Hi Jeff, For info dt-pace is a combination of chemo drugs typically about 5 – so you can see it is more or less throwing the kitchen sink at the M – hitting it like a sledgehammer but quite a harsh routine (understatement here) and you are hospitalised throughout the cycle I believe, for obvious reasons. Not sure, but think it’s only used on younger people who are thought to be able to take this regime – and for “aggressive” M where other treatments do not seem able to keep it at bay for any length of time. Usually used immediately before SCT perhaps 2 – 3 cycles on average. Not sure the combination of chemo but you can pretty much guess some of them by the lettering – D – dex T – thalidomide C – cyclo…I assume.
Rebecca
Hi, god what anawful decision to have to make – I think I would have asked 2 consultants for their point of view and go with their experience but then when I was wanting to go to SCT I had a hospital not wanting to risk my kidneys and one who were prepared to! and I felt grateful for that!? When I look back I was the one taking the risks but I always felt a “third” person in it all just throwing the chips on the table. Whatever you do is a gamble but which one will give you the long term odds? I totally understand how your husband feels re strength and that is a big factor to consider I think. I went into SCT very mentally strong, went thru chemo beforehand fine, but 4 weeks after SCT with constant nausea and some infection/chest set back I was mentally “broke” and my husband thought I’d “given up” n quite frankly I don’t know if I had, I was in such a state of horrible, continuous limbo of illness that it drained me of everything – and I had gone it with a hop, skip and a jump – so don’t know how it can get if you go into it already on your knees. If you mentally give in does it really impact you that much physically? can it be the actual deal breaker to life v death? I don’t know? Equally, your husband is in a pretty rough place right now so will SCT be any harder for him (tho obviously longer)? This is all so individual as to how each off us reacts to SCT – if you sail through – or if you get problem after problem. Obviously you do not sound as tho you have been given the choice to stay on lenolidimide for a while in the hope he recoups his strength sufficiently – mentally/physically to then decide on the path to take. I would have thought DT-pace could still be as effective after this treatment follows? or are they saying if it is allowed to take hold it may be too late to knock it back sufficiently for SCT? I think you have cells on ice waiting. My head would say trust your consultants and go dowm the route they believe is best but…it is our lives we risk….and now my heart says carefully consider your intuition and how you both really feel about it all – trying to take the fear out of the equation also. I recovered quickly from SCT and am back to full “life” 10 months on and I have always said I would do SCT again in heartbeat – the process was horrible but for a few weeks only – not much in the great scheme of things. I was totally 100% adamant I would rather die trying than not have an SCT- I gambled a lot on Hope – and I survived and am living life as normal. But, I am now quietly considering at the back of my mind if I would actually do it again or did I use all my luck up last time? Now I have had the time to contemplate, whilst in remission and no “rush” to survive, I hope when the time comes I listen to “me” and my gut feeling – as we are the guinea pigs in all this. My “gut” told me to go for it 100% last time, totally against my husbands wishes I might add but that was irrelevant to me as my path was set, and it was the right decision that time. I am not fearful at all of SCT but feel my instincts may have changed moreso with a second and I want to listen to my intuition next time.Sorry, I have rambled yet again as I am considering your plight but either way you both have to live with your decision so I guess I’d try and put the fear factor to one side and do a list of for/against but make sure your consultant can give you supporting evidence for the questions that need answering. Your husband will be so weak physically at this moment in time it’s a question of how much more actual risk you will be taking by doing the harder route now. I know you are all too aware of the risk/damage of infections on the body so listen carefully to your “gut” and gather some answers to the impact on an already weak body and a dented mental strength – they’ve been around it long enough to offer opinions. Good luck
Rebecca
Hi Anthony, not sure what the stats are on light chain MM v MM would expect it to be 50/50 chance? as we equally have both heavy and light parts in our system. If your consultant never mentions it then I would suppose you have normal “heavy chain” MM where measurements are gauged on the level of paraprotein in the blood. I have “light chain” MM – in that the “light” chains can break away and thus patients are more susceptible to kidney damage (due to difficulty in filtering in the light chains blocking the kidneys). I am only measured on the light chains as I do not really produce an M spike/paraprotein reading as those with standard MM do – so measuring the light chains is an accurate gauge to the extent of cancer. I did ask once which was the best type to get for survival rates and was told it makes no difference as it all depends how the MM is for you. I think you are diagnosed later with light chain and often when kidneys have been affected due to the lack of paraprotein measurement in the blood – tho I am told some with light chain M do have paraprotein readings also – as with everything in myelomaworld it’s all very contradictory and individual! Glad the V&D is working out OK for you – I had 8 cycles of it and found it ok – think the biggest drop you find is in the first cycle and then it slows down quite a bit. Met a woman once in clinic who had it and got 2 yrs remission and they were trying it again for her – just watch out and report any PN before it gets too bad.
