Hi Stanley,
Unfortunately, I have seen no posts from Richard but just come on now n again – probably near blood time – so could have missed him.
I had a hip replacement in June (very worn/impinged) I was given an “active” hip replacement and as I’d only stopped tennis 6 weeks before the op (due to the pain) I have recovered fantastically well and was ralleying – but no running- at 7 weeks and at 12 weeks running around as good as 10 years ago n pain free. So I have retained my position in the teams and can actually play twice in one day now without any adverse effects! Tho trying hard not to over do it. When I had the op my lambda light chain was scarily high for me n affecting my kidneys and they didn’t know if it would revert back to (my new) normal but at 8 weeks it did! I think that’s when I was fully on my fitness regime so I really do think exercise can play it’s part in keeping Mm at bay – my theory and I’m sticking to it!
Hi Stanley, What a fantastic early Xmas present you have received. So pleased to hear everything is better than ok and no drugs! I have been out of range for 2 years now but the numbers are small and don’t really budge and I have no symptoms so hoping it continues like this for a few more years. Will be 12 yrs at Xmas since my Sct with no maintenance so all good and hopefully it’ll be the same for you without maintenance.
Take care
Rebecca
Hi Les – As people say this diagnosis is a marathon not a sprint – so take your time to adjust to your new norm as you have that time. There are many treatment options nowadays so the main focus is best on your mental health/strength. Discover your best coping mechanisms, flex the brain muscles to become mindful and being in the present and recognise that worry only empties today of its strength. I had 9 months treatment then Sct and this Xmas will be 12 years totally drug free (no maintenance on offer at the time) and living life as normal. There are so many long remissions out there and so much to be hopeful about. I like to remind myself that I alone am totally in charge of my own emotions – a strong positive mindset will really help along this long and winding road. Take care.
Rebecca
Hi, I am just over 11years post Sct with no maintenance drugs. I had poor kidney function so not suitable for trials which was then the only way to get maintenance drugs post SCT. I also have high risk genetics! If I’d had maintenance I would be posting now attributing the 11 years to maintenance! This shows the individuality of myeloma and the fact that you will never really know if the maintenance gave you the remission or not. I was glad to be off drugs tbh and my consultant saw it as using up another drug option earlier – tho this was 11 years ago. I’ve really enjoyed being drug free and know there are an arsenal of drugs available now when needed again.
Rebecca
Hi,
Yes I have a dog as part of the family (and has run if the house) and the only thing I did differently is not pick poo up. My dtr also had a pony so by necessity was at the stables and mucking out (was totally advised against this but life often dictates needs). I wore a mask due to the dust in the straw and changed clothes immediately afterwards. I was uncomfortable doing this tbh but had no health fears re my dog – tho didn’t kiss the dog- but the comfort gained from the dog far outweighed any perceived risk. I know we have to be in very sterile conditions so it easy to make assertions about pets but tbh if you went to get a paper and paid with small change etc the money would be as big a risk I’d say re germs etc.
Hope everything goes well for you.
Rebecca
Hi Lynn, The SCT is very doable and short term and it really helps when you are planning treats/breaks long term. I am just over 11 years post SCT now, with no maintenance treatment, even tho I have high risk genetics. Life will get back to normal over time – I wished I’d truly believed that during the process as I would have saved myself a lot of angst.
Good luck 🤞
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 👍🏻
