[rebeccaRParticipant]

Hi Debs, thanks for that – it was for me (51) and just soemthing an elderly lady on velcade said to me at the clinic – she'd never had SCT due to age but had chemo then 10 yrs in remission then abit of velcade which gave her 2 1/2yrs and now she's just starting another batch of velcade as its raised its head again.I wouldn't mind following her down that route! her daughter had told her a lot younger people were now getting it and suggested it was more aggressive. I haven't had any genetic profile from my consulant re. extra chromosomes or high risk translocations etc – never know whether to ask or stay in the dark – as I know they can guestimate remission from such proiling – am assuming they will do it at some stage? they seem to do it automatically in USA etc where they have more of an individual approach to treatment. Did you get a genetic profile pre SCT? Rebecca

[rebeccaRParticipant]

Hi Martin, I hope you don't mind me asking but would love to hear more of how your kidneys have improved over time and what you did to assist this – I am new to myloema and have 15 – 17% kidney fuction after 4 months which the consultant says is all oermanent and won;t improve further so would like any information/strategy/glimmer of hope that disputes that they can't recover my e-mail address is rollinsonrebecca@gmail.com. Thank you for any help you can give me, Rebecca

[rebeccaRParticipant]

Hi John.
How did your 100 day test results go? hope you had good news and have been celebrating rather than posting?
Fingers crossed
Rebecca

[rebeccaRParticipant]

Thanks Alison, No I am not seeing a kidney specialist – i have asked but my consultant says i don't need to as he is in contact with him – I feel my sct is a fait complet with my consultant who sees it as the best way forward due to age (52) and maybe's he's right and its just fear clouding my judgement about it – my kidneys at 240 creatnine and urea 14.1 seem a bit better that yours were at SCt and i definately will have dialysis – travelling to hull for dialysis then back to castle hil 3 x a week scares me as well if i'm feeling awful. I've decided i will go with the cnsultant and do SCT because at some stage I guess you have to use whatevers at your disposal to fight MM – the fact that the consultant is very pro sct can only be a good sign, Theres been no mention of the fitness tests to pass etc so i guess they can't be too difficult… thankyou for your input. Rebecca

[rebeccaRParticipant]

Thanks for that, comforting to know – at the moment I don't know what to worry over the most kidneys or myeloma! my consultant is very pro SCT and talks as though there is no option or decision to make I will have sct because i am entitled to it due to age.

[rebeccaRParticipant]

Thanks for that my creatnine is arouund 200 but the urea is high at 14.1 – so for you the SCT did not further damage kidneys at all? did you have dialysis whilst being SCTd where i am going for SCT they don't have a renal unit so they are going to keep shipping me off for dialysis in the process – am worried when S & D kicks in! CAn you tell me as no-one has explained the consequence of such kideny damage how can our blood etc stay healthy when the kidneys don't cleanse it properly and what are the consequences of this? I'vr been told by someone you can live fine on 25% kidneys but i only ave 16 – my consultant doesn;t want to discuss kidneys with me which i'm beginning to see as a bad sign and have also read ther is higher SCT mortality for those with severe kidney damage but don't know if this is current or old news – I feel fine exercise asa normal and evev wouldn't think i have such poor kidneys ….thankyou Rebecca

[rebeccaRParticipant]

Thanks for that, ther has been no mention yet me seeing a kidny specialist but as I am only 16% wonder if I should be following a kidney diet etc to presere what's left? have you had to follow a different diet etc?

[rebeccaRParticipant]

Thanks Phil – did the kidneys contine to recover after the 5 courses or was recovery within that – I've been told any recovery is usually within 3 – 4 months only?

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