Hi Graeme, sorry no-ones replied as yet I guess its because this topic comes up a lot – I had mine last Xmas in Leeds and there was a thread under Buddies wanted where a few posted there experiences but I have just searched for it to check its there and nothing came up? am sure if you search under SCT you will get different views. I tried to read up on everything and prepare but to be honest no 2 peoples are the same although I think what is common to all is the nausea and S&D. Everyone will say suck ice when you get the high dose for 20 mins etc to protect your mouth but they’d run out of ice when I had it – and I never had any problems with my mouth? The room was absolutely freezing (bearing in mind you are severely run down) which they said was because it sucked out all the germs etc – so a fleecy throw was needed and warmer clothes. I felt too rubbish to watch tv, too rubbish to read books, but I did enjoy CD talking books to listen to whilst I wallowed. Nausea for me was a huge problem but don’t think there are any tips for that. They say the average person is in 18 days so I had a count down calendar and felt great every night I crossed off another day as its important to remember whilst it is horrible it is not for ever so, no matter how I felt, crossing off another day was a huge psychological lift. People said eating can be a problem so I took in little pots of custard, jelly, rice puds but never used them – but I had no mouth/throat problems they might have been handy if I had difficulty swallowing. Until the HDT takes effect you will feel absolutely fine it’s only when it starts working that you go in a decline I think about day 3+- this surprised me I expected to feel awful as soon as I had it. They say walk around as much as you are able and try to be active – it helps with lungs and recovery but every time I moved I felt so nauseous that I just laid in bed the whole time and was only on my feet to go to the bathroom – others tho have used exercise bikes in there and am sure this would help recovery – again it is all so individual. I often didn’t like to talk on the phone and act all jolly so I used to keep in touch with people via text I know a lot have found skyping their family very good/ a boost and this may reduce visits if you don’t feel up to it. Through out you are very closely monitored and once you hit rock bottom and neutroprenic you may be given bags of potassium, platelets etc dependant. This is when you worry about a raised temperature and infections but they are quickly on top of it/ever vigilant. Think about day 10 you start feeling a bit better every day, stronger and you know you’ve turned the corner. Sorry this sounds like a ramble just typing as I think back (not something I like to dwell on even now) As with everything in myelomaland you may sail through it or you may have a rough time no-one really knows the extent of each symptom for each individual. I thought I would sail through it but mentally, the constant nausea, wore me down. I always liken SCT to childbirth – it’s hard at the time but once done it’s soon forgotten. SCT was certainly not the horror story I thought it would be but it was unpleasant to say the least but as everyone says it is totally “doable”. Before SCt you will be harvested this is the easiest thing a few jabs to get the old stem cells boosted – this may give you pulsating pain throughout your body (too many crammed in the old bones) but paracetomol does alleviate it. Harvesting is quite interesting and pain free – your blood comes out goes into a machine to extract the blighters and then it goes back in to your body. I had a femoral line in for harvesting but a lot seem to have a line in both arms. I liked harvesting it gave me a huge psychological boost as it was easy and you are one step closer. Back to SCT – unless you are carrying excess timber that you don’t mind losing I’d enjoy pigging out for a while as most people lose weight – again some more than others but I think 10lb + would be an average? It’s along time in hospital but most of the time you may not feel like doing much – some take in box sets, books, laptop. Think I may have liked to do a jigsaw might have been therapeutic and not very taxing. Hope you get some more responses, it is difficult as everyone seems to have a slightly different story other than the nausea and S&D and to some its debilitating and to others a mere hiccup. I would just say brace yourself, expect the worst and anything better is a bonus. Soon you’ll be on the other side of it and that’s a very nice feeling. Good luck
Rebecca
PS Would I do it again – yes without a second thought!
