Well my MM no.s reflect greatly on kidney function – if my light chains moved from 60 6o 40 I would get a bit more kidney function back – but it could only go so far. I averaged 26 pre harvest the harvest knocked MM back a tad and I went to 28. SCt took them to 30 with light chains in normal range and they are now averaging 32. I would imagine you would find an increase in function if you get to normal range as when my light chains were about 120 I was at 16%. I put this down to the 14:16 translocation known to impact badly on kidneys for some reason. What are your cytogenics? What mortality are they quoting at 6%? is the same one I got? There are people who have had it done whilst on dialysis and at Leeds I was told one person came off dialysis after the SCt. I did used to chat to a man with kidney issues and he knew someone who was on dialysis and his kidneys gradually improved to a point where he came off it – but it took 3 years after SCT. He told me that kidneys can improve in time (despite medical opinion!) and he gave me some diet tips to aid kidneys and his renal charts which showed a significant improvement over time which he accredited to his diet and supplememts. I’m afraid I’ve just decided to go back to normal life and a normal diet rather than a kidney friendly one as my haematologists tells me I don’t need to be on a special diet. I am not convinced but never see a kidney specialist to confirm. SCt may bring your MM down and raise your kidney function or it may not – we never know until the deed is done. I was so well before SCT my husband didn’t want me to take the 1 in 5 chance – it’s hard to gamble everything when it’s not a sure certainty. If I was you I would pay private and quickly go to another hospital/region and ask for a 2nd opinion – this is the ultimate thing you are gambling with. Professor Gordon Cook at Leeds was my 2nd opinion and I had my Sct there – he gave good explanations as to why it was worth the gamble but I’m afraid I can’t recall how he told it (blocked it all out now I think).He is quite well known/revered in myelomaland, I believe. Whatever you decide I believe you must be totally convinced it is the right thing for you – I can’t imagine going through SCt without that dogged belief that it will be worth it in the end. If I didn’t have that I wouldn’t do it. I used to say I’d have another one without a second thought but I think I would listen to my gut, like last time, and go with that – hardly scientific but often your gut instinct (if not borne out of fear) is the right choice to do. Good luck,
Rebecca
Hi Amanda, glad to her you are doing OK – I remember talking to you when diagnosed as we were very similar stories but my kidneys are now at 33 (just 18 months post SCT). I was hell bent on SCt regardless of risks but you do right to question it all with such a low kidney function. It took me 3 months to feel back to normal and get some fitness back so recovery was Ok. I had minimal residual disease of .3% before it and the process didn’t budge it. My light chains were in normal range before it, I think, and normal range after it – has it prolonged remission for me? who knows as I don’t know what it would have been without it. Whilst I have felt well and fit after it my bloods have only just started looking ok – so took way longer than they should have to look anywhere near normal – due to reduced kidneys? don’t know? Did the SCt really work or did I go through it for little gain? don’t know. But I did it more for my sanity as I could not have been plagued with the “what ifs” if I hadn’t had it. It was proposed to me by 1 hospital as I have high risk cytogenics 14:16 translocation – known to really impact the kidneys rather than the bones – I only had 1100 light chains and went in at 5% – think typically kidneys are not damaged until they get to an average of 7000! Factors for you to consider are:-
* What are your cytogenics?
* What mortality do they quote you with such a low kidney function – as an infection following SCT could surely wipe them out now? I was quoted 20% with my kidney function (then at 26) a 1 in 5 chance! but the consultant thought without it I may quickly become a statistic as more treatments/sooner impacted on my kidneys. They thought it was worth the risk – BUT it is our risk and not theres remember.
* What remission is typically average on your chemo treatment? mine was only velcade and dex not known for a long remission – think 6 – 9 months is an average quoted so SCT was needed to lengthen it and let me tell you 18 months totally drug free and normal QOL is fabulous.
* So far has your MM been difficult to treat and have you used up some treatments already and still not down to normal levels? I ask this as you must have had more before you current ones in the length of time you’ve had it? Therefore is it aggressive? and do you need to throw the kitchen sink at it to normalise? or are you facing the prospect of continuous treatment/maintenance if it doesn’t normalise?
Don’t envy your decision and would really question the consultants rationale for proposing it. Good luck with whatever you decide – all I would advise is put any “fear” to one side and do a pro/cons sheet and look at it as though it is a business proposal – as they say “life shrinks or expands in proportion to ones courage” – but lets not be kamikaze about it! I would also post the question on the Myeloma Beacon site as this a real wealth of information.
