[peterlParticipant]

Hi all,

I was diagnosed a year ago with Light Chain MM, the LCs’ being of the lambda kind.  The LC’s exceeded 11,000, and my kidney flow rate was reduced from a healthy 90% down to 20%.  But the incredible thing was that I felt fine! – it was only after a serious bout of food poisoning, that MM was diagnosed.  However, I didn’t feel fine when I was told I had developed an incurable blood cancer.

A treatment of VTD followed – the LCs reduced drastically to single figures (this was unexpected and great news, and my kidney flow rate improved to >50%), and my last chemo was in Feb 16.

It’s now July 16, 5months since my last treatment.  And after another LC blood test, the lambda LC, little devils, are on the march again — increasing to 117.  The kappa LCs are 22, and the kappa/lambda ratio being 0.2

Does anyone have a similar experience?  And if anyone has gone through this, can they remember roughly at what level of lambda LCs triggered a further course of treatment?  I also understand that increases in the LC level alone might not warrant further treatment?  If anyone has personal experience of this kind of sequence, I’d be very grateful to hear from you.

Many thanks, and best wishes to all…

Peter

[rebeccaRParticipant]

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 they will now watch your kidney function closely as a trigger for treatment. One set of results is not enough to determine an official relapse and I think in the literature they look for a trend of them consecutively doubling in numbers – light chains can bounce about especially if you have been unwell when you had your bloods done but if you are on three monthly testing I suspect they may reduce the time now between tests to see if this is a trend. Your experience may indicate you have the type of MM that is easy to treat but remission does not last long between treatments (there are people on this site like this) but it is way too early to tell from only one treatment option. When you have officially relapsed they will explore with you the next treatment options – you have not had an SCT? you may be suitable for a maintenance type drug – or another combination of drugs will work much better for you than the last combination. Let’s hope it is just a blip in numbers – Jan has posted on here that after a cold her light chains have increased by about 300 and have also reduced so as with everything MM related it’s hard to predict.

Rebecca

[peterlParticipant]

Hello Rebecca,

Many thanks for your post, and extremely good advice and help.  Yes, the one thing that I’ve learnt, and as the medical community, and you say — “MM is VERY individual”.  So, although it’s difficult to draw comparisons, it’s so useful to have others’ experiences to draw on.  I use these and the feedback from the fantastic nurses at myeloma.uk, to help me with my meetings with my very busy lady consultant at the hospital.

If I could ask you just one point regarding your post?  You said…

“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 they will now watch your kidney function.”

I should have been more clear in what I posted regarding my own situation.  My lambda LCs are ‘frisky’ and they’ve now increased (in 5 months) from 15 to 117.  I’ve had no treatment in that period.  So, when you say yours is at 1120, and your treatment will start at about the level I am now, are you expecting your LCs to fall without treatment?  Or, am I missing the point completely?

The side effects of the 8 cycles of VTD have not been pleasant at all for me.  In the 5 months since last chemo, I’m still plagued by continuous tummy trouble.  My wife says I should tie a loo roll around my neck!  I’ve had every subsequent test imaginable, colonoscopy, abdomen CT scan, samples of all kinds analysed, all tests clear, and still no diagnosis.

I never had an SCT, on the advice of my GP, he said the particular effects, in my case, would be twenty times worse – and with hindsight – I believe he’s been proved right.

So, many thanks again for your post, and all the information.  I appreciate it very much.

Peter

 

[rebeccaRParticipant]

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 stayed stable/normal but slowly creeping and are now at the high end of the normal range still – just had my bloods done this morning so hopefully still stable. I say they will start treatment early for me as my kidneys can change with small changes in light chains and I believe 100 is the minimal number to treat if your body is affected. With regards to side effects and long term side effects a lot still remains a mystery and moreso after SCt as they never really know the “individual” impact on the body. Post Sct I have a much lower blood pressure (not uncommon) and a low heart rate for no explained reason – I am very well and fit and my kidneys etc do not hinder me for now – probably a different story when I have to be treated again but hopefully that’s still some time away. With regards to SCt, considered the gold standard of treatment, I would never listen to a GPs advise as they are not that familiar with all things myeloma and I would always go for a second opinion to a well known myeloma specialist. If you are relapsing so soon after treatment I would recommend, prior to any treatment, being referred to a well known myeloma specialist for their “take” on the situation (this helpline will give you their names).It was really informative having someone go over my case, give their take on it all in the knowledge that they specialists and have current knowledge of all treatments etc. I am normally treated/monitored by a haematologist at a very small hospital – this is lovely but they do not have the full knowledge and are not involved in the many trials/dats etc.When I relapse I will hot footing for another second opinion to weigh up options and choices. I would suggest you consider this route also so you can make a well informed decision about your body knowing the full facts.