Hi Sharon, glad you’re looking for a weekend break – as time went on I “treated” myself each day – nothing major maybe making the effort to meet for a coffee etc. This is a hard time (understatement) so always be kind to yourself. I think it’s also worth recognising as being newly diagnosed you have all the emotional toll of that – which would give anyone sleepless nights – as well as the treatment that’s why I think as it sinks in it’s gets easier – short term anyway. If you were fit before I would try and resurrect this as exercise was the only thing that kept me sane – long fast walks, loud escapist music blasting and if you read any of the cancer leaflets they say to try and exercise when you feel fatigued because it actually gives you a lift of energy. There are many on the US Myeloma Beacon site who exercise throughout no matter how tired they feel and all say they come back feeling re-energised. I craved normality so exercise, as with you was part of my normal, it always gave me lift and in the end, you will get more tired as cycles increase, because I refused to give it up I slept so soundly on dex because I was just so exhausted. Mentally it helps tremendously and I think it helps your family see you doing what you always did – if you’re still doing what you always did there seems less worry for them. You cannot fight disease biology – you just take the treatment and see if it works – the real battle in this is fighting for your normality -your way of life – don’t give anything up without a fight. Aim to go into SCT being as fit as you can be and this will aid your recovery tremendously. I had mine last Xmas and am back to normal fitness physically but its a slog so the more you do now I think you will reap the benefits later (and now). with regards to hair loss I have just ditched my wig 2 weeks ago – I had 6 wigs from last October to now – all the same style – highly natural and expensive – I chose to match my own hair/style and it was so good nobody knew but I had to keep replacing them as they were shoulder length and whilst my wigs stayed in fantastic shape I had to keep replacing them as the backs went quite quickly (ruggish) where they rubbed on coats/clothes. If I could do it again I would have cut my hair short whilst on treatment so I could then have a similar short wig and would have saved myself an awful lot of money – I used the Natural wig co and always wore what they recommended underneath for day to day wear and for exercise. Wigs were great – always looked great and you never had the bother of having to do your hair just pop it on and good to go. I always kept 1 for best so that it was in pristine condition. Make sure you prepare well in advance of losing it as it makes you feel less anxious about it when the time comes.
Rebecca
Hi Sharon, I was 50 when diagnosed and have stge 4 kidney damage. I was on velcade/dex for 8 months pre SCT. Dex was all the things you say but I had only had dex once a week so had time to recover from it for a bit each week – I hardly slept at first but used to work nights so can function on very little sleep and my consultant said my kidney damage made my body more difficult to cope with it. After the first 3 cycles or so I got used to the pattern and my body adjusted accordingly I think and symptoms seemed less – tho still horrible. I drove throughout but often wondered if I should and used to meet people and have 3 conversations at once at very high speed without listening to any of the answers!- which we all found amusing at first.Eventually I learnt to manage it by not going to work on dex days/nights and avoiding new people on these days/have more alone time- burnt off the energy with exercise/chores – learnt to realise my “down” ever so weepy days and do more “happy treats” – the downers were the only things that got worse over time. As cycles wore on I became very fatigued anyway but continued to exercise so even on dex days on the last 3 months I slept soundly the moment I closed my eyes. I think your first 2 cycles would have been your worse anyway until your body/mind adjusts so hopefully with the reduced doseage as well it won’t be half as bad when you resume. It is important I think, for normality/family sake to recognise the cycle of “abuse” and have in place coping mechanisms for each mood swing – how best to utilise each of this time with minimum adverse effects. Housework in the middle of night felt quite satisfying in the end.
Rebecca
Hi Linda, I had my SCT at Xmas (literally) at St James (really hated the food and the freezing room) and it never really did much more for me MRD was the same as before at .3% etc. I was in very good partial remission hoping the SCT would get me SCR but the gamble didn’t work. I wasn’t on a trial so ineligible for maintenance but discussed maintenance with Prof Cooke who made me see maintenance as 1- taking drugs/effects/prolonging treatment when we all want a drug free period 2- it could be viewed as using up a drug before you actually need to use it. Most people never get SCR most people get VGPR and dependant on how your MM is with you this can give you long remissions. There have been people on this site who got SCR but it only lasted 2months..1 year..think Tom was in SCR and is just posting thinking its back after 14 months so…who really knows – this is an individual disease and each of us will not follow the pattern of the stats precisely. When you relapse you will be given maintenance then to keep it at bay so try and enjoy a break from it now. With regards to feeling down look at the post in the under 50s category Life After Transplant and there is a much bigger sharing of thoughts on the Myeloma Beacon US site. I think you will find these posts very helpful and give you thoughts on how to move forward. I have had to work at my mental state these past couple minds with the same discipline I had when undergoing treatment and now feel I have climbed up what was a very slippery slope.
