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Hi,
I hope you won’t mind me writing in here as ny father is 51 🙂
we found out in June that my father had myeloma like others it came as massive shock to us.
my first question is does anyone that has been diagnoised ever run? My father was running around 20 k per week before and now were not sure if he can do any. Can anyone please advise? I should add that he has had a broken rib since June which is how they found the myeloma.
Has anyone here decided not to go down the SCT route and how it worked for them?
thanks in advanced for any help.
Hi there, as you will appreciate the damage from MM varies from person to person but regards exercise for your father that is for discussion with the consultant only – who will have full body xray results etc. Obviously the Mm has nibbled the bones to have a broken rib so you need to know the extent elsewhere before any running resumes. At some stage your father will have a monthly bone strengthening infusion to make the bones stronger and once the MM is under control and you know the extent of damage then you can tailor future exercise to suit. I believe if you are able to exercise. and used to exercise, it is good for you but no doubt his chemo will make him feel fatigued and so perhaps strenuous exercise is not the best idea until in remission. I exercised throughout treatment – but had no bone damage – and as soon as able after the SCT (I am 53years) – to me it helped mentally.
Re. SCT your father is only 51yrs so there should be no reason why he should not pursue an SCT – it is the best option for a long, drug free, remission – which is what we tend to aim for. The drugs we have are not finite in numbers – and less so now with the withdrawal of some from the Cancer Drug Fund – so unless there is a medical reason to refuse an SCT it should not really be option. It is considered the Gold standard of care. Your father sound very fit and so recovery will be quick and whilst it is not a pleasant experience you are only in hospital for around 16 days – so perfectly doable.
Regards Rebecca
Hi Rebecca,
Thank you so much for your reply.
I will let him know regarding the running.
Regarding the SCT and the mixed opinions it is very tough however I agree as he is young he should go ahead but I think it’s the worry which is why I asked the question.
He has already started his Zometa and due to has his 3rd one this week, however I think they are going to change his treatment as his PP’s are still not changing.
Thanks again.
Hi Georgie, I think the mixed opinions about SCt are generally if you are older and have other issues or mixed opinions from those having to go through it – which is really just the “is it worth it? what if it doesn’t work for me?” type scenario – more personal doubts than mixed opinions. The medical fraternity in the Uk have no real mixed opinion – it is our best hope of a longer drug free remission. If you are reading the US site then yes, there are mixed opinions, because they have a much larger armoury of drugs at their disposal and they try to tailor the drugs to the individual. We are not at that stage in the UK – we have a standard regime of treatments in a “one size fits all” sort of way. We are way behind the US and that is why SCt is not really an option. At 51 years, dependant on type of MM/aggressiveness he should also have a back up plan of an allo transplant for the future and may even be eligible for such in a trial but…for now SCt is the only really move forward. He has age and fitness on his side so recovery should be quick. Trust me, Sct sounds much scarier than it is.
Rebecca
Hi Georgie.
Sorry for the long delay in responding to your post as I’m over 50 I don’t regularly check this part of the forum.
As regards your original post regarding running it is generally advised to avoid high impact sports as myeloma weakens and damages bones. I myself was a runner and was training for the London marathon when my first symptom appeared. Exercise is highly recommended though the lower impact variety is the best.
I haven’t gone down the SCT route though that wasn’t by choice the option never became available to me. SCT is still the “gold standard ” for treatment here in the UK. In the USA it’s being debated whether it is the best way forward but no definitive answer has been achieved and I think SCT is still the most favoured option there too. My personal opinion is a SCT can buy your dad time for more effective drugs to be developed and can give him a long break from taking drugs. Though on a political note with this current government I think in a few years only aspirin will be available via the NHS.
Wishing your dad and all the best in his myeloma journey.
Andy.
To just to follow on from Andy, I had SCT and it didn’t really work. My IgG went down from 36 to 24 post SCT. I believe in the UK they wouldn’t even consider SCT if the Paraprotein level is above 1(I live overseas). The other point is that for a lot of people remission post the first SCT only lasts 12 -18 months as was my case. After all that it does work for a lot of people but it must not be seen as the golden bullet against MM. I still believe that if your father is given the option of an Auto SCT then he must seriously consider it. As Andy says at least it can buy him time.
