Hi Dean, Yes am always puzzled a bit about the outpatient procedure in the US and hope in the UK it is only for those close by and who seem fantastically well. I seemed to have obs done every 4 hours for all my stay and would have scared the family like hell at home as I did not look or act well. I think in London there are some use of hotels near…[Read more]

Hi Peter..thank you. My concern for kidney is when I relapse etc 4 yrs ago I was at 5% then 16% and stuck at that for months and was told it was unlikely to rise – SCT’d at about 20 (2yrs 10 months ago) slowly climbed to 32 then stuck and last check was 37% and am hoping it’s not a blip but another slow climb!

Hi Dean, Yes information overload…[Read more]

Hi Peter, Yes I do believe it is how you react to treatment etc which has been good for me so far but am conscious, having read some recent posts on the beacon that only one mm clone is dominant at once and I do not think that was the translocations ones. On relapse the tricky translocation may then be the dominant and prove more difficult to…[Read more]

Hi Dean, thanks for that story..I like it! Altho my genetics are classified as high risk it is always just a predictor due to the individuality. However my translocation 14:16 is seen in many kidney damaged patients (my light chains were only 1000 but they really stuck the boot in )- so I may be easy to treat but it causes maximum damage to the…[Read more]

Hi there – Just to add to Peters response whilst I love the myeloma beacon as it soooo informative – and mm’ers there seem positively to degree standard in their knowledge of our “chosen” subject you must be cautious to relate their experiences to here in the UK. SCT is no longer the gold standard of treatment in the US and that is because they…[Read more]

Hi Dean, Yes the test was done at diagnosis then one after induction to see what was left and 100 days after SCT. I guess when they do it after induction there are probably still pointers to what the MRD comprises – mine were still there so guess they are the hardest to get rid of and the ones to take notice of. Over time they mutate anyway and…[Read more]

Hi there, You seem to have gained remission from velcade (I believe velcade is only offered to 8 cycles maxc I had the 8 cycles) and therefore, you can wait and be off treatment until you relapse or you can progress to SCT in the hope (but nothings guaranteed) for a deeper/longer remission. I was 51 yrs old. I was on velcade and dex only and this…[Read more]

Hi Paul I have lambda light chain. the normal range levels are kappa 3.3 -19.4 mg/ltr and lambda 5.71-26.3 mg/ltr so yes you are out of normal range. The ratio between kappa and lambda is the important figure and the normal ratio is 0.26 – 1.65 – out of this is abnormal and generally considered to indicate the MM is active. Light chains can…[Read more]

Hi Scott, great news and am sure with your allo you have plenty more remission free years ahead..it’s always nice to have updates as you often wonder how people are faring and it’s especially nice to hear good news. All good news greatfully received.

Rebecca

Hi Eve, Sorry about your news but am sure if anyone can get through this with sanity intact it will be you so I wish you well with it all and thank you for the update – it is always helpful to make us take a step back from “normality” and remember the bigger picture and nice to hear from old friends. Here’s hoping your new rollercoaster has more…[Read more]

Hi Kevin, How fantastic – news like this really uplifts me – makes me feel that we are sticking 2 fingers up to MM and when one door closes in our life we are kicking down another. I am sure such an all embracing challenge will help keep you well and in remission much longer. I will certainly be following your travels. Enjoy

Rebecca

Emsie, to be honest I talk about mindfulness etc as it was my great saviour in my treatment, but I am nearing 4 years of this and time makes all the difference. Perhaps it’s because I know of the sheer exhaustion and torture of looking forward and second guessing that I can now stop myself from going there. We are also at different perspectives…[Read more]

Hi Emsie, Sorry to hear this news and as you will discover every person is different and the disease and treatments respond differently so to be honest with SCt it’s anyones guess and they can only tell you the “average” statistic. What I would like to stress is that at such a young age he is fitter and stronger to cope with aggressive treatments…[Read more]

Stay strong – there are still lots of treatments to try and hopefully one combination will get a longer lasting remission. As you know, nothing is set in stone with MM and how we react is very individual so whilst the last treatment wasn’t what you wanted it to be that doesn’t mean that the next one will be worse – Ian is not the “average”…[Read more]

That’s good Suzanne, your dad has lots to think about but is thinking about the wrong things and once their focus changes to what they really want to spend their time doing you will see their mood lift as they focus their energies on new challenges and hopefully MM will then go more to the back of the mind – but this takes a very long…[Read more]

Hi Sue, Your father has taken quite a bashing and to come to terms with this disease (if we ever really do) is only achieved with time and cannot be rushed. I think there are 2 ways people go with MM – no communication and keeping everything inside for fear of upsetting others or, like with all serious illnesses, allowing it to consume/dictate…[Read more]

Hi Lisan, So very sorry to hear of your loss which is so cruel and unfair on you all. I have a teenage daughter and think it is such a difficult age that I will have in place counselling for her (regardless of wishes) as when you grieve together it is very hard to open up fully without fear of causing more hurt to those we love and who are hurting…[Read more]

Hi Peter, Yes a poor do from the Dr’s and all the consultants I saw at the hospital were almost accusing me of refusing blood tests when I described the list of symptoms I’d given to the Dr – lots of head shaking but in the great scheme of things I could not/would not devote energy to complaining. I do not have any records from diagnosis as I was…[Read more]

Hi – I went to the Drs with all the symptoms of kidney failure in the July – was told it was labyrinthitis and no blood tests done and was rushed in some time in October or perhaps November (bit of a blur now). I was given lots of blood, platelets and drips which quickly got to me about 8 – 10% function. I was going to be transferred for dialysis…[Read more]

Hi sorry Peter for the confusion – I was diagnosed (just before my 51st) in kidney failure at 5% function with light chains at only 1120 and just 10% plasma cells in the bone marrow (they were perplexed at the amount of damage from small numbers at my hospital)- I had velcade and dex for 8 months followed by SCt and since then my light chains have…[Read more]