Rosie, so sorry to hear about your Dad, and my condolences to you, your Mum and all your family and friends at this time. From what you say, your Dad seems to have been fairly active until the last year, so whilst it’s no consolation, from the patients (like me) that I chat to in waiting rooms, it could have been a lot worse. So, I suppose it’s some kind of positive to take from a very sad occasion.
I don’t know what version of MM that your Dad had? But I had an ‘acquaintance’ (a lady, very healthy prior to MM, and reasonably young), who had an SCT to combat her light chain version, and unfortunately passed away a year and a half later. MM is so individual and so hard to predict — and I completely agree with your comments regarding the devoted work that the hospitals (and MyelomaUK) do to treat this rather nasty disease.
Kindest regards to you and your family,
Peter
Hello Susie,
Funny you should post this. I had 8 cycles of VTD (ended Feb’ 16) and four months later, I still had severe lower abdominal pains and diarrhoea. It was like constantly having a ‘bad curry!’ After loads of investigations: colonoscopy, CT Scans, samples… all these tests showed nothing. And no diagnosis is currently available. In fact I have to see the gastroenterologist consultant tomorrow. After (very recently) emailing ‘Ask the Nurse’, Ellen Watters gave me some very useful information and Myeloma UK have a downloadable fact sheet regarding symptoms and causes of diarrhoea. I’ve attached it (hopefully) to this post. I know it’s not directly related to abdominal pain, but believe me, and certainly in my case, it is part of the problem I’m still experiencing. I’ve had this difficulty for over two years now, however – I’ve realised that individual’s responses to MM – and the associated treatments, can be so different, that what’s a problem for me, may not affect you so severely, if at all; and lastly, just to say, that my VTD treatment was excellent in combatting the MM nasties. Best wishes to you.
Peter
Hi Ian/Susie,
Ian: If you go onto Rev/Dex, please tell me how you get on. And just as important — have a great time in Cromer, and enjoy your fresh crab!!
Susie: Some very useful information regarding PP levels triggering treatment. I wonder if the value of 50 is uniform across all trusts? Be nice to think so.
Good luck all,
Peter
Hello Ian,
Your post says that while you have slightly a increasing paraprotein level, your light chains (LCs) at diagnosis – and now, are very low – effectively zero as you’ve said. In these circumstances I certainly wouldn’t worry regarding LC effects, and the niceties of the kappa/lambda ratio – which don’t seem to apply in your case. My situation is exactly the opposite! I have no paraprotein spike (in the graph), ie, no abnormal levels of paraproteins. Unfortunately, of the two versions of LCs (lambda and kappa), my lambda LCs are the culprits, and before treatment (at diagnosis) were very high – but now under control.
If you’re interested – the kappa/lambda ratio can be used at diagnosis and can show which LC is the problem. So mine is lambda (the involved LC), and in these circumstances, the kappa LC (the uninvolved LC) has no effect. In LC myeloma, only one of the LCs (lambda or kappa) causes the problem, and the other has no effect. And although the ratio is of academic interest post diagnosis, it seems that at a practical treatment plan level, it’s pretty much ignored… I’ve had two MM consultants, and they’ve both concentrated only upon the primary measurement value, ie – the absolute value of lambda LCs in the blood (mg/L), as measured by a blood test. The normal range (for lambda LCs) is 5.7 to 26.3 mg/L. Lastly, I’m sorry, but I have no information regarding what levels of paraproteins will trigger treatment.
Good luck,
Peter
Hello Marian,
I’ll do my best. Your lambda LCs are a bit on the high side, but not that much. From memory, the max value in the range is about 26 or 28 mg/L. I haven’t got my notes with me, and you can check this number. For some reason with light chain MM the nasties produced are either kappa or lambda, but not both. So the ratio is fairly important because is tells the medics which FLC is on the high side. If both kappa and lambda LCs are increasing the ratio may remain in the normal range, although both k and la are increasing. And this would be indicative of some other problem, but probably not full blown MM. If the ratio is high, then k MM would apply. If the ratio is low, then la MM would apply.
I understand that the medics use the ratio to stage the MM and use it to assess the progress of the disease.
