Hi, I believe it is extremely important to stay well hydrated for a variety of reasons, including protecting the kidneys, and 3 litres a day should be the aim especially whilst on a 3 drug combo. I am still doing this even tho currently drug free so it must become an integral part of your life. I found this to be very difficult but it does get easier. I find drinking warm water much more palettable, initially I drank it with one of those thick plastic straws so I could glug down more without feeling as though I was drowning in it. Buy a 6 pack of 500ml water bottles for the day – break it down and allow him to see how much more is left for the day. I found if you try drinking really cold water it is much harder than room temperature or warm. You can add a bit of cordial, use decaf tea, but I was always told just water is the best so that’s what I do. I would try having lots of home made soup also for nourishment because it is easy to eat and has the added benefit of adding to the hydration factor also. Make him eat little and often it is important to keep his strength up. When I was on my own during the day, when first diagnosed and on treatment, I could have just slept/zoned out for the day so I used to set my alarm at set intervals so I woke up and drank some of my quota (treated it like taking medicine – a necessity and part of my new life to get used to) and then zoned out again. Eventually it is habit forming and won’t be so hard. I am looking at a 500ml bottle now (my daughters) and would suggest you get 6, space out the day, wake him and make him finish a bottle each time – they are not that big and have a nozzle top a bit like a straw so you don’t drown in big gulps. Try the same quantity in the bottle but warm as an alternative to see which he prefers also. I only use tea and other drinks as an addition to the water as this was explained to be best for me, but I have kidney damage. I believe you can count decaf tea etc but try and make water the bulk of it. As my mum always says strength goes in at the mouth so wake home and pace him. It will get easier for you both as time goes on, Best wishes
Rebecca
Hi Peter, Your consultant seems somewhat blunt without giving you any supporting information for his views. I got MM at 50 with severe kidney damage and they have recovered to a stable 30% gfr – I live life as normal on this. -went for SCt because of my age and it is considered to deepen the length of remission. The consultant told me there was a 20% risk of death with sct with kidney issues (presumably in case the chemo or subsequent infections wiped them out)so 1 in 5 chance. I have high risk MM – thought to be more aggressive – hence going for it. You will know now that we have a cancer of relapse and remission – until we have exhausted the drugs supply and when the cancer becomes immune to all the different drugs. I was told the average length of remission with an SCT is 2 years and without it up to 18 months. BUT we are not an “average statistic” and our disease and how we react to each type of chemo is unique to us. My consult ended with him saying “I am sat here like a bookmaker – some people we think will do well don’t and some people we think will do badly do well..hopefully we will see you in 7 years time talking about another SCT…but we just don’t know…”. So I guess this is where optimism kicks in and that haematologists see such individual results that mean you can’t write one person off and back another winner – because they never really know how our unique disease and body reacts. However, it is generally true that once you relapse the remission length becomes shorter and you cancer becomes more immune to previous drugs but there are a few drugs to try and a lot do well on a low dose maintenance drug which you continue with until it stops working and then you try another one – altho we do not have finite drugs to try. Your bone marrow biopsy will have been analysed to determine your risk factor also – your cytogenic profile. Relapse will always have a higher risk factor with kidney issues as chemo can effect them further (velcade doesn’t) and infections are much riskier. So, I think there is some truth in what he says but you have to put it in context of a very individual disease and body. I’m firmly in the corner of optimism – I was told my kidneys would not recover from 16% – they stayed there for many months but very gradually improved and then stuck at my current level but they do not impact my life and I exercise well etc – I have never seen a kidney specialist but the consultant who sct’d me said you can live a normal life on creatnine upto to 200 but your health will always be compromised by them. So my advice is to try and stay healthy by exercising, eating well (minimal red meat) and keep hydrated with 3lts of water a day. Best wishes,
Rebecca
So sorry to hear this news and I hope you take comfort in the knowledge that he died enveloped in your love and that you gave him such tremendous support. I hope in time you embrace that “life is for the living” and have a very happy, fulfilling life – a different life and not what you had thought it would be – but a happy one all the same.
