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This topic contains 18 replies, has 6 voices, and was last updated by 
kh0305 1 year, 6 months ago.
Hi All, I am 65 years old and have Myeloma, I have gone through 4 months of treatment and also had my stem cells harvested. I went to the hospital yesterday and was given a date for the Stem cell transplant. Have been reading the literature and am feeling very apprehensive about the process. Also whether I am doing the right thing by going through the whole process. I know in my heart its the right thing to do, but how will I cope, especially with the side effects. I am hoping it is just like when I was first given the literature about the drugs I would have in the beginning, I only had a few issues, nothing like the first impression I received. So I am hoping it will be the same with the transplant. Still feeling very apprehensive though. How did others cope?
Dear AC, I think you’ve hit the nail on the head about the side effects of stem cell transplant. The problem is that we have to be told everything that CAN go wrong. Most of us do have some of these listed side effects, but most of us don’t get all of them, or the more serious ones. SCT doesn’t work for all of us, but neither does any particular drug.
Statistically SCT works and extends a period of stability (which we often call remission) so most of us in the UK will agree to it.
For me certainly it was much easier than I’d imagined. The fear was much worse than the reality. I had nasty diarrhoea, felt a bit of nausea and was sick 3 times. I was totally zonked out for 3 days, days 9-11 and caught a virus which meant I had to be readmitted for 5 days, within hours of being discharged on day 14. However I felt pretty much recovered by day 60 and have had 3 1/2 years of stability since. Two friends had immediate severe reactions to the melphalan, being unable to lift their heads without nausea or sickness. Their recoveries took longer than mine, but they too have had in excess of 3 1/2 years of just about normal life since.
Another friend had no side effects at all apart from hair loss and a level of fatigue (although the drs apparently said they’d never seen this before).
I had a phone call this week from another friend who was then on day 5 after transplant, feeling tired & with a metallic taste in his mouth, otherwise fine (although days 7-11 tend to be the worst). He said his Dr has said new prophylactic drugs are given now so patients shouldn’t have the worst of side effects any more. That doesn’t mean that all patients get a Complete Response, that is still a bit of a gamble, but some patients without a Complete Response go into an MGUS like state of stable myeloma levels,which can last many years. I hope this helps.
Reply To: Stem Cell Transplant
Thank you so much for your reply Mulberry, I feel much better mentally now that I have read of your experience and also that of your friends. Although it is very daunting, I feel more able to face it now. I think it was just overwhelming to me. So thank you once again. Good luck for the future.
Hi ac,
My dad had his SCT back in 2013 and felt very much the same way as you. The fatigue was probably the hardest thing for him but he made sure that he got up every morning, even if he had to go for a nap later, just to try and maintain some sort of routine. He also lost his hair (though it grew back without greys so he was quite pleased by that!) and suffered changes to his tastebuds (which returned to normal), nausea and diarrhoea but to be honest, I think the gastro side effects he had when on Dvd treatment were worse than the SCT. It was a good few months for him to fully recover from the side effects – the fatigue being the lingering one- but he enjoyed 7 years of remission following the SCT where his life was very much back to normal. It is natural to be worried, as it can sound horrific especially when you start reading things on the internet, but just take it one day at a time. You may find that you need to adjust your diet to help deal with the nausea or potential changes in taste and get some extra sleep in but after the initial couple of weeks (as Mulberry says, the latter part of that two week period being probably the worst few days), you should find yourself feeling a little better every day. I hope everything goes well for you xx
Reply To: Father recently diagnosed at 60. Looking for some help.
Thank you so much for your reply, glad to know I’m not alone, as it sometimes feels that way. I am so pleased that your dad had a long remission period. That is the aim of all this. I am in quite a good frame of mind at present, lets hope it stays that way, although when I’m in hospital I’m sure I will have times when I feel pretty low.
Take care and once again Thank You
Hi AC,
I am one of the forum volunteers. I had a transplant in 2019, and although like you I was concerned abut it, my cancer has been inactive ever since so although the procedure is not pleasant, for me it was well worth and and given the option of doing it again if I needed to I certainly would have it. I don`t think I would have been here today, or a least my life would not have been as normal as it is had I not had it.
