Hello 007,
Nope, I’ve never heard of it either, but I understand that the U.S don’t give out drug licences willy-nilly, so even without current EU approval, you may be onto a winner. It’s the same old MM story, that individual’s reactions to individual or mixtures of drugs appear to be very different. My consultant told me last week, it’s often a matter of trial and error, to get the right cocktail together. See below…
hello hcp1 (Helen?),
yes, mine is lambda LCs as well. Mine dropped from 11,000 down to single figures (well within reference range), over the first and second cycle of vtd. My last treatment was February 16, but now they’re on the increase again, rising, out of range, to 117 this month. My consultant says no further treatment yet. My experience with vtd has been fairly good regarding the LCs, but unfortunately the treatment has significantly affected the lining of my stomach, and I literally have to tie a loo roll over my shoulders if I’m going out. It’s manageable with codeine and Imodium, and is under active investigation with the hospital. It’s been ongoing for six months!
From speaking to various people (patients and doctors) it does appear that with some people, very good early response, <i>may </i>mean there is a reduced period until the little devil LCs, like mine, go on the March again, and this seems to be the case if you don’t have an sct, and for some that do have an sct. It’s just another example of the MM individuality problem. As I said above, my consultant has delayed any further treatment, until a definite trends established (increasing from 117), and then different cocktails will be tried. It’s also a possibility that if your body is under stress, from some other medical condition, that your LCs can literally “go up the wall”. I’ve been told this by my GP whose father has myeloma, and echoed by my consultant last week. So increases may not solely be due to your MM, but if they’re on the increase like mine, irrespective of the cause, it’s worth (I think) keeping an eye on your kidney function, as well as asking your consultant if there are any other adverse signs from your blood tests.
Very best wishes to all,
peter
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
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
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
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
Hello Helen,
Good to hear from you again. Sorry to hear your LCs increased again after you stopped the VTD treatment. It appears that this is quite a common occurrence, as well as some patients initially breaking records for LC reductions. I guess I’m fortunate that I’m in the latter category, but it’s clear that there’s not a lot of connection between early success and ongoing LC reductions. One can only hope…!
But what is clear that these days, there’s a whole list of credible data showing long to very long remission (plateau) periods. Years and years.
Frankly, while at the moment, MM cannot be classed as curable, for my money, and in my simple view – patients who exhibit such long remission times (and continue to do so), are classed in my ‘non-medical’ view as cured. Thank goodness for modern drugs and those about to be approved.
Can I ask if your LCs were kappa or lambda? Mine are lambda and apparently worse for kidney impairment.
Best wishes again, and good luck with your treatment in hospital. Take care on the way home.
Peter
Hello again Annette,
Thanks for your post – and well done on your great response to treatment — especially after the sct being declined by your doctors. In fact speaking to consultants and oncology nurses at my hospital, there are so many new treatments in the pipeline (months, not years away), that may seriously compete with the rigours of sct, as a new standard treatment.
It’s also really encouraging that so many posts detail very long plateau (remission) periods.
I do hope that you (and all the other contributors) in this section, stay in touch, and describe how you/they’re getting on. And if it’s okay, I may well ask you more questions in due course.
Many thanks again for your post, and very best wishes,
Peter
Hello Jeffery and Annette,
Thank you both for your posts — I’ve been away in Dorset for a very stormy 10 days, without broadband, so haven’t been on myeloma.uk.
Jeffery: I can’t really comment on your operation, but I’m on dex and Velcade (once a week now, on a Tuesday, cycle 6). And all I can say is that initially, I underestimated the effects of such powerful drugs. When I was on chemo twice a week, I never really ‘came down’, from the effects of the steroids, but now (once a week), I tend to go ‘cold turkey’ around Friday, Sat and Sunday… Not nice. But don’t get me wrong, the actual treatment, re the mm, has been astonishing. The light chains being reduced from > 10,000, down to single figures! So far. What future blood tests will show — I have no idea. I know this doesn’t help, but it seems to me that dex are very useful, and powerful drugs.
Best regards, and wishes for the future,
Peter
Annette,
Well done with your long term stable response. And long may it continue. Can I ask how long it actually is? I’m also 66, but unfortunately, my ‘frame’ is not as healthy as it was 10 years ago, so sct is out of the question for me. So it’s 8 full cycles for me, with hopefully a long plateau period.
Very best wishes, and thank you for your post.
Peter
Dear Helen,
Thank you for your prompt post.
Believe me – you are not alone… Trying to manage myeloma is trying to play chess in a fog and not even being sure of the rules.