Oh by the way Andy, the Aspirin left by the government needs to be of 2 types – non water soluble for the North.
Richard
I have been reading though the blog posts and hope this fits. It’s my first posting. It is a little different in approach to the previous posts in this section but is partially related to exercise…
In brief: I was diagnosed with MGUS three years ago. After a year MGUS turned into MM, led to treatment, eventual remission after six cycles and SCT about a year ago. Unfortunately MM returned and I am back in treatment again with a view to a second SCT…. so it goes.
I have found two things really helpful during this time; yoga and insight meditation. Yoga – by which I mean the gentle old-school stretching postures, is wonderful for releasing tension in the body and calming the mind. A daily practice of gentle yoga postures helps me be well and feel better no matter what the impact of the illness or medication.
Insight meditation has been helpful in many ways; it helped me to see my cancer differently – as something to learn from rather than something to battle or fight. Rather it is a process of acceptance – accepting the diagnosis, accepting the impact of medication, accepting the impact of the stem cell transplant and now accepting that the period of remission I experienced was rather short and that more treatment is needed. From a position of acceptance it is possible to ask questions like; ‘What is helpful right now?’ and in the longer term; ‘Given that this has happened, what would I like to do now?’
Off course, yoga and insight meditation are not going to cure myeloma but they do provide a practical way of engaging with the impact of diagnosis and treatment that I have found helpful and which may perhaps prove helpful to others.
Best wishes and good luck to us all!
Hi, sorry to hear your remission has not been very long and am glad you have good coping strategies in place. I totally agree with regards yoga and meditation. I used to do yoga as a calming influence during treatment (now abandoned in remission) and went to some Buddhist teachings which included mindfulness and I guess I learnt that I am in control of my emotions and I can choose how to react and therefore I can choose to make myself miserable or I can choose to move forwards. At a time when everything seems out of your control it is good to make peace with it and move forward. However, I did exercise a lot and I think this was for 2 reasons 1. I always did so it was a “carry on as normal/won’t be beaten” attitude 2. In hindsight, I feel I was punishing my body that had let me down and I seemed to take my anger out only on my body. I was constantly testing to see how much I could push it and at times I also knew this was very unwise because I had heart arrhythmia during treatment. What I got from exercise was a feeling of being “normal” “well” “happy endorphins” and a feeling that well “if I can do that I can’t be that bad” type of thing – so I guess it helped/s my innate denial that this will kill me (which I sensibly know it will but still feel it won’t – strange I know!). MM is a real mind game and I am going back to good mental practises now in readiness for a relapse. I would love to meditate and have tried so many times but never really feel I achieve it but aim to keep trying. I am also learning Reiki in the hope that it will prove useful for all the family when a relapse occurs. I guess a healthy mixture of mind and body things will smooth the waters. I do think that anyone who has MM should try different things to help them cope. I hope your 2nd SCT does the trick. It would be really good to continue to post as I think there will be many having to contemplate 2nd Scts and worry about the impact on ones body and it is always useful to hear individual stories. Good luck. Rebecca
Thanks for your kind words Rebecca. Yoga and mediation are excellent coping strategies, but at least for me, they are much more than that too. I really liked and can totally relate to how you described your exercise and relationship with your body – punishing it perhaps for failing you. That is so easy to do – I do it too in different ways. We really don’t like to feel the painful negative emotions that come with a diagnosis like myeloma, so we deny and blame (ourselves or others) and get busy and do just about everything we can think of to not feel what we are actually feeling! It’s a kind of madness really if we can stand back and see it. That’s one of the great benefits of meditation – it gives time and space to slowly open to how you are actually feeling. And the really interesting thing is that if we do open to how we are feeling we start to feel better – the feelings we fear pass and we are no longer stuck.
I am a few months away from my second SCT but will drop in to let you know what its like – probably pretty similar to the first one – oh joy!
Phil
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