Stem cell transplant

Hi sunshine1 I was under the team at the QE in Glasgow although not my Allo SCTs were done in the Beatson (June 2014 then Oct 2015) you are in very safe hands.

Please remember that all the challenging  information you you are goi g to told us the very worst outcomes….. but most people I talk with will say the the SCT process was not as bad as it had made out to be.

You can see my story in the link below but I am now over 7.5 years out and found great

Hi Sunshine 1

First step is over and you were lucky getting enough cells in one day. My advice for your appointment would be to bring someone with you as four ears are better than two. Also bring a wee note book so you can take a few quick notes and try an have a list of questions you want to ask. My consultation was during Covid therefore I wasn’t allowed someone to accompany me and when I came out there were things that were said and I just didn’t retain them.

Its all very daunting but prepare yourself. Because mine was delayed again, because of Covid I couldn’t wait to get it over with in the end. I prepared that I was going to get sick the day following the high dose Chemo and I was going to lose my hair and I would probably get an infection…….low and behold I got all of them! and more, but I was ready for it. I won’t sugar coat it because

it was rough. Everyone is different though but that’s how I got through it. Today…..I am great!  It’s like having a baby you forget the hard time.  I would do it again in a heartbeat to be Myeloma free. I sincerely wish you well. Stay strong. You can do it!

Hi Cakie

Not long to go now. You’ll be fine……if I could do it anyone can!

I wish you well and try to stay strong remember everyone is there for you xx

Hi cackie

Good luck with your transplant I hope it all goes ok!.

I am taking my husband with me to my meeting tomorrow as an extra pair of ears. He has been my rock through all of this. I'm trying to work on my fitness now as I've been a couch potato for the past  6 months during treatment, and seem to have put on over a stone in weight. The steroids gave me such an appetite, I have ben told that I might need this extra weight during the transplant . I have always been so thin, it feels strange to have  a belly and struggle to get into my clothes.I am also looking at the funny side too. 

Best wishes sunshine1

Hi sunshine1 I had two SCTs so two ‘Talks’ with my SCT teams.

The first one was indeed challenging and yes, very scary and a lot of the info went over our heads. We were like rabbits caught in head lights as our attention was often focused on the bad things that could happen and we totally missed the good parts.

My first Allo SCT did not work so going through our second ‘Talk’ was no where near as scary as I had the T-Shirt…… apart from “Mike if this does not work we don’t have much tools left in the box”…… but I am over 7 years out from my second SCT and doing great and there are a few new treatments come out over the past years so I now have a fall back.

The ‘Talk’ is where your 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 your tram permission to take you to the point of being open to life threatening 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 be 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.

I have talked with many people post SCT and a very high percentage will agree that the SCT process was nowhere near as bad as what was said during the ‘Talk’ and in all the info provided.the main thing people talk about was the boredom

All the best with you meeting.

Hi Cakie, how did you SCT go? I hope you are recovering well. i am 4th on the list now so it shouldn't be long for me . 

Hi Sunshine1

Thank you for asking about my SCT .I am happy to tell you I was discharged from hospital last week (17th day after STC) and am now recovering really well at home . 

As with anything there were ups and downs but nothing the fabulous team at the Aberdeen Royal infirmary didn't warn me about . They really do have an answer and solution to most problems that you may encounter and support you all the way. You just have to trust them and tell them if you are having problems .I had no mouth ulcers at all but am still struggling with fatigue and loss of taste and appetite  but these things easier managed at home rather than in hospital . I'm on regular weekly checkups at the hospital and so far my bloods are recovering well. Handy tip I was given is to have a good supply of disposable undies and a long phone charging cable.

All the best for the future. I hope you get a date for your SCT soon.

Hi Cakie and good to hear you are out and in the recovery stage.

This link Life after a SCT - A Survivor's Guide contains group members stories about the post SCT journey ((hugs))

Hi. I hope you are recovering  well. I got news that I am going in on Monday  for my SCT. My bloodwork this morning showed  I am.in remission as my paraprotiens are at 0.6. I am busy packing my suitcase and getting myself some snacks  and nibbles too.  I have been told  i will get my central line on Monday,  given melpephan  chemo on the Tuesday and my stem cells  back on Wed .  

I'm a bit nervous  but also happy to be getting the treatment too. I've been working  on my fitness and I'm managing  a 2 mile walk most days. 

Sunshine1

Hi sunshine1 I sent you some info about Melphalan on your other post…… I had an exercise bike in my room during my first SCT so was doing a good 5k every day - this helps the recovery - all the best.