Hi John, had my sct xmas 2013 and currently still in remission – had velcade and dex for 8 months and got a vgpr. I was very gungho abut choosing sct even tho kidney gfr was 28% and making it higher risk – however survived and was back to full fitness/normal life in 6 months. If you are unsure there are some things you should explore which may help. Velcade/dex whilst good at knocking it down is not known for its long remission – I stopped treatment in July and the consultant was getting tetchy that a hospital hadn’t taken me in October in case I needed to resume treatment. Again it is all individual I was quoted 6 – 9 months average but the helpline said they had known cases of 2 years from it. What is your cytogenic profile? if you have no abnormalities and are low risk it makes the odds of chancing it and not doing it a bit easier. I am high risk which is why they decided to do it – and novel drugs do not impact my particular profile. Regards SCT remission is again individual but the average is considered to be 18 months – again some will go years and for some SCT is refactory. SCT made my light chains within normal range but did not touch the Minimal residual disease of .3. Whilst America question its use as 1st stage treatment we should always be mindful that they have many more drugs at their disposal and seem to treat it as individually as they can. Here we have a standard set of treatments to go through – regardless of cytogenics and current knowledge of what is likely to work best – and our drugs are not finite. SCT is known to deepen a response and velcade is not known for a hugely lengthy response. Wait til relapse for SCT? my husband wanted me to do this as I was so well at the time but they advised next time round I may not be in as good a position healthwise; the MM will have developed resistance to previous drugs (and when they harvest they don’t sieve out the mm cells!); due to resistance of previous drugs you may not be as low in numbers as you are now which means the stem cell harvest is potentially not as good. QOL? if you aim to get back to normal following SCt you will -may have to work at it for a while but you’ll get there. It’s unpleasant but doable. I liken the whole experience to childbirth it’s not nice to go through but once you are through it it’s soon forgotten. Do not underestimate, however, how SCT affects you mentally – not as much at the time but lots of people find a real dip after a few months (personally think its like post traumatic stress once you have come through one hell of a difficult time – no matter how positive you felt going through it. SCT is a real drain of strength on the whole family and how it affects them long term is not be underestimated but…. I would do it all over again if I thought it would give a good drug free period. When velcade relapses you will no doubt go through the maintenance drugs until they stop working/can’t be tolerated. Good luck with your decision and remember “run your own race” and do make sure the decision is yours alone. (My husband totally opposed the SCt – mainly due to kidneys – but I knew I did not want to be on permanent drugs if there was a chance to lead an unrestricted/less tired life)
Rebecca
Hi – I had a rash all over develop and was on piriton (which didn’t get rid of the rash for weeks) and this was attributed to allopurinol – well known for such side effects. Never had a red face but have heard that dex can do this but then subsides – not heard it with the tightness but when I had dex by the teatime my face had puffed up quite noticeably which I guess could cause the “tightness”? Good luck.
Rebecca
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, or even acknowledged, at the time but it sure is a focus now! My initial tratement was 40mg of dex once a week with a velcade jab – no breaks in treatment for 8 months. I think the 40mg just once a week you won’t find too bad as there is time to recover and enjoy some “free”/normal time before it starts again. Think the weekly option was considered more gentle than how it’s normally done where you have a 1 week break in 4 I think. I found velcade fine and only got really fatigued and some pn at cycle 6 (most do 6 not 8 sycles I think anyway). The worst bit was the injection site would go bright red and feel as tho a red hot iron was on it for a good night afterwards. Had it all on a Tuesday so by Thursday/Friday all was back to normal with me and got some good quality normal time. Best wishes,
Rebecca
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 ok and no rise in light chains which surprised me. He told me my immune system was that of an average person and when I asked why I felt like death n was constantly catching things it was put down to me working etc and mucking out my daughters pony (just the chest side of things)- which I was to stop. Around me loads of people have been catching things and unable to shake them off too so I think I’ve just been unlucky and it is not related to MM. Inevitably, as a consequence of MM there is a danger that we attribute everything to it when it isn’t really. For instance, I have v low kidney function also and when I play tennis anyone who shakes my hand remarks they are like ice – as they are – this can be a side effect of poor kidneys and I know people after SCT always say they are colder – but I’ve always felt cold and had icy hands and I have to remember this before I start blaming the transplant etc. It’s an easy trap to fall into and I think magnifies the constant “mental” awareness we all now have.
Rebecca
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. Good luck with it all – it’s particularly scary with little kidney function with the risk of infections etc but plenty have done it.
Rebecca
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 doesn’t last forever remember), a snuggly fleece- the rooms are very cold due to the ventilation system of keeping all germs at bay. Little pots of rice pud, custard, jelly in case you have a sore mouth or can’t eat much and want to keep trying bits of food. A count down calendar from when you go in – aim for 18 days to be in and every day cross the day off – a bit like a prison sentence. No matter how rubbish you feel per day when you cross it off and see you’re 1 day closer it’s a big lift. Just take it all in bite size pieces, a day at a time, 16 -18 days is nothing – the first few you won’t feel rough then you’ll get the worse bit and you’ll know yourself when things subside and you pick up – 18 days is nothing in the grand scheme of things and being drug free and resuming “normality” so just try and focus on the short time scale that it really is. I had some audio books and couldn’t settle to Tv etc and found them quite restful (did the Twilight saga!). Oh and a baby soft tooth brush.
Hoping you get an easy time of it, Rebecca
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 the champers on ice. “Do not anticipate trouble or worry about what may never happen. Now keep in the sunlight” (Benjamin Franklin). Please remember each one of us has a unique disease and no-one really knows what will happen – read someone has been in remission for 22 years from one treatment so go follow that Mr A*!
Rebecca
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 stage that can last for many years (and why should it not be so for you?), you are monitored so you will commence treatment before damage is done and you are young so you have more options than SCT – Allo – and you have the advantage that by the time you need treatment even more research and resources are at your disposal. You will see your kids through their childhood and adolescence. The people who post on here are a small number in the great scheme of things, most on treatment, hence the focus, some seeking support because they have undergone a number of options – the ones who are in very long remissive wouldn’t really bother to post because they are just getting on with life. I have met a lady in clinic who’s had it for 12 yrs I think CDT gave 7 yrs remission then something else gave 3 then velcade gave 2 and she was going back and trying an older treatment. I have read of a high risk of “aggressive” mm in remission for 7 or 9 yrs can’t remember which. Statistics are one thing but we are all individuals with a very individual disease so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?
Rebecca
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 too much hand holding required when home I was quite poorly after = following infection affecting the chest and a severe dose of S&D – but didn’t need nurse maiding all day – if your wife goes to work breakfast before work etc you’ll be up and about enough to sort yourself out with a sandwich during the day. There was a young guy on here called John who went back to work after I think 5 weeks, due to necessity, he lived alone and went through it more or less alone I think and I remember he said SCE was a “state of mind” and I do believe he was right – it is major, yes, but you’ve already been through major chemo treatment and I guess you’ve considered that to be “normal”. I am sure you have read lots of posts on the SCT experience and it’s not nice the nausea, the S&D, but it’s for a limited time – think your fine for first 3 days your generally over it when you are discharged 16-3 =13 days of unpleasantness – when you break it down doesn’t seem so bad after all. it’s all doable, treat it as a prison sentence at the end of the day mark it off a count down calendar – even if it’s been a really crappy day you will feel so much better knowing you have 1 day less to endure. It’s scary coming home, flying solo, and being scared of germs, germy people, door handles, money…your own shadow! but when nothing happens you do relax but still maintain a heightened hygiene routine that doesn’t really leave you (altho having said that I’m mucking out horses now and had mine last xmas). I thnk the big issue is what time of the year you have it done – I was in at xmas so the winter months were fraught with everyone having normal coughs colds etc which I viewed as really scary/serious and I could have but did not return to work after 3 months because of all the stuff going round. Wish I’d had it done in spring and sat in the garden recovering germ free but then having said that I was at full fitness to enjoy the sunshine months and going out rather than recovering. Good luck,
Rebecca
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 eventually take the toil of poor function. What it does mean is that I cannot wait for long when it comes back as my particular MM affects the kidney even in very small numbers and it also means strength of chemo/options are compromised and trials are out of the equation but..who knows what will happen I have lost the desire to focus on it all – overdosed on it and don’t want to go back there. I have to say, in reality, my life is exactly the same with what I do play a lot of tennis etc and don’t feel any different even tho I know I have underlying conditions. In a sense some of my QOL has improved in that I have reduced work and treat myself and make sure we have a lot of family time doing things – that is more of the focus now and I think if you do things that make you happy you will be in a state of happiness despite it all – petty differences never bother me now – so trivial in comparison to the great scheme of things – don’t get stressed over my daughters bedroom looking like a tip – I just close the door and then go in and do it all when it gets too much! things evolve in time, a lot for the better – and these are the things we can control. I have decided I am not at all religious now and intend to arrange my funeral some time in the future and have a humanist one! that’ll be a surprise for everyone! I knew I wsn;t religious when I didn’t pray to god aat he start of this journey and as I encvountered such lovely people and their families in the wards I wondered how people could continue with their religious beliefs but I’m glad you gat comfort from it.
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 time then. All the books I read were the listing you gave me to read and whilst some were heavy going I gained a lot from some – particularly liked the more scientific books which you recommended. I should have added on the list of “useful” things to try – meditation – but I can’t get the hang of it and swapped it for an exercise class which helps me more. Whilst on treatment I did find a yoga DVD useful for calmness and also the breathing techniques of it. I swear by the breathing techniques for things like BMB, hickmans insertion etc as it becomes so calming and anxiety just brings fear and heightened pain. I hope your next treatment goes well, fingers crossed
Chrissie, I know you will get there for the sake of your family and your own sanity – all early days. Yes, death is a certainty for all of us but never focussed on but now we need to take the good things from focussing on it ie. what’s really important in life – a day playing with your child or a day “bottoming” the cupboards (extreme example here!) and then blur the edges of the focus. Since diagnosis and ONLY because my kidneys are shot I have always felt that death sits on my shoulder but at the moment it sits there like an old friend and is quiet but I now always carry the burden of him sitting there but the quieter he is the less I notice him – but I am also aware that I am the one who wakes him up and I am the one who sootheS him to sleep.
Rebecca
