Hi Peter, I have lambda light chain and to highlight the individuality of it at only 1120 I have been left with 30% kidneys so everyone is different and they treat when it causes damage to the body – my treatment I suspect will start at about the level you are at now (based on how my kidneys reacted last time) yours may be a bit more of a wait but…[Read more]

Hi Dean, Sorry you are hear but it is not all doom and gloom tho’ when you are young with children it is hard not to get beyond the doom. I was diagnosed with kidney failure at 50, similar to yourself I suspect I had it a long time but I used to work nights etc so can always explain the tiredness away and my kidneys were at 5% – I had been in…[Read more]

Thank you, We have all been there and experienced just about every mood/emotion going. I have had MM near 4yrs (8 months chemo then a Stem cell transplant). I have no bone damage so am not hindered from exercising but what will get you through this is managing to control your mindset – you are both 100% in charge of your emotions/reactions – only…[Read more]

Hi, Sorry to hear about your dilemma- what are his current levels and what chemo combo was he on? If velcade, which I had, you only have it for max 8 months anyway and the bulk of the reduction is in the first 1 -3 cycles. It suggests your husband is stable and perhaps reached a plateau with that treatment – a break suggests he is possibly now at…[Read more]

Hi Chrissy, Welcome. You are in a steep learning curve here and the important thing to remember is “take your time” you’re not going anywhere and this is a marathon not a sprint so go at your own pace. You do not need to know everything about MM now as your consultant/NICE will decide your treatment path so…if I had my diagnosis time over…[Read more]

Yeayyyy…consider that good news and breathe out once again!

Hi Ann, fingers crossed for you this Thursday, I know you have been having some blips of late with your blood but it may not necessarily be what you fear most. Sometimes there is no real rhyme or reason for how things seem to pan out – I had the blip of bloods like you then it went back ok never to seen again and at the mo I have hardly any immune…[Read more]

Hi Claire, I went to see Prof Cook he is very renowned, tells it to you straight in a very personable manner and I had my SCT there 2 years ago last xmas. I have high risk cytogenics but no maintenance as I believe the only way to get maintenance here in the UK is if your treatment is part of a trial – mine wasn’t. You are in a great position with…[Read more]

Hi Colin, One more thought re. your pros and cons. Have you asked the consultant to explain your cytogenic profile from your bone marrow biopsy? Have you any deletions/translocations that make maintenance much more favourable? You will be either low, standard or high risk (considered more aggressive/difficult to treat) based on your cytogenics.…[Read more]

Colin, whilst on velcade/dex – the dex can make things difficult abit like speed (I think) so up all night etc but as regards exercise I was taking my BP at home and when on dex I had heart arrhythmia (picked up by my cheap BP machine) and BP was higher/heart rate higher on dex day. What I used to do was play tennis then take my dex tablets and…[Read more]

Well Colin, it sounds like you are being pro-active and gaining what control you can so good for you. Incidentally, I was a fit 51yr old on diagnosis (but severe kidney damage). I like to play tennis – a lot – I continued throughout treatment for 8 months and when I came off treatment and had a 5 month gap pre SCt it was like a fog had lifted and…[Read more]

Hi Colin, Welcome and what a decision you have to make. Your consultant and MM nusrse specialist will give you the pros and cons and I guess the main thing is you get maintenance and possibly delay SCT until first relapse. I had velcade/dex then SCT – no maintenance as not on a trial. It is difficult to know what you want until you have started…[Read more]

Hi tom, Sorry I cannot offer anything but as I am lambda light chain and have no paraprotein (currently in remission) and at diagnosis with 1120 lambda I had only a slight/insignificant paraprotein rise – my doc has never said I am non secretary – would you say I am?? I get no bone damage but significant kidney damage on low numbers so will need…[Read more]

Hi. I had a really sore rash at the back of my neck after sct(I thought it was shingles) – they took a blood test but never got the results – so presumably ok – and it went in about 3 weeks – it was raised, red, very painful – never to be seen again? one of the many imponderables…

Thanks Jan – always remember with high risk cytogenics that it is still an “individual” disease and so how we each react to it is also very individual. I have heard of a high risk case in US still in remission 10 yrs plus which proves this point/glimmer of hope! My understanding/feeling of it is I must have only had a small % of the HR…[Read more]

Hi Jan, I personally think consolidation after SCT for a short period is what I would have liked – all things being equal and they do this in the US ( 3 months or so?). Having said that your body is very low after SCt a further hit, for me, would have been difficult. I was not on a trial so ineligible for maintenance – I spoke to Prof Jackson at…[Read more]

Hi Jan, I would ring the helpline to discuss this one – my understanding is a 90% reduction from what you set out with is optimum and as near to normal as possible before SCT. In the US they really strive to get to the lowest numbers pre SCT but I feel our treatment regime is sometimes lagging behind. I could have got lower by adding to velcade…[Read more]

Hi Les, Don’t be too disheartened yet. After my Sct (altho no bone problems/pain prior) I found for the first 3 months I had strange pains – also in shoulder area and legs hurt -which I am led to believe is the chemo tightening the tendons which made getting up and about first thing painful and hobbling. Your body had had a massive battering of…[Read more]

Hi – Don’t hesitate – please ring – after my SCT I spiked a temp when home and would not go back/phone and my husband was a bit in the dark and bowed to my crying/covering it up. Thus began a very low point in my health – much worse then when in hospital – it hit my chest and set my recovery back ten fold. When I finally told the consultant he…[Read more]

Hi Stanley, Glad to hear that life is treating you well and there’s no reason why it shouldn’t continue. I am 2 1/4 yrs post SCT (so will qualify for another one as standard now under NICE) and feel the best ever at the moment. Have finally just (this week) started taking the circumin supplements – same brand as you – did you ever up your dose to…[Read more]