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
Stay strong – there are still lots of treatments to try and hopefully one combination will get a longer lasting remission. As you know, nothing is set in stone with MM and how we react is very individual so whilst the last treatment wasn’t what you wanted it to be that doesn’t mean that the next one will be worse – Ian is not the “average” statistic, he is unique, and just needs to hit upon a combination of drugs that works well for him…it has been done before by others so don’t rule anything out and stay hopeful x
That’s good Suzanne, your dad has lots to think about but is thinking about the wrong things and once their focus changes to what they really want to spend their time doing you will see their mood lift as they focus their energies on new challenges and hopefully MM will then go more to the back of the mind – but this takes a very long time/acceptance to achieve this state. This is a marathon not a sprint and throughout my treatment I always made sure my bad days were interspersed with treats – going for a coffee and a catch up – on a “down” day a cinema trip – took no energy and you can lose yourself in a film. It’s important that all the family start embracing a new mindset of living life as best you can. You will get there and you are making great progress now so don’t allow anything to slip. I went for my 3 monthly monitoring test yesterday – still ok – but I still treat myself on this day (nothing major – bottle of prosecco or a pub meal etc) and it makes everything much nicer/easier. We are a family of rewarding and indulging ourselves now and we have a great time. Take care x
Hi Sue, Your father has taken quite a bashing and to come to terms with this disease (if we ever really do) is only achieved with time and cannot be rushed. I think there are 2 ways people go with MM – no communication and keeping everything inside for fear of upsetting others or, like with all serious illnesses, allowing it to consume/dictate your life/energy. At the moment it is dominating his/your life in a negative way and this needs turning around to gain some control. I would get him some good books to read all about surviving cancer/coping mechanisms – and this should include you all. Try new things – tai chi (very good and gentle) yoga, walking, dancing…anything that sparks an interest, any form of exercise and mental techniques like mindfulness. Get him to focus on what he really wants/wanted to do in life and put steps in place now to make them happen – new hobbies/interests especially those that involve you all. There is much literature that fatigue is often depression related and even when you are tired if you go for walk etc it boosts you and raises your energy level and helps you body – so very positive on all fronts. I don’t know if he is good on the internet but you can research many success stories of long remissions without SCT so start picking up on the positives. It is important to feel as tho you are fighting back, I did this with exercise which really helped, your dad might also like to look into nutrition and food and it’s benefits (positive research not negative research). Plan days out to somewhere different so energy is directed into things that will lift his/your mood. Ask a friend to pop in for coffee to break up the day etc. You also need to be firm and remind him that this is not just his disease but all of yours so you do not want to waste your time but need to crack on and seize the day and do things that will help his body recover quicker so you can make the most of life. Be tough – it is easy to stay in the doldrums but if you can only get his focus on to different aspects of managing this disease well he will start feeling much better. Try and get him to see it as an opportunity/pass card to do what he wants in life and to crack on with it. Do not mollycoddle him in this state – tough love is required to jolt him out of this downward spiral. Positivity is the only way to live well with MM. Whilst I never discussed MM with others I did research a lot which did become obsessive so at one stage I learnt to block all MM things out of mind – if my mind wandered to it I said NO and didn’t go there and I adopted a set time each day for say 1/2 hour for me to think/read about it/talk. Perhaps he could introduce this over time and see it as a positive step to taking back control. The only control we have is our mind/emotions – we decide how we react to things, we choose whether to be miserable or we chose to whether to be positive and motivate ourselves..laugh or cry…it is in our control and our choice. When you realise this it really helps you to turn things around. I do not, however, wish to undermine physical ailments that he is experiencing but you can always do much more if you push yourself and if you push yourself you always feel better for it in the end. Good luck
Rebecca
Hi Lisan, So very sorry to hear of your loss which is so cruel and unfair on you all. I have a teenage daughter and think it is such a difficult age that I will have in place counselling for her (regardless of wishes) as when you grieve together it is very hard to open up fully without fear of causing more hurt to those we love and who are hurting too. I hope, in time, it will bring you comfort to remember that you helped him through this most difficult passage of life and was his strength and love to the end – we cannot ask for more from a partner in life. I hope the one thing you all take from this tragedy is the fragility of life and the need to live it to the full and, in time, you will seek to embrace this and make him proud. The real fear of those departing early is the emptiness we leave behind…like when a child leaves the nest you can cope/accept it when you know they are spreading their wings and will be happy again in life. Best wishes to you all x
