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
Hi Jan, I would ring the helpline to discuss this one – my understanding is a 90% reduction from what you set out with is optimum and as near to normal as possible before SCT. In the US they really strive to get to the lowest numbers pre SCT but I feel our treatment regime is sometimes lagging behind. I could have got lower by adding to velcade and dex and whilst my consultant kept saying he’d consider it he didn’t. When I was harvested the cyclosophamide (which I wanted adding) thankfully did reduce my numbers to near normal but more by luck than management I think. When I went to a different hospital and spoke to the consultant doing my SCT this question about numbers he kinda just put it down to individual judgement. In the US they feel you have the best chance of a longer remission if starting off at the best point – I don’t know if this is proven to be correct or if it is to do with their payment of treatment – either way I would push for answers/2nd opinion until you are happy. This is your health/body so you have the right to know the ins and outs of their decision making process and it is their duty to explain their decisions to you. I say this with the benefit of hindsight as I didn’t question and after it was all over and I researched with “less pressure” on me I wished I had been much more assertive for answers on lots of things but, having said that, there is so much pressure on you pre SCt it is hard not to just get swept along by this roller coaster ride…the what if questions come a bit later when you have more time to breathe and reflect on it all. Good luck with it all. Rebecca.
Hi Les, Don’t be too disheartened yet. After my Sct (altho no bone problems/pain prior) I found for the first 3 months I had strange pains – also in shoulder area and legs hurt -which I am led to believe is the chemo tightening the tendons which made getting up and about first thing painful and hobbling. Your body had had a massive battering of chemicals which affects muscles, tendons, nerves, you name it and I’m sure its affected it – my gums remained swollen for a good 18 months according to my dentist – also attributed to the high dose. So try not to second guess and err on the side of its your body starting to heal and reconstitute itself. I guess your tandem is based largely on your age rather than your type of MM so continue with positive thoughts and in the knowledge your next one will nail it if there is indeed anything left to nail. Good luck
Rebecca
Hi – Don’t hesitate – please ring – after my SCT I spiked a temp when home and would not go back/phone and my husband was a bit in the dark and bowed to my crying/covering it up. Thus began a very low point in my health – much worse then when in hospital – it hit my chest and set my recovery back ten fold. When I finally told the consultant he was horrified that I had stupidly risked my life and the state I was in was attributed to allowing it to take hold of my body. I should have gone straight in and been pumped full of antibiotics and been done and dusted with it in a few instead we really thought I was going to die, I became so ill. Ignore what he says, get help now, his body is too low to cope with extra demands and can be very very serious. Sometimes you have to over-rule and be the rational one as what your husband has been through hardly equates to “sound mind” now when trying to dodge a hospital stay again. Tough love is called for.
Rebecca
Hi Stanley, Glad to hear that life is treating you well and there’s no reason why it shouldn’t continue. I am 2 1/4 yrs post SCT (so will qualify for another one as standard now under NICE) and feel the best ever at the moment. Have finally just (this week) started taking the circumin supplements – same brand as you – did you ever up your dose to 4 a day as it states 2 only and 1 at a time? I take 2 together but wonder about upping to 4? Have your light chains increased since post SCT – mine are still within range but have increased very slowly.
Rebecca
Hi sorry to hear about your sister – I never got an infection whilst on chemo – which was lucky as I have very little kidneys left – but I did not go to work for the first 5 months of chemo (shock mainly and I work in a large open plan office with lots of germs). I guess now she’s had one this is the time to re-evaluate how best to avoid infections. Large crowds eg shopping, cinema, pubs, how is the work environment? This is not to say live like a hermit but minimise risks – when we went to the cinema we either went VIP (in small box) or chose early, less crowded performance – shopping – take the hassle out of it and start online – ensure you avoid anyone with colds etc until they are germ free – early evening meals out etc. Possible adjustments in the workplace – my work didn’t actually want me in as it was the winter period and everyone comes in with colds etc and our sick rate is 7 times higher than the national average! and as we all work in pods of 4 it would have been inevitable for me to catch stuff so I just avoided it. At work at the moment there is still a continuous cycle of chest infections and colds so guess there is still a lot of things going around – soon be spring/summer and the ability to enjoy the outdoors which seems much less fraught. Hang on in there it will all come good in the end.
Rebecca
Hi, I had a short spate of low HB and going for some blood – you will absolutely love it I felt like Popeye straight after it feeling normal and energised. I have to say on occasions I used to phone up saying how lack of energy etc I felt and asking for my bloods done so I could have a pint – to me it was highly addictive but they were very scant in their rations to me. There was no explanation why my HB had gone low for a while and then it just went up and haven’t had a pint for a very long time so guess it might just be one of those unexplained blips. Enjoy your pint, trust me you’ll love the after glow!
Hi Mark, My advice would be to do what you feel is good/works for you. Skiing is fine if you don’t have bone damage – they are over cautious on no contact sports, high impact (which includes tennis) etc but if you have no signs of bone damage – do it – if you develop bone damage weigh up the risks when you know the extent of it etc. The medical profession will always be over cautious with one advice fits all – but we all know it doesn’t. I have not changed my diet etc on the basis I was a very fit, healthy lifestyle individual who got this disease so why change now? – yes if you are overweight and have a rubbish diet make sensible choices to try to do better but I find that this is not the case for many. Alcohol? well weigh up having a sociaL relaxed drink against feeling stressed/isolated. I have cut alcohol down to a couple of wines a week but that is purely because my kidneys are impaired and when in chemo I stopped and I guess I just got out of the habit but if I want a few then I will – it’s my life not my myelomas life! Make changes that if you wanted to be a healthier individual you would make anyway – that is the sensible approach. Stress is known as a factor for cancer and that is one area I try to minimise – look for coping strategies, interests and outlets that help you cope – this won’t go away so you need to learn to live well with it (time is obviously a major factor in achieving this but actively seeking remedies will help). Should you change your life dramatically? only if you are unhappy with it, however, let’s face it this is a massive wake up call so if there are elements of your life/job you are unhappy with then I would say look to changing these aspects (if possible) so life is more fulfilling, positive and happy which will impact on any negativity and stress also. If I was a smoulderer the one think I would do is start taking circumin supplements – and if you look at the threads you will find a wealth of information about this supplement which appears to have a lot of benefit – of course you will never know if it did benefit you or not but I think just being pro-active in this direction may make you feel like you are doing something positive and, therefore, worth it. Whilst you are grappling with all this please remember your partner in all this and perhaps look to seek out positive changes together. You have a long road ahead of you so plenty of time to find your feet and explore what works for you – this is your race and run it however you feel appropriate.
Rebecca