Rebecca
Hi, it is interesting reading this thread again with an extra year on and my hindsight of it all is that we are very ordinary people faced with a gargantuan extraordinary challenge and we start it with the normal mindset for a battle – you lose or you win and are victorious. We all set off totally focussed on positivity and focus on sct/remission – the win. When we actually achieve this it doesn’t have the “feel” we expect…Hurrah we’ve won, the Giant is dead type of thing because.. the Giant isn’t dead, just sleeping – yes we have raised the barricades but merely postponed the battle. This is when battle fatigue kicks in for a while and this is perfectly normal. As with the initial diagnosis when it can take some months for it to really sink in/gain acceptance- it equally takes time now for the summation of “marathon not a sprint” sink and be embraced. Herein lies the tricky bit – recognising and accepting you will be never be that person pre-diagnosis again and that trying to be leaves you wanting. Helen Keller said “When one door of happiness closes, another opens, but often we look so long at the closed door that we do not see the one that has opened for us”. I think this is where the problems arise – we try and rush back to work, go back to normal and put it behind us but this can only bring denial and unhappiness. What we need to do, with time and respite, is recognise this is life limiting and make choices on how we want to spend our time with this knowledge – tread water and bury our heads – or make big choices and further changes to ensure out lifestyle, dreams. family have the best deal we can muster. When we instigate this then we are ready for the marathon. It always saddens me when people rush back to work etc whilst understandable we can all live better with less money and more fulfilment and joy in life.
Rebecca
Hi Mervin, good luck with it all – its not pleasant but doable – I was the ones who stayed in bed all the time in pyjamas moving only to shower – I was not whacked out or tired its just that any movement made me sick. I hated it when they made me get out of bed for them to make it as I would spend the whole time being sick. Everyone is different and that was just me. I soon recovered and am enjoying remission – like you will be. There are lots of people who gain info/comfort from this site who don’t ever post and there are always many preparing for SCT who will want to read as much as they can about everyones experiences so I think its a fantastic idea to share this time. It will be so helpful to many and perhaps will help you as you will know when you have turned the corner and on the homeward stretch. It is so boring being stuck there so a daily bulletin may help pass the time as well as keeping family and others informed. Good luck. Rebecca
Thanks Helen – I don’t like “preaching” exercise as am aware many have bone complications – I have kidney complications at around 30% but it doesn’t affect how I exercise/live my life – it is just a number and exercise helps. Unfortunately you will always have the sword of damaclese hanging over you and the key is to live well with this – much more of a mental thing when you are so young with young children. During chemo I practised mindfulness and now in remission I still need to live my life with it and like living with mindfulness. We all need to find mental strategies to live well with this. I read a lot and collected a lot of quotes which in various stages helped me – almost as a “mantra”. My favourites which I remind myself regularly of are “worrying does not empty tomorrow of its troubles; it empties today of its strength” and “Worry by its nature it generally about things we don’t have control over and thus a waste of energy and emotion” I try and live by “You can’t control what happens to you but you can control what happens in you” – which I believe sums up mindfulness. “BE miserable or motivate yourself. Whatever has to be done its always your choice”. Always look for strategies to help you that works for you – this is truly a marathon not a sprint. If you like music to exercise to try Gabriella Climi “ON A mission” it is fast paced, up beat and I used it in the gym, walking, on the way to hospital for treatment, when I felt despondent to lift me – it’s really appropriate the sample lyrics “I am a woman on a mission…nothing can stop me, I’m stronger than ever I’m gonna see this through… I am a woman on a mission Whatever it takes I will do what I gotta do..” We are all different but to me a prompt quote reading, motivational song etc was my armour to fight for our QOL – we cannot fight disease biology the real battle is to minimise how it affects our QOL. I am so pleased you have taken up exercise – I am always kind to myself now so do add in to your life regular “treats” for yourself – things you perhaps would not have done pre-diagnosis because you were too bogged down with housework/humdrum of daily living/putting your family needs first. I don’t mean expensive things just say regular catch ups with old friends, coffee, beauty treatment – whatever floats your boat – anything not routine and nice. It uplifts you and as the “heart” of the family everyone takes their cue from your moods etc so in order to minimise the impact on the family we have no option but to find strategies to minimise the impact on ourselves. it is doable but it takes a long time living with it, I feel, to do it well. Don’t waste time worrying about the future as it will come soon enough and you will deal with it then. My worst thing initially was to constantly worry about how my daughter/husband would cope without me – this is true self harm masochism and pointless as I won’t be here to see it anyway. This was so utterly painful for me I can not now think about it and.. why put myself through thinking about things like this? However, I have tried to steer my daughter to be more independent etc and