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 Karen

Don’t want to hog your topic but thought I’d just let you know my latest.

I had a phone call from the physio dept regarding the xray I had last Fri. Apparently they now want me to have an MRI coz the xray showed a Lumber 1 disc fracture, and possible osteoporosis. So now I’m back to worrying seeing my pp’s went up to 36 on my last…[Read more]

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

Thanks all for your replies.

I’ve been to physio today. She feels this back pain is caused by arthritis but has taken xrays to confirm, so I am feeling a bit more confident that the cause while show itself. I’ve got to go back in 4 weeks for results and to see if the exercises she’s given me are working.

Keep well all of you

Susie

Hi Karen.

Thanks so much for your reply. My pain is only present when I move, which I assume is mechanical pain from my arthritis. When sitting or lying I don’t have any pain apart from my hip, which wakes me sometimes. Once I move position it goes. So I assume my pains are down to arthritis. I just wondered if the pain they talk about is…[Read more]

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]

Hi Helen, Just wanted to say love your latest 2 fabbie photo’s, is 60 the new 30? Is dex the hidden beauty treatment that nicely plumps up and smooths out skin? if so, let’s keep it to ourselves eh?

Rebecca

Hello David. Welcome. I’m sorry you have found yourself needing to join this group, however you will find a super group of people and lots of support.

I don’t think I am wrong to say that Macmillan can help you with financial advise and what you maybe entitled to. Give them a try.

Meanwhile I do hope things go well for you

Susie

I’m at a very small hospital but it was done as standard so am surprised hospitals differ so much. Are you having the SCT at another hospital? as my understanding is it is done again on the 100 day BMB. I have not asked for my results of this (the SCt did not remove my MRD which remains at 0.3%) as I am not eligible for maintenance so it will only…[Read more]

Well my understanding is the FISH analysis is done at the initial BMB so the results are there and you could ask for a print or ask your consultant to explain the results – and he would. As you know my consultant wasn’t particularly truthful about it but to be fair not many people seem to ask/know their cytogenics in the UK. Did your consultant…[Read more]

Hi Stanley, That’s great news – congratulations – with these results all bodes well for SCT. You must be well chuffed. Enjoy.

Rebecca

Congratulations, knowing you’ve a date makes everything go so much quicker. I think it is wise to wait a bit longer and go home with less chance of going back in. I have never spoken about it but did a very stupid thing when I left hospital. The day after going home I had a temperature and was hell bent on not going back in – I hated absolutely…[Read more]

Hi Jane

Yes I did have a bone marrow biopsy when I was first diagnosed, so thats 2 yrs ago. It was 2-3 %
so well under the 10% mark for smoldering as I understand it.

Quite frankly its not the disease I dread, its having my life taken over by hospital appointments, doctors and treatment. That is what would drive me round the bend.

I hope all…[Read more]