Rebecca

Rebecca

[peterlParticipant]

Hello again Rebecca,

thanks again for for your post — which illustrates the fact that no two bodies or their tolerance/sensitivity  to MM are the same.  It seems incredible that with just over 1000 LCs, your kidney flow or efficiency fell to 5%.  I’m not sure what the measurement error is in measuring LCs (there will be some), but even at +/- 20%, if you took the higher figure, at a LC value of say 1300,  a 5% level of function seems very low.

Did you have some previous kidney problem?  When my LCs were 11,000, and flow < 20%, my MM consultant sent me to the Royal London Hospital to prepare me for emergency dialysis.  When I spoke to their consultant, he said that once flow/effiency dropped to 10% — this would automatically trigger dialysis. Which in the event wasn’t needed. So I’m assuming you had dialysis. And how long did this last for and how did you get on with it. Frankly, it’s the one thing that’s scary to me.

 

I completely accept what you say regarding the SCT. I’m a bit older than yourself (16 years) and haven’t always been 100% fit. And bearing in mind the torrid time I’ve had since finishing chemo, I’m still undecided regarding a future SCT.  My GP (now retired) not only had MM but also prostate cancer. And that was 10 years ago. My current GP’s dad also a GP, also has MM, so there’s quite a bit of MM knowledge in the practice, and they are a great support. But, depending on future outcomes, an SCT is certainly still on the cards.

Thanks again for all the valuable advice and information, and my very best wishes for the future.

Peter

[rebeccaRParticipant]

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 to another hospital when they discovered the MM and was given lots of dex etc initially and fluids and my light chains dropped quickly/sufficient to anticipate my kidneys would slowly improve. So no dialysis yet. I suspect I had MM for a while but oblivious to it until critical. I hasten to add I was/am a very fit/strong person and so I think symptoms were more masked with me. I was severely anaemic but still functioning and I was told later they did all my results again because they could not believe I was functioning/standing up! Another strange thing was at such a low kidney function I should have displayed “confusion” but I didn’t and they could not understand that either? I discovered when I went for a second opinion that I have high risk cytogenics ( generally considered aggressive/difficult to treat) with the translocation 14:16 (I think that’s right) which is associated with kidney damage and not bone damage. I think it is classed as high risk as it packs quite a punch to the kidneys which, I believe, explains in some way my kidney reaction than say yours…it’s all in the genes. It was a long process to get to my current 30-32%, I was at 16% for many months ( and told they wouldn’t improve further!) and had my Sct with kidneys in the low 20’s and was told quite bluntly that there was a 20% rick of death from the SCt due to infection wiping the kidneys out. However, due to my poor cytogenics the hospital agreed to SCt in an attempt to get me a stringent complete response. I SCT’d with a minimal residual disease of 0.3% and it was exactly the same after the SCt tho’ I got my light chains down from 60 to normal range which improved my kidney function further. Also, I undertook the SCt because I only had velcade/dex which is not known for a long remission with just the 2 drug combo. I have now past 21/2 years remission post SCt so will automatically be offered another one – this time round I don’t think I will do it as I feel I used up all my luck last time and was quite seriously ill for a while after it. Having said that I was fit and well again in a 6 month recovery period and I am still very fit with no fatigue that I hear others mention. I exercise a lot and I think this helped enormously both when on chemo and after SCT… but we are all different and it was very much my coping mechanism. I don’t know what to worry about the most the MM or the kidneys – so try not to! I am aware my kidneys will pack in first when MM comes back but whose to say they don’t develop new kidney techniques or offer novel drugs to me that won’t impact the kidneys..all I have to do is stay in remission long enough for such things to take fruition..fingers crossed.

Rebecca

[peterlParticipant]

Dear Rebecca,  Wow! what a story!  I don’t understand how labyrinthitis could be confused with MM.  I got labyrinthitis whilst on holiday in Madeira — sick and spinning head in hotel room, and not diagnosed until I got home.  But it’s a disease of the inner ear, and certainly not pleasant.

Do you know what your creatinine level was when your kidneys’ GFR was 5 to 10% ?  The reason I ask is because, my understanding is that GP’s can’t order a λLC test (only hospitals can), but they can obviously order creatinine and GFR tests, which if you’re in the middle of hospital review dates (say every 3 to 6 months), and if you’re vulnerable to kidney failure, then creatinine/GFR results can interpret kidneys health at any one time.  I have an nhs calculator that calculates GFR from creatinine readings, and I can email it to you if you’re interested.