will at some point gear my husband to some more independent social activities so in a sense it is like “turning a basket of worries into a basketful of wishes” (yes another quote!) – you can always turn anything negative into a positive and once you have turned it into a positive you can let it rest there and forget about it. I am not, however, doing this in a morbid way as I believe I have a long future but it is something that would be useful/beneficial to all so why not do it? – tyoe of thing. I hope you have a fab 50th – splash out and enjoy it – I was quite age conscious and didn’t do anything for my birthday and when I was diagnosed a few weeks before my 51st I totally regretted it and like to celebrate anything at all in life now – particularly birthdays – so enjoy this. Sorry for rambling on but I really think it is so important for us to develop effective coping strategies we can adopt as a way of living – to the point that they are not strategies but just how you now choose to think/live. Best wishes
Rebecca
Rebecca
Hi, I was diagnosed just before my 51st birthday and did the chemo/SCt and now in remission and drug free. My personal opinion only – what got me through it all was being adamant it would not impact on my life anymore than it had to so I continued with the gym/sporting activities throughout all treatment and as soon after SCT as possible. Having MM can really drag you down mentally and perhaps make you always bordering on depression but I found exercise really lifted me up and kept me going. It would have been easy after a day at work to flop on the settee all night as I felt so tired but I dragged myself to the gym and honestly after a bit of exercise and a swim I felt totally invigorated/uplifted and able to do things for the rest of the might as tho I was refreshed. When I went to bed however the moment my head touched the pillow I was asleep. I believe chemo and working can really drag you down physically and mentally and I would suggest reducing hours to obtain a better QOL – which I have done. I played in tennis matches throughout chemo and after 2 months off chemo when I was less tired etc it felt as tho I had been playing with a veil over me and feet in quick sand – I had not realised how hard (compared to normal) it had been for me – but it kept my life normal and better. It is very easy to give in to fatigue but you will find lots of people on the Us site who say no matter how tired they are they force themselves to do a 2-3 mile walk and feel so much better after it – I am sure much of that is mentally uplifting. You are both far too young for this to impact so much on your QOL so I would suggest you need to evaluate what you want to achieve and try different strategies to do it – reducing hours would help – trying something different perhaps which involves some exercise may be an option. My husband – who believes exercise cures all – really pushed me throughout from the onset to maintain/increase exercise and I think he was right as I felt my life QOL was good with it. Why not try a nice long walk in the countryside or a walk after work – regardless of felling tired – and see if it helps? Sometimes I think MM screws with your head so much that perhaps long term fatigue is also caused through depression/low mood and because MM is associated with fatigue it is very easy to “label” everything as MM related when a change in lifestyle/strategy/outlook can flip the coin somewhat. I do not mean to be disrespectful to those who do feel fatigue – I have had it myself – but if there is no bone involvement and you can exercise and get about then you must. Life is too short to be bogged down just going through the motions so now is the time to get proactive, try new things and drag him along with you – you may find it is just what he needs to reinvigorate himself/life. After my SCT I was very ill and thought I could not play tennis again – my husband dragged me down and I struggled so much the coach gave me a soft ball (used for under 6’s!) to hit and when I tried to run for a ball my mind was there but my body was way behind – like a 90 year old playing tennis. I was so upset that I couldn’t do it but he insisted we go each day just for 5 – 10 minutes of hardly hitting/moving and then it increased as I got better/used to it and after 3 months I was more or less back to normal. it would have been so easy for me to pack it in without hubby pushing me – he needed me to be back to normal for his QOL also. You have to fight hard for your QOL and that might mean a change in work/life balance to accommodate it. The more you do the easier it is with MM – people say listen to your body and rest (well yes to a point) but your husband is young and should be strong as he hasn’t had any severe drugs as yet so you must go for it – I never limit myself because I have MM in fact I probably push myself harder to prove I can do it and am still “normal”. I also found reading and some “mindfulness” classes/techniques have helped enormously. MM is very much a mental and physical challenge and anything you can do to help the mind will help the body also. As a partner I know it is very difficult but don’t treat him with kid gloves – you are fighting for your “life” also – so be positive and challenging – the challenges can also be like treats. Please give it a try and Good luck
Rebecca
To Sct you need to be stable and as close to the normal range as poss.IF this is not achieved with the initial chemo then another type may be added to achieve as low as poss numbers – perhaps 100 or less.THere is the option of home dialysis and have read of someone on this forum who does that and has adapted his life well to it. REmission is getting the light chains in normal range and plasma cellsin tbe bone marrow within normal – less than 5%.his bone marrow biopsy will reveal the level of plasma cells and thid will reduce as the disease levels reduce with treatment.
