[rebeccaRParticipant]

Hi, have had lambda light chain under treatment velcade/dex for nearly 4 months – initially creatnine was 800 now about 200 but urea still at 14.1 giving me about 16% function – not been on dialysis – Dr believes its all permanent damage now – light chains have gone from 1100 to say 120ish. Has anyone achieved any significant kidney improvement after 4 months when condition remains stable? Also supposed to be having SCT with dialysis which Dr says won;t damage them "much" more but cannnot find any info re how "much" this is likely to be which could mean permanent dialysis for me which I don't want – plus light chain still beyond 100 for harvesting – has anyone SCT'd with high nos and got a complete remission? my understanding was they should be near normal to achieve a good response? Lots of questions and cannot find any answers, please help if you can. Thanks

[eveParticipant]

Hi Rebecca

You could have a look at back answers on this site,if you put in kidney in top right hand corner it should come up with something ,I think a fw people will reply to you who have had the same problem

My husbands kidneys regenerated,but he was still given a smaller dose of chemo for SCT. Enough to do the job,he does have to drink a lot of liquid to clear his kidneys. Eve

[adamsp41Participant]

Hi Rebecca …I suffered from acute kidney failure due to mm in Jul10…my kidneys were only 10% efficient.My light chains were in the thousands and my paraprotein levels were at 19…I had 5 courses of CRD which brought all readings down to normal or nil levels…I then had an SCT in Jan 2011 and have been in Stringent Complete Remission since…my kidneys have recovered somewhat and now hover around 46-48%…I did not have any dialysis…hope this helps…stay safe…Phil

[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?

[adamsp41Participant]

Hi Rebecca…as far as the wife and I can remember my kidneys gradually started to recover more or less as soon as I started the CRD treatment and have plateau'd now for the past 20 months ( roughly) …hope this helps…stay safe…Phil

[BADGERParticipant]

Hello Rebecca

I was diagnosed in jan 2009 with real failure and MM my kidneys were at about 20% and still are, managed to avoid dialysis but it always hangs over me I chose not to have an sct as I did not want to risk knocking my kidneys out altogether with the heavy chemo needed for the stem cell I got 3.6months remission from CDT and am now on Velcade had three cycles
Regards Jo

[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?

[adamsp41Participant]

Hi Rebecca…only advice I got was to drink about 3 litres of fluid per day…no-one has ever mentioned a dietary regime…stay safe ..Phil

[ali49Participant]

Hello Rebecca,
I was diagnosed with IgG Lambda myeloma two years ago and my kidney function was extremely poor – creatinine 1000. I joined the Eulite trial and had extended dialysis (which I was able to stop after a month) and Velcade. My creatinie levels came down to about 500 and my renal consultant felt it was unlikely that I would see any further improvement.

I was advised against SCT as the risks outweighed the benefits but they did go ahead and harvest stem cells as a back up. I was in a stable plateau phase for about nine months before my light chain levels began creeping up and at the end of May last year I started CTD therapy. After 6 cycles I was showing very little response so they said 'you'd better have a stem cell transplant'!
That happend in September, they do modify the dose of Melphalan according to your eGFR and all went well and I am now in Complete remission and back at work.

Prior to the SCT my creatinine averaged around 400 but recently it seems to hover around 300. I do see a renal consultant regularly but I do not have to follow a special diet as most of my blood levels are Ok.

I hope this helps
love Alison

[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

[anndParticipant]

Hi Rebecca
I was taken into hospital with kidney failure in july 2007 and light chain myeloms was diagnosed during my stay in the renal unit.My creatinine level was 800 and I was prepared for dialysis including the low potassium diet.
I had CTD treatment for 4 months then had to have a major bowel operation.
when I recovered from the surgery I had a stem cell transplant. This was 12 months after diagnosis and I believe my Melphelan dose was reduced.
I have been in remission since the SCT and my creatinine ;evel is 142.
I have excellent care from the renal consultant in Preston and the haematologist in Blackpool seeing them every 6 and 3 months respectively.
I had Aranesp injections for 3 years until my haemaglobin levels stabilsed at 12.8.
I am 69 now and feel well.
All the best Ann

[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.

[scott9Participant]

Good question and one which is troubling me right now as well. My light chain reading is back down to about 130. I've been on bendamustine for the past 7 months and the specialist thinks that this is as good as it will get. I'm due to see him on 8 April as he wants to discuss SCT with me. I'm a bit reluctant as my creatnine is about 300 ie around 20% function. This makes the mortality risk higher as well as the chance of reduced kidney function. Against that is the possibility of medium term remission. I will probably take a chance and go for the SCT as there are no trials right now for maintenance therapy.

Good luck

Scott

[ali49Participant]

Hi Rebecca,
before my SCT my creatinine was averaging 400 and my urea around 20. I would say it has improved since my transplant. I did not have dialysis during the SCT but they were very careful to give me lots of IV fluids and a modified dose of Melphalan.
I think the important thing is not to feel rushed into a decision.:-S Do you see a renal specialist and what does s/he say? Have lots of discussions with your heamatologist. Yes the mortality risk is higher but it's not high. I was more worried about ending up on dialysis. The risk is more from the damamge that a severe infection might do to your kidneys than the Melphalan (or that's what I understood) and at the first sign of a temperature they had me on IV antibiotics.
love
Alison

[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

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