They didn’t/don’t give me anything – they just knocked it off. I’m at a small hospital and sometimes think things are done differently at the larger ones. When I have treatment again I will ask about dapsone now. thanks

Hi Helen, sorry to hear of your relapse so soon. I have never got “angry” about getting this disease, guess I was more shell shocked and didn’t have the energy to get angry but now when I hear of relapses like this it makes me so angry. The cancer ward is always full of really nice people and families and it’s hard now not to wonder why. Guess all…[Read more]

Hi Stanley, I was allergic to alluprenol (apparently the only drug I should always be on for my kidneys!) Quite frightening with the rash everywhere – we thought it was meningitis! took weeks to go but only had “symptoms” for a couple of days. Apparently its a well known side effect but wish we’d have been given the nod beforehand as it was really…[Read more]

Hi Sal – wow 6 chemo drugs – that’s quite a cocktail and I hope it hits it hard, and sounds like you’re at a good hospital and in safe hands. I’m all for throwing the kitchen sink at it.Enjoy the bank holiday sunshine and the takeway n don’t forget some booze – pack in all the things you won’t be able to have/do for a while.

Rebecca

Hi Izzie, glad it’s all moving forward for you – this is a strange time I felt the same excitement and anticipation as tho’ I was going on holiday? (forever in denial!). At Leeds they quote 3 weeks but I think this is so you’re not disappointed or unrealistic but was told as time went that most people gp home about the 16 – 18 day mark. If I were…[Read more]

Hi Sal, wishing you both good luck – sounds like a gruelling but short treatment pre SCT and that seems better than spinning it all out with SCT always looming ahead. As Winston Churchill once said “When you’re going through hell keep going” you’ll soon be out the other side (and it really isn’t like Hell at all – all doable when you keep your…[Read more]

Hi Tom – Is Dr J doing your BMB? he did mine last time and it’s the first time I felt any pain – when Helen did it I never felt anything. See there’s a new man nurse specialist – hope BMBs aren’t a steep learning curve for him/us!

Hi June – I had velcade/dex for 8 cycles and apart from the tiredness which gets worse the longer you’re on it found…[Read more]

I think they only tell you to lay off the booze in case it makes you extra dizzy with low BP side effects etc – I drank – very moderately throughout – only 1 glass of red per session – and now feel positively drunk on a 2nd glass of wine! used to guzzle it like a fish but now I enjoy just a bit and savour it – even new habits are hard to break!

Wow that’s great news – didn’t know CDT worked that quickly – you must be well chuffed with those results. Hope you plan a celebration this weekend.

Hi Keith – great to hear you’re doing OK so soon after SCT and getting out for walks – you are certainly an inspiration for those who will being SCTing shortly. Are you trying those calorie/protein drinks they give you in hospital and you can get on prescription? must admit they tasted terrible in hospital so I only had one.
Hi Stanley – I think…[Read more]

Hi Stanley, I believe it is essential to understand results/mm etc as we are mnoreoften than not in positions of little control. In the US – I use the myeloma beacon site a lot for info – patients seem so clued up about everything which I believe is because they choose their centre of treatment, consultant, their approach to treatment and…[Read more]

It is worth looking at The myeloma beacon site (as always) – there is a press release out – under the Forum (MM category) detailing the exciting work Prof Morgan will be involved in which is looking at high risk MM/genetics and has already stated the Uk will be involved in the trials. I can only think this is good for the UK – one of our top guys…[Read more]

Hi Helen, I have read how if you respond quickly it comes back quickly – in the 1st month of velcade I came down from 1120 to 140 but then it took 7 mpnths to get it to around 60ish – would this be classed as responding v quickly? And on the subject of hair again….I have heard how the kinks and curl go in time (mine still too short to know if it…[Read more]

Hi dick, I’m IGG Lambda but have never had much of a M-spike (diagnosed at 1120 light chains) think it was .6 at diagnosis but not sure as they don’t really look at that. My consultant is lovely but likes to just generalise but will give specifics when asked eg at 100 day BMB result he just said he was happy with my bone marrow – when pushed he…[Read more]

Hi Dick, sorry it’s not been as successful as it could have been but has got you to “stable” – we tend to pin in all our hopes on SCt and yet I think it’s only about 20% who achieve CR from it. I spent literally a year trying to get to SCT without actually thinking beyond it – SCT was my goal. I went into SCt with IGG lambda light chains at about…[Read more]

Hi Keith, You have done fantastically well throughout – even my neutrophils were still just below 2 and that’s after 4 months! Congratulations, you just have to take care of yourself now and be mindful of germs.
Best wishes, Rebecca

Hi Stanley, I agree with dick if you phone the helpline you can discuss/get advice/have it all explained with an expert – you can never fully quiz consultants until you have straight in your mind and I have often gone over my results with the helpline to get my head round it all. My understanding of staging is that it is now based on…[Read more]

Hi Izzie,
Glad you have decide to SCT in the end and sorry to hear you’re still having a rough ride – it won’t be like that forever. Had my SCt at Xmas and totally back to normal now it’s as though I’ve never had it as I now have no after effects anymore from it like tiredness so keep looking at the bigger picture. Regarding peripheral…[Read more]

Thanks Stanley – there is one saying that I used as my mantra during the whole process and even now – I got it from Eve “Worrying does not empty tomorrow of its troubles it empties today of its strength. It is so true and such a negative waste of energy. I reminded myself of this everytime I worried about my family etc and generally all the time…[Read more]

Hi Stanley, when you read your experience it sounds like you have had many years to get your head round it but I know it doesn’t work that way and when they tell you it’s an indescribable blow and the start of something all consuming until you get your head straight (if, in fact, you ever do). Good luck with your treatment you will no doubt be…[Read more]