Hi Silver, It is good to hear that treatment has been so successful to date. I would just like to say re kidney function – as the Mm numbers reduced my function increased every time the MM burden decreased. I plateaued at low 20s and was told they could not/would not improve further. I found my kidney function the hardest part to accept tbh. As always I sought out the success stories and got in touch with someone who told me of how his wife’s kidneys improved over time and also of someone he knew who SCTd on dialysis and 3 years later came off dialysis. My kidneys took about 5 years to gradually improve to around gfr 33 and slowly improved further to now a stable 42ish for probably the last 5 years. I don’t know why – perhaps it takes the body a long time to recover from the trauma of chemo/SCT but I do know that whilst the consultants were saying there can be no further improvement there were Mmers telling me their stories of gradual improvement over the years. Your mum is young and fit – so not the average statistic for starters. Don’t lose hope there are so many examples out there that prove the individuality of MM. I am a great believer that fitness/age gives you a winning edge.
Hi Silver, Sorry to hear about your mum. Just thought I’d write to let you know not all is doom n gloom with high risk genetics. MM is highly individual and whilst there are predictors of high risk it will still be dependant on how it individually affects you. I have the 14:16 translocation – which is high risk to kidney damage – My light chains were only at 1120 but I was at 5% kidney function at diagnosis (am now at stable 42). After one line of treatment and an SCT (with no maintenance treatment) I remain drug free nearing 11 years on. I was given an SCt (with very low kidney function) in the Hope I’d get 18 months remission! Statistics are just a guide and your mum is not a statistic but a unique individual. Some drugs I am told can negate some high risk genetics. The translocation 14:16 is high risk to my kidney function but hasn’t displayed high risk to treating it (which is the most important thing). There are many drugs now and so many living a long life with MM almost as a chronic condition. I hope your mum is one of them and her fitness will certainly help her journey.
Rebecca
Hi Stanley – Congratulations on your 10 year mark. If only we knew at the beginning we’d make the 10 year mark -and in such style – we’d have saved ourselves such unnecessary angst. So pleased for you. I made 10 years post SCT last Xmas with no further treatment (11yrs plus since diagnosis). Think I have been slowly relapsing for perhaps 2 years plus (not so hung up on dates etc now). It is (thankfully) an extremely slow progression and currently out of range so just waiting on when it impacts. Im still carrying on as tho all ok – thinking I may be on treatment next year (but thought that last year also) – so joined a second tennis club last year increasing my play! I do hope Richard is ok also. Had my bloods done this week hence a peak in this site..so pleased I did. Well done 👏🏻👏🏻🥂
The above is good advice – as I’ve not been on treatment for a long time I forgot the big thing I had was a little notebook of motivational quotes – often found when reading lots of positive thinking/cancer story books. It helped focus the mind back to strength/positivity. What I did find difficult – when I felt time was going to be too short – was to learn to be comfortable with wasting time ie a night in watching mindless TV. Perhaps not wasting time but just doing little things like reading a book etc. I spoke to someone else once who had to learn to be ok with just doing normal stuff rather than large bucket list stuff. I have never done a bucket list as couldn’t really think what to put on it and eventually there was some comfort/peace in recognising I was more than happy just doing normal family stuff.
Hi Suzi, Am so sorry to hear of your relapse after such a short time. I was 50 when diagnosed (nearly 62 now) and tried all sorts of things as coping mechanisms until I established what worked for me. I think it’s all centred on “mindfulness” and recognising whilst you can’t control much of what is happening to you – you are always in control if your own emotions/how you react. Easier said than done but the mind, like a muscle, needs regular flexing to help you remain in control of emotions/thoughts. There were times I felt totally consumed by it all – researching, feeling doomed etc and so I gave myself a designated 30 minute slot each day for all thoughts myeloma etc and then I mentally shut the door and locked away the key. If my mind strayed out of that time period I stopped it – as we are in control of our minds. It wasn’t easy but gave me lots of breathing space. I read positive thinking books n literally tried “turn a basket full of worries into a basketful of wishes” I had a young dtr I was terrified of having no mother – so if my thought was “I am afraid she won’t know what to do.. stuff” I turned it round to “ I want her to know how to do xyz and be independant” when I put it in the jar it seemed positive as I went away to help her build those skills. It probably sounds mad but it helped turn negatives into positive action plans. For instance “I’m worried this is my last Xmas” would, for me, be “how do I want this Xmas to be like”. We kept my myeloma very much a secret and that also gave me headspace as it wasn’t the main topic. I never wanted it to my consume my life, if at all possible. I did go to mindfulness lessons and it really helped me control my thought process/emotions. Living in the moment is very bandied around but done properly it’s very effective. I also found a signature tune that I used to blast n exercise to n always felt great afterwards. Try everything n some things you will just click with more than others.