Rebecca
Rebecca
Tom, sorry I have no advice and sorry it’s back – guess all I would say is regroup mentally and prepare for the next round – were you on maintenance also?. 9 months post SCT and think my figures are not as good as could be but not alarming. I have started a meditation/mindfulness course as I feel I was strong during treatment/SCT, but do not feel I have the same strength of mind for another round just yet so I am working on my mental state to make me feel as strong/confident as before. I know you have your own mental strategies but would suggest you “brush up” on any lost discipline that seems so easy to lose when in remission. Am sure you will seek different consultant opinions to formulate your plan as you will have multiple choices at your age. Best wishes
Rebecca
Thanx Ali, have just ordered some off ebay – am a bit loathe to cut what l ittle I have but will bite the bullet to get rid of this tight perm look. Rebecca
Dear Eve, so sorry to hear this news, you are both troupers and I hope you take great comfort in the knowledge that you could not have done more for him and eased his passing so fantastically well. You have helped so many on here with your postings, including myself, that please do not feel you can no longer contribute on here as you have a wealth of experience and good advice that can help others on this awful journey. I hope you are able to soon apply your no nonsense attitude to ultimately forging yourself a new and happy road to follow as it is time to concentrate on yourself now x
Rebecca
Ha ha – yes some vain people will try anything – but it doesn’t do much for the hair. Walking outside sounds fabulously healthy but entering a shop ? maybe meeting strangers/germs! and hope you wasn’t thinking of buying a paper and touching dirty germy money?! hasn’t your wife took it all off you yet as it’s not good for you? Walking outside is good for measuring distance tho’.Think the people on my Close thought I was a lost soul as I liked small circular routes to begin with and in case I felt funny – but probably just looked funny.
Hi Stanley, good to hear your still in one piece tho’ no doubt a bit slimmer! The memory of it all goes very quickly but reading your post reminded me of how dire constant nausea is – I hated the mornings when they made me move out of bed to make it as any little movement seemed to trigger off sickness – nausea never went at all. Don’t know how common this is but I had really really bad sickness (and the rest) some 2 weeks after being home which floored me again. But now your home concentrate on recovery and moving as much as you can – altho people say listen to your body – which you must – I also feel pushing yourself a little bit more each day helps you quickly regain fitness levels. it doesn’t have to be much at first as just pottering about the house is a big step after being in hospital doing nothing. I know when you first come home you feel fragile and somewhat vulnerable so it is easy to not do as much as perhaps you could – especially with all the fuss and special attention you get! – but the sooner you set your sights on fitness and recovery the sooner you’ll be over all this. Just make sure that each week you are moving forward and set goals (nothing major) to monitor progress. I found when I came home I walked like a very elderly person. very slowly, and it even took a lot of effort to pick up the pace back to a “normal” pace. Your body has taken a real battering so be kind to yourself but not too kind. (I say this in the knowledge that when I had my bad sickness again at home I could barely lift my head to drink water let alone go and get a glass of it but when I was about to be sick I instinctively dashed to the bathroom like a greyhound out of a trap- so I could move and do things if I wanted to badly enough but I think I was mentally drained. When I realised what I was doing we resorted to tough love and I banned everyone from fetching and carrying and low and behold I could do it myself – the point is just moving about, up and down stairs etc is all exercise/movement in the grand scheme of things and every little counts when you want to recover quickly). I only say this as I know you are young enough to want to get your fitness back quickly. Best of luck,
Rebecca
HI, just type in Deborah bone blog in google and it’ll take you straight there
Hi there and sorry you’re here but what’s done is done and you can only look forward now. I thought it was a cruel blow being diagnosed at 50 but at you’re age it just beggars belief. At Leeds I was told their youngest patient was in their twenties and contrary to what you may think getting it younger does not mean it is anymore aggressive it’s more bad luck. It sounds like your Dr was on the ball as being so young you would more than likely have otherwise been diagnosed at crisis point with ever lasting damage. I guess the positives you have is your age and fitness and whatever route you take you will always have the allo transplant as back up which could be curative but, as with everything, is not without significant risks. I am sure you will sail through chemo physically but MM is a real mind game as the “battle” is never won you just get to stalemate. So I guess I would advise work on your mental strength strategies and mindfulness as this is what will really get you through it. Exercise got me through it (first round only) and always remembering that “worrying does not empty tomorrow of its troubles, it empties today of its strength” – mental discipline is the key to not letting this ruin your life so stay strong and positive. What chemo are you having before your SCT?
