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Hello Sandra,
Am very sorry to hear about your husband, but by reading your last post, things are starting to improve (light chains down to 470). I am very new to MM – just starting my third cycle, and am getting to grips with the terminology and effects. It can be VERY confusing… But this site is a great support – there’s nothing quite like reading extracts of real people who have been through this ordeal.
And as numerous people have said, MM is very individual, and for what it’s worth I can only tell you of my short experience so far. I was admitted to hospital with a very high reading of creatinine (greater than 500), which showed my kidneys were in a serious state. And either the paraproteins and/or the light chains were in excess of 11,000! I’m not exactly sure which or both are at fault – my consultant calls them the ‘squiddly-diddlies’, so I need to get to grips with this.
To the positive side – these ‘nasties’ have now reduced to 400 – and the creatinine (kidney measure) has reduced from more than 500 to 173. Talking to the consultant – she says the important measure of kidney function is the flow rate – and this has gone from almost zero to 37%. Exactly like your husband – I was/am more concerned with the state of my kidneys than the MM – and I think what I’m trying to say is – you never know what’s going to happen tomorrow – and I’ll keep my fingers crossed that your husband’s kidney functions improve as the MM treatments continue. Tell your husband to keep his chin up – very easy to say, I know. And I sincerely hope he improves.
Peter
Hello Sandra,
Sorry to hear about your husband. I was diagnosed with MM two months ago, and it was a complete shock to me (and my wife). They only discovered it while I was in hospital with severe food poisoning from eating some dodgy fish in Dorset. My consultant was convinced that my kidneys were damaged beyond repair, because of the de-hydration caused by the poisoning and the fact that the nasties (lambda lightchains) being produced by the MM were more than 10,000.
So he fixed my up with an appointment to see a kidney specialist in the Royal London Hospital to discuss the options for dialysis. Prior to the appointment (I’ve now had 3 cycles of Velcade, dex and thalidomide) – my kidneys did recover. They now have a flow rate of 37%, so nothing seems to be impossible with this unpredictable disease. Also, my ‘nasties’ – the lambda light chains have reduced from that massive figure to just 6.
I still attended the appointment with the kidney man, and he told us that the base-line figure for dialysis is 10%. So, I think if your husband, with the right combination of drugs and good care could possibly achieve this flow rate or better – then (if I understand the kidney expert correctly) – there is no question of dialysis, certainly not in the long term, and that’s one thing less to worry about.
All the very best to your husband and yourself,
Peter (aged 66yrs)
Sorry about the two posts – I forgot I wrote the earlier one.
Peter
Hi Andy I’m not sure why some doctors talk in light chains and some in para proteins or what the difference is, but the good news is his light chains are down to 149 considering he presented with 37 thousand that’s great news he starts his 6 th cycle of chemo on Friday and then they have booked him in for harvesting 28th September they haven’t given a date for the actual SCT yet but I’m hoping it’s before Christmas it would be great to have it all done for then unfortunately the kidneys are still not doing much so he is still on dialysis but we haven’t given up hope yet. I must say the side effects are getting a lot worse now at the beginning of the treatment he used to get a few good days but now he just feels sick and I’ll all the time and he’s lost so much weight how are you doing with the treatment and is it working for you do you get many side effects and how do you cope.
I pray for you all every day
Sandra x
Hi peter I’m so sorry I called you Andy I don’t know why I did I think I’m starting to loose my marbles but that message was for you and I forgot to ask will you be having a SCT and why do doctors from differant hospitals all seem to talk in a differant lingo about the same illness are kidney doctors talk about kidney function and my husbands is 8 and his creatinine levels are between 6 and 8 hundred but they tell us that if the SCT works it could make the kidneys work again so there’s still hope for them do let us know how your doing. Sandra x
Hi again Sandra,
I’m going to have to change my laptop! I was about to post a detailed reply to you and lost the lot. Very annoyed, so if a very similar post from me pops up somewhere else – I apologise.
Speaking as a complete medical layman, what I understand from the various doctors is that MM’s light chains (LCs) are bits of para proteins (PPs) that get taken into the blood. The LCs can either be called lambda or kappa LCs. You can get either, but not both together. The LCs can cluster together in the kidneys and form a ‘cast’, which blocks the kidneys so they don’t filter properly. I read that about 20% of MM people get LCs only. I’m in that category and mine is the lambda variety.
My LCs were > 10,000, but now are down to 6 ! I had casts in my kidneys – but kidneys can recover and my flow rate has gone up to 37 ml/min, which means approximately a 37% efficiency. So tell your husband there is hope. In fact early on, all the doctors thought I would be on dialysis forever, it was only after treatment with Velcade, dex and thalidomide that the improvement was seen.
You say your husband’s kidney function is 8 – I’m assuming 8% ? I understand that 10% is the magic number (from the kidney specialist) – above which dialysis (long term) may not be required. So if the SCT provides this figure, or greater, dialysis may not be required.
You asked about my side effects: Sometimes they are exceedingly difficult to cope with. The steroids are the worst. They make my ankles and feet swell so much it looks like elephant’s legs. The fluid retention also goes onto my chest, and I get very breathless just doing the simplest of jobs – and have to rest. It’s a damned nuisance. I also get the shivers and shakes, but I’m not sure what drug (or combination) is responsible. That’s not saying all days are bad. I reckon I get 3 to 4 reasonable days a week, but the rest are rough.
You also ask re an SCT. And frankly, I’m not sure. I’ve had different professional opinions related to this, for my particular age and state of health. I’ve only had 3 treatment cycles so far, but it’s a question that will be raised sooner or later I fear.
I’m trying to find out the ‘average’ remission periods for those having SCTs and those not. But as I’ve now found out, ‘averages’ are a bit of a nonsense with this unpredictable, variable disease.
I do hope your husband improves quickly, and the sickness stops. Please tell me how he’s getting on. All my best wishes to him and yourself. And please check out all the medical things I said above with one of your medical professionals in case I’ve got anything wrong.
Peter
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