Hi Mark – at diagnosis my kidneys were about 6% and I was being sent for dialysis until they discovered MM. I only had Dex and velcade (kidney friendly). As the Mm burden came down my kidneys improved and were in low 20s when I had my SCT – accepted by Leeds because of poor cytogenics – but could have wiped my kidneys out – but didn’t. I worried more about dying from kidney failure than Mm as then 51 and in low 20s. Was constantly told they could not improve – as kidneys cannot regenerate. I sought out success stories and was told by fellow mmers that they did get little gains after 2-3 years. It took about 5 years to get me to a stable 40% – perhaps that’s how long it took to get rid of the after effects of chemo/SCT? I don’t know but know of others who very slowly improved function. Once off the chemo your kidneys will improve. I did research kidneys and eat more kidney friendly but nothing excessive. I resent now how I was consistently told they would not improve…. we all need “rebellious hope” and follow the path of positive actions – my outlook was always a glass half full and I believe ultimately it makes a difference.
Hi Mark, I was diagnosed nearly 10 yrs ago at 50 yrs – the myeloma type that impacts kidneys rather than bones – diagnosed about 48hrs from death – re renal failure. I have high risk genetics and prognosis seemed bleak.I am currently 8yr 8 months from SCT and it took a year of treatment to get me to SCT shape. I was told it may give me 18 months remission or, if lucky, might get 5 years. Yesterday I played a tennis match for 3 hours in the heat! That’s how normal my life is now. Always remember MM is so very individual that you cannot accurately predict your “time” from stats. When I had my SCT consult they said some people they thought would do well didn’t and others they thought would do badly didn’t – he was very honest and said he felt like a “bookie”. I was in a dire position and trawled the internet etc to find the positive stories of 20 yr remissions etc and there are absolutely plenty. Another year you will look back amazed at how life has resumed once again.
Rebecca
Hi Stanley,
You have been busy! Glad to hear you’re over the other side of the hill now and you can soon get back to “normality” – whatever you choose that to be. Must have been gutting to have another harvest – I really hated that as much as the SCT tbh.
I am well, very slowly going out of range now but should achieve 8 years drug free at xmas before any treatment is needed. Not at treatment options stage but guess it’s whether to have a 2nd SCT or not. I only collected enough for the 1st SCT and as my immune system is always close to rock bottom I don’t think I’d get enough of a decent collection – tho don’t want the maintenance route either due to everything being so low when I haven’t had treatment for nearly 8 years. Will just have to go with my gut feeling at the time. Why do you think your 2nd SCT process was easier for you? Is that on a mental level as knowing what to expect etc? Whilst I felt very gung ho about it first round it really terrifies me now as I know what it’s like and I’ve actually got very wimpy now… but maybe that’s because I’m not at that stage yet.
As for dress sizes…I spent most of lockdown walking at least 23,000 steps a day so can match your dress size reductions but won on the pleasure process!
Rebecca
Sorry …Richard. Was re- reading the posts n wondering how Stanley was doing- hope as well as you. Think you’ve aced it!
Hi Stanley,
Wow that is fantastic news how quickly it has been brought under control again. You must be well chuffed – sounds effortlessly – but no doubt it wasn’t.
Rebecca
Hi Richard,
What did your latest Bmb reveal? Hope all is well
Rebecca
Hi Richard, Sorry to hear things are on the move but sounds like you have a plan that is being tailored to what you want/don’t want. How different that must feel from when first diagnosed? – makes me shudder just thinking about that time of initial diagnosis/treatment – totally out of control. Yes covid/lockdowns and dexy on top would not be a good move for family life! Hope all services are running as normal in Germany – not sure that is the case here in the UK tbh. Lost track of it all as my haematology unit has closed due to lack of staff so disbanded to far away places courtesy of a phone line. I made the 7 year mark at Xmas treatment free but levels now slowly rising out of range but as I am not yet requiring treatment “they” won’t discuss which hospital will now do it until it happens and I have no relationship with whoever phones me for blood result update. For me, lack of control and inability to have input/forward plan what may happen shortly is almost like starting from scratch again but with more knowledge now to frustrate me. Is changing one treatment plan to another still as scary as starting treatment again I wonder? I am guessing you have maintained good mental strength/discipline throughout being on treatment and will no doubt take it all in your stride. Hope all goes well and this combination is even better for you.
Take care
Rebecca
Hi Deano – I was diagnosed at 50 and daughter doing her GCSE’s – she has completed her degree and currently living abroad…if I could have foretold this at diagnosis I would have saved myself a lot of angst (very much an understatement!). Don’t despair – new treatments are coming out and often statistics are based on older treatments and much older people with perhaps other comorbidities. I am 8 years since diagnosis and 7 since SCT and remain drug free and living a normal life not impaired by MM – and you will too. Often MM is very much more a mental battle but once you develop coping mechanisms that work for you and you see life resuming as normal again you will learn to live well alongside it – believe me it is a marathon not a sprint – so you have time to breathe and focus on how you can live with this mentally. I chose exercise, motivational quotes, blasting songs, mindfulness. Whatever suits you – find it – and start disciplining your mind, like flexing a muscle. You will learn to put MM in a box and only let it out when you choose to – focus on that and you’ll do just fine.