Rebecca
Hi – Don’t know if this is the same as I have no bone involvement (I believe) but after SCt if I had a little walk my legs felt as tho I had walked 20 miles and this carried on for 3 – 4 months diminishing in time. Any little exercise on any part of my body gave the same OTT reaction – shoulders, arms. My feet really hurt when I walked on them 1st thing in the morning and this is the only thing that is still the case but the pain has diminished to just feeling achy/uncomfortable and then they are Ok after a while. The body takes a massive hit and guess it takes a long time to recuperate. I went to the dentist 15 months after SCt and was told my gums were still swollen which he attributed to the chemo. I think Jan once said her dentist said it took her 3 years for her gums to recover to normal!
Rebecca
Hi sarah, sorry to hear about your dad – how old is he and how was he diagnosed? I have not had VMp so cannot help on that front, however, please be aware everyone reacts slightly differently to chemo and so you may get all or hardly any of the side effects. MM is a very unique and individual disease. This is devastating, life changing news as you will never be rid of it – yes he will get remission but you will then be in the next phase of monitoring and wait and watch for its return. This is a marathon not a sprint. My advice to you in how to be the best daughter is – read and learn as much as you can – use this site and the US myeloma beacon site only. Learn what you can but do not tell your father everything you learn – by that, I mean, let him run his own race – he may not want to know everything, he may want to just be drip fed as treatment progresses and concentrate only on his treatment at the moment. Perhaps let him know you are researching and get him to ask you if he has questions. We all react differently and there is always an element of denial and not wanting to know it all – just what you need to know at that moment in time to get through that particular hurdle. Before you go into consults (I used to record them) get him to verbalise what he would like to know and write it down. The bone marrow biopsy will give you a cytogenic profile which will determine if he is low/standard/high risk. You may want to know this but your father may not so make sure the questions asked are those your father wants to know the answer to only. Also, when you have cancer it can become all consuming and the main topic of conversation when everyone knows but he may not want to talk about it much. I have never really discussed anything about it with anyone but my husband – and even that’s limited and that’s because I never wanted it take over my life – I want to lead a normal life and that does not involve giving C anymore air time than I can possible can. We all react differently but make sure your father is in charge and owns this – it his disease not yours and I suspect he may want to protect you as much as possible from the outfall of this. What got me through treatment was short goals and lots of little treats – nothing much – could be going out for coffee etc but taking time out of routine to do “nice” things, family things, outings. Talking about it never helped I found it depressing and dragged me down but a nice walk, meal, cinema etc uplifted my mood and made everything copable. Good luck,
Rebecca
Hi sorry – only pop in now and again (I am just 18 months from SCT). !8 months is a figure from the US Myeloma beacon site, think I have read someone on here recently debating SCt following velcade treatment that 18 months extra was quoted by his consultant? Mine gave an average upto 2 years but there are those that get much more etc. All very individual and perhaps influenced by our cytogenic profile of low/standard/high risk. I am high risk so am pleased to have got 18 months to date drug free and counting. MM is very individual – I guess even with the cytogenics card thrown in – I try and remember this. SCT is just like any other treatment option – it may or may not work at all, it may be incredibly effective, it may not be that effective but good enough to keep it at bay for a good drug free period. We are in the gambling business now, I’m afraid. I hope lady luck is with you!
