Stem cell transplant

Hi there , i had it 5 years ago and I know you will need time to readjust, but its not that bad I  just can't remember how long it take to get back to normality but its gonna be worth doing if its working as it should. 

Stay strong. 

Hi.  Larky.    Kevin here.   A. K. A.  Vespa.    The. S. C. T.  You may have been informed when you have the chemotherapy infusion you have to drink iced water.    Maid me go to the loo a lot        Then the SCT followed the next day   That was easy took about 20 minutes.  No pain   ( I asked to be transferred back to Worcester hospital to recover from Birmingham).    I was then out in a sterile room next to the nurse station.     Then the recovery starts.    It was 10 days of tough going!    I craved sleep.    I pushed myself to walk around the room every day connected to the.  I. V drips.     Showered.   Changed into day clothes. And promptly fell asleep again.     No appetite I drank protein shakes    My wife bought me ice creams.    Magnum my favourite and sucked on mintoes.  As your mouth can suffer.      Use the supplied mouth washes      And eat what you can when you can   Every day I got a bit stronger they took blood every morning at 6.00 am.  And the duty consultant and team gave me results that I could understand!      It’s a tough recovery but so worth it!     Mine was 2.5 years ago.    Still in remission and doing good !     Be strong of mind and body!   You will be restricted to only partner visits and care taken to limit your contact to germs.  Your immune system is at it’s lowest.   Hope all goes well for your recovery.  Kevin.      Read the advice books from MacMillan 

Hi Larky70 having had 2 Allograft (donor) Stem Cell Transplants (June 2014 then Oct 2015) for my 2 types of T-Cell Lymphomas the main mindset in all this is be a patient patient and trust your clinical team.……. and do exactly as your SCT team say to do especially around mouth care….. and keeping active.

There are many types of conditioning used to take down the immune system before getting your Stem Cells like BEAM, LEAM, FluMelAlem30…… if you have the drug Melphalan (the M in conditionings) it is normally the drug you get on day T -1 when you should be given some type of iced products to suck on.

I had to start 30mins before the start of the M infusion when my team put a freezer bag full of Ice lollies on my table...... so I chain sucked these ice lollies for the 30mins before, during the M infusion that took about 30mins then was told to keep going for a further 30mins. I lost count but must have had…….. and developed the mother of all freeze brains every...... but I had no mouth issues during both my SCTs…… and this ment I could eat and not have a feeding tube put in.

Good mouth care throughout your SCT process is also important…… so what ever mouth care products you are given to use - use it religiously.

For both my Allo SCTs my SCT unit supplied a two pack mouth rinse called Caphosol. I stated using it the day I stated my conditioning and used it all the way through the 28/29 days until I went home. I set my phone for every 2-3 hours during the day to make sure that I was doing this all day.

My head SCT consultant said that mouth care used correctly would save me a lot of mouth pain and would over come any bad mucositis developing….. as this results in not eating with all the problems this brings.

Keep a regular daily routine is important, it’s an early start to the day as bloods were often taken at 6am…..

I would have breakfast in bed …… but got up after breakfast and had a shower and dressed for the day.

I had an exercise bike in my room (ask if they have them) and did a good 15 mins on the bike watching TV or listening to an audiobook.….. I did this after every meal.

I was allowed out of my room but not out of the air locked ward…. So would walk the little L shaped corridor regularly….. there was also a patients common room where I bumped into other patients and had a chat and there were snacks and a coffee/tea machine.

The less you do the more muscle wastage will happen so keep as active as you can as this has a significant effect on your post SCT recovery.

Both in my local Heamatology Ward and my SCT unit in Glasgow (I am in Inverness) these signs are everywhere…… and it is very true.

The link below is taken from a Lymphoma Support Charity and it has some good thoughts and suggestions from people who had been through SCT….

Top tips for stem cell transplants

All the very best.