Good luck x
Thank you Squirrel – I hope all goes well. When I was diagnosed (with a 14yr old daughter) I couldn’t contemplate what they were telling me tbh. I sought out the success stories (back then myeloma beacon US) and other forums and clung on to those with 20 yr remissions etc – albeit bucking the trend but then..it is just a trend. I met an elderly lady whilst I was having treatment and never had an SCT but after 12 yrs in remission had done chemo then had another 6 years and was back for a little bit more. My kidney function after SCT was low 20s and was told, naturally, kidneys don’t regenerate so will stay the same/decline. I sought out the success stories that led me to believe there was hope. 5 years later my kidneys got to a stable 40 and today a stable 45. Perhaps it took them a long time to be rid of the chemo effect I don’t know. I don’t eat/drink differently so now not diet led (tho early on I tried to help them as much as possible). I was always more concerned of my kidneys killing be and tbh resent how my Hope was tried to be extinguished by consultants trying to be realistic- based on statistics. I read ppl saying they have gained an extra 3 years as on maintenance (based on stats) but I wasn’t eligible for maintenance due to kidneys – if I’d been on a trial with maintenance I may be posting today saying I’m nearing 10 years because of the maintenance – but I didn’t have it – so posting 10 years, drugs free! The best second opinion I obtained before a hospital would SCT me was one who said he felt he was sat there like a book maker guessing the odds. Well I prefer to guess my own odds thank you and err on the side of luck, optimism and how I feel. If I’m wrong then at least I’ve lived with my mind in a state of Hope and positivity and that goes a long way – as we will all hit rock bottom early on in the diagnosis and nothing is worse than living in that state.
Hi,
I found the rooms extremely cold (thought they were keeping it cold to kill bugs tbh). A comforting soft fleecy throw made it durable. I’d heard much of the S&D stage so took in cheap pyjama sets/underwear from Primark – plenty – then never worried about hubby bringing in spares etc/having to do washing frequently. Little snacks in case you don’t feel like meals – little jelly pots, custard pots, rice pudding pots I found handy. Some craft stuff go leisurely do – perhaps Xmas crafts? will help pass the time n not too taxing. Audio books were great. And something to plan/goals to set for when you’ve come through it – focusing on better times/well deserved treats lifted my spirits. I also had a count down calendar – I think I set my goal as home in 16 days – and no matter how bad a day it was it was really satisfying to cross one less day off my calendar. Another day done, another day closer to home. It may not be pleasant at times but it is all very doable.
Good luck
Rebecca
Hi Rabbit, Sorry to hear your diagnosis but it is not all doom and gloom – tho at this early stage hard to imagine otherwise. I was 50 when diagnosed with renal failure. I had high risk translocation 14:16 which tends to range kidneys rather than bones- it did – even tho my light chains were only 1120 when diagnosed. However, altho statistically I was seen as high risk this Xmas I will be 10 years post Sct, drug free, and 11 years since diagnosis. We are not a statistic, we are all very individual with very individual MM – so whilst my MM damages kidney quickly it was very easy to treat with just velcade/dex (I didn’t have anything else as kidneys too damaged at the time). Because of the translocation/high risk they were prepared to SCT me , despite low kidney function. I was young, fit and I have far exceeded expectations. High risk does not always mean you will fit the high risk narrative/statistics – trust your gut in all matters MM. Tbh with the array of different drugs they can make high risk be standard risk without SCT – we/our myeloma is highly individual. I would have saved myself a lot of heartache if I hadn’t initially listened to the statistics/probability and trusted how I felt instead. Stay positive, fit and mindful and you’ll have a good life living with MM.