Rebecca
Hi Peter, Yes a poor do from the Dr’s and all the consultants I saw at the hospital were almost accusing me of refusing blood tests when I described the list of symptoms I’d given to the Dr – lots of head shaking but in the great scheme of things I could not/would not devote energy to complaining. I do not have any records from diagnosis as I was in too much shock etc and those records I had I threw away after the SCT so now I don’t even remember the date I went in – threw my works diary away and all in an attempt to not dwell on the past and move forward. I have the gfr calculator thanks and, to be fair, my consultant would still do monthly or 2 monthly tests if I wanted so I have no concerns on this front. I think it is the norm to be on a 3 monthly tests perhaps 6 months after SCT but I wanted my kidneys checked monthly and only when I felt ready to go 2 monthly and then 3 monthly did it occur. Interestingly my light chains do not bounce about (unlike many) and have been extremely stable with a gradual increase, incrementally of say 1 -2 only, over my 2 1/2 years. I feel is hard striking a balance re monitoring/obsessing and try and remember to just gauge my well being on how I feel and my fitness. After SCt I requested a monthly print and poured over any anomoly with the consultant and went into every monthly consult with new questions I wanted answering. After a year, and being very stable, I chose to not have a print but was told all my flc’s, gfr and hb level and this was a big thing for me to do mentally. Now I am 2 1/2 years post SCT and still in range but at the higher end and I have just resumed getting my prints again and checking the trends – if I am brutally honest with myself I believe I will be out of range in 9 months so I like to check now. I have heard many say their numbers bounce when in periods of stress etc and that some have the best results following an holiday. I have just come back from swimming in Lake Bled, Slovenia, hiking etc and had my results 2 days after my return so I am kinda interested if my results will be different next week – I will let you know if gazing at mountains in the sunshine does the trick – then we’ll put a case to the NHS for it on prescription! It is well reported that stress is bad for us and the one thing I have tried to do since diagnosis is to work on good mental practices. I have let this slip for quite a while now as I am in a very comfy position but I do have this back on my To do List to reaquaint myself with it all – like flexing a muscle. Our only control we have with this very strange disease, I believe, is how we choose to deal with it.
Rebecca
Hi – I went to the Drs with all the symptoms of kidney failure in the July – was told it was labyrinthitis and no blood tests done and was rushed in some time in October or perhaps November (bit of a blur now). I was given lots of blood, platelets and drips which quickly got to me about 8 – 10% function. I was going to be transferred for dialysis to another hospital when they discovered the MM and was given lots of dex etc initially and fluids and my light chains dropped quickly/sufficient to anticipate my kidneys would slowly improve. So no dialysis yet. I suspect I had MM for a while but oblivious to it until critical. I hasten to add I was/am a very fit/strong person and so I think symptoms were more masked with me. I was severely anaemic but still functioning and I was told later they did all my results again because they could not believe I was functioning/standing up! Another strange thing was at such a low kidney function I should have displayed “confusion” but I didn’t and they could not understand that either? I discovered when I went for a second opinion that I have high risk cytogenics ( generally considered aggressive/difficult to treat) with the translocation 14:16 (I think that’s right) which is associated with kidney damage and not bone damage. I think it is classed as high risk as it packs quite a punch to the kidneys which, I believe, explains in some way my kidney reaction than say yours…it’s all in the genes. It was a long process to get to my current 30-32%, I was at 16% for many months ( and told they wouldn’t improve further!) and had my Sct with kidneys in the low 20’s and was told quite bluntly that there was a 20% rick of death from the SCt due to infection wiping the kidneys out. However, due to my poor cytogenics the hospital agreed to SCt in an attempt to get me a stringent complete response. I SCT’d with a minimal residual disease of 0.3% and it was exactly the same after the SCt tho’ I got my light chains down from 60 to normal range which improved my kidney function further. Also, I undertook the SCt because I only had velcade/dex which is not known for a long remission with just the 2 drug combo. I have now past 21/2 years remission post SCt so will automatically be offered another one – this time round I don’t think I will do it as I feel I used up all my luck last time and was quite seriously ill for a while after it. Having said that I was fit and well again in a 6 month recovery period and I am still very fit with no fatigue that I hear others mention. I exercise a lot and I think this helped enormously both when on chemo and after SCT… but we are all different and it was very much my coping mechanism. I don’t know what to worry about the most the MM or the kidneys – so try not to! I am aware my kidneys will pack in first when MM comes back but whose to say they don’t develop new kidney techniques or offer novel drugs to me that won’t impact the kidneys..all I have to do is stay in remission long enough for such things to take fruition..fingers crossed.