Rebecca
Hi, you may find Deborah Bones blog interesting as she has had dt-pace quickly followed by a recent SCT and you may find it useful/comforting that she is coming through it all OK tho it hasn’t been a walk in the park,Fingers crossed.
Thanks tony, yes I think that’s the only solution after researching the net the only way to get rid of chemo curls is lop em off – however I have waited so long for 2 1/2″ of hair this is yet another cruel twist and cannot bear to do it until its much longer. Thanks
Am sorry you are here and unfortunately you have just had a taste of how myeloma world works. From what you say I gather you have mm but currently display insufficient symptoms to warrant treatment – this is good – and you will be monitored periodically to ensure that the moment MM becomes problematic i.e likely to cause bone or kidney damage you will commence treatment – this is good also. As you read up on MM you will note some key points – it is incurable but treatable so your life will now be a roller coaster of remission and relapse in the knowledge that treatment options are not finite and are limited as the cancer becomes immune to each new chemo drug you use. So, no treatment now is good – save the sweeties in the jar until you actually need them and enjoy life without chemo treatment and their inevitable side effects. Be comforted that you have not been diagnosed at crisis point i.e. kidney failure or broken bones and that they will not let you get to this point – so already you are in a very good position to fight this. You can be asymptomatic for a long while so ensure you make good use of this time for travel etc which is likely to be curtailed when on treatment. This is huge to take in and will take a very long time, if ever, to get your head round it. Normally, I would say to newbies to learn what you can about it, use this and the US myeloma beacon site for information, but as you are only being monitored at present I think I would just try and put it to the back of mind until it actually starts happening (easier said than done I know) – it’s probably less scary when you are having to live it than reading about what will happen in the future and, importantly, when you do start, it can be all consuming mentally. The one thing MM does require is strong mental discipline and a positive attitude, I gather you want to start treatment to get rid of it quick but unfortunately this is not how it works with this type of cancer and time without needing treatment is often the goal we all eventually aim for. As well as using this forum I would also use the helpline as they will flesh out the bones of what your consultant has told you and you can ask away , anything and everything, without feeling silly or that you’re running out of consultation time. Ask away here also as inevitably there is someone in the same boat. Kind regards,
Rebecca
Hi Carol, sorry to hear about your problem – I would never go to my Dr about anything I thought may be related to SCt etc and have been told I can either go to my GP or ring my consultant – I will never bother with the GP as how many patients do they have that have undergone SCT? I would at least ring the Specialist nurse to get their take on it. Once again, reading yours and Michelles response I feel slightly uneasy that I was on antibiotics for the 1st 3 months then nothing – have never heard of Septrim is that a type of antibiotic – I def didn’t have that. Now I wonder how my lungs will survive a winter at work without a helping hand – as we are similar in post months what is your neutrophil count as mine have only once gone above 2 but then dipped back to about 1.8 which they say is ok? but is just under range.
Rebecca
Rebecca
