[karParticipant]

Thanks for your comments. It is such a difficult decision. As my husband is 70 this is the last chance he will have of having a SCT and if we don’t go ahead and suddenly he relapses we will feel gutted we didn’t give it a try. However he is feeling good at moment and if he goes ahead and has 6-12 months of not feeling good and it makes no difference then again we will feel gutted. I wish we had a crystal ball x

[karParticipant]

Hi
Hopefully you get some positive news. Don’t worry about the SCT. When we we told last year that we couldn’t have it we actually gained the time that it would have taken eg at least 3 months. There is nothing to prevent you having it at all later date if your kidneys improve

[karParticipant]

Hi m warren
My husband was diagnosed in October 2023 and was due to have a SCT in Feb 2024. Unfortunately because he suffered quite severe neuropathy from treatment the consultant decided he was too frail to go ahead with SCT. Anyway since then having been on no treatment his mobility has improved and life has got back to normal. We went on holiday and booked another. Then yesterday the consultant told us he could still have a SCT. This has thrown us. He is feeling so well at moment. Will there be any benefit. You say you have a worry re kidney function. My husband was on dialysis 18 months ago and we were told his kidney function might not ever improve. However following treatment it is now in normal range. It is a difficult decision re SCT and if you look on treatment page rabbit has posted a video re not having a SCT.

[karParticipant]

Hi Blondie80
My husband was diagnosed in October 2023 and it was a shock. He had always been very active and fit. I think what I found most difficult was that suddenly I was having to do everything around the house. There is support out there but you need to ask for it. We were given walking aids as my husbands mobility became quite bad.Make sure you do things for yourself as you definitely need a break. Life does improve and things do get back to a new normal and you appreciate normal even more.

[karParticipant]

Dear spk2021
Thanks for taking the time to reply. It is interesting to read you are on a trial. We were given the info about a trial but consultant thought it best to start treatment immediately and it would take too much time to sign up for trial. Anyway he is just starting cycle 2.
So what you are saying is it takes about 9 months to get through the treatment cycles and SCT.
Glad it seems to have worked well so far for you. Long may it last.

[karParticipant]

Hi
Really sorry to read about your MIL. It is difficult at best of times to get the diagnosis. My husband was diagnosed in October. He has just had his first cycle of chemo. Luckily his MRI didn’t show many lesions although he still suffers from a bad back. I hope your mum in law can start to get treatment. You can also get radio therapy to help with pain.
I hope she begins her treatment soon and can begin to feel in less pain

[karParticipant]

Thanks for your comment. It is great to hear from others having experienced the same.

[Author]

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