Yours and my problems are somewhat similar, in that at a λLC level of 11,000 and creatinine of > 500, I felt absolutely fine – I was admitted to hospital with serious food poisoning, from eating a tuna lunch in Dorset.  If you’re ever there, I can tell you the fish restaurant NOT to go to!  It was only then, in hospital, that they discovered the MM.

Only thing I can suggest, is the continuous monitoring.  Other problem is, that my consultant last week, and my GP yesterday, both, almost word for word, said that λLCs (λ by the way is lambda – I have a degree in physics) are frisky, and very prone to stress.  Because the velcade has damaged by gut lining, and causing no end of trouble, my λLCs are basically ‘up-the-wall’.  My GP yesterday went as far as to say, even mental anxiety has some effect.  So in other words – don’t worry!  And it sounds as though your fitness regime is working wonders!

Best wishes,

Peter

[rebeccaRParticipant]

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 in too much shock etc and those records I had I threw away after the SCT so now I don’t even remember the date I went in – threw my works diary away and all in an attempt to not dwell on the past and move forward. I have the gfr calculator thanks and, to be fair, my consultant would still do monthly or 2 monthly tests if I wanted so I have no concerns on this front. I think it is the norm to be on a 3 monthly tests perhaps 6 months after SCT but I wanted my kidneys checked monthly and only when I felt ready to go 2 monthly and then 3 monthly did it occur. Interestingly my light chains do not bounce about (unlike many) and have been extremely stable with a gradual increase, incrementally of say 1 -2 only, over my 2 1/2 years. I feel is hard striking a balance re monitoring/obsessing and try and remember to just gauge my well being on how I feel and my fitness. After SCt I requested a monthly print and poured over any anomoly with the consultant and went into every monthly consult with new questions I wanted answering. After a year, and being very stable, I chose to not have a print but was told all my flc’s, gfr and hb level and this was a big thing for me to do mentally. Now I am 2 1/2 years post SCT and still in range but at the higher end and I have just resumed getting my prints again and checking the trends – if I am brutally honest with myself I believe I will be out of range in 9 months so I like to check now. I have heard many say their numbers bounce when in periods of stress etc and that some have the best results following an holiday. I have just come back from swimming in Lake Bled, Slovenia, hiking etc and had my results 2 days after my return so I am kinda interested if my results will be different next week – I will let you know if gazing at mountains in the sunshine does the trick – then we’ll put a case to the NHS for it on prescription! It is well reported that stress is bad for us and the one thing I have tried to do since diagnosis is to work on good mental practices. I have let this slip for quite a while now as I am in a very comfy position but I do have this back on my To do List to reaquaint myself with it all – like flexing a muscle. Our only control we have with this very strange disease, I believe, is how we choose to deal with it.

Rebecca

[peterlParticipant]

Hello again Rebecca,

And again, thanks for your post, which I hope you don’t mind me annotating, as below:

I could not/would not devote energy to complaining. I do not have any records from diagnosis as I was in too much shock etc and those records I had I threw away …  in an attempt to not dwell on the past and move forward.

I know exactly what you mean.  Positive energy is needed to deal with MM, and useless, to be wasted in this respect.

but I wanted my kidneys checked monthly and only when I felt ready to go 2 monthly and then 3 monthly did it occur. Interestingly my light chains do not bounce about (unlike many) and have been extremely stable with a gradual increase, incrementally of say 1 -2 only, over my 2 1/2 years. I feel is hard striking a balance re monitoring/obsessing and try and remember to just gauge my well being.

Yes, absolutely agree again, it’s hard to get the right balance, especially if you suspect that small increases in  LCs, can have a large impact on kidney GFR.  The phrase ‘paralysis by analysis’ comes into mind.  But with such small variations in your LCs, I’m sure everything will be fine.

My problem is that with a LC figure>11k, my kidneys reduced from >90% to 15%, but have now recovered to about 50%.  But on the next adverse episode, they will deteriorate again, but then have to recover from 50% and not 90%.  C’est – la -vie.

if I am brutally honest with myself I believe I will be out of range in 9 months so I like to check now. I have heard many say their numbers bounce when in periods of stress etc and that some have the best results following an holiday.

Really not sure regarding your 9 months — it could be a lot longer — and remember, even if it’s slightly outside the ref range, it’s almost certain you won’t be treated.  I’d guess that your consultant will still need to establish a trend, outside the ref range.  Frankly, a few mg/L outside the range is probably within the measurement error anyway, and absolutely nothing.  Probably, LCs of >50 will only trigger further drugs, I’m not sure.  I’d be really interested, if you can tell me your levels following your brilliant holiday !

It is well reported that stress is bad for us and the one thing I have tried to do since diagnosis is to work on good mental practices.

Essential I think.  Well done, and best wishes again, on your great results.

Peter

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