Hi Sandra, this cancer is a huge shock to everyone and it is a natural reaction for your husband to not want to know everything initially – I left hospital with no literature and said I would ask when I was ready. I made a pact with my husband not to look at the internet (he did, however, but never told me of his research and when I was ready I took a deep breath and looked and grieved all over again. I am sure your husband is just concentrating on the now and copng with the daily hurdles and that is fine. Be careful not to push/offer information in him and let him come round to it all in his own time but have the knowledge there when he voices his questions/concerns with you. I think this is very important when you have a consult – you should make a list, with him, of what questions you want answering and stick to that- go at his pace. I secretly recorded my consults as I forgot a lot of things in the panic of the moment and it was good to play back and digest later. Read up on it so you can understand some of the fundamentals they are telling you and I would ask for a print of the results – this is your entitlement so don’t be fobbed off – this will give you all your bloods and light chain readings etc and it is useful for you to track at each blood taking session how your light chains are reducing etc – it’s a great boost when you see a downward trend. Note also that the best results from velcade are generally in the first few sessions and then the trend slows down until it plateaus – this is normal so don’t expect huge jumps for ever. This is a marathon. not a sprint, so there is no need to overload yourself all at once. I have found over time I like to research and keep abreast of developments etc for when I relapse but I find it much easier to do now as I am not in a blind panic. Take time to grieve because if this diagnosis and then collect yourself up and move forward with hope and optimism – you will find lots of stories that are not all doom and gloom and realise lots of people live essentially a “normal” life. this is a cancer of relapse and remission and advancement of drugs for it are increasing at a much faster rate than a lot of cancers. My advice to you is to take time to have “your” time throughout this, take the time to treat yourself – even if its that’s just a catch up coffee with old friends – you need to be strong and energised so taking care of yourself and mental health is equally important if not moreso. Your husband needs to see your reassurance that everything will come good and you are both strong enough to take whatever is thrown at you. Optimism is infectious and he will be feeling very fragile – as you are no doubt – but nows the time to take the lead for him – for a while anyway. I am sure you have been told also that velcade makes you increasingly tired and the steroids send you buzzing/agitated/ metally all over the place for a few days and then on a downer – I always felt very wheepy after it. It may help if you write in a diary a pattern of his moods/sleep etc over the cycle and then you can forecast the effects and have your strategies to cope with them. For example, on my down day I planned a treat to uplift me, at certain times I avoided social situations as I used to have 3 conversations at once and listened to none as tho I was on speed. it was funny at first but then on that particular day I had a quiet one at home! It is all manageable and doable the best thing is to recognise the patterns and work with them to minimise any effects.
Rebecca
Hi Sandra, Sorry you are here, MM is very difficult to understand and the important thing to remember is that it is a very individual cancer so when you read through literature etc always bear that in mind. If you go to the information section on this site there are lots of guides to help you understand this complicated disease. I was admitted with kidney failure (had been in failure for several months – diagnosed as labyrinthitis and a non-specific virus by my Dr!) An indication of its individuality is my light chains were 1120 and I went in with 5% kidney function and severely anaemic. I have read that “typically” when light chains get above 10,000 it is likely they will damage kidneys but for each person it is different. Your husbands light chains are high – the normal level of light chains you should have in your body is: Kappa light chain between 3.3 – 19.4 mg/l and Lambda between 5.71 – 26.3 mg/l. There are always kappa and lambda and your husband will be overproducing one of these – your Dr will know which type he has. These are the levels you are aiming for in your treatment. I was on velcade/dex for 8 months pre SCT – velcade is a good drug and known to be kidney friendly – which is why he is on it. I suspect he will get some increase in kidney function when the burden of the light chains have been removed but to what extent is an unknown at present. I was at 16% for several months and thought they wouldn’t improve – I SCT’s at 28 (18 months ago) and currently at 32 – 33% now. Never give up hope of improvement. I had my SCT in Leeds and was told someone SCt’d on dialysis and later came off dialysis. Generally, when you have light chain MM you tend to track the light chain levels as a measure to the extent of disease rather than paraproteins. With regards to staging (from your other posting) you can look it up and calculate from your husbands results but I believe your Dr is right that it is unimportant because with new drugs (of which velcade is one) being at stage 4 instead of stage 1 just means that you have more MM to get rid of with more body or organ damage but if you respond well to treatment then you have the same chance as a stage 1 person who does not respond so well to treatment – remember it is very individual. Kidney damage is always an added factor of risk – many chemo drugs can impact further on kidneys or you may have to have a lower dose which may not work as well and the risk of infection is ever present and can do more damage to the kidneys so yes it is less favourable but the important thing is how well you respond to treatment. Some people can get remission from the first induction drug but others may have to try different chemo’s to get to remission – that, I believe, is more important than where you started from. Do ring the helpline they can explain everything and you can ask them anything – they have a wealth of information and can help advise you what you should be asking from the consultants. This is all a huge learning curve and so try and take it one step at a time – don’t look too far ahead – concentrate on seeing how well the treatment goes – velcade is known to be particularly good for light chain myeloma and educating yourself on all things myeloma. Try not to look at a lot of sites as it is scary and you will come across survival rates that are out of date with the new drugs on offer today. I only use this site and the US Myeloma Beacon site – that is very informative also. Best wishes,
