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
Hi Colin, One more thought re. your pros and cons. Have you asked the consultant to explain your cytogenic profile from your bone marrow biopsy? Have you any deletions/translocations that make maintenance much more favourable? You will be either low, standard or high risk (considered more aggressive/difficult to treat) based on your cytogenics. However, to highlight the individuality of it all, I am high risk and yet it was ok to treat and am now 2yrs 4 months post SCT without maintenance and whilst numbers are slowly creeping up they are still within normal range. I always remind myself that MM is very individual and altho’ there are generalisations/assumptions it does not mean they will apply to you and yours but….whilst considering all the facts in play – cytogenics is an important one. The type of treatment you have can sometimes negate some poor cytogenics, for example, velcade is known to eliminate some unfavourable cytogenics etc. Do make a call to the Helpline also when mulling everything over as they can sometimes “flesh out the bones” with their experience.
Colin, whilst on velcade/dex – the dex can make things difficult abit like speed (I think) so up all night etc but as regards exercise I was taking my BP at home and when on dex I had heart arrhythmia (picked up by my cheap BP machine) and BP was higher/heart rate higher on dex day. What I used to do was play tennis then take my dex tablets and not play the next day – by which time the temporary arrhythmia/HBP had gone. It is all doable if you want to, you just have to make some adjustments and be aware of your bodily changes whilst during treatment. Someone told me their consultant advised no cardio sports whilst on treatment for fear of stroke I think – mine always said do what you feel comfortable with and live your life – this is how I got through it. As treatment went on I slept soundly even whilst on dex days as my body was exhausted after exercise. To me, this was the best gift, as soon as I shut my eyes I was dead to the world but happy that I had carried on as near normal as possible. If you have bone damage then you should have all the necessary tests and consultants advice before doing tennis – I was initially told no tennis/impact sports but now my consultant says just carry on what |I am doing. I firmly believe to do what you feel comfortable with, be aware of the risks, make sensible adjustments and most importantly always remember this is your race – run it how you choose.
Rebecca
Rebecca
Well Colin, it sounds like you are being pro-active and gaining what control you can so good for you. Incidentally, I was a fit 51yr old on diagnosis (but severe kidney damage). I like to play tennis – a lot – I continued throughout treatment for 8 months and when I came off treatment and had a 5 month gap pre SCt it was like a fog had lifted and whereas before I was playing tennis ok – when I came off treatment I realised it had been like playing in quicksand! (my consultant could not understand how I managed tennis on treatment but it was my normality/coping mechanism. Whilst my Sct did not go smoothly I was back to almost full fitness in 3 months and life has resumed as normal – I am very fit now, running, playing lots of tennis… so life can go on as near normal as possible. My immune system is very poor since SCT but it doesn’t hinder work etc. When I overdo the exercise/work I do get very susceptible to colds that won’t go away but that’s it. So please don’t think “life is over” it won’t exactly be the same with the black cloud above your head but you will find coping strategies for that side of things. To me exercise is great for mental health as well as everything else so do continue with your sports.
Rebecca
Hi Colin, Welcome and what a decision you have to make. Your consultant and MM nusrse specialist will give you the pros and cons and I guess the main thing is you get maintenance and possibly delay SCT until first relapse. I had velcade/dex then SCT – no maintenance as not on a trial. It is difficult to know what you want until you have started treatment, I think, and know what it’s like being on treatment. I am now 2 years post SCt and value the “no” treatment phase as it does not hold my body back – so to speak – but then I never had the choice in the first place. My feelings of trials is that they are trialling things that are perceived to be better than the standard treatment so, to me, that is always worth considering. You will soon come to grips that MM is very individual in how it responds and no 2 people really react the same so if you ask 2 people on continuous maintenance how it affects their quality of life you may get two very different answers.I think you have to go with your instinct on what you would prefer – drug free or maintenance safety net? tho on relapse you can then go on to maintenance style approaches until it becomes ineffective. There is plenty of research material out there re. the effectiveness of maintenance, SCT up front or at relapse – if you haven’t already checked the Myeloma beacon US site you will find a wealth of information together with the US protocol of standard maintenance etc. If you pose the question on there I am sure you will get some very informative answers.To me, it’s a lifestyle choice and what feels right for you – you say you are a keen sportsman – how important is that to you? what are the known down sides of continuous treatment for you to consider? – again consultants/nurse specialist/this helpine/ and asking on the forum of people on maintenance how they perceive it to impact their life. I did not have your dilemma as there was only one treatment path for me at diagnosis, due to damage, and am not sure at initial diagnosis I would have known how to react in such a terrible time of turmoil/upset. Good luck with your research and I always think having asked everyone and made a list of pros and cons – go with your “gut” feeling on what will suit you/your quality of life/your mental well being. Not particularly scientific but I always trust my gut!