I reckon the vast majority of myeloma patients experience your thoughts exactly. I know I do. I definitely do – frequently (and so does my wife!).
It’s been great talking to you, Jill and David on this particular topic. And my very best wishes to you, for your forthcoming SCT.
Peter
Hi Helen,
I know I tend to look at trends/statistics/data, to try and work out/agree the possibilities for future treatments and side effects for me (personally). It’s also the hospital environment that I’m in.
But I would definitely caution against widespread use of the web for information. I’ve found that some sites are irresponsible, scary, out of date, conflicting and some – pretty much useless. I don’t use Google or any other search engines.
I only tend to look at UK sites (eg: NHS, NICE, CancerRes and of course this one). And on this site, I find personal contributions (like Jill, regarding her Mum) very beneficial, and notwithstanding the fact that having myeloma is a very individual experience.
Best wishes again,
Peter
Hi Jill,
Thank you for posting such a comprehensive reply regarding your Mum – who I consider to be a brilliant example of treatment and response, and at 86 years, a great record – and long may it continue, and my very best wishes to her.
I believe the strength of this particular www is that personal accounts (like your Mum’s), can ‘colour’ the ‘grey mass of statistics’ and can be very helpful to readers. It’s the difference between real experience and a number, in a mass of numbers.
I know we’re all different, but there’s no substitute for personal experience.
Best wishes,
Peter
Dear Helen and David,
Thank you for your posts. As you clearly point out Helen, the problem with Myeloma is that it is very individual, so drawing conclusions is difficult.
The only way around this is to look at bulk evidential data, over a period of time, and realise, that with a good degree of confidence, one’s particular circumstances sits somewhere within that distribution of data. In fact I suggest that many of the NICE treatment plans result from long laborious analysis of such data.
Put another way, let’s be outrageous and assume data shows that every Myeloma patient ‘pops – their – clogs, exactly 20 years, 1 month, 1 day after first diagnosis! Given this information, a new patient may readily decide upon his/her fate – with a high degree of confidence. Of course, the real world isn’t so neat, and we are left with trying to spot where we are on the distribution of numbers. Which in itself is a difficult exercise, especially when much of the data is historic and the treatments with new drugs are advancing so quickly. My doctors make frequent use of such historic data, since it’s the only thing that gives them a broad brush picture of results so far. So we’re in that game.
My dialogue with my consultant is okay, but she tends to be very busy, precise and a bit formal, and it’s the kind of exchange that it’s best to be as prepared as possible for, so I can get a possible view for the future. Hence my posts regarding definitions – it’s best that my consultant and I are talking from the same chapter, let alone the page number!
Thanks again for your posts – will look at ONS David (tnx again…)
Peter
Hello again Helen,
I’ve now had time to look more closely at the slides from the Birmingham Info day, and on the ‘Initial Treatment’ section that you suggested.
As you say, without being there, it’s much more difficult to understand what the slides are trying to show, but slide 14 (Role of Auto’ Transplantation) was a bit scary to me when I read it.
It seems to imply that there’s not much survival after 60 months???
I’m assuming that this figure includes subsequent treatment after a first/subsequent relapse, and that since the dates: 1996 and 2003 are quoted – the slide is based on fairly old data? Let’s hope so…
Peter
Dear David,
Yes, that is a brilliant response, and you tick all the boxes!
Sorry, I didn’t realise from your earlier post that you also had one, or more, bone biopsies to detect the myeloma cells in your bone marrow, in addition to the usual PP/LC blood tests.
Well done on a great result, and best wishes for your forthcoming transplant.
Peter
Dear Helen and Dave,
Thank you for your posts.
Dave: you said your consultant told you, “you were in full remission with “normal” light chains and zero paraproteins”. This to me at least seems a very practical and sensible statement to make, since you have no PP’s and your light chains are within spec.
My confusion arises (and it’s probably me, trying to get the definitions correct in my own mind before seeing my consultant), because of what appears in various publications. Helen for instance kindly referred me to page 38/39 of Myeloma UK’s booklet on SCT, where responses to treatments are defined. I’ll list the top 3:
Stringent Complete Response – no detectable PPs, normal free light ratio and no myeloma cells in bone marrow.
Complete Response: 5% or less plasma cells in bone marrow. No detectable PPs.
Very Good Partial Response: 90% or greater reduction in PPs.
So somehow, in the top response, the myeloma cells have to be counted in the bone marrow as well?? And the word “remission” doesn’t appear anywhere in the table. So I’m still slightly confused.
Helen: Thanks for the links to the Birmingham . I did download them, but as you say, it’s a bit difficult to completely follow them without having the advantage of being there.
Thanks again,
Peter
