This topic contains 6 replies, has 6 voices, and was last updated by 
Hello,
this is forum has been both a godsend and quite scary at times but invaluable to me. My mum was diagnosed around April with multiple myeloma. She has just started cycle 3 of CTD and she is handling it with such grace and dignity. We were told yesterday she will be having stem cell in Sept!! We have barely got to grips with her having this condition and it all feels so fast that she will be having stem cell in 2 months. I have various anxieties about SC – the forum has been great to read everyone’s stories. I understand this condition is so unique and individual, I am so worried about how my mum will cope with SC and all the side effects it can have. Can anyone offer any insight into SC please as I really do not know enough about it.
Thank you,
Hi there Sarah, I had my SCT at Xmas – I am 52 – now fully recovered from it all with no issues ensuing. The process you can find in the docs in the information section and you can search under SCT I think “buddies wanted” will give you postings from some who were going through it earlier this year. There are lots of postings on this subject. MM is very individual and so is how you/your body will react to SCT – I have heard someone who had CDT say this seemed worse than the SCT process and the “high dose” chemo, for me/many, was an anti climax as I didn’t feel any different/effects until all bone marrow had been wiped out. SCT is, I guess, major and mentally we see it as a huge hurdle/burden also so you have 2 things to contend with – the physical side effects and a real mental low – not a good combo. Until your stem cells graft I think it’s a given that everyone gets S&D – to what extent is individual – you will be weak and have the added anxieties of worrying about catching an infection – most of us are told its not the SCT that will kill you it’ll be an infection. Someone once told me SCT was a mindset and you really do have to overcome that, for instance, I am a very strong person but was gradually crushed by lots of nausea and S & D that seemed constant throughout my waking hours as I recovered. I felt too weak to keep trying to drink/move/get up and get a drink yet when the need arose I ran to the toilet like a whippet out of a trap! – so was I too weak to do things myself etc or was I mentally too weak due to sustained illness? as I could sprint like a good un and it was only when this was mentioned that I thought about it and knew I could do more but mentally had been worn down. I thought I would sail through SCT with a strong, no nonsense mental attitude but I didn’t until I could feel a bit better. I’m not knocking me as I had to have units of blood after as I was severely anaemic, very low blood pressure then I got a chest condition and really bad S & D but mentally it wore me down as there was little respite – this so surprised me. In all honesty I wouldn’t read too much about SCT except tips on what to take in with you/what to do with the time and just wait and see what happens – some sail through it I guess due to little side effects and some get bogged down with one thing after another – it is highly unpredictable. I started recovering well after being out about 6 – 7 weeks and never looked back. I think it is like childbirth soon forgotten by the patient when you start to recover – the rest of the family, however, appear to stay mentally scarred for very much longer as it is very harrowing watching/the thought of a loved one undergoing such a process. What everyone says, and it is so true, is that its not pleasant but it is doable and it is for a short period of time. All the family should have lots of treats pre SCT and pre the slog of it all and it should be all back to normal by Xmas – although you will then be very mindful of winter germs/bugs – another worry. From a patient point of view I would say the family MUST always hide their worries and concerns and be forever positive about everything and.. not play nurse maid too much when back home and assist your mums recovery – like every recovery – by helping her help herself. It is not going to be easy but then nothing to do with MM is but you will come through this and then put it behind you all and get back to normal living for, hopefully, a very long time . Good luck with it all and do try not to worry remember when it all begins that “worrying does not empty tomorrow of its troubles, it empties today of its strength” – something you will all need. Best wishes
Rebecca
Hello Sarah,
I am 71 next week and had my SCT on the 25th June. I was told to expect to be in hospital for 3/4 weeks and was out in 2 weeks and 1 day. As Rebecca has mentioned it is difficult to prevent your mind getting the better of you and feeling low. I was fortunate apart from the incessant jog to the loo and a slight infection cleared up by anti-biotics I had little else. The change from being rock bottom to the blood results improving along with my mental state was remarkable and changed within 3 days or so. Apart from easily getting tired I feel well. Since leaving hospital my only worry is my Neutraphil readings have dropped from 1.96 to 1.26 and then 0.98. I’m off tomorrow for my next blood tests hoping these readings are on the up again.
I hope your mum copes well with it all. Best wishes for the future.
Hi Sarah, I had my SCT when I was 68, now 18 months later I feel great. Do tend to get a bit tired and need to nap, but that could be age and the desire to keep doing things. I walk my dog across fields and woods for a couple of hours every day. Bits of gardening and DIY. As John and Rebbecca have said each individual is different but the SCT is very doable. My family are/were great, helped and encouraged me all along.
I was in isolation for three weeks, it took about 6 further weeks to get up to strength, and I went on from there. I am on myeloma XI drug trial, but opted for no maintenance drugs, so am drug free and on three monthly clinic visits.
I reckon the worst bit is having to have all of my baby injections again!
Wish you and mum all the best
Regards
Tony F
Hi Sarah
I am 6 months post SCT and in complete remission. The best advice I can give you is don’t read the horror stories and encourage mum go into the process truly believing it will work and all will be well. Maybe I was lucky, but I was out in 2 weeks and had no infections. Yes I had the terribly painful oesophagus, nausea, vomiting and diarrhoea but it passes and just like childbirth, you forget the worst bits. I am one of the patients who found the side effects from the initial treatment with the CDT worse than the transplant!
Carol
Thank you all for your replies. I have taken comfort in them. I have a meeting with the SC specialist on Tuesday to voice my concerns and hopefully have a greater understanding of what to expect.
Hi to all. I have MM and in my 5th cycle of CDT and being offered SCT after. All your experiences have given me encouragement and will go with it. The section on how to get through and what to take is interesting and will help. 3 cheers for phones/laptops/kindles etc. Thanks to all
The topic ‘All too fast!’ is closed to new replies.
