Hi John,
You have achieved fantastic results on induction, sorry to hear about the bone issues. The fact that you have got such a good response is hopefully an indication that your MM is easy to treat and you will have long a remission. The fact that they are not wanting to to do a double Sct is also an indication you do not have any high risk translocations also? Another plus on your side. Young and fit – another tick. At diagnosis it seems so bleak, doom and more doom but if you search for the positives and the stories that buck the trend (that’s always referred to) you will see light and hope – recognising you and your Mm is unique so your response can be equally fantastically unique (in a good way only!). I mentioned in my post the SCT urgency for me was due to VD without a third agent not known for long remission. In the waiting room I met an elderly lady who had a very long remission with just VD and as her numbers were starting to rise they were giving it her again because she’d had such a fab response the first time round! Often when we first read up on things we read the “trends” but when you dig deeper and read “all the scale” it really doesn’t appear to be much more scientific than rolling a dice and hoping Lady Luck is on your side and you have enough chips for a long game! I like to think if I live life well and stay fit to boot with a bit of Lady Luck I’ll be at the table for the long haul….obviously not science based but how you cope mentally and live with it is the real battle that you can definately win. Seek out the good stuff and dismiss the rest as not applicable to you and yours – as you are unique – and you’ll do alright.
Take care
Rebecca
Hi John, This indeed is a very worrying time to have to cope with covid pandemic and a Mm diagnosis. I was diagnosed at 50 but with severe kidney reduction – I was on velcade/dex only due to kidneys (and this treatment alone is not known for a long remission) I SCTd 4 months after finishing induction. I posed the question of further delaying Sct until 1st relapse as I felt so well etc off treatment. For me, SCT was always a gamble as kidneys were very low and was told, for me, to SCT then as in 1st relapse my kidneys may be worse and I may not be as fit/able to SCT. Fair point – but unless you have another comorbidity that comes into play – consider SCT as just another treatment option along with many others you have. At the time of mine they were trialling harvesting the stem cells of patients to be used in SCT at 1st relapse. I believe this is because whilst SCT in the UK is considered the “gold” standard of treatment – as more and better treatment options become available to us it is unlikely to remain the gold standard. Thalidomide will hopefully keep your figures the same indefinately and if it doesn’t they will add to it or put you on revlimid maintenance. Often older people choose not to SCT and live well on maintenance. At 49 you are in a good position in that your age and fitness/organ fitness should be excellent to withstand and benefit from many treatment options – of which SCT will be one perhaps at some point. I would worry much more about having an SCT now with covid around as your immune system will be so susceptible to catch anything. There are many people out there who have had fantastically long remissions on the induction therapy alone but as MM is so individual/unique it is hard to study when best to SCT …or not to SCT at all. As treatment advances I think we will look back on SCT at first stage as barbaric (tho totally doable to go through) and a sledgehammer to crack a nut – but the “gold standard” title was earned when treatment options were much more limited and less advanced/targeted – so sledgehammer needed then but a small ? now. What was your induction combination and have you achieved a complete response from it to date?
Rebecca
This website, on the covid hub, states shield even if in remission. I have pointed this out to the Surgery and they said they will defer to the Myeloma Uk advice but……very busy, wait another week in case it comes from a specialist unit and then contact the gp and they will issue a shielding letter…when they get a template from the govt – not yet issued with one – tho they have received copies! always reluctant to take any action. On the plus side you have cheered me up no end with your remission longevity and have it in my to do list to emulate it! (Currently a mere 6+ years since SCT ….but little acorns n all that)
I believe you will always be immune compromised as Mm is cancer of the immune system so should shield albeit in remission and no treatment – as per Bloodwise and this website. But hey, more importantly, how fantastic being in remission for 18 years! Did you SCT in that era?
Thanks…..you couldn’t make some of this stuff up atm! I asked my gp for a shielding letter for work purposes and got a text response that I was not extremely vulnerable as not on treatment and social distancing would suffice …..from the same surgery who badly misdiagnosed me. Was told to wait another week as specialist units are now sending letters out – spoke to haematology who advised they have had nothing to do with it? Always seems like a fight with gps to get anything done. Will try n get a letter next week from them as need one for work.