Rebecca
H Amanda, the benefits system has been tightened up quite a bit now so think it is very hard for new claimants. We are all “terminal” as is, I guess, everyone (the cause for many tho remains unknown we’ve just got a heads up!) but terminal, thank goodness, doesn’t mean imminent – I know you are fast tracked for benefits if you have 6 months or less to go – with the consultant signing up for this. I would go to Macmillans, citizens advice and you can have someone from DWP come and see you. I know people who do not suffer from cancer but have other debilitating conditions and cannot got benefits because they can walk 100 yards ( or whatever the criteria is) and dress ok etc. I guess you need to research it all and paint the picture of the worst day – I think someone claimed carers allowance for her husband because due to PN he found opening the pill bottles too difficult and needed help dressing – buttons etc. I have heard that some (not on this site but in general) who have had their benefits stopped have retried with debilitating “depression” “anxiety” – needs someone with them when out in case of a panic attack. I guess there are more than one ways to skin a cat so to speak so, if you wish, you need to explore how others manage it. By the way, I do not claim anything and have lost a lot of money due to time off work/ reduced working hours – I guess anyone with an illness does unfortunately. I guess you need to research the exact criteria you need to meet to get benefits and figure out how to match it – but think you would need Dr support/evidence also – but not sure. Good luck
Rebecca
Hi there – I’m 52 and my daughter is 16 and as the old saying goes you “protect those you love” we don’t share any of this part of my life (actually I don’t share it with anyone) – I don’t want her worrying and I always look so well and am active so I guess/hope she thinks I’m ok as I act it. Read all you can on Mm and if you want to have that discussion then perhaps start it based on your research – if he knows “you know” he may be much more open to discuss it or upset…I never discuss my condition with anyone except on this site – I choose to lead a normal life and, as such, do not want to taint it with such discussions. I have to say I have never felt “any better” by discussing things personally but if my daughter really wanted to talk I would – but only for her benefit not mine – so you have to really think what you hope to gain from it all. Like me, I am quite sure your father accepts his condition and just wants to lead a normal life – cancer sucks so why give it air time? – I would much rather just have a lovely time with my daughter than talking about doom/gloom/death. I tend to block everything about it out of my life – it is a “compartment” that is opened when necessary. Think carefully what you hope to achieve – do you want your dad to know how much you love him? if so then tell him – have those conversations – you don’t have to link it to MM. I suspect your father, like me, doesn’t really require your extra strength and is coping Ok, in his own way – everyone has to run their own race and we all differ how we do it. Be quite clear what you hope to achieve – write a list and then analyse the ways in which you can achieve those objectives – is it all linked to talking about a chronic condition or can you get what you want by having other discussion? there’s always more than one way. Good luck
Rebecca
Hi Chris – sorry to have to say welcome but as I am sure you have gathered there is still life after MM. I didn’t have CDT but know its quite a harsh routine so SCT may not seem quite as bad for you, hopefully, and as Winston Churchill said “if you’re going through hell – keep going”. Had My SCT last Xmas (Literally – and never got any presents waiting for my return home either?! Would just like to say SCT is miserable but then so is chemo but I’ve been now 10 months without chemo and it’s great so just for that SCT was well worth it – that’s your focus a good QOL drug free. Unfortunately, you never really put it all behind you but you do learn to live with it all and appreciate things much more so I guess SCT is kind of the “end” of round 1 and you can have a much needed/fought for rest from it all. It’s all doable, just make sure you’re kind to yourself and treat yourself when you are well. Best wishes
Rebecca
Hi cupcake I had a very bad throat develop just before the harvesting process and they checked the throat the day of the cyc infusion – I was totally convinced it wouldn’t go ahead but they proceeded and it was all ok. When you complete your harvest – which is a walk in the park – it will give you a huge psychological boost in preparation for SCT. I was terrified of SCT – which is normal- the day I got my call to say a bed was available I was as excited as if I was going on holiday abroad believing it to be the end of worrying about it. Everyone is different, but regardless, SCT is horrible but doable. At your age you will recover quickly ( unless you get infections) and in 6 months I was totally back to normal fitness/life etc – but do not underestimate the recovery process. I could have gone back to work after 3 months as I was fit then but chose to have 6 months off and concentrate on my fitness levels but, more to the point, to start enjoying life. I believe had I gone back in 3 months I would have been too tired to exercise/enjoy myself and would have got dragged down by the whole process and become more depressed. Post SCT is strange as you haven’t won the race, as this race is endless, so it’s hard to put it all behind you and somehow it suddenly dawns on you that this truly is a marathon not a sprint – so you still need to discipline yourself mentally to “not to go there” and to stay in the sunlight and out of the shadows. My biggest advice would be to start planning lots of treats after SCT is over and be very kind to yourself and take time out for you/family as this can be quite a fragile time – don’t rush to get bogged down in some of lifes drudgery. I was very strong throughout chemo but SCT mentally “broke” me and it has taken many months to regain my mental strength.
