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
Hi Dean, Sorry you are hear but it is not all doom and gloom tho’ when you are young with children it is hard not to get beyond the doom. I was diagnosed with kidney failure at 50, similar to yourself I suspect I had it a long time but I used to work nights etc so can always explain the tiredness away and my kidneys were at 5% – I had been in kidney failure for 6 months with all failure symptoms but my Dr diagnosed labyrinthitis (ear infection! tut) – this meant my kidneys could not recover fully and am at 32% now. I am 2 1/2 years post transplant and living life totally as normal as before except with the “dark cloud” following me around- for me MM is more mental than physical. I was diagnosed at such a critical stage and I left the hospital just before xmas, without any literature (my choice) and did not dare look on the internet until xmas night and then the realisation started. I don’t mind saying I spent a long time grieving for my lost future – or the future I had planned, torturing myself about my daughter left motherless (on par to self-harming). It took me a long time before I could start looking up information etc – it was all too raw. This is a natural process, you have had one hell of a bombshell obliterating your life as you know it and it takes time to recoup, accept and move on as best you can. You must allow yourself this time and go at your own pace as it won’t effect anything – you’re not going anywhere and the MM is now on the medics radar so concentrate on you and your families needs now..there is no need for panic mode. What I can tell you is that this is not going away any time soon so formulate your battle plans – and by this I mean you and your wifes coping strategies as this is one rollercoaster ride and a real mind ****. Your MM has responded to first treatment which is a positive sign and you have lots of treatment available as and when you need them. The “double edged” positive is you are young – now this does not sound right because Mm is for the seniors not us young folk and I would totally prefer to have developed it at 70 (ave age) when my daughter is settled and I could accept it more but… you have more choices…you will be offered an SCt but will always have the Allo/mini allo transplant as a trump card if you want to treat it aggressively ( My kidneys were too damaged unfortunately). I am 3 1/2 years since diagnosis and still (touchwood) in remission and each year they are learning more and developing more treatments so try and consider this as a chronic condition. When you look on the internet the stats are not very relevant now as they are based on a time scale when the new novel drugs were not available. Drugs are improving, life spans are improving.. there is hope. If you really delve into the web – I would suggest the US myeloma beacon – you will discover people living well with this for many many years – yes there are also those who aren’t but what I would like to stress to you that MM is very individual and hence you are not that statistic, not that average life span, you are unique and whilst they may predict your outcome they don’t know. I have high risk cytogenics (this is not good – predicted aggressive, difficult to treat on average) but I was easy to treat and am 2 1/2 years post SCT ( higher than the ave 18 months) So whatever you read I can tell you of those who buck the trend because it is so individual. My advice to you is recognise your life has changed, decide how you want to forge ahead and arm yourself with coping strategies- note I am not saying literature, research etc because that’s the medics jobs your role now is to cope well with it all as a family and so this is where you energies should lay. Try anything and everything and see what works – mindfulness, to me , is the key along with relaxation techniques or hard exercise – adrenaline buzz (tho sometimes difficult on chemo!) Sorry, I am rattling on whilst drinking champagne, won at my daughters leavers sixth form ball….when diagnosed I worried so much I would not see her through her GCSE’s and when I did I hoped to see her through her A levels and now I believe I will see her through her degree! I know you will be looking at your daughters and torturing yourself with “what ifs” but this is so very very harmful and you must learn to block those thoughts as they are draining away much needed positivity. When you have such thoughts turn them round and think “well if I am going to die how do I want them to remember me?” and focus life on living, laughing, loving “Life is 10% what happens to you and 90% how you react to it”. As soon as we are born we are all going to die it’s just that MM brings it to the forefront of your mind and we are not used to this. Remain positive as you can do this – you will have your course of chemo to get you in remission and this will be strengthened by an SCT – 3 months recovery – and you’ll be back. I won’t say you will be back to normal as this is undoubtedly life changing and during the course of your treatment you will, I hope, decide how you want to live your life and prioritise what is important to you so in the end you live a richer life if not bitter-sweet.
Rebecca
Thank you, We have all been there and experienced just about every mood/emotion going. I have had MM near 4yrs (8 months chemo then a Stem cell transplant). I have no bone damage so am not hindered from exercising but what will get you through this is managing to control your mindset – you are both 100% in charge of your emotions/reactions – only “you” can make yourself cry or laugh as it’s your mind and your choice. So you have to look at things differently to stay positive. I feel good mental practises is the key to living well with this. I have tried many different things to help me.. mindfulness, yoga…exercise is now my preferred route but when it all began and I read a lot of books etc I started collecting motivational/life quotes which I used to use as my “mantra” at various points/differing moods to bring me back to what was important to me. I will leave you with some for food for thought:-
– Life is not a matter of holding good cards, but of playing poor cards well.
– Worry does not empty tomorrow of its troubles, it empties today of its strength.
– Be miserable or motivate yourself. Whatever has to be done, it’s always your choice.
– Don’t worry about the things you cannot control, just be stronger when they come along.
– The minute you think of giving up, think of the reason why you held on for so long.
– Life shrinks or expands in proportion to ones courage.
I have a book of them now and don’t refer to them but when I relapse I know my book will be out again and it will help refocus my now undisciplined mind. You will find your own coping strategies – the key is to explore them sooner rather than later. Good luck.