Rebecca
Yes you are so right, I do feel tho it is a shame that we are not automatically helped with the armour to deal mentally with a cancer diagnosis. I have read a lot and thought I practiced “mindfulness” very well – “choosing” to react to things positively and choosing to do things that make me happy rather than get bogged down with things like work etc. However, recently I have begun to think that in doing so I have changed personality quite drastically – for me its for the better – but others think I have “shutdown” emotionally on some aspects that makes me not “the real me” anymore? I do not really get upset/angry about anything – if you relate things “in the great scheme of things” everything seems so “trivial” and not worth getting upset over. Sounds great but was accused it was unnatural and “Stepford wife” was mentioned! – serene, no longer short tempered, much more easy going – I like this new me but to some others this shift in change is hard to take and don’t think its normal? Which goes to show that even if we achieve the ability to adapt to change and evolve those around us may not be moving forward with us ) My husband is, naturally, much more stressed and fearful than I and I guess that is because when I am gone that’s it for me – but for him it is a future filled with the unknown and walking this path alon. Since diagnosis I like to collect quotes as I did read a lot of books initially -I still weekly flick through my quotes as they have all helped me through various stages of the game. Helen Keller said “When one door of happiness closes, another opens, but often we look so long at the closed door that we do not see the one that has opened for us”. I am going to add that in my funeral speech (when I get round to doing it) to remind those who are left to seize life.
Hi Vicki, so really sorry to hear this about Colin – we are all routing for you both – and please don’t feel this forum is for positive stories only – as there are 2 sides to the coin we are tossing and it is useful for everyone to remember that. I feel in total denial of death as I live my life as normal but it acts as a prompt not to be complacent in our life plans – as difficult as it is. I feel we are all in a myeloma prison camp – when we get remission and escape it sends great positivity and motivation to those still in camp and looking wistfully at the outside. When a member returns to be once again in shaackels it sends shudders and grief through those both in and out of MM camp. Those out, it serves as a nudge to get work/life balance right and re-evaluate priorities. Best wishes to you both,
Rebecca
Hi – I was on various pills that stopped after a month or so and kept up the antibiotics for 3 months only. I was told I had to keep the antibiotics for the full 3 months as the melphalan destroys the lining of the lungs so you are susceptible to chest infections. Not had one yet now 18 months post SCT – fingers crossed. RE vaccinations some have them again after a year but I have not – as my little hospital never gets a response from Leeds where I Had the SCT. When I was in Leeds, however, I remember the consultant debating that your stem cells remember so you are not necessarily totally immune free from things. Anyway, have lost interest in keep asking so none for me. Perhaps a year is a trial at your hospital? they are so different. I asked for ice to suck – as everyone advises – at SCt and Leeds didn’t have any. They had run out but was told they had only recently introduced it as in the “older” days ice was considered dirty? Anyway, as with everything I think you are either predisposed to mputh problems or not. I had no ice and no problems – again I guess its a similar path but how we react is very individual. Bet wishes
Rebecca
Hi Brian, I had my hickman line in a while pre SCT and worked up to the day I went in – never had any advise on not working whilst it was in but I did have it flushed out once a week wherease I think some other hospitals do it once a fortnight? Funny how different hospitals have different view points. Good luck.
Hi – sorry to hear about the delay I know how hard it is mentally to brace yourself and gear up to it to then feel totally deflated. I had my SCT is Leeds and was told it would be 2 -3 weeks once I was on the waiting list after I had a hickman line in. I had to phone each day and it took 8 weeks and my consultant phoning that hospital also! This meant I was in over Xmas also but by the time I went in I was a nervous wreck – there is only so many times you can put on a brave face and brace yourself. I would suggest you re-plan to use this “bonus” time to have lots of final treats etc and enjoy some sunshine etc.- try for a positive “spin” on it – I am sure you are used to that now also. It will come soon enough and the anticipation is, I feel, as bad if not worse than the process. Let the others plan everything to do with the hospital stay and you try hard to blank it from your mind concentrating on some good distractions. As they say this is a marathon not a sprint and we all need/learn to develop mental techniques/distractions to overcome the unforeseen hurdles sprung upon us. Good luck with it all it sounds like a success already if you are in full remission and the SCt will hopefully strengthen/lengthen this for you. Once home, without hiccups you’ll be feeling pretty much back to normal in 3 months and hopefully you’ll be recovering mainly in the garden with a bit of sunshine and not having to worry about germy people with coughs/colds – a nightmare SCting in winter. All looking goof for you. Be kind to yourself.
Rebecca