Rebecca
Hi – as an example – I met a lady when I was first having treatment and she’d gone 20 yrs using just velcade and dex twice! The second time 12 years from the first. We are told your second SCT generally gives you only half the amount of time as the first- one guy got 7 years from the first and currently 12 from the 2nd. With the development of drugs etc everything is possible if you find the drug that suits you. If I’d researched all the good stories out there at the beginning things wouldn’t have seemed so bleak. There are alot of people living well with MM but when in that phase it’s human nature to try and step back and not post.I believe local support groups are full of long termers. Believe it too – and if you are proven wrong then the belief/Hope would, at least, have made this long and winding path more durable. MM is very much a mental game – spend your time developing a strong mindset with good coping strategies and you’ll do ok 👍🏻
Hi Derek, I have not yet achieved 11 years post Sct as it took me a year to lower my light chains etc in order to SCT. In those days you only got maintenance if on a trial and because of my kidney function I wasn’t eligible so I have had no further treatment. At the time my consultant said I could look at having maintenance as using a 2nd line of treatment up early – but I was kinda glad the decision had been made and no further treatment. Since SCT my neutrophils have always been below range and with my kidney function I didn’t want further toxicity tbh. As with SCT and any treatment – our reaction is very individual and therefore hard to judge statistically. If I had maintenance I would have put my long remission down to the maintenance – which I know, only now, would be incorrect. There are many people who have hit double figures etc from SCt without further treatment but I guess the nature of the beast is that we are more active on forums when on treatment etc. I was told initially due to my high risk status I might get 18 months remission and if lucky I would be seeing them again in 7 years – unfortunately it is guess work but I like to think it gives us all hope as there are so many of us that don’t fit the “expected” due to the individuality of it all.
Hi MissM,
Similar to you I was diagnosed at 50 with renal failure and about to be taken for dialysis. Lambda light chains are worse on the kidneys and I only had a reading of 1120. Anyway, because I am high risk with translocation 14:16 I was accepted for SCT and think kidneys were then low 20s. I had to get a 2nd opinion from another hospital (Leeds) due to kidney function:expert opinion. I Sct’d at a hospital where access to dialysis was available – but I didn’t need it. I was told at the consult that some on dialysis SCT and then no longer need dialysis – so this gave me much needed hope. The high dose chemo did not damage the kidneys further and think kidneys were slightly better at around gfr 26 when I left hospital. I was told my kidneys would not recover further but 5 years later they very gradually improved to 40 and now in my 10th year they are a stable 42-44. So never lose hope. I would seek an expert second opinion and choose a hospital which has access to dialysis should things initially go worse. My original hospital – which didn’t want to SCT me – would have had to transport me to another hospital should kidneys go into failure – this is not appropriate for reasons of hygiene and the fact that S&D stage would have made it really unpleasant also. I am in my 11th year of MM and have had no further treatment – so it was a good decision for me. We do all react differently but have known others whose kidneys have gradually improved even tho we are told they won’t. At the SCT consult I was told I had a 20% chance of not making it – but I was 50 and ultimately based my decision on my “gut” instinct. You are young and fit – a massive plus that totally skews the statistics they quote. It’s a big decision and when I have to make it again I will trust my “gut” again. It’s all guess work as MM is so individual so go with your belief. Good luck
Rebecca
Hi Derek, Your diagnosis is very much like mine. I was 50 and been misdiagnosed, with no tests, with labyrinthitus a few months before crisis stage. Fit, healthy and never gone to the drs so trusted them (never again – be your best advocate hereon in) Hardly any blood and around 5% function. My lambda light chains were only 1200 but guess they’d been damaging kidneys for a very long while. Once the myeloma burden decreased gfr modestly increased. I was constantly told they cannot regenerate and would never get beyond early 20s. With a second opinion from Leeds I had an SCT a year after risking my kidneys which I think was 16-22 then? I have translocation 14:16 (damages kidneys rather than bones- high risk). Anyway no maintenance offered but couldn’t take it anyway as my blood neutrophils etc remain very low since Sct. So drug free and in remission in my 11th year with a gfr of 42-43. Took my kidneys about 5 yrs post SCT to get to a normal stable. I was distraught re kidneys more than Mm thinking they would finish me off first but I sought out the good stories ie a guy who Sct’d on dialysis and 3 years later he came off dialysis! There are many exceptions – I was told my genetics were aggressive – and yes it is – on my kidneys – but not on treatment’s. MM is very individual/unique to the person so don’t listen to the statistics because that’s not you. There is always hope and plenty of stories to support it – at 50 you are younger, stronger, fitter than the statistics – where the average age of diagnosis is 70yrs – never forget that. I play around 12 hrs tennis a week, long dog walks, life is normal. My gfr does not impact my fitness. Please read my old posts as I rarely post now- but I think they will make things seem lighter/doable. MM is by far a more mental struggle than physical struggle. Focus now on your coping strategies to live well with it.Btw my treatment was only velcade/dex in those days – better on kidneys.
Best wishes
Rebecca
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