Rebecca
Good luck, Rebecca
Hi, Sorry to hear about your dilemma- what are his current levels and what chemo combo was he on? If velcade, which I had, you only have it for max 8 months anyway and the bulk of the reduction is in the first 1 -3 cycles. It suggests your husband is stable and perhaps reached a plateau with that treatment – a break suggests he is possibly now at low level of MM which would be good. It can take a while for the chemo to come out of your system and to feel relatively “normal” again but my guess is you probably had this shock, life changing, diagnosis in October and was straight into treatment..hospital rounds etc, trying to stay positive and putting a brave face on it, waiting for treatment to end and life to resume as normal – light at the end of the tunnel etc – and then….the treatment stops, with no miraculous cure, a deep realisation of how this has changed your life, grieving for your old life, positivity wanes, what next questions?, what are you now working towards? what’s the point – is this how your life is going to be from now on? In reality you have come through a life changing trauma but it doesn’t end there and so I think it is natural to feel lost, tired, helpless, hopeless – battle fatigued. I am sure it is easy to stay in this state unless you are helped out of it. I would suggest you both need to start making goals to look forward to/achieve and really look at how you are going to manage your lives with this MM intrusion. I believe this is disease is a real mind **** so I would suggest for you both to look at future coping strategies/activities to take your mind off it and to inspire new dreams/passions. Now is the time to evaluate how you want to spend your time – is there anything he really wanted to do that you can work towards now? new interests/hobbies. When I was down I always treated myself with good activities – even a catch up coffee with friends..anything and everything that floats your boat. This means both of you – you have both been given a raw deal to bear so you need to gee one another up with future plans, desires etc. You will be entitled to counselling, courses such as mindfulness (living in the moment) start trying new relaxing things to see what will help you both to cope as you move forward as this is not going away – it may fade in time to the background of your mind but for a long while it is always at the forefront. Life can resume as near normal in time but in many ways it is a different life and with different goals – if you have been smart enough to re-evaluate what you want in life and decide to change your life pattern to incorporate your real dreams/hopes. You say your husband is sleeping a lot and whilst chemo is tiring this aspect may also be a symptom of depression and perhaps a little help from the Drs may ease him out of this mood. One thing I would say, from my experience, is do not treat him with kid gloves sometimes a dose of tough love is the best thing you can do. Let’s not forget your life has equally been changed so you must fight hard now for the life you want to live – you must be positive here and suggest the way forward and open up discussions about how to get the best out of life. It’s not easy but you can do it and go back to a lovely life again you just have to find the right path to take you there and talking about both your hopes and fears and regrets in life may help you on the first few steps. Best wishes,
Rebecca
Hi Chrissy, Welcome. You are in a steep learning curve here and the important thing to remember is “take your time” you’re not going anywhere and this is a marathon not a sprint so go at your own pace. You do not need to know everything about MM now as your consultant/NICE will decide your treatment path so…if I had my diagnosis time over realising this is 1) life changing 2) one great big mind F*** 3)scary as hell, I would be researching more on mental coping strategies, try different coping mechanisms that may work for you, look into mindfulness, relaxation techniques etc because chemo is nothing compared to how you can torture yourself mentally. You are in it for the long haul so decide now how you want to run this race – your goals and values – and start it as you mean to go on. I have read many books etc since diagnosis and I am 100% sold on positivity and strength of mind enabling the healing process. We can say we are “Strong Brave Women” because this journey is hard, make no mistake, but it is doable so unless you have much physical damage to contend with I believe your quality of life is pretty much decided in the mind – and how we think and how we react to things is the one thing that we are in sole 100% control of. Sorry…after a while you will realise I just type my ramblings!
Rebecca
Yeayyyy…consider that good news and breathe out once again!
Hi Ann, fingers crossed for you this Thursday, I know you have been having some blips of late with your blood but it may not necessarily be what you fear most. Sometimes there is no real rhyme or reason for how things seem to pan out – I had the blip of bloods like you then it went back ok never to seen again and at the mo I have hardly any immune system – again no reason and everything seems ok – so consultant shrugs and I think it will just pan out like my low bloods did and I’ll never know why it occurred. If I were you I would just be merrily overdosing on treats right now right up to the consult to try and stop “going there” – go back to all your old coping strategies – my favourite was chanting “worrying does not empty tomorrow of its troubles, it empties today of its strength” – try and live in the moment for now – don’t allow your positivity to waiver…we are “strong, brave women”….that is my teenage daughters little mantra at the moment!(nothing to do with MM just lifes hiccups in general I hasten to add). I don’t know if you are now trawling the myeloma beacon for any background stuff but there is a posting on 22/5 discussing bone pain whilst still in complete remission…so it is possible. I am a little behind you, remission wise, so know that jittery feeling of feeling the rain cloud darkening and feeling ill equipped to cope with any downpour but deep down we know, when it happens, we will just put up the umbrella and plough on. Let us know how your consult goes, good luck.
Rebecca
Hi Claire, I went to see Prof Cook he is very renowned, tells it to you straight in a very personable manner and I had my SCT there 2 years ago last xmas. I have high risk cytogenics but no maintenance as I believe the only way to get maintenance here in the UK is if your treatment is part of a trial – mine wasn’t. You are in a great position with your light chains even now so it all seems quite treatable for you. MM is very individual – I had only 1120 light chains but it near destroyed my kidneys so I guess take heart that despite the cytogenics it has responded really well to treatment and I am sure being US based you will know that velcade can balance out some adverse cytogenics. In remission and drug free MM is not really restricting my life now so life can resume as near normal tho it’s hard to believe this when you are caught up with treatment and side effects etc. Good luck with it all – and the move – try not to get too frustrated with our treatment options over here as they do appear to come a very poor second to the extent of drugs/combinations/maintenance options in the US… but then it is a free, inclusive, NHS.
Rebecca