Thanks, I haven’t received one and was wondering.
Hi, Great to hear you are still doing ok and yes Germany does appear to be a model example of how to go the CV thing. I am told to self isolate/shield for 12 weeks – my immune system is,as always, below normal range and my kidneys not at full throttle – tho now at 47% on a mainly vegan diet now! (Mainly to comply with my daughter to be honest). I am not being strict atm and still shopping etc. Tennis closed 3 weeks ago but I just joined another Club and played on Monday (adhering you social distancing rules) and we were on lock/shutdown Tuesday morning…..most expensive game of tennis I’ve had! But feel the small club will reopen quicker allowing social distancing rules only. Quite difficult for me as because I have a letter telling me to not go out for 12 weeks it causes lots of arguments in the home – tho I feel I am being careful. Nice to hear you say “your teenage daughter…” when diagnosed it all seemed so bleak but we are all proof life goes on, perhaps not on the path we thought we’d tread but still an interesting and fulfilling path never the less.
Rebecca
Oh Stanley, really sorry to hear that – even though I know remissions end and relapse starts at some point it always feels like a huge blow. Good tho to hear you have lots of quality stem cells left. 12 weeks self isolating and actually properly self isolating is quite an ask also. My figures have not changed and, am well, so whilst I have 12 weeks off I’m afraid I am not being as strict as outlined. I am trying but very difficult mentally to do properly. At least the sun is shining atm and no doubt the obligatory garden/home jobs list compiled/displayed. Take care and let us know how you get on with it all.
Rebecca
Hi Stanley and Richard – you have stood me up on Stans’ recent anniversary! Hope you are both keeping well and you are just having too much fun self isolating atm?
Rebecca
Hi – As someone who had no bone involvement but very reduced kidneys I found exercise was incredibly mentally uplifting and whilst very tired on chemo always felt better for going for a walk or swim (I was told I could swim throughout chemo) – once I’d motivated myself to do so. With bone involvement I guess you have to choose your exercise regime wisely ie less impact type but feel it is really beneficial to regain strength and sanity. The stronger your body is the better we can cope with the demands of chemo and relapse. Even after SCT I gauged my recovery on how I could walk a little further each day and that in itself gave me a positive to hold on to (I was 50 at diagnosis). Your wife is very young to endure this and am sure exercise and weight goals will make her feel more like her old self. It is amazing how good you feel about yourself – even if today’s goals are not to the same degree as pre MM. My hubby made me exercise throughout and whilst it was a struggle at first it really became my saviour. It is important to listen to your body but also, as always, to push that little bit more. My advise is be sensible in goals but ensure the goals keep moving forward – it’s a great uplift to body and soul.
Rebecca
Hi Jonny, I think you will be fine now. I used exercise to help me through my treatment and to gauge my recovery and, most importantly, to keep sane. At one point I had an unhealthy relationship with exercise as tho I wanted to punish my body for letting me down? Now when I know I can run round ok I know I am ok and well and my bloods will reflect this on my 3/4 monthly checks. There are many runners on the Beacon site who improved their times after SCT – because the MM had been there in the background before the actual diagnosis. Whilst treatment eventually tires you out you will always feel better/re-energised with a brisk walk. Exercise is a great focus, mentally and physically and will help keep you strong/ recovering quicker – providing more bone issues of course. Listen to your body but go for it!
hi Jonny, yes I am fitter than most currently play about 12 hrs tennis a week and other than in my own mind there is no visible difference. Took me 3 months to get back into tennis after SCt but was back playing in matches within 6 months. I have no bone involvement. A double transplant sounds a good move so good luck with it all. You will get physically back to normal it’s how your mindset is and how easy you find to put MM back in the box after treatment which, for me, was the hardest….marathon not a sprint!