Best wishes
Rebecca
Hi nbc, When I was taken into hospital – at very critical stage due to misdiagnosis- like you I looked at it via my daughters perspective. She was revising for her GCSE’s and I was so worried about affecting her, not being around to see her settled etc. Anyway GCSE’s came and went then A levels and now completed her degree and off living in another country atm! If only I knew that in the beginning I would have saved myself a lot of self torture. Myeloma life is now a long and winding path to navigate – some bumps on the way – but then that is life. You have time to breathe and more importantly time to develop coping strategies that work for you and keep your mind strong. None of the chemo or the SCT was ever as bad as the damage my mind caused me. I read lots of books on cancer, mindfulness, positive thinking etc to help. I could never envision a time not dominated by MM but it does come. “Marathon not a sprint” used to be quoted on here and it really is true.
Rebecca
Hi Dennis, I didn’t think you were being negative just a realist. I just like to remind everyone that we are all unique and not a statistic. My consultant would not give me a “date” and so I searched on the internet – big mistake. The survival time on the internet is misleading due to the rapid increase of treatments available and doesn’t reflect the general health of the individual also. Take care
Rebecca
Hi Dennis, Putting a deadline on us is the first thing we want to know tbh but as myeloma is so individual and with all the new treatments I do not feel it helpful. Due to my kidney damage on diagnosis I was told (much later) pre Velcade treatment I would have lasted 4 months but I am about 8 yrs since diagnosis! In my clinic I met an elderly lady who has had it 16 yrs with only 2 treatments – of the same drug – keeping her in remission. Another person had it for 20 years n still going strong. I guess I look for the exceptions – and there are plenty. It is recognised, I feel, that the younger you are the stronger you are to withstand multiple treatments etc and treatments are advancing. Aim for 80 yrs at least! Take care
Rebecca
Hi Kayle – I think most people go back to work full time after Sct/in remission. I chose to work only 2 days a week after SCT but that’s only because I could and I wanted to do other stuff etc. I play a lot of tennis (2 hrs last night n 3 hrs this morning – tho soaking in the bath now as have an important match on the morning!). 6 months post SCt I was at full fitness and playing league matches. This is a blip in your life only – I was in a very dark place at first and could not imagine life ever being normal again – but it will be and as time goes by you’ll learn to lock MM away and
think about it when you “choose” to think about it (like me atm). Mm is much more a mental battle and the sooner you discover/develop coping strategies that work for you the easier it will become. My lifeline was exercise, positive quotes, mindfulness and most importantly recognising that whilst you cannot control the disease or the treatment – you have full control of your mind, your thoughts, your reactions – it is this area we all need to flex, like a muscle, and keep strong. Do what makes you happy and if you are doing stuff that doesn’t then now is the time to be bold and embrace change.
Rebecca
Hi Mark, I was 50 when diagnosed. I have high risk genetics and it aggressively attacks my kidneys (not bones!) in even small amounts. This Xmas will be 7 years remission post Sct without any maintenance (Tho I have my bloods done next week – but feel well). MM is extremely unique to each individual so just because you have high risk genetics it does not always pan out that you will be difficult to treat – which is the important bit. I know my genetics attack aggressively but, to date, has been easy to treat/keep at bay. Always remember you n yours are unique so you have every reason to be hopeful, buck the trend etc. Stay positive and keep up an exercise regime even when tired – will keep you strong on many levels.
Hi Jess, I had mine in Leeds and the isolation rooms appear very cold – think this is typical. I needed a cuddly warm fleecy blanket – for the comforting feel of it also. When appetite goes or sore mouth – I had little pots of custard, jelly, rice puddings – a tip I got from someone else. Audio books were great as less effort. Bought cheap packs of knickers as runs can be an issue n then just disposed of them n no washing. Baby wipes are useful. Didn’t have a head dress but wished I had a woolly hat or a headscarf. I was in a room of my own throughout so didn’t need headphones – not sure if policy has now changed on this. Laptop. I found it hard to settle to do much and you do get the films channels. I did make a count down calendar estimated 14 days in max – and at the end of the day no matter how bad it had been it was great to cross a day off and recognise one more day closer to home.Made it seem very doable as it broke the jail sentence up somewhat! I would make something like a countdown “advent type” calendar and everyday for 14 days you open the flap or box and inside is a treat for now or when you are out – Like a day out somewhere special etc. Even a favourite chocolate. It’s a long haul n tedious in that you don’t have a lot of energy but are equally bored. Little craft type projects to try? Skin got dry so body moisturisers. Thing that helped me most was little funny messages about what was happening at home and a few calls. I was very active upto going in etc so it was a real culture shock but am guessing after lockdown a couple of weeks in isolation will not seem as big a deal as normal so hopefully that will be a plus point. I can’t think of anything tbh. Just lots of treats and plans for the future.
Rebecca
Hi, I may not be “typical” in the MM world as I have always sought to hide my condition from others – even though I underwent Sct. I have not exactly shielded- shopped throughout and looked after my parents – though am as careful as able and have always worn a surgical mask whilst shopping from day 1 and I walked the dog. I am now out playing tennis but……I have never in all of lockdown felt so concerned as I do now. Social distancing is more or less gone now, shoppers have stopped adhering to the one way system through shops, masks seem to have fallen by the wayside ( except me locally). Whilst walking the dog throughout lock down people gave you a 4 metre wide berth – now nothing! Having said all that, and maybe because I choose to keep my condition a secret, I would not wear anything to differentiate me but – more importantly – the shift in attitude by people leads me to think they would not alter their behaviour for me. I felt safe when everybody else was trying to stay safe and now I feel like a salmon swimming upstream! Because of the swing of attitude from the general public I think I will resign from my job come August in an attempt to stay safe as I believe even those with mild symptoms will not declare it. I am not a cautious person and weigh up risk/reward in life but am very concerned now – but never enough to wear something to single me out – but all indications I have experienced with the shift in change leads me to believe it would be totally ineffective. Would like to have been shielded longer as have no rosy predictions the way things are panning out.