Only you can make the choice whether or not to have it, but in my experience, the vast majority of those who I have spoken to would have it again.
Don`t forget that if you want to speak to someone who has already gone through it, you can use the peer buddy system where you can ask to speak to someone on the phone which might be easier than doing it on here.
Please keep us informed on your progress and whether or not you decide to go for SCT.
Regards, Tony
Hi Tony642
Thank you for your reply, it is good to know that you came through the SCT ok and are still in good health. After the initial fear factor set in after reading the leaflets from the hospital and being told all the things that could happen. I have now decided after reading comments on here, that it is the best option with a better outcome. So i have now decided to go ahead with my SCT at the end of this month. I will try to keep you all posted.
Many thanks for your support. It was just what I needed at my most vulnerable time.
Best of luck to you, ac. My husband (69) is currently in hospital and has had the Stem Cells transplanted this week. I am not allowed to visit, but we have spoken on the phone today, and he is feeling quite up-beat. He certainly wavered about having the treatment, like you did, but he hasn’t had any of the symptoms so far that they warn you about. Of course, there’s still time. He is expected to stay in hospital for another week to ten days.
Hi lillib
I hope all goes well with your husband and it is good that you got to speak to him on the phone. It is a very stressful time I feel, not just for the patient but also for family. I hope you will manage to stay positive and it is good you are on the end of the phone for him. I wish you both all the best.
regards ac
Hi AC, I am glad that the comments on here have helped you come to an informed decision. I hope everything goes well for you. One of the side effects of high-dose chemo is mucositis, which is inflammation of the mucus membranes in the mouth, throat, and trachea. I suffered quite badly with this. I have been told by someone on here that if you suck an ice cube constantly for half an hour before and after the chemo injection, it reduces the effects. I cannot say for certain if this works or not, but I would suggest that you should give it a try. You should have a fridge in your room with a small freezer compartment.
Please keep us updated as to how you get on.
Onwards and upwards!
Regards, Tony
Thank you Tony for your reply. I have heard about the mucositis, I was told by the hospital that I should have an ice pole to suck, lets hope they don’t forget, I’ve had mouth ulcers in the past, they are really difficult, also a biopsy on my tongue, which meant I couldn’t speak properly for a few days. So hopefully as you say the ice will help.
Will keep you posted.
Hi ac
Im pleased to hear that the forum has helped you feel better about the treatments and that you are going to go ahead with the SCT. I wish you all the best for it and hope you have a long remission as a result.
Definitely make sure to constantly suck on ice. I fed dad ice cubes non stop during the melphalan infusion (despite his complaining!!) and he managed to completely avoid the mucositis thankfully! Keep us posted on how you get on xx
I would just like to thank everyone here for their support to me. Helping me to make the decision to have my Stem Cell Transplant. I feel I was very lucky and didn’t suffer from too many side effects. I took the advice of sucking lots of ice, that really helped. my mouth wasn’t too bad at all. I had some diarhea and also sickness. But managed it quite well with the anti sickness meds. I did end up with a bit of a rash, I think this was due to the anti sickness meds being given by a syringe drive, however as soon as this was removed within a few days the rash cleared up. I was very lucky to be allowed home on the 17th day. Continuing to improve at home and trying to build up my fitness levels again. Keeping away from most people due to the risk of covid or other winter ailments until my immune system gets back to normal. Hope this helps anyone waiting to go through this procedure.
It’s good to hear that you are safely over the SCT hurdle ac and I hope that it leads to a long period of stability when you can put myeloma to one side and fully enjoy life again.
By the way the side effects of the maintenance drug lenalidomide tend to be minimal compared to the induction drug cocktail, and there is evidence of the significant improvement in ‘remission’ times it can give us patients.
Sending you best wishes, Jane.
Hi ac, I haven’t looked in on the Forum for a while, but so glad to hear that you went for the SCT, and seem to be progressing very quickly. My husband is gradually recovering, but like you, we are keeping well away from other people at the moment.
Best wishes,
Lili
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