hi everybody, well I just got back from my SCT. So relieved to have done it and not nearly as bad as I expected. If you have one coming up then good luck and you CAN do it- happy to answer any questions. Thanks Adrian
Well done Adrian! There’s still some time to go to fully build up your strength, but give yourself a huge pat on the back, you got through it!
Thanks Greg, It truly is an experience! I can only tip my hat to you with what you went though.
Plan to lie low for a couple of weeks and potter around.
So grateful for this site and Myeloma UK as without them I’m not sure I would have coped very well. Next I plan to raise more money (around £1200) since March. and getting friends and family to get their Christmas cards from Myeloma UK. As the hope for the future lies in science in my opinion.
hope all’s well with you
Any feedback on the process would be greatly appreciated – we find out between now and Wed (18th) if my other half is having his SCT or not but he is provisionally all booked in for the 23rd Oct. I don’t know what would be better the SCT or another 4 months of chemo twice a week (randomized on a trial).
I’m a little put out by the 10-15% chance of him ending up in the ICU / followed the 2% fatality rate along with him losing 10% of his body weight (my other half is naturally very very slim to begin with). Though i’m mostly worried about the first few days after the initial chemo session whereby he suffers a lot with sickness its very bad.
Adrian – May I ask how old you are again, how long were you in for, was it Chemo just the one day before the transplant – i’m still confused about the steps involved.
Hi Sabs, I am 48 years old. I went in on Friday 22nd Sept at 6pm, on Saturday I had the <span style=”color: rgba(0, 0, 0, 0.870588); font-family: Roboto-Regular, HelveticaNeue, Arial, sans-serif; line-height: 20px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0);”>Melphalan which took about one hour, because of the weekend I had to wait until Monday to return my stem cells back- again this only took around one hour. Got out this Tuesday so a total of around 18days which I think is around the normal range. He will be on drips quite a bit of the time and you are constantly monitored night/day. I felt very safe but it is a hard slog. If you get the green light let me know as there are two or three things I would do which would of helped. </span>
Any questions please ask away, that’s what this site is all about.
So usually is it the day after you have the Chemo that they put the stem cells back in ? I know you said it was the weekend but im not sure what is the norm. We were told that it takes 11 days for the immune system to go back to normal but im not sure what happens in the first week. My other half is 39 he will have his 40th the week after he gets out (if he has the SCT). But thank you for some insight, im slowly piecing things together.
Hi Sabs they usually put them back 24 hrs after chemo, I know what you mean about not making sense!! but I think the chemo is so strong it kills nearly all your cells good/bad and the stem then graft behind this, side effects really kicked on around day 7 for me. After the <span style=”color: rgba(0, 0, 0, 0.870588); font-family: Roboto-Regular, HelveticaNeue, Arial, sans-serif; line-height: 20px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0);”>Melphalan </span><span style=”line-height: 1.5;”>initial chemo they put you on a drip for quite a while to help flush you out. I went though 14 lollies while having the chemo and swallowed the lollies in bits so some whole bits went down my throat, I had no problems at all with mouth sores- might have been lucky but felt going it was better than not. Hope this makes sense, Adrian.</span>
Literally just heard he is going on another 4 cycles and not having the SCT – But he is now going back to Stanmore ASAP as during the SC priming session he had sever back pain they had to do a MRI as it was located in the one area, they have noticed another lesion on his T-12 (i hope this is not new – can you still get lesions if the treatment is working – dropping your PP’s and all down ?? Im more confused than ever now. He said he doesn’t feel any different as the pain is just always constant – and the priming session they said something about a level being 100 and no wonder he was in so much pain as they only needed a count of 10. And of course we are not due back in now till the 18th – great!
Hi Sabs, Wish I could help on this one but I simply don’t know the answer. Did he have an MRI scan when he was first diagnosed? From what I undwrstand if the M spike has been reduced (which it clearly has) then this should stop further bone damage.
I think we are okay, though we will find out on Wed at our next appointment, i’m guessing its a case of having the co-ordinator not knowing what she is on about and getting lost in translation. I got home Friday and noticed in one of the old letters sitting on the side said that the T-12 bone had the big lesion – this was the bone she mentioned and is the one that he was put in a back brace for. So i’m guessing its not a new one and someone is actually doing something after I mentioned on our last visit that no one has paid any notice to his back since the end of June.
fingers crossed that its nothing serious and here’s to the next four months of chemo twice a week again.
It a long slog- I was diagnosed in June 2016 and only just had my SCT the phrases ‘everybody is different’ and ‘your on a journey’ didn’t really help much. I think you just have to take it as is comes and focus on what’s next!! and try not to let your mind run away with itself.
Jeez – over a year since you were diagnosed to getting the SCT, that is a long time. The one thing I wonder for myself and my other is will there ever be a day where you wake up and go to be with out it being the first and last thing on your mind of a day. Its both a blessing and a curse that everyone is different you can’t ever get a straight answer.
You have to believe me that it does get easier- I think you begin to get used to it, if he’s like me you just want to be normal again and have the confidence to do what you want to without people thinking/looking at you differently. This does take time and guts to get on with life at his stage. I got very low at times but these days do pass and a lot of it is how you feel. My wife as great but she also knew when I needed a kick up the backside.
We try to keep everything as normal as possible – he was advised not to ride his motorbike – not because he cant but because if he comes off it then he can cause damage to his already fragile back – but the way we see it is if he comes off his bike hes buggered any ways! So while the weather is okay hes back on his bike before treatment starts again. Unfortunately keeping things normal just involves the mundane day to day stuff – all the joyful things seem to have been put on hold or stopped due to him not being physically able to do what he would normally do. Its a strange situation to find yourself in and an over night change which several months on still doesn’t seem real.
I don’t often post here but felt your situation similar to our own. My husband was diagnosed in 2011 after back pain, funny enough thought he had hurt it pulling his motorbike onto the main stand. Took a year of radiotherapy and chemo for him to get to stem cell transplant but he got there and thankfully in remission since. Advised not to ride the bike but ignored that advise and weather and health permitting out he went, actually bought a new bike. Can’t say that it leaves your mind but it does get easier and certainly gives you a different perspective to life and we enjoy the most simplest of things now. We have just returned from a cruise had a ball but looking around the ship at people who had lost limbs and no mobility at all certainly makes you humble. As Andy says on this forum, everyday is a gift enjoy it. Maggie
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