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
Hi Buzz, Sorry to hear about your situation and I guess you may be one of those where it is easily treatable to a good response but comes back very quickly. We all pin our hopes on SCT being “it” but it never changed my minimal residual disease etc in any way – I am 2 yrs from SCT – so did it deepen my response? who knows as there is no test to determine this. In your shoes my priority would be to look to going to some top people for second opinions/trials – this helpline will tell you who/where they are. If I were you I would focus on the fact that they have not found the treatment compatable with your MM yet but there are a few more combinations to try and this could mean all the difference. Jet Black (blogger) relapsed quickly from her SCT but is doing well from her allo – remember, you are young and have many options. In the meantime, whilst work is a good distraction make sure it doesn’t wear you down and take “breathers” if necessary to make sure you stay at your optimum health. I think you have a tough time ahead based on your results – but it is all still there to play for – so acknowledge this and actively seek out good coping strategies that will get you through the doubts/down days – flex your mental muscles as much, if not more, as your physical muscles – consider yourself an athlete preparing for the race of your life as they put equal measure in their strong mental attitude. This is a bit different from the “distraction” of exercise/work and all of them have their role to play in helping us through this. I tend to “harp” on about mental wellbeing and mindfulness because, to me, that is what gets you through this especially when young with children – I feel I can/could destroy myself/life much more quickly through my own mental torture much faster than MM could ravish my body! – on treatment or in remission it will now always be there, never forgotten, so we all need to intelligently know how to deal with effectively. I am not intending to be the voice of doom as I live a great life, have a good work/life balance, exercise well etc but I do attribute this to exercising mental strength on a daily basis via strategies that work for me. Your partner must be also in mental turmoil and probably holding things back to show “strength” for you so now would be a really good time to get literature/talks/ mindfulness “taster” etc that you could both look at and decide/try what will work for you – tool up for the fight! stay positive and take one day at a time and you’ll come through this. Good luck
Rebecca
Hi thanks, I am probably not as fit I think but for nearing 55yrs now think I am fit – I can manage about 40 minutes on treadmill at 5.8 miles per hour only! think I could go on a lot longer but boredom more than anything sets in. My consultant said it was abnormal and asked if I wanted an ECg but as I feel ok declined last time but think I will reconsider as when I was at work it was still only 47 – which I now find disconcerting. I have read a few people comments about a 2nd SCT on both the UK and US site where, without much specific detail, more of a “warning” when going into the 2nd SCt that any benefits gained can be negated by it totally damaging either heart or lungs – but I guess for some it’s perhaps a step too far and as with everything, you never know if that’s you until you’ve taken the plunge. RE low blood pressure/heart beat following SCT (altho mine has occurred more in the last 6 months only) one guy has such a gap between resting beats that it appears to set off the flatlining machines at the hospital when wired up and he was told they never really know what impact the SCT will have on the heart. After my SCt I would say my fitness was back 6 months after but that was gained totally from the 3rd to 6th month when I was feeling better. I play tennis and when I went back after my SCT I literally had the speed of movement of a very old person and my coach even suggested I started back with a green soft ball (for the little kids) as my reflexes etc were sooooo slow. It took going down every day for 10 – 15 minutes only just gently having a knock to start to get anything back (tho I was quite ill when I was home from SCt). It was a very slow process that took a lot of determination to resume what I had before but somehow I just started gaining momentum after the third month when I started to feel better. I hasten to say I chose not to rush back to work and take 6 months off + more with accrued holidays just to concentrate on getting fit and having “me” time. had I gone back after 3 months it would have been a much harder slog and whilst I was off my main job was to get back to normal/fitness. Good luck and thanks.
