How debilitating?

Hi, And welcome but sad you’ve needed to find your way here.

our daughter had both an auto (own cells) and an Allo (donor cells) for a resistant (primary refractory) Hodgkin’s. She was just 27 when she had the auto and was knocked back by it but still able to toilet and shower independently . With her allo again she still managed to take care of herself though had to jump a few more hoops! 

Hope that helps reassure you? A SCT isn’t easy but is so-able, honestly. 
Hugs xxx

Thanks for the quick reply. Mine is auto. They tell me the SCT is the best chance to knock this thing off relatively long term. No guarantee it won't come back but they're confident. 

I'm 49.They keep telling me how fit and young I am. I had pretty much no side effects from R-CHOP except for fatigue and peripheral neuropathy, but ICE and BEAM scare the hell out of me. The idea of having no immunity is terrifying! 

Hi , for me SCT was a life saver.

An Auto SCT when your team get you into remission then harvest your own Stem Cells then killing off your immune system so you can give them back to grow a new immune system or as I had a donor Allo SCT.

An Auto often has less issues than an Allo. I had two Allo’s (hit my community name Thehighlander to see my story) and I experienced the two ends of the spectrum with regards to how debilitating SCT could be.

I have no regrets riding the SCT rollercoaster and simply put, I would not be around today if it had not worked.

As moomy says it’s not easy but very do-able. I was 58 during my first Allo then turning 60 fir my second Allo.

Do come back with your questions.

You may also want to have a look at this thread that moomy set up a number of years ago about the M in BEAM.

Melphalan and Ice

https://community.macmillan.org.uk/cancer_experiences/stem_cell_transplants_for_blood_cancers/f/33217/t/103587

....... and some info about BEAM

https://www.macmillan.org.uk/information-and-support/treating/chemotherapy/drugs-and-combination-regimens/combination-chemotherapy/beam.html

........  and Understanding stem cell transplants using your own cells (autologous) a free download  - PDF here

Thanks. I find the whole thing pretty terrifying. I was hoping they would suggest a clinical trial, but they think SCT is the best option for me to get a good remission. 

Do you think side effects from auto may not be as bad as allo? 

There is less chance for side effects but you have to expect the unexpected on a SCT journey.

The main thing is you will not have is your Stem Cells trying to kill you. In an Allo the body sees the new donor cells as an attack on the body so does it’s very best to kill them off resulting in what is called GvHD Graft verses Host Disease so some of the drugs required in the months after an Allo are not pleasant.

Auto SCT has been done for a very long time and the experience of these team is amazing - what hospital would you be having your SCT?

I'm having my treatment at the Olivia Newton-John Centre in Melbourne, which has been amazing. I know someone in her late 60s who's had allo, but haven't had a chance to ask her about it. I need to track down her contact details. 

I was hoping to get onto a trial, because they have hundreds going there, but they feel SCT is the best option for me to get lengthy remission. 

To be honest, many who drift here when they have an auto and are in a state of panic, get into a lasting remission and drift off again, having reclaimed their lives! 
the whole process is really a short sharp shock, rather than the long 6 months or so of fortnightly chemo, and you will be well looked after usually in an en suite hospital room, monitored carefully for any adverse effects.

From my observation of daughter (who was a total hospital phobic and stayed asleep as much as she could to block it all out) I think it helps if you can get up, shower and change and maybe do a bit of gentle exercise round your room. She was so weak when she got out, having stayed in bed so much after her auto. She was a good bit better about getting up and about after her allo and wasn’t nearly as weak, even though a few years older! 

Hugs xxx

Hello, I had a auto transplant a couple of months ago. I’m in my early 60s and leading up to Myeloma diagnosis I was reasonably fit, always active at gym or swimming. Following transplant each day I was able to shower and get about my room - make myself tea/coffee etc. I made sure I walked about room each day, made sure I ate meals. The few days after transplant were the toughest for feeling tired but it got better and I was determined. I was prescribed anti sickness tablets and was also given anti sickness via i/v pump, so this helped so much with eating To prevent mouth ulcers I was given mouthwash and sodium chloride rinses which I made sure I did throughout the day. The day comprised of reading, watching tv and talking to loved ones on the phone or video calling. There was no visitors allowed due to Covid so the isolation was tough, some days worse than others but doing all of the above helped, seeing it as a set routine looking towards a positive outcome. I was discharged under 4 weeks from admission. 

Currently it’s blood tests to monitor. 

So yes you can be independent. Hope my reply helps in anyway.