Rebecca
Hi sorry Peter for the confusion – I was diagnosed (just before my 51st) in kidney failure at 5% function with light chains at only 1120 and just 10% plasma cells in the bone marrow (they were perplexed at the amount of damage from small numbers at my hospital)- I had velcade and dex for 8 months followed by SCt and since then my light chains have stayed stable/normal but slowly creeping and are now at the high end of the normal range still – just had my bloods done this morning so hopefully still stable. I say they will start treatment early for me as my kidneys can change with small changes in light chains and I believe 100 is the minimal number to treat if your body is affected. With regards to side effects and long term side effects a lot still remains a mystery and moreso after SCt as they never really know the “individual” impact on the body. Post Sct I have a much lower blood pressure (not uncommon) and a low heart rate for no explained reason – I am very well and fit and my kidneys etc do not hinder me for now – probably a different story when I have to be treated again but hopefully that’s still some time away. With regards to SCt, considered the gold standard of treatment, I would never listen to a GPs advise as they are not that familiar with all things myeloma and I would always go for a second opinion to a well known myeloma specialist. If you are relapsing so soon after treatment I would recommend, prior to any treatment, being referred to a well known myeloma specialist for their “take” on the situation (this helpline will give you their names).It was really informative having someone go over my case, give their take on it all in the knowledge that they specialists and have current knowledge of all treatments etc. I am normally treated/monitored by a haematologist at a very small hospital – this is lovely but they do not have the full knowledge and are not involved in the many trials/dats etc.When I relapse I will hot footing for another second opinion to weigh up options and choices. I would suggest you consider this route also so you can make a well informed decision about your body knowing the full facts.
Rebecca
Rebecca
Hi Peter, I have lambda light chain and to highlight the individuality of it at only 1120 I have been left with 30% kidneys so everyone is different and they treat when it causes damage to the body – my treatment I suspect will start at about the level you are at now (based on how my kidneys reacted last time) yours may be a bit more of a wait but they will now watch your kidney function closely as a trigger for treatment. One set of results is not enough to determine an official relapse and I think in the literature they look for a trend of them consecutively doubling in numbers – light chains can bounce about especially if you have been unwell when you had your bloods done but if you are on three monthly testing I suspect they may reduce the time now between tests to see if this is a trend. Your experience may indicate you have the type of MM that is easy to treat but remission does not last long between treatments (there are people on this site like this) but it is way too early to tell from only one treatment option. When you have officially relapsed they will explore with you the next treatment options – you have not had an SCT? you may be suitable for a maintenance type drug – or another combination of drugs will work much better for you than the last combination. Let’s hope it is just a blip in numbers – Jan has posted on here that after a cold her light chains have increased by about 300 and have also reduced so as with everything MM related it’s hard to predict.
Rebecca
