hi Laura, I obviously do not know you/husband personally but I think perhaps he would have had the SCT even if risks were explained more fully. I know at that time you are carried through the whole process with big “hope” that you will come through it and that fuels the decision. I went against my husband in almost gung ho fashion because I felt…[Read more]

Hi Laura, so sorry to hear your news. I think SCT is considered as just a harsher treatment and with that greater risks. I wasn’t given the talk of what could go wrong and how the chemo can seriously damage heart and lungs (but knew about it) but, with kidney damage, I was told the chances of my dying was 20% – increased from the usual less than…[Read more]

Hi Andy, Great to hear you have survived! I echo Finn’s sentiments as I too and am sure loads of people were checking daily to hear of any snippet of your progress – you’re far too inspirational to lose – and a real stalwart of this forum. Take care

Rebecca

Hi Kerry, Sorry to hear about your predicament. Obviously your mum is not at a “crucial” stage re symptoms so think the time element you are experiencing is pretty normal. They may wait for the full body scan before bringing you in for a discussion so they have the full picture. Bloods normally take a week, I was diagnosed with kidney failure so…[Read more]

Hi Scott, thanks for that I will add it to my collection. When I was first diagnosed and read everything I could about cancer/management/mind stuff etc I started collecting quotes and now have a little book full of them and whilst, in remission, the urge is not there to constantly refer to them I certainly did throughout all treatment and it…[Read more]

Hi Jules, Obviously it depends how your husband is but after the transplant and say the first week if all goes well he should be fine on his own. I had mine nearly 2 years ago (at 52yrs)and my husband had to work – I became ill with one thing and another but he made me breakfast and I could potter during the day and he made the dinner. If I hadn’t…[Read more]

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…[Read more]

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…[Read more]

Hi, leaving work is generally classed as traumatic as a break-up, house move etc which is why the chances of a heart attack within the 1st 6 months I believe significantly increases. Personally, I feel it is easy to fill time/be more social in the so-called good weather months but winter, if you’re not careful, is much more isolating and too much…[Read more]

Hi Stanley, so pleased to hear you have changed your life and given up work. It is a very brave decision to not stick to the “norm” and bury our heads. Funnily enough over the last year the amount of people I know of who have died just after normal retirement age – or died within a year of achieving their golden pension whilst sticking at a job…[Read more]

Hi there, At 57years old is there a reason why SCT is not an option? it can be done with kidney problems and even whilst on dialysis? SCT is npw our best course for a longer remission pre relapse. The usual option at 1st relapse now will be either find a trial with a combination of drugs or thalidomide maintenance and then onto revlimid…[Read more]

Scary times indeed, totally devastated – we do not have a great arsenal of drugs and this certainly helps deplete our cupboard somewhat. Pom is supposed to be better for kidneys with a higher dose than rev could give without damaging kidneys so I was hoping it would be there for me in the future. I read the US site a lot with tailored treatment…[Read more]

Hi Eve, It is so nice to hear from you again – I used to read your posts and digest your messages with interest. I think posters often don’t realise what a help and comfort they are to so many – it is only a small % I am sure who actually post but a large % who read and it is very unselfish to give your feelings and thoughts to cyber strangers -…[Read more]

Hi, I believe it is extremely important to stay well hydrated for a variety of reasons, including protecting the kidneys, and 3 litres a day should be the aim especially whilst on a 3 drug combo. I am still doing this even tho currently drug free so it must become an integral part of your life. I found this to be very difficult but it does get…[Read more]

Hi Peter, Your consultant seems somewhat blunt without giving you any supporting information for his views. I got MM at 50 with severe kidney damage and they have recovered to a stable 30% gfr – I live life as normal on this. -went for SCt because of my age and it is considered to deepen the length of remission. The consultant told me there was a…[Read more]

So sorry to hear this news and I hope you take comfort in the knowledge that he died enveloped in your love and that you gave him such tremendous support. I hope in time you embrace that “life is for the living” and have a very happy, fulfilling life – a different life and not what you had thought it would be – but a happy one all the same.

Rebecca

Hi, it is interesting reading this thread again with an extra year on and my hindsight of it all is that we are very ordinary people faced with a gargantuan extraordinary challenge and we start it with the normal mindset for a battle – you lose or you win and are victorious. We all set off totally focussed on positivity and focus on sct/remission…[Read more]

Hi Mervin, good luck with it all – its not pleasant but doable – I was the ones who stayed in bed all the time in pyjamas moving only to shower – I was not whacked out or tired its just that any movement made me sick. I hated it when they made me get out of bed for them to make it as I would spend the whole time being sick. Everyone is different…[Read more]

Thanks Helen – I don’t like “preaching” exercise as am aware many have bone complications – I have kidney complications at around 30% but it doesn’t affect how I exercise/live my life – it is just a number and exercise helps. Unfortunately you will always have the sword of damaclese hanging over you and the key is to live well with this – much…[Read more]