So sorry to hear your news but am heartened that you will continue the fight to not let this disease destroy any more than it has already. Life is precious – do your husband proud and live life to the full – for the both of you.
Rebecca x
Hi Brian, I am nearly 3 years post SCT without maintenance and it reduced my lambda to single figures and I remain in normal range still – altho numbers have crept up but still within range. I was, however, 0.3% MRD pre and post SCT so no change there. My consultant says the length of my remission is due to the deepening of the response from the SCT. MM is so very individual you will find stories where SCT did not impact at all and those who have good remissions and put this down to the SCT but who knows for sure. There are no guarantees with SCT but I do think it works for more people than it lets down. SCT is a personal decision and a huge leap of faith – I very much err on “hope” so I was always going to go down that route as I could not bear the thought of being plagued with “what ifs”. I think SCT is always a gamble but with the a high probability of lady luck being on your side when you roll the dice. I have no known ill effects at all from SCT and am probably the fittest I’ve been in my life.
Best wishes
Rebecca
Hi Dean, Yes am always puzzled a bit about the outpatient procedure in the US and hope in the UK it is only for those close by and who seem fantastically well. I seemed to have obs done every 4 hours for all my stay and would have scared the family like hell at home as I did not look or act well. I think in London there are some use of hotels near the hospital but for a limited time only. For such a short time and the feeling that this is a “major” undertaking I’d want to be miserable in hospital with help to hand – tho having said that I never needed to buzz for help or imposed on the staff – it was just the regularity of obs which is both a nuisance but a comfort. Yes I am aware of STC on dialysis – the reason I had travel so far was because the hospital I would have chosen did not have dialysis facility so if I took a turn for the worse I would be ambulanced to a major hospital 10 miles away but the thought of having to do that and maybe having S&D at the same time was too much to comprehend so I opted for Leeds and didn’t need the facility thankfully.
Rebecca
Hi Peter..thank you. My concern for kidney is when I relapse etc 4 yrs ago I was at 5% then 16% and stuck at that for months and was told it was unlikely to rise – SCT’d at about 20 (2yrs 10 months ago) slowly climbed to 32 then stuck and last check was 37% and am hoping it’s not a blip but another slow climb!
Hi Dean, Yes information overload and I am notorious for only remembering the bits I want to hear so used to take in a recorder with me to digest later. I am sure they mean you will be on an open ward for the chemo bit (very uneventful and no S&D) then move you when you start to decline after a few days? 3 – 4 weeks is what they tell everyone because if you hit a bad infection it will be that and if they tell you 2 -3 weeks you are desperately disappointed if you have to stay in – reverse psychology by telling you its a long time and you have that mindset and you are then very happy when you are out in 2 – 3 weeks. I hate to say it but as with everything associated with MM it is a very individual experience, yes we all have the S&D for a few horrible days but the severity of it varies. I went in fit as a fiddle, positive mindset etc and spent most of the time immobile because any movement made me sick..every morning I was turfed out bed and for my reward..I was sick etc. They have masses of sickness drugs so you just to have hit on your formula and in the end I was just nauseous.I cannot imagine you are in an open ward at all when you go down hill as in the private room and with varying drips I only had to take 3 steps to get to the bathroom..no time to wait in a queue. However, the first days were absolutely fine I actually wondered what all the fuss was about until I started down the neutroprenic route. I had mine at Leeds they made me get a hickman line fitted before I went on the waiting list so you were ready (this stopped me playing tennis and going to the gym) and I only got to go in just before xmas after several conversations from my consultant – so I hope you pin them down to a date. I had my new cells put in on my birthday and xmas day I knew I had turned the corner and was nearly home…all good omens! Boredom is the worst of it all and the lack of inclination to do anything, I’m afraid I wallowed like I have never wallowed before but I was on my own most of the time as I chose a hospital that was quite a distance away and my husband needed to work and be home for my daughter so we just phoned mostly which was enough. Skype may be better if you have a long travel – one day I asked him to come so he made the trip after sorting everything at home and then after 20 minutes I’d had enough. So, if you can, you dictate your contact to suit you and I used to just text family with little updates as didn’t feel like talking. Sorry I am not painting a good picture but it was all very doable just miserable. Nothing drastic happened – no mouth sores even tho’ I never sucked ice like everyone recommends – again think it’s all very individual. Looking back there is not one thing that I think was horrendous just a couple of weeks of miserableness. If you’re lucky you’ll sleep a lot and that will pass the time. I hear lots of people say they did but it never affected me that way unfortunately. As you are going in at the cold/flu season I would limit visitors as it’s quite frightening thinking they might be carrying germs. My husband was very scared to come in as he was at work with everyone having colds and whilst he didn’t (never does) he thought he might be a carrier. You really do start worrying about the dreaded germs and this side gets worse when you come home – all very expected under the circumstances. Try and have lots of good treats before you go in..it will benefit the whole family as this is a huge strain for partners and children and perhaps moreso when you come home and everyone treats you with kid gloves and become obsessed with washing hand, door handles, light switches…so before it starts all enjoy some less stressful times and then start planning for a fantastic xmas and optimistic new year.