Hi Mike, If you don’t mind sharing I am interested in any heart complications you may have had during SCt – it is an area I am researching at them moment. I had my SCT over 2 yrs ago and since them my BP is on the low side (not uncommon from the US site) and I now have a resting heart rate of 45 – 50 – tho generally 50 – and yet I am extremely fit etc.I have heard of a few others in the US where this has occurred and is unexplained. I should be offered a 2nd SCt when in relapse so am keen to gather all experiences re. the impact on the heart as I know it is much more likely on the 2nd one. Thank you
Rebecca
Helen, Glad you are still posting and more just carry on carrying on…I guess its a bitter sweet day – a reminder of “that” day but also a celebration that you are still in the race. Guess I’d be laughing and crying but more importantly celebrating my strength of body, mind and spirit. good luck x
Rebecca
Hi Mark, Sorry to hear you are here at such a young age – I was diagnosed just before my 51st birthday due to kidney failure and following chemo/stem cell transplant I am currently in remission and I guess similar to you in that I have it, it does not require treatment and it is causing no damage for now and have bloods done every 3 months as part of the standard “wait and watch” policy – for me this is comforting as I was diagnosed at a critical stage and so take heart you will be treated before it can do much damage. I chose not to tell anyone for as long as possible as I felt this allowed us to lead our lives without the constant questions/check ups/ worry instilled on family. We all have different ways to cope but it may be easier if you can just digest and learn all about it without the added pressure of other peoples expectations/questions also. It takes a lot of time to come to terms with such a diagnose and to accept it all.Hopefully you will smoulder for many years and perhaps the time to tell is when it becomes active and requires treatment – I suggest you think carefully about the 2 scenarios of “to tell” or “not to tell” pros/cons because once it’s out of the bag there is no going back and it takes up a bit more of your time/life that I personally do not want to devote to this nasty cancer. This is a marathon and not a sprint so you can seek/digest information at your own pace as treatment is not yet on the cards so there is no hurry. I was pretty shell shocked for quite some time and only when I began to accept the diagnosis did I seem able to research it. Take care and remember “worry does not empty tomorrow of its troubles, it empties today of its strenghth”. This type of cancer is a real mind**** so start practicing good mental coping strategies now as this is what will smooth the path on what is now a rockier ride through life. Take care.
Rebecca
Hi Mag, Since having MM I have not bothered with travel insurance when travelling in Europe – following my consultants advice. I go when I am well and doubt whether MM would ever need immediate treatment whilst on hols – and I guess I would just book a plane home pronto if necessary. I tried once and found the cost/questioning didn’t really do it for me. I know that means I risk repatriation costs etc if I get run over but what are the odds? (famous last words!). I feel I am careful with my lifestyle, drink and diet so do not want to bump up the cost of cheap hols unnecessarily and you do have the EU card to use. If I had to fly home early I think I have saved that already by not having it. I think when comparing costs the cheaper ones are only good if they payout ok. Be careful to ensure they have full, comprehensive details of all your medical else they may try and wriggle out of paying even if its not MM related. Good luck
Rebecca
Rebecca
Hi, I echo what has been said – the first cycle is way the worst and then you/your body gets used to it a bit more. I would write a diary of your cycle so you can plan around what suits you and your reactions. I totally agree to go with the energy and clean the oven, bottom cupboards into the wee hours – there is a strange satisfaction to getting round to all the jobs you always mean to! I was quite high and would have 3 conversations at once and not listen to the response before my mouth ran off again (and quite loud) – funny the first cycle – but I then tried to limit social activities on that one evening. When a bit down I always had treats planned to brighten my day – little personal treats go a long way – not expensive just some good quality time doing whatever floats your boat – you’ve earned it. As cycles continued I found I was so tired at night due to continuing activities like exercise that I began to sleep as normal. I hated the bloating of my face (tho not my body) and my family used to have a good laugh at my expense on my dex as it visibly expanded – did go down a bit then but always bloated more on dex day. Good luck.
Rebecca
Hi Phil, Fabulous news – well done you – great to hear news like this as it gives me a real boost. Even tho I know it’s all very individual but by just highlighting this individuality means that none of us can be ruled out for a long remission.Hope you are getting the bubbly out tonight and celebrating your bodys achievement of outwitting those mealy myeloma cells. Sometimes I buy it just for passing another 3 month review! Great excuse for pushing the boat out.
Rebecca