Take care,
Rebecca
Fingers crossed all goes well for you now from this point on. So pleased he has got to this stage at last. Japanese proverb “Fall 7 times and Stand up 8”
Take care (Both of you), Rebecca
Hi Alan, glad to hear everything is progressing nicely and hope your 100 day test goes well for you. Sounds like you are keeping active and I think that’s the answer to a speedy recovery. After 6 months I felt I was back to normal fitness etc tho my bloods really took a very long time to look Ok. Be careful of a mental “dip” which seemed to hit me at say 6 months and I think it was because I resumed life/work as tho none of this had happened but whilst still thinking about it a lot – the transition from focusing on ending treatment and starting a new phase and mind game of “wait and watch”. As time goes by it does all get easier or, I guess, it becomes the norm and you get used to this 3rd wheel in your life. Enjoy and take care. Sounds like you have the option to have maintenance treatment or not – I wasn’t eligible but am happy to say I wouldn’t swap my 18 months with no treatment/drugs. Drug free is great. Enjoy
Rebecca
Hi Bernard, glad to hear you are doing so well – a very quick return to work – I could have gone back but chose to have 6 months off to focus on me/life/fitness as, let’s face it, we have been through a lot. I think it’s important now to not slip back to work focus etc and to consciously look at what you want out of life and a plan on how to get there for you and your family. Now 17 months on drug free I feel I am as normal as anyone and time is not more limited – I Know this is not the case but when your are well etc it is easy to …not waste time but… lets say not utilise your time as best you can to make you/family as happy as can be. My outlook has changed a lot in that I try and do things I/family want to do rather than muddle through life (like it was pre MM) but again, it’s a different mindset and needs mentally flexing to stay focussed. I hope your objectives are your/families personal goals in life. It is a difficult balance when young – you don’t want to blow all your money doing what you want to the detriment of future financial security but I have found you don’t need to blow all your money to be happier. When diagnosed I tried to compile a bucket list as an objective but found I appeared to lack imagination as all I really want is to do things with the family and we have – not my list but more theirs but sharing in their happiness is I guess my objective – doing something together.I do, however, treat myself much more with “my time/hobbies” and reduced my work hours. The check ups do get easier as time passes and I now tend to gauge myself on how well I feel. I have even stopped asking for prints and analysing everything like I did for the first year – quite a breakthrough and my dr keeps asking me to go on 3 monthly checks (currently on 2 months) and I keep saying I’m not ready to do that yet but have told him I will consider it soon! Enjoy this time – don’t waste it – aim high and stay focussed. Without sounding weird I have found hiking in the countryside a great calming influence and every now and again I like to walk on the coast and see the sea. It always appears uplifting on many ways. Now’s the time for “whatever floats your boat”.
Rebecca
Hi John, had my sct xmas 2013 and currently still in remission – had velcade and dex for 8 months and got a vgpr. I was very gungho abut choosing sct even tho kidney gfr was 28% and making it higher risk – however survived and was back to full fitness/normal life in 6 months. If you are unsure there are some things you should explore which may help. Velcade/dex whilst good at knocking it down is not known for its long remission – I stopped treatment in July and the consultant was getting tetchy that a hospital hadn’t taken me in October in case I needed to resume treatment. Again it is all individual I was quoted 6 – 9 months average but the helpline said they had known cases of 2 years from it. What is your cytogenic profile? if you have no abnormalities and are low risk it makes the odds of chancing it and not doing it a bit easier. I am high risk which is why they decided to do it – and novel drugs do not impact my particular profile. Regards SCT remission is again individual but the average is considered to be 18 months – again some will go years and for some SCT is refactory. SCT made my light chains within normal range but did not touch the Minimal residual disease of .3. Whilst America question its use as 1st stage treatment we should always be mindful that they have many more drugs at their disposal and seem to treat it as individually as they can. Here we have a standard set of treatments to go through – regardless of cytogenics and current knowledge of what is likely to work best – and our drugs are not finite. SCT is known to deepen a response and velcade is not known for a hugely lengthy response. Wait til relapse for SCT? my husband wanted me to do this as I was so well at the time but they advised next time round I may not be in as good a position healthwise; the MM will have developed resistance to previous drugs (and when they harvest they don’t sieve out the mm cells!); due to resistance of previous drugs you may not be as low in numbers as you are now which means the stem cell harvest is potentially not as good. QOL? if you aim to get back to normal following SCt you will -may have to work at it for a while but you’ll get there. It’s unpleasant but doable. I liken the whole experience to childbirth it’s not nice to go through but once you are through it it’s soon forgotten. Do not underestimate, however, how SCT affects you mentally – not as much at the time but lots of people find a real dip after a few months (personally think its like post traumatic stress once you have come through one hell of a difficult time – no matter how positive you felt going through it. SCT is a real drain of strength on the whole family and how it affects them long term is not be underestimated but…. I would do it all over again if I thought it would give a good drug free period. When velcade relapses you will no doubt go through the maintenance drugs until they stop working/can’t be tolerated. Good luck with your decision and remember “run your own race” and do make sure the decision is yours alone. (My husband totally opposed the SCt – mainly due to kidneys – but I knew I did not want to be on permanent drugs if there was a chance to lead an unrestricted/less tired life)
Rebecca
Hi – I had a rash all over develop and was on piriton (which didn’t get rid of the rash for weeks) and this was attributed to allopurinol – well known for such side effects. Never had a red face but have heard that dex can do this but then subsides – not heard it with the tightness but when I had dex by the teatime my face had puffed up quite noticeably which I guess could cause the “tightness”? Good luck.
