Hello

Hello There

As I type I am in hospital having had my transplant on Thursday I am ok but today feel more tired, having said that they have upped my pain medication as I have a fractured spine so it could be that. So I am hoping this goes ok and with not too many side effects! Fingers crossed xxx

Hi Neilinfrance and welcome to the group. 

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma reaching Stage 4a in Kate 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey……. especially as I have had 2 Allo (donor) Stem Cell Transplants (SCT) the first in June 2014 (that failed within 6 months) and the second in Oct 2015.

I am still in remission but have been left with what I call ‘post SCT left overs’….. you can see my story in the link at the bottom of my posts.

In our dedicated Stem cell transplant support group we have this long running thread Life after a SCT - A Survivor's Guide, it’s the place where folks share their post SCT stories.

Always around to chat.

Hi Notgivingup let’s look for your SCT to go well and you can escape as soon as possible.

Good luck- hope it all goes well

Thanks for the welcome. I think I may have accidentally flagged you- fat fingers !

Hi again, it happen if you are using a phone, but the Macmillan Staff work 7 days a week so tend to get posts back up quickly

Thank you xx

You made me laugh about the hair bit my friend. I ended up with dark hair growing back having had auburn colour since birth. A browny black beard and arms and two eyebrows that looked as if someone had glued some hairy caterpillars randomly on my forehead. Did the hair go from up your nostrils? Runny nose was pretty irritating but had its funny moments. You'll be ok bud. You're thinking outside of what you have to when you'll be feeling better than right now. Stem cells really do give you a rebirth but boy do they charge you for it. I've had them twice. I've had the spine bit too. Last year. Plenty of radiotherapy and a fortnight on a board seems to have welded me back together. My best advice though is to be very careful if immobilised to watch for DVT. I have suffered for a whole year after my treatment. I cannot stress it enough if immobilised.Sadly it was not administered too well for me as Covid had precluded visitors etc etc ,drs were not there and I was forgotten about! Just make sure they give you a plan to move your legs and avoid DVT.

Ha - yes having different hair after so long is very weird. It didn't all fall out, but enough to have to shave it all off, which was even more of a shock than it being different. It's also now grey not black. I kept my eyebrows though, which was a bonus.

At the moment I'm quite positive for the future. So far it seems that I've avoided any severe reactions to anything, and have not had some at all. When they were harvesting my stem cells I was having 2 injections a day to stimulate their production and was told that it often causes bone pain - they even prescribed a load of tramadol to combat it, but I didn't even have a slight ache. I'll definitely keep the DVT in mind if I'm ever immobilised thanks.

I had a PET scan this morning and am seeing the specialist on Friday to see how the first 3 months maintenance has gone - fingers crossed it's good news.

Hi , so hope everything goes  well for you . Se d all best wishes xx