Hi Jonny, Sorry that you are here. If you are high risk then you likely have a translocation known as high risk. I have translocation 14:16 known to impact kidneys and therefore considered aggressive. I was diagnosed at 50 with kidney failure altho my Mm was relatively low. However, this Xmas will be 6 years post SCT, in remission still, and not on any drugs. MM is very individual and unique to you – you are not a statistic and the translocations that put you in the high risk category – are a mere “predictor” of high risk – how you react to MM is very individual. My Mm was easy to treat and that is the most important thing. Some translocations are effectively combatted with the newer drugs also. How you react to treatment is more of an indication of high risk. If you search on the Beacon site and internet you will find those classed as “high risk” who have been treated very successfully and are long “livers”. You can always find the success stories that show how individual MM is and that is what I always focussed on. My kidneys were badly affected – mainly due to long standing misdiagnosis – I was told my kidneys would never improve and was in the low 20s after Sct (which was an improvement). Over 6 years they have very slowly increased and are now at 46%. At my last consult I actually pointed this out and queried how this could be? and was told it can happen over time – but no-one told me that when I left hospital and my worry over kidneys was as much as the MM. I used to search for success stories to give me hope – and rightly so. Statistics may be a predictor for the average person but – you are neither Mr Average and you are also very young, strong and with lots more treatment options available to you due to your age – than the “average”. The more you read about MM the more you will see no 2 people have the exact same MM, no 2 people react the same. Some people with standard risk may struggle to find a treatment option that works effectively with long remission which would make them more high risk than how I consider myself now – albeit I am classed as high risk. It takes a while (understatement!) to get your head round MM but you are in this for the long haul – a marathon not a sprint – there are so many treatment options now. Also remember when you look through stats online etc many of these were before the new more novel treatment drugs and the average age of getting MM is much older and there may be other health issues also. It is extremely hard to have to live with MM at such a young age but your body is stronger for the challenge – now is the time to focus/work out how to keep mentally strong and live well with it.
Rebecca
Hi Frances, Sorry that you are here but am sure you will “handle” the new you/life with aplomb. You have done well to gain acceptance in a short while – I am about 6yrs few months since diagnosis and I vividly remember, but try not to dwell on, those early months where I felt I went through a grieving process for me and my life/future – bleak days. I am 5yrs 3 months post SCT and still drugs free. Life is good but it has taken such an array of emotions and mind sets to get here. The focus on SCT as though that would be the end of it but then the realisation of a new mindset to “watch and wait” and trying to lock MM in a cupboard. From researching/devouring everything about MM to now just keeping abreast of things – from MM constantly being in the forefront to it still being there but almost like an old friend now and with ease. I have always felt that the only way to live well with this is to recognise mindset is everything – from mindfulness to finding your own coping strategies that work for you. To this day I have a small book of inspirational quotes in my bag that I used to refer to to get my head round it all/focus on not wasting energy worrying to now just enjoying them as a prompt to stay in the light. It is all doable depending on the cards you have been dealt – or as one of my quotes pointed out “it is not always the cards you have been dealt but how well you play them” – I recognise that we cannot change disease biology but we can choose how to live life well inspite of our hand dealt. One of the good things I got from mindfulness is recognising that we are solely in charge of our emotions and if I am upset by something trivial it’s because I choose to be upset – often the easiest path to follow. Will stop my rambling now – Mm today at the forefront of my mind as just had my 4 monthly consult – all is well still but your post invoked in me a trip down my mental memory lane. It is a rollercoaster ride for sure but one where you will start to know the twists and turns and when to brace yourself and when to let go. It is all doable and I live a good life which has also involved changing priorities and goals for the better.
Take care,
Rebecca
Hi Richard, Great to hear you are still ok – I like to keep looking on the site to see how everyone is faring.
For those that are still in the dark/twilight zone of it all my Friday has consisted of an individual tennis lesson followed by 2 hours group coaching – pub lunch and a big tennis match tonight! Life will resume from the pit stop but with a more heightened pleasure and with more assertion of priorities in life. Believe that this is a Marathon and not a sprint.
Rebecca