Rebecca
Hi tom, Sorry I cannot offer anything but as I am lambda light chain and have no paraprotein (currently in remission) and at diagnosis with 1120 lambda I had only a slight/insignificant paraprotein rise – my doc has never said I am non secretary – would you say I am?? I get no bone damage but significant kidney damage on low numbers so will need treatment sooner than others when I relapse. I have been wishfully thinking I may get a trial tho kidney impairment may stop this (gfr 32) – but what is considered too low numbers for a trial please? I think my lucks out with trials but have not really researched it whilst in remission as don’t want bad news but as I have read this would actually like to know the guidelines please.
thanks Rebecca
Hi. I had a really sore rash at the back of my neck after sct(I thought it was shingles) – they took a blood test but never got the results – so presumably ok – and it went in about 3 weeks – it was raised, red, very painful – never to be seen again? one of the many imponderables…
Thanks Jan – always remember with high risk cytogenics that it is still an “individual” disease and so how we each react to it is also very individual. I have heard of a high risk case in US still in remission 10 yrs plus which proves this point/glimmer of hope! My understanding/feeling of it is I must have only had a small % of the HR translocation. I went into SCT with 0.3% bone marrow and came out with 0.3% – didn’t budge. This clone was not initially the dominant one but on first relapse that’s when I’ll know about it as the stubborn clone will no doubt now be the dominant one – but we will see. Whilst I had a small amount of MM it really damaged my kidneys so getting to SCt meant going to see different consultants to see if they were prepared to take the risk (I seemed to be the minor “bit” player in the risk taking!!) I was extremely well going into SCt and would have liked to SCT at first relapse but Prof Jackson s argument was that next time my numbers may not go down as much (MM increasing resistance, presumably from the HR clone being more dominant then?) and my body may not be in as good shape due to more chemo (by body for me they meant kidneys I think). Velcade is well known for quick drops in numbers even for HR cytogenics but once its plateaued that’s as good as it gets – I had 8 months of velcade (max time) altho after 4 cycles it plateaued and didn’t budge again until harvesting. I believe my consultant kept me on it longer because I was trying to get to SCt and having to have 2nd opinions at different hospitals and, therefore like maintnence as an interim. Perhaps they know you have plateaued and see little bodily benefit in continuing the route pre SCt – however, because of your break you may perhaps be able to compromise and see another cycle through but, if it has plateaued, moving on may be best. I don’t consider my SCt to have worked in that my light chains and MRD did not alter really after SCt but I was only on velcade/dex which is not known for long remissions typically so perhaps it deepened my response or .. perhaps it didn’t ( I managed from July to xmas SCt with no increase in numbers so I may have been one of those who bucked the trend anyway). This is all so “unscientific” and “unknown” it can be quite frustrating as now on relapse I will be offered another SCt on the basis of the success of my 1st, which I personally think it wasn’t, but no-one will ever know! Your concern for secondary cancer, which I think is just proven for revlimid and then counteracted by the increased survival chance by being on rev maintnenace is also valid with the high dose melphalan also I think. My immune system rarely hits the normal range and my numbers have been consistently low since SCT – my consultant attributes this to long term effects of the melphalan! so I guess I am always at risk as my immune system is not up to scratch to fight anything off but I just concentrate on one cancer at a time! Good luck with it all, the imponderables are so frustrating but I do feel your consultant will actually give you more in depth reasoning if you push. I think consultants are used to the vast majority of patients shaking their heads in agreement with whatever they say and therefore offer minimal information for ease – unless pushed. Having a second opinion was really good for me because the consultant purely reviewed my case with no holds barred and in details. In fact, my little hospital consultant ( who I wouldn’t swap for the world as he is lovely) withheld my cytogenic profile and clearly told me I had no translocations and so it was a shock when my 2nd opinion ran through my bone marrow profile and agreed to SCT me purely n the basis of my poor cytogenics. Due to my kidneys he also bluntly told me there was 20% risk of death but then proceeded to talk through other scenarios if I didn’t SCt at this point. It was most enlightening/informative to say the least. Good luck and let me know how you get on x
Hi Jan, I personally think consolidation after SCT for a short period is what I would have liked – all things being equal and they do this in the US ( 3 months or so?). Having said that your body is very low after SCt a further hit, for me, would have been difficult. I was not on a trial so ineligible for maintenance – I spoke to Prof Jackson at Leeds and he said (altho he may have been being kind as I wsn’t getting it!) that having maintenance, in a sense, is using up a treatment option before you really need it. We do not have finite drugs/combo drugs to try (like in the US) so there is much sense in this. I am high risk cytogenics so in the US I would automatically have been given it but I am now 2yrs 4 months drug free from SCt and wouldn’t trade in a drug free period unless there was overwhelming reason to do so – quality of life rules for me. Personally, rushing into an SCT because you are nearing top of the waiting list is not a good enough reason and perhaps, if your consultant sat and explained the thought process this may be only a small part of it. I finished my treatment in the July and due to hospital admin etc I ws put on the waiting list September and actually had it over Xmas – My consultant at my little hospital was getting quite tetchy about the delay because velcade is not really known for its long remission status. I had to phone the hospital every day to see if there was a bed but think leukaemia trumped myeloma and my hospital had to try and exert pressure in the end to get me in as they were considering putting me on maintenance as an interim. Good luck
