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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
My husband is heading to Kings in London for his SCT this month. As we are not local he is doing the conditioning part in Ambulatory care and is being put up in the Best Western for this period. Just wondering if anyone else has done it this way and has any tips?
we know he is in daily for treatment but that's about all we know at the minute ,
Hi NadineElizabeth and welcome across to this part of the Online Community.
It looks like it is becoming more normal (cost wise) for folks to be put up in a hotel or other type of accommodation during the early conditioning part (the chemo to take down his immune system) before he goes into the SCT unit and gets his Stem Cells.
The main thing during this time is looking out for reactions to the conditioning. Some of the final Chemo used can be very strong so you need some clear direction from his team as to what you would have to do and who you should contact.
As his immune system starts to drop he will be wide open to infection and thats where he would have to be protected and going out about my not be advisable.
I was in the SCT unit during all the 28/29 days of both my two Allo's and only was allowed out once my counts were at an acceptable level to go home but check this all with her team.
We were 8-9 hrs round trip away from home in Glasgow so my wife stayed most of the time in a family room on the ward. But she did go over to our daughters in Edinburgh a few times just to keep up with my washing as I had to have a clean set of clothes night and day every day.
Has he been told what Conditioning Chemo he will be having?
Is he having his own cells back or cells from a matched donor?
We have THIS thread with tips from others who have been on the SCT rollercoaster about the things that helped them get through the treatment.
You can see our stories by hitting our forum names - Keep your questions coming.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
His sister is his donor, luckily!
I will be staying with him in the hotel until day 5 post stem cell infusion then he will be admitted onto the ward.
His conditioning chemo is Fludarabine, Busulfan and ATG due to mismatched blood type.
Thanks for the link to the thread
Hi again, so I had Flufarabine and ATG plus 10 session of Total Body Irradiation as part of my two weeks Conditioning. I had to have massive amount of antihistamine before the ATG and still had a reaction and then must have slept for hours and hours. I would say I could have stayed in s hotel until T -4 but after that I was in bed a lot.
My second Allo SCT was a completely different story.
By the time he gets to T -1 and 0 day (Cell Day) he will not have an immune system so I would be surprised if he is not in the SCT Unit away from infection risks as at this time he is open to all and any infections and some could actually be very dangerous...... but things are changing all the time.
Has he been given an actual start date?
My husband had that exact drug regime (Plymouth: we decided against Kings for several reasons, largely distance from home).He was on the SCT unit for the whole time. In our experience he was not too bad for the first two or three days - able to get out to the hospital coffee shop, not many side effects. Once the busulfan started things kicked off - nausea and diarrhoea and he began to feel quite unwell and slept a lot more. Day 1 of ATG was difficult - he had quite severe rigors and felt dreadful. Day 2 of ATG wasn't quite so bad. He was sleeping a LOT by this point. By the time he got to transplant day (Cells from his brother) he had sepsis and was very poorly. The transplant itself was delayed for several hours while he had IV antibiotics.
I have to say I wouldn't have wanted to deal with parts of that in a hotel, but doubtless Kings have lots of experience of doing it this way. But everyone is different. I know we really appreciated the support we got from the nursing staff in particular, and I hope you have sufficient support too.
Two years on, my husband is now doing fine. Short term pain, long term gain.
we go in tomorrow ready to start on Saturday. The ATG is day - 8 and - 9where he will be admitted due to the risk with reactions but then will be out again on day zero until 5 days after infusion. I was expecting him to pretty rough by day - 8 so am prepared for that. Cheers
Thanks, thats really useful to know. I thought he would probably be okay for the first couple of days and then he would start to deteriorate so thats reassuring.
I am nervous of the hotel stage but I know he can be admitted at any point so thats reassuring me a bit.
Great to hear that your husband is well. Fingers crossed we will be there too.
He did have to have four DLIs over a year for very mixed chimerism (it plummeted at one point and then refused to go upwards at anything more than a snail's pace...and sometimes a snail in reverse) but they've stopped even looking at that now!
Thats the scary part isnt it, all the wait and see stuff and what ifs. Good to hear positive results though
Yes, in an Allo SCT journey you have to expect the unexpected.
My first Allo SCT just did not graft, my second Allo SCT went 23 months with my counts down at the 50 - 60% then a few DLIs and a few versions of GvHD then 100% out of the blue.
Its a rollercoaster ride but we can walk it with you.
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