to take down your immune system.
How long do they see you being in the Transplant Unit.
I am sure that they will be very clear about the whole process.
The Talk' with the SCT team is where the team unpack what they are going to do and carefully detail ALL the possible side effects. Yes, some of these side effects can turn out to be bad very bad and you will be giving permission to your team to take you to the point of being open to very bad infections and side effects, then bring you back with an ‘All New You’ it all sounds very scary but it is ALL very do-able.
The talk is not there to scare you, but to honest and as best as they can tell you what a SCT journey is like and they do have to cover their backs as well.
Hi
Thats all very useful and not at all scary !!
My post regards both Chemo leading up to SCT and SCT itself so seems to me the questions you offer are a good combination
Last time round I had Chemo and Rad ... but I never really asked questions I just let it "wash" over me
This time I want to be more informed and also intend to keep a journal
Im looking forward to being all new
If they are going for your own cells you will have to be in remission to allow Cell harvest. This was not an option for me as they could not get me clean so had to have two Allo’s so the chemo leading up to harvest will be designed to get you into a window where your cells can be taken.
There are various conditionings used to get you ready for SCT. Some use very strong chemo but it’s only for a short period. Some SCT like my first did not use chemo but what is called ATG(anti-thymocyte globulin) and 10 sessions of TBI(Total Body Irradiation)
I have a few note books that span my 20 years journey with my Lymphoma and SCT including all the questions I asked, answers and a diary of what happened when.
The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot and I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.
Hi just to add to what Mike has posted I would be asking are they treating this as a relapse or as a new diagnosis and is the histology/pathology the same as the diagnosis 10 years ago. What treatment do they plan to use and why that one and is that best suited to get you into remission when looking at the profile/presentation of your disease, are the options on treatment and what are the pro's and con's of each and once in remission what will they give you as conditioning treatment and how long do they see this taking.
Hopefully the newer drugs will mean they can manage any concerns re your heart issue you mention in your initial post.
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