Best wishes,
Peter
Hello All,
I was on a VTD regime for 8 months, and yes: feet warm/maybe burning, jelly legs, breathlessness, shaky feeling (especially in cold months), palpitations… were all things that affected me. Apart from a reduction in the thalidomide (to combat toe pins and needles) – I carried on. The main reason being that the VTD combination definitely worked (for me) with drastic reductions in my FLC MM. But this isn’t to say that it works for everyone.
And in terms of the Dex. On Dex days (taken early am), and at that night (3am) — I could have eaten the fridge bare and then got a ladder and cleaned all the roof tiles!! After a month or so, my lovely wife slept in the spare room.
Lastly, I can only echo what Ellen Watters said — for those suffering the side effects badly, please speak to your consultant or CNS. In my experience, there’s normally solutions to mitigate the effects of the VTD combination, which let’s face it, is a very powerful set of drugs.
Best wishes to all,
Peter
Hello all,
I’ve had mixed messages regarding the use of curcumin in conjunction with conventional MM treatments – specifically CDT – where it can lessen the effects of the cyclophosphamide. In some cases I also understand that if the patient has a low platelet count, or is on some kind of blood thinning medication then it may not be appropriate to take any curcumin, since this may worsen the situation. But as always, it’s best to speak to the medical practitioner for advice.
Over the past several months I have been in touch with the lady patient that is the subject of the BBC programme and the open access BMJ journal. There is absolutely no doubt that the large dose (now 9g/day) has worked for her, and obviously this is in the absence of any anti-MM drugs, so needs to be considered in isolation. In speaking to her, I think the use of hyperbaric oxygen therapy can be ruled out, since the use of the curcumin is the sole reason for her excellent response (although apparently, this benefit did not occur quickly – it took some months for progress to become established).
In view of this time period, and the relatively short curcumin clinical trial that took place, with relatively few (30 – 40 participants); this seems a little inadequate to ‘test’ the proper benefits of high dose curcumin/day (1g/day I would suggest, is pretty useless?). A broad, wide ranging trial is really necessary, incorporating many more patients (hundreds), split into sub-groups, and catering for: with and without anti-MM drugs, PP MM, SFLC MM and the various ‘growth stages’ of the disease. All very easy to say. But to set up these Phase III trials, and to get the drug companies to play their part (finance), is a completely different story. Why should they bother? Their returns would probably be miniscule, and I suggest, detract from their better selling ‘big-ticket’ lines. Curcumin is cheap. My wife has a source in the U.S. and buys 5 months worth at a time (she doesn’t have MM, or other nasties, but takes it for other reasons – with full consent of our GP).
Regards to all,
Peter
Hello Sue,
Thank you for your post. Yes, it was pretty awful. When I was admitted to hospital, my young and very able consultant was very concerned – I could tell by the look on his face! I must have had a dozen blood tests, some of which he did via arteries, which the he told me, the nurses were not allowed to do. But as I said, all these tests proved okay – and that left Revlimid. In a way, some of it was my fault, because I should have gone back to oncology a lot sooner, before I got so sick.
My liver did eventually recover, but now Revlimid is now off the table forever. To be a bit more positive — with the rapid development of MM drugs (notwithstanding NICE), there is every possibility that a new replacement drug will be in commission soon – let’s hope…
Best wishes,
Peter
Yes, my ALTs raised to 1400 – my other liver bio-markers went haywire, body turned yellow, bladder and bowel functions unmentionable — was admitted urgently to hospital, and taken off ALL drugs immediately for 2 weeks. Had a dozen blood tests both by veins and arteries, and all proved ok. Revlimid was proved to be the culprit for the deranged and very serious liver failure. Have now been taken off this. Am back on CDT.
Peter
The only NHS licensed maintenance treatment is Revlimid. Unfortunately in a small number of cases Revlimid can have serious side effects, namely on the liver, in a some cases.
Peter
Kitson,
When I said that I looked on the menu and couldn’t find an ‘attachment’ button – unfortunately, I never looked at the bottom of the panel – if you still want the Kidney Infoguide pse say.
Peter
Hi David, it may seem that I’m a bit cautious regarding blood test (bt) results, but I had many years working with instrumentation, often for peaceful applications, and sometimes not so (and in this latter case, I can assure you there is little room for measurement errors being out of spec – as you can imagine).
I am being treated for MM in one trust. I was being treated for a prostate ‘wobbly’ in another. Obviously a bit