Rebecca
Hi Peter, Yes I do believe it is how you react to treatment etc which has been good for me so far but am conscious, having read some recent posts on the beacon that only one mm clone is dominant at once and I do not think that was the translocations ones. On relapse the tricky translocation may then be the dominant and prove more difficult to treat…or it may not…which is why worry is waste of time/emotion! Re US SCT I was making the point that there is a move away from it being the “gold” standard of treatment in the US due to the other drugs option i.e. if you are eligible you do it almost automatically like in the UK.Peter with that degree you’ll fit right in – I absolutely love how much you learn from the various tommy toppers posters on any subject matter…tho I say this not with malice because it is so helpful from a learning point of view.
Rebecca
Hi Dean, thanks for that story..I like it! Altho my genetics are classified as high risk it is always just a predictor due to the individuality. However my translocation 14:16 is seen in many kidney damaged patients (my light chains were only 1000 but they really stuck the boot in )- so I may be easy to treat but it causes maximum damage to the kidneys. The high risk status of this translocation (which was;’t classed as high risk a few years ago factor, I feel, is that my kidneys restrict treatment options/trials and therefore will finish me off ahead of my time but..we will see. If you delve into cytogenics there are profiles that are known to cause heavy bone damage in small numbers etc. also. All very interesting if it wasn’t so pertinent! After treatment I have always felt incredibly well and so to me the burden of MM is the total mind**** of it all and I always say and truly believe this is where our energies should be devoted – coping strategies and living life strategies. “Life is 10% what happens to you and 90% how you react to it”
Good luck
Rebecca
Hi there – Just to add to Peters response whilst I love the myeloma beacon as it soooo informative – and mm’ers there seem positively to degree standard in their knowledge of our “chosen” subject you must be cautious to relate their experiences to here in the UK. SCT is no longer the gold standard of treatment in the US and that is because they have such a wealth of drugs available to all patients via insurance and they can use these in any combination they see fit to try which will also incorporate their cytogenic status- so with the advancement and ever increasing drug supply for the US citizens SCT is not necessarily the no.1 choice. Here, in the UK, we are a very poor relation and are treated as a “one fit suits all” of standard protocols unless we go on trials – which are also very limited in comparison and like myself, you can be ineligible for our trials for various reasons relating to the individual MM experience. The drugs used in the US will take for ever to get approval from NICE as they are always deemed too expensive – not enough stats to prove they benefit every patient – and we all know MM is so individual this works against us for approval of new drugs. No myeloma drugs in the cancer drug fund?..no surprise there. With limited treatments here SCT will remain the gold standard treatment as it helps saves the other limited drugs for a little while longer. I don’t want to sound l doom and gloomy about it but we must be aware but it is a recognised factor we do not get access to the latest drugs easily and for many of us we will miss out altogether due our time lag of approval status/willingness to dedicate the funding to such drugs. I would highly recommend everyone use the Beacon site for its wealth of knowledge but always be aware of the restrictions of access to individual treatment plans here in the UK.
Rebecca
Hi Dean, Yes the test was done at diagnosis then one after induction to see what was left and 100 days after SCT. I guess when they do it after induction there are probably still pointers to what the MRD comprises – mine were still there so guess they are the hardest to get rid of and the ones to take notice of. Over time they mutate anyway and new ones spring up so guess some hospitals decide not to do it and save money at diagnosis – our treatment paths are pretty much standard and set for us anyway – it is just another piece of the jigsaw and guess they assume, if able, all patients will want an SCT. We are always bombarded with 2 key pieces of information – the “average” and then the fact that MM is so very individual. If you scout round the myeloma Beacon site you will find those who have had extremely long remissions and those who relapsed in a few months so I always try and remember I am not the average statistic but am unique – if you don’t think like this you will always be thinking your remissions nearing at end etc and this is a big enough mind game as it is. When diagnosed I met an elderly lady who had MM for 12 years and had not had an SCT – she initially had CDt and got 7 years – 4 years on the next treatment (can’t remember what that was) and was back to try the 2nd treatment again and it was working well. The more you are around MM the more success stories you will find and always remember the majority of posters are those undergoing treatment etc and needing support – those in long remissions are just getting on with their lives and putting MM on the backburner until it rears its head. As I am classed as high risk (based on the “ave” statistic) I was heartened to find someone who was high risk and had been in remission for 9 years – so I like to use these as my averages instead! The reason I went for SCT – even with the big risk factor for me – was because I didn’t want to be plagued with “what ifs” had I not taken the opportunity when I was fit enough to do so and also didn’t want to be counting down the average stat had I not had it. I felt SCT gave me the opportunity to hope that I will be one of the ones with a very long remission from SCT and hope, whilst devoid of all logic, goes a long way to remaining positive about it all. Another point to consider is that when we are given the average stat of relapsing on different protocols they are not broken down into the high, standard and low risk groups anyway. Don’t worry about the SCT for the first few days it can seem like a non event and then it’s pretty horrid – like any sickness – then its over and you are recovering. I took in with me a count down calendar – average stay is 14 – 16 days so I chose 16 and every night I crossed a day off (similar to prison I imagine) and even if I had a pretty grotty day when I crossed it off and was 1 day closer to home it always seemed doable – which it is. Take it one day at a time and keep your focus on the bigger picture and spend time planning treats in your recovery period. Good luck.