Hi Mike – I find it interesting that you report a cold for action to try and avoid pneumonia – this is my first winter post SCT and, with a gfr of 25 – 27, now am very worried about the risk of pneumonia wiping out my kidneys/me. What do they give you for a cold as I thought it wasn’t treatable or do they give you antibiotics as a precaution (tho these are not kidney friendly)? Do you have a pneumonia jab? Think I need to ask some questions at my next consult (tho think he sighs and settle into his chair when I walk in asking about everything!)
Rebecca
Hi Graeme, hope your harvesting went ahead ok and you got what you needed.
Rebecca
Hi Eve, Glad to see you posting – please remember you are part of that fountain of knowledge and your words and sayings helped me a lot in the early days – never underestimate how you can/have helped people. The people who post on here are very few unfortunately but I think there are so many people who read/gain from the forum without ever posting – so those who do post/share experiences help a much wider audience than you would expect – and let’s face it we all need help.
Rebecca
Andy, I know this has been hell of an uphill struggle for you with many downs re treatment success but fantastically well done – I think when your treatments haven’t worked as well as they could your strength of spirit has worked just as well and rebalanced the scales – plus the sun and smiles.
Rebecca
Hi, as with everything it is very individual and also on how good the person is who does it. I have had a few and felt nothing when the specialist nurse did it – much better than having a filling – and I only had injections at the site of entry. When she left my consultant did one and think he was a bit mean with the injections as felt it – but not unbearable. The accompanying nurse said that no 2 people were the same and she had grown men screaming in agony and yet the procedure is pretty much the same. No other sedatives offered where I am until you have one and they see how you react. It’s quite a quick procedure so generally bearable – when they extract the bone can often feel like a cork coming out of a champagne bottle!
Hi, SCt is very daunting and it has been described as major heart surgery on the blood but I have heard some who were on CDT say that was worse. I only had velcade/dex which I think is quite kind – or was to me. I wouldn’t worry too much about getting to sleep you’ll find sleeping quite easy. Forgot to mentions as the rooms were so cold (but germ free) you could take in a heater if you had a receipt and could prove it was brand new. Mouthwash – you will be given mouthwash to use to try and prevent mucutosis (or something) basically its a really horrible thick white coating on your tongue/mouth – think everyone gets this to varying degrees and when it starts they give you some medication to rub on. Everyone, on here, says to use the mouthwash as tho it’s going out of fashion – every opportunity ie. every time you’re up and in the bathroom. Mouth care is very important so every time you eat clean teeth and mouth wash and top this up when you’re able – they recommend taking in a soft baby toothbrush so you don’t make your teeth bleed as you will have a very low platelet count. If I think of anything else will post – it all seems so long ago now. The main thing is to remember it’s a bit like a short prison stay you know you have to endure it for say 18 days so no matter how bad your day is at the end of the day you are one day closer to home – try not to look ahead but just take it a day at a time. It does actually feel like prison when you’re in isolation with the same old 4 walls but you do have the luxury of a small fridge and a kettle! If you go on the US myeloma beacon site there are people reporting on their SCT journey in “column” form – or they may have completed – haven’t looked on the site for a while but it will be there somewhere.
Rebecca
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
