Hi Richard, sorry to hear you are back on treatment that’s a real bummer (understatement). I had my SCT Dec 2014 just before you and dread the day of treatment again after being treatment free. I know the SCT didn’t do what it should for you but statistically only 50% of people get more than 18 months remission from Sct- not a fact I focussed on,…[Read more]

Hi Vanessa, I am 16 months post SCt and for last 2-4 months only- since SCT – have had a cold/cough/chesty etc. When I went for my bloods 3 weeks ago it was a day where I had a temperature, felt dreadful like I had flu and thought this would be reflected in my bloods and light chains. When I saw the consultant my bloods were good, neutrophils etc…[Read more]

So sorry to hear this news – he was very generous in spirit, optimism and support which I guess is why this is seems so out of the blue. Condolences to you all.

Rebecca

Hi Amanda, don’t come on here much now but just reading and note you are going into SCT with kidney failure – I had mine Xmas 2013 with a gfr of 28 and it didn’t impact on them (negatively) at all. Had it done at Leeds and they did say they have had a patient on dialysis who came off dialysis after SCT when the myeloma burden had been reduced.…[Read more]

Hi Andrea, All the best for Sunday – I had mine over Xmas 14 months ago and don’t come on here much now – just enjoying the remission/calm I guess. There is plenty of advice if you search under this topic but things I would take:- cheap packs of underwear from Asda or primark to throw away – I’m sure you’ve heard of the S&D time (not nice but…[Read more]

Hi Stanley – Congratulations looks like Xmas has come early for you. Fantastic results – top of the class – believe its only 5% who manage SCR so you’ve passed your most important exam with flying colours! With a Stringent CR I am sure you can lock this away and get on with life with a bit more of a spring in your step. Great news hope you’ve had…[Read more]

Hi Richard, Just wondering as people do mention shortness of breath – do you know what causes it? as I’m not sure but are you treatment free for now. I know some get it with velcade but I never did but have heard it crop up a few time now.

Rebecca

I am truly sorry to hear this news and hope you can carve a new/different life for yourself and family whilst holding on to all the good memories. Life is so precious and is for living – so I hope you eventually manage to live it large – for the both of you. Best wishes n cyber hugs.

Rebecca

HI Mike, I totally agree with what you are saying and wondered how you see it panning out for us now with the change of criteria for usage/and the Cancer Drugs Fund changes? Been mulling this one over reluctantly as a lot of patients are excluded from trials due to various reasons.

Rebecca

Thanks Chrissie, you are giving your children the best possible childhood and that is being swathed in love and stability and if things change in the future then they will cope because they will have a deep sense of love and worth and grounding that will see them through any tough times. But don’t be too pessimistic you are at the smouldering…[Read more]

Hi Bernard, I was 51 at SCT and I really think you will sail through it and your recovery will be quick and easy – don’t underestimate a “youthful/fit” body in the SCT equation – expect you’ll be out in 16 days. I was told afterwards 3 weeks is quoted so people don’t get disheartened etc and was told 18 days is the average. I don’t think there is…[Read more]

Hi Chrissie, sorry a tad exaggerating about my kidneys they are at gfr 27 so I have a little bit to play with but it does mean infections or pneumonia are much more serious and could wipe them out – it will be the kidneys that get me I think not the MM. I am not on dialysis and they do not appear to personally affect me yet tho’ my body will…[Read more]

Hi Dawn, I know what you mean and did say it is now only as results are Ok but I am expecting a blip and feel quite calm about it. I have always believed, more or less, that your when your number is up it has always been pre-ordained. I was told (later) I was a day away from death when I was in hospital on diagnosis and so I feel that wasn’t my…[Read more]

Hi, I’ve just been reading this thread and actually smoulderers are, I feel, just like MMers but in a longer remissive state as we are all on watch and wait but MMers have been on some treatment and I think tend to just look for “time not off treatment” period when you feel well and can enjoy life. I was diagnosed 2 yrs ago, SCt last xmas and now,…[Read more]

Hi Julie, remember everyone is different and I seemed to have constant nausea and sickness whilst in even tho they will try a range of meds to stop it – some people just get it a bit – think I was in 16 days came out the 28th dec and remember feeling well/turning a corner on xmas day and really enjoying my dinner and was fine on discharge but once…[Read more]

Hi Julie I had my SCt at Xmas last year – had my 52nd birthday in there to boot – as always how you respond to SCt is very individual and depends on complications I got an infection as soon as discharged which caused about a 6 week delay to feeling better I would say but when you “turn the corner” you know and you can function ok – altho I had…[Read more]

Hi, sorry no-ones responded yet and not sure I’m much help on this. I had velcade n dex weekly for 8 months and other than the round face I did not put on any weight at all. The nurses expressed surprise at this as they said dex gave you the munchies and it was almost impossible to resist eating a lot more. I never did start the munchies and…[Read more]

Hi fozz, I am sure you have read that people can be diagnosed from recurrent infections (from compromised immune system) and you could be putting two and two together with a painful rib and coming up with MM but if it was me knowing what I know now, bearing in mind I believed a labyrinthitis diagnosis for months, I would be at the Doctors…[Read more]

Hi Magic, just thinking about you and thought I would just post some quotes to consider (I like motivational quotes and they inspired me a lot when in treatment)

“Life shrinks or expands in proportion to ones courage”

Winston Churchill “If you’re going through hell ..keep going”

“The moment you’re ready to quit is usually the moment right…[Read more]

Hi Jeffery, long may your results continue. To be honest I do not think SCT is the be all and all now – as perhaps it was a few years ago – when drug options were much more limited, and you needed to take the plunge, but nowadays you can debate either way as there are new drugs coming up which are much more kinder to the body. At 52 I felt I…[Read more]