Rebecca
Hi there, You seem to have gained remission from velcade (I believe velcade is only offered to 8 cycles maxc I had the 8 cycles) and therefore, you can wait and be off treatment until you relapse or you can progress to SCT in the hope (but nothings guaranteed) for a deeper/longer remission. I was 51 yrs old. I was on velcade and dex only and this is not known for very long remissions – I was quoted 9-18 months max which was a big factor in my going the SCT route. You do not say your age or if you have other health complications which may make you not want to go down the SCT route. SCT is arduous and dependant on age ( I feel) can take up to 6 months to recover. I was back to full fitness and normal life again in 3 months or so.
The questions you need answering are, I believe:-
* From your bone marrow biopsy what are your cytogenics and risk factor? I was high risk and so very important to eradicate what I could of MM (high risk = more aggressive and possibly less remission time)
* What is your status now i.e. have you achieved complete remission on velcade or very good partial remission (indicating there is still room for improvement).
* What is there proposed treatment on relapse – is this a maintenance type drug (thalidomide or revlimid) that you will continue to be on until it no longer works (I felt too young/physically active to want to be on a maintenance type drug).
SCT is the gold standard treatment in this country but Mm is very individual so you go into it hoping for a better result but this is not guaranteed and for some it doesn’t work. I had 0.3% minimal residual disease before SCT and am still 0.3% MRD after it (due to high risk cytogenics it was hoped SCt would eradicate this but it didn’t). I will be 3 years post SCT this Xmas – did the SCT give me this much longer remission or would I be one of those individuals who would have bucked the “average” anyway? I don’t know and neither do they really because MM is very individual to you.
SCT is a very unpleasant procedure but it is doable – you will be in hospital 14 -20 days then back home for a slow and steady recovery. I have no known ill effects from the SCT and am very active. When I relapse I will be offered another one and I think I will probably do it all again in the hope of another long drug free remission. Do not be swayed for others when making this decision just make sure you have all the facts to hand and then decide how you best want to live your life. I might add I had kidney complications pre SCT and was give a 20% chance of not coming out of hospital after the SCT but I knew what I wanted and went for it – my husband did not want me to take this risk but as I explained at the time this is my life and my decision alone – you have to live the consequences of the decision made so you need to own it 100%.Luckily it all worked out well and I made the right choice at that time.
Good Luck
Rebecca
Hi Paul I have lambda light chain. the normal range levels are kappa 3.3 -19.4 mg/ltr and lambda 5.71-26.3 mg/ltr so yes you are out of normal range. The ratio between kappa and lambda is the important figure and the normal ratio is 0.26 – 1.65 – out of this is abnormal and generally considered to indicate the MM is active. Light chains can notoriously bounce around between test results so they will look for consecutive increases before relapse is defined. However, treatment generally starts when there is damage to the body so some people can have light chains in the thousands and manage ok without any side effects/treatment whilst some, like myself, have a lot of impact when light chains are just 1000 – such is the individuality of MM. Your light chains are very low so guess you may be monitored more frequently (I am on 3 monthly) to indicate a trend/monitor your health. Hopefully they will go down again and this may be a blip (some people have reported an increase in test no.s when they were not feeling well and next time they were down again – I have experienced a slight drop in numbers after a holiday and have heard others report the same) so hopefully your results are a “blip”.
Best wishes, Rebecca
Hi Scott, great news and am sure with your allo you have plenty more remission free years ahead..it’s always nice to have updates as you often wonder how people are faring and it’s especially nice to hear good news. All good news greatfully received.
Rebecca
Hi Eve, Sorry about your news but am sure if anyone can get through this with sanity intact it will be you so I wish you well with it all and thank you for the update – it is always helpful to make us take a step back from “normality” and remember the bigger picture and nice to hear from old friends. Here’s hoping your new rollercoaster has more “ups” than “downs”. Take Care
Rebecca
Hi Kevin, How fantastic – news like this really uplifts me – makes me feel that we are sticking 2 fingers up to MM and when one door closes in our life we are kicking down another. I am sure such an all embracing challenge will help keep you well and in remission much longer. I will certainly be following your travels. Enjoy
Rebecca
Emsie, to be honest I talk about mindfulness etc as it was my great saviour in my treatment, but I am nearing 4 years of this and time makes all the difference. Perhaps it’s because I know of the sheer exhaustion and torture of looking forward and second guessing that I can now stop myself from going there. We are also at different perspectives and sometimes I think it is weird that I literally do not/will not think about the long term future and just blank it out – it’s a coping mechanism that works well…perhaps denial. I have a teenage daughter and in the early days I cannot describe well enough my anguish from my own mental torture of looking at “what ifs..” I had to stop/shut it down as it was killing me more than the disease. When in remission and you have a breather, life resumes, I think that is the time you truly come to terms with it. I cannot imagine/remember my carefree life pre MM where my only concern was wrinkles and considering botox..for such a long time I couldn’t imagine waking up without then the daily realisation of another day in myelomaville. I think it’s like when someones died and you wake up and for a brief moment you have forgotten and then you remember but……I am not on treatment. have been in remission for a while, am very fit, and I do not have that morning feeling anymore and I thnk life is great again, for now. This disease will always be there now and only time will help your perspective of it all. I like to think positively at everything purely because it is easier on the mind/mood to do so – there is no logic in hope – but it’s one helluva comforter and motivator. In essence the future you had planned, like mine, has been wiped out and replaced with the unknown – I needed time to grieve for my loss and accept the situation and only then did I start living well with this. Throughout my remissioin I continue to research etc and have it all in the back of my mind for when I might need it but the difference is, to me, I feel I do it on the same level as I would a “hobby” which I know sounds weird but in that, I mean I do it now in a relaxed, calm, information gathering way rather than when in the early days I obsessively researched trying to find success stories ..those who have bucked the trend etc..to give me hope.. and there are a lot of success stories out there. For every failure there will always be an opposite tale to be found and that is why now I think it is important for me, not to second guess my fate but to focus on all those stories that show anything can happen in a positive light. The advice I like to give anyone young is concentrate on finding good coping mechanisms for yourself and learn to sort your head out – our mind can inflict much more mental torture than I have ever experienced with this disease and so the mind should take centre stage as the focus of energy…for me anyway. Trust me this disese is not all doom and gloom but you have to get to a respite period to appreciate that fact and I am sure you will get there. Hold on to hope.
Rebecca
Hi Emsie, Sorry to hear this news and as you will discover every person is different and the disease and treatments respond differently so to be honest with SCt it’s anyones guess and they can only tell you the “average” statistic. What I would like to stress is that at such a young age he is fitter and stronger to cope with aggressive treatments and recover well and quickly. The stage at which you are diagnosed is not particularly relevant and how you react to treatment etc is more important – so don’t dwell on the stage 3 bit. I would be concerned of such an early relapse but then he has had only one combination of drugs and that didn’t work for him – there are other combinations to try which may be much better for him individually and it is a bit of trial and error. I have not researched your translocation but when diagnosed I was in a bad way (just before being 51) and have high risk cytogenics – which means poor prognosis, likely to be more difficult to treat, aggressive etc – based on average statistics – but even with our cytogenics how we react is also very individual. Within these statistics you must remember the average age of developing MM is around 70 when you are weaker, have other health issues etc which skews the stats more negatively – being young and fit counts and should always be remembered as your “trump” card. I am 2 1/2 years into remission post SCt so, for me, the statistic hasn’t been my norm. IF you research SCT’s on this site you will find successes and some where it had no effect at all but they have long remissions from maintenance therapy instead or, if young, have gone from a failed SCT to a successful Allo transplant (Jet Black – blogger is one such example of this scenario). It has not been plain sailing for you so yes it is going to be a long tough road, the SCt is tough mentally and physically but he will bounce back much quicker due to age. If I were you, instead of seeing one treatment as a predictor/pattern for the following treatments try and view it as that one didn’t work well so let’s see what the next mix does. I would hope at such a young age if he can achieve remission status from SCT that they may discuss with you the possibility of a mini allo/ tandem transplant perhaps – this may be an area to discuss with the consultant if they feel remission may be short lived. The only way to cope well with MM is not to second guess and predict the future but to just stay in the moment and get through it one day at time. This is a hard but invaluable lesson to learn and I think it really helps you cope with the enormity of the challenge. When first diagnosed and in treatment my mantra was “Worrying does not empty tomorrow of its troubles, it empties today of its strength” it was the only way to cope mentally and help block out any negativity/wasted emotion. At such a young age I would highly recommend you look into good mental coping mechanisms as this is a rollercoaster of a ride that you must embrace. Best wishes
Rebecca
