Hi David, My understanding is that by going onto a trial you have access to newer and potentially more effective drugs (not readily available on the NHS until results are proven by trials – even tho they will have been trialled in other countries/used by them) and by going on a trial you are randomised for maintenance therapy following SCT -…[Read more]

Hi Tom, seems like yesterday when I was following your journey. Great news, hope you are celebrating.

Rebecca

Hi Treakle, I hope you have gleaned from the above posts that life does go on, as normally as possible, once the initial treatment has sunk in and when you manage to get your head round it all – it is, however, a slow process to get to that stage. For me, (diagnosed at 51) the first few months were spent grieving for the loss of my old life,…[Read more]

Hi Craig, sounds like you are finally getting sorted and you are young enough to sail through SCT – had mine at XMas and totally back to normal now, for now!, you will get there too and it will move more to the back of your mind and I guess you may even have the allo option to mull over at your age. It’s quite a bummer getting it younger than the…[Read more]

Hi Jane, I remember your original postings, you worked in a hospice?, I think you were diagnosed after me but was racing ahead. I had my SCT at Xmas and came through, thankfully, unscathed. Wish I could swap hair as I hate the start of my new curls! I am so sorry to hear how tough it’s been but am glad you are still smiling and getting on with…[Read more]

Hi, this is a real blow when you have mentally prepared the route to take. My understanding, from my consultant only, is you must be in a stable position before you SCT ie. not rising numbers. Numbers vary from person to person as it tends the be the best numbers they can get you in but the one thing that doesn’t vary is the stability factor. I…[Read more]

Hi Stanley, I am quite sure once your SCT is over and you are feeling well, living life normally, forgetting what the hospital looks like, that you will revert back to normal also and start planning long term – it is impossible not to. You will feel so well and feel as tho you have your life back why wouldn’t you? I found after sct to be…[Read more]

Congratulations, looks like your last course could get you in complete remission – the best starting point for SCT. Think you’ll walk the SCT – now I’ve done it I’ve come to the conclusion that it’s treated as some really huge stage but I think it’s just another treatment – none are pleasant and some better than others but we all just grit our…[Read more]

Hi Nikki, that’s great news – had my SCT at Xmas and I never got sepsis either – guess they just try and forewarn you but I think in this game it’s better to just get on with it and see what happens as we are all different.
Hi Simon, Don’t worry about SCT – had mine at Xmas ( stem cells returned on my actual 52nd birthday!) back to normal, all…[Read more]

Hi Keith, Great news hope you are planning lots of celebrating. Take care,

Rebecca

Thanks Jill, This is so amazing that she has managed with such high light chains – my kidneys got killed on just 1120! I think it highlights to us all that we all have a unique and individual disease and we must remember this when reading literature. Everyone is so different – and sometimes in a good way. If I were the consultants I’d be…[Read more]

Hi Vikki, so sorry to hear your news – I believe remission is over when the numbers more or less doubles each time over 2 consecutive results – treatment starting when it needs to. I believe Jan had her levels rising well over a year+ without treatment so you can still perhaps get a long drug free time. Not sure what Colin had pre SCT but presume…[Read more]

Hi Rachel. Glad to hear you are transferring him to Nottingham – this is an excellent hospital for MM – I don’t go there but have read of others on here who do and get access to really good treatment and trials – think Prof Jackson? is the man to see. I went to Leeds for a second opinion and treatment there but Nottingham was on my list but…[Read more]

Would say thanks Kay but a bit disheartened that what I want is out of reach. I have spent far too long trying to research – and inevitably researching a lot of negative stuff in the process. Yes I would like access to this information though would probably read some it through closed eyes like watching a horror film! Annoys me as much as when…[Read more]

Hi David, Congratulations – you’ve cheered me up no end.

Hi John – have tried to log in the last few days but couldn’t, today it let me! I had the exact same dates/time in for my SCT this Xmas as you AND I had my stem cells returned on the 15th December – which is my actual birthday! I always remembered your posts during my SCT and how you said SCT was a “state of mind” and you are so true but I have…[Read more]

Hi John, Nice to hear from you again – hope you are super well – don’t think you ever posted your final SCT results? hope it did the trick.

Rebecca

Hi David, whilst I’ve been on the forum I have read of people always feeling tired long after 11 months after SCT – sometimes years – but I do wonder if we attribute everything to SCt when you may have felt tired anyway from often 6 months of enduring chemo and the effect that has on the body/mind. Lots of cancer literature speak of “fatigue” from…[Read more]

Hi, I had my SCT at Xmas and was told SCT deepens the response and therefore gives a longer remission – but no figures quoted – my consultant gave me a strange spiel of “I am sat here like a bookmaker…some people we think will do well and don’t and some people we think will do badly do well!” – we came out with the feeling that like with all…[Read more]

Hi Sharon, just wanted to say hi and don’t worry unduly about the SCT, I had an SCT over Xmas with a kidney function at the time of 28% egfr. SCt was not pleasant but doable, was worried about infections re kidneys but all went ok – a few ups and downs – and am now back to normal in all aspects with a slightly better kidney function after it…[Read more]