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
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, just like you – but with less odds – on wait and watch. I know how difficult this is, especially with dependant children, but if there’s one thing I would like to pass on to you it’s that this is a lifetime commitment now – you’ll never reach a conclusion when you are not on “watch” and so you must train your mind to cope with the enormity of it all to lead a happy life. MM needs to be shut in a box most of the time and you can achieve this with time and practice. We all get through this in various ways I have always used exercise and to a large extent total denial of it – I have kidney issues and so when diagnosed just told everyone it was the “kidneys” and I only told my parents and sibling 1 yr later as I went for harvesting and SCt and I knew I would be away for a while and lose the hair! I only ever talk about it on here now and I like to keep abreast of news/treatments/experiences to store for future use. I went to some mindfulness lectures from a Buddhist which proved very useful and tho wasn’t earth shattering just reiterated common sense – live in the present – we all choose how we feel and react – emotions are internal to us so you can choose to be “down”/worry etc and ruin your own day or you can choose to be “happy” and change what we are in control of and accept/come to terms with what we can’t. I know this is easier said than done and I am not doing a Mindfulness course justice at all but it really did help me regain peace and train my mind much more and I believe Drs can refer you to such courses. I think, how we react to things affect the whole family and so we can create much anxiety or calm. After SCT everyone became on tenterhooks on my 2 monthly tests – I told them all was OK the first testing but slowly told them I wouldn’t be making a big deal out of it with announcements every time as it is just something that has to be done from now on and I would just get on with it – wouldn’t be secretive tho. So if I see them after an apt I may mention it casually that all was well as tho I’d been to the dentist. I also stopped telling my husband “it was time” as he gets very anxious and as I am well and act well over time it has now become an insignificant part of everyones life. Even I don’t worry now as I don’t want to waste my “well” time on negative things that I cannot alter I judge/worry based on how well I feel and that is my gauge. I do not really have any discussions about it – except on here – as I think doing so with loved ones brings them unnecessary dark thoughts. Obviously all of the above is on a watch and wait scenario where tests come back ok. I know from your posts you put on a good front for your kids and family but you can train your mind with discipline for it not be a “front” and for it to nearly always be your state of mind. Now is the time to invest in methods and techniques of the mind to stop the inevitable inner turmoil and this will put you in good stead if you need treatment when the inner turmoil steps up a few notches. There are lots of good interesting books out there relating to mindfulness, the mind influencing the body etc all good stuff. I come on the forum a lot so I do still think about it but I have lost the anxiety of it all – I used to come on the Forum anxiously looking for information/reassurance etc and now I look just “out of interest” as tho I’m keeping abreast of current affairs only and that has been a massive leap for me. You are right when you say life on the edge of a precipice but if you live on the edge constantly the fear naturally diminishes and the usual complacency of “oh well,what the hell” will eventually come also. This is the biggest mind game you will ever play so we should all be smart and invest the most resources in the mind – this will be the deal breaker. Be kind to yourself, stay out of the shadows and in the sunlight – it is said a minute of worry is a minute of lost happiness. This condition helps you focus on what’s important in life – never done so little housework and never enjoyed so much “me” time as I do now (would of course swap it back in a heart beat!). Take care,
Rebecca
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 I got an infection which dragged me down I got really extreme S&D also that lasted a while but if all goes well for you you should feel fine on discharge and continue going upwards. I think I was just unlucky getting a couple of things that was a bit debilitating – without it I believe I would have been up and about and absolutely fine really early on.
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 setbacks think I was making dinners etc shortly after – I suffered a number of setbacks and sickness was the main one that prevented a very early recovery. I think without the infection then onslaught of stomach bug would have been fine in a couple of weeks. At 3 months could have gone back to work but decided to stay off for 6 months for 2 reasons – winter season of germy people at work and I wanted some “me” time to get full fitness back – was playing tennis at 3 months, brisk walking etc and was at full fitness, as tho nothing had ever happened, at 6 months – doing 20 mile hill walk. I have just read your posts and note how young you are so recovery will be no problem at all – will be speedy trust me. I also note you had high level of light chains on diagnosis with little impact to your body – this is a good indication you can manage well with MM and with lots of treatment options available to you. I would add, however, after SCT and recovery my mood went considerably down for a while and I thought it was because of living with the uncertainty of it all – but it wasn’t – it was because on treatment and leading to SCT I worked on mental attitude and living in the present, not going to the dark places etc but after SCT I thought life would go back to normal, work, etc as tho it never happened but this made it worse. I now know this is a life long commitment so I went back to al the things that helped me remain positive and happy throughout treatment. So just be aware to keep doing whatever you are doing to make you feel positive now forever. You have such a lot of options going for you with youth on your side I am sure you will with the people who benefit from a long list of future discoveries/treatment. Good luck
Rebecca
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 continued to exercise throughout but the dex does inflate you I could visibly see my face bloat on the dex days then go down a bit but in the end it inevitably stayed round throughout treatment. So as with everything MM guess everyones different but think a lot of weight gain is probably the norm for a combination of reasons.
Rebecca
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 demanding tests ASAP specifically for MM. Some people do experience weight loss with MM and is often their first sign of a relapse – I have never lost weight with it – tho as you have had pneumonia and a kidney infection would you not be inclined to lose some weight due to feeling too ill to eat at times? At one time I would say at 44 MM is a real long shot but I was 50 and since then have heard of very young people being diagnosed. The raised iga would probably be expected when fighting an infection ( how much raised I do not know). I think you have sufficient concerns/symptoms to demand/request test ASAP as well as an xray initially on you rib. Hopefully, it will be a lot of coincidences but, if it isn’t, you want to be diagnosed and monitored ASAP in order that damage to the body is minimised. Don’t take no for answer, learn to be assertive now, it will put you in good stead. Have you had any night sweats? It is good that you are not burying your head in the sand and I wish you good luck and hope it is just a series of coincidences but better to check it all out ASAP.
Rebecca
Rebecca
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 before a miracle happens. Don’t give up”. (Well I know none of us believe in miracles now but I guess there are lifelines)
and always remembering “Hope isn’t a strategy but its one hell of a motivator” and that “hope is independent of the apparatus of logic”
Good luck tomorrow I hope you get the answers you need,
Rebecca
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 needed the option to span things out as much as possible and, for me, recovery to full health and fitness was good. SCt is still classed as the “gold standard” but I think many years down the line it will be considered quite crude. I was told by my Dr that years ago cancer patients were given the same high dose chemo (wiping their immune system out) but no stem cells were returned, like now, and they all tended to die of subsequent infections as they had no immune system! now that seems brutal to me and I think it was only 30 yrs ago (can’t remember for sure). I wouldn’t want my mum or dad to go through a SCT at 75+ with the new drugs on offer nowadays as I would feel their recovery time would be so much longer and that perhaps the quality of life would have irretrievable suffered in the process – but then my parents are not fit and robust to start with. Good luck with it all
Rebecca