Rebecca
Hi Richard, sorry to hear you are back on treatment that’s a real bummer (understatement). I had my SCT Dec 2014 just before you and dread the day of treatment again after being treatment free. I know the SCT didn’t do what it should for you but statistically only 50% of people get more than 18 months remission from Sct- not a fact I focussed on, or even acknowledged, at the time but it sure is a focus now! My initial tratement was 40mg of dex once a week with a velcade jab – no breaks in treatment for 8 months. I think the 40mg just once a week you won’t find too bad as there is time to recover and enjoy some “free”/normal time before it starts again. Think the weekly option was considered more gentle than how it’s normally done where you have a 1 week break in 4 I think. I found velcade fine and only got really fatigued and some pn at cycle 6 (most do 6 not 8 sycles I think anyway). The worst bit was the injection site would go bright red and feel as tho a red hot iron was on it for a good night afterwards. Had it all on a Tuesday so by Thursday/Friday all was back to normal with me and got some good quality normal time. Best wishes,
Rebecca
Hi Vanessa, I am 16 months post SCt and for last 2-4 months only- since SCT – have had a cold/cough/chesty etc. When I went for my bloods 3 weeks ago it was a day where I had a temperature, felt dreadful like I had flu and thought this would be reflected in my bloods and light chains. When I saw the consultant my bloods were good, neutrophils etc ok and no rise in light chains which surprised me. He told me my immune system was that of an average person and when I asked why I felt like death n was constantly catching things it was put down to me working etc and mucking out my daughters pony (just the chest side of things)- which I was to stop. Around me loads of people have been catching things and unable to shake them off too so I think I’ve just been unlucky and it is not related to MM. Inevitably, as a consequence of MM there is a danger that we attribute everything to it when it isn’t really. For instance, I have v low kidney function also and when I play tennis anyone who shakes my hand remarks they are like ice – as they are – this can be a side effect of poor kidneys and I know people after SCT always say they are colder – but I’ve always felt cold and had icy hands and I have to remember this before I start blaming the transplant etc. It’s an easy trap to fall into and I think magnifies the constant “mental” awareness we all now have.
Rebecca
So sorry to hear this news – he was very generous in spirit, optimism and support which I guess is why this is seems so out of the blue. Condolences to you all.
Rebecca
Hi Amanda, don’t come on here much now but just reading and note you are going into SCT with kidney failure – I had mine Xmas 2013 with a gfr of 28 and it didn’t impact on them (negatively) at all. Had it done at Leeds and they did say they have had a patient on dialysis who came off dialysis after SCT when the myeloma burden had been reduced. Good luck with it all – it’s particularly scary with little kidney function with the risk of infections etc but plenty have done it.
Rebecca
Hi Andrea, All the best for Sunday – I had mine over Xmas 14 months ago and don’t come on here much now – just enjoying the remission/calm I guess. There is plenty of advice if you search under this topic but things I would take:- cheap packs of underwear from Asda or primark to throw away – I’m sure you’ve heard of the S&D time (not nice but doesn’t last forever remember), a snuggly fleece- the rooms are very cold due to the ventilation system of keeping all germs at bay. Little pots of rice pud, custard, jelly in case you have a sore mouth or can’t eat much and want to keep trying bits of food. A count down calendar from when you go in – aim for 18 days to be in and every day cross the day off – a bit like a prison sentence. No matter how rubbish you feel per day when you cross it off and see you’re 1 day closer it’s a big lift. Just take it all in bite size pieces, a day at a time, 16 -18 days is nothing – the first few you won’t feel rough then you’ll get the worse bit and you’ll know yourself when things subside and you pick up – 18 days is nothing in the grand scheme of things and being drug free and resuming “normality” so just try and focus on the short time scale that it really is. I had some audio books and couldn’t settle to Tv etc and found them quite restful (did the Twilight saga!). Oh and a baby soft tooth brush.
Hoping you get an easy time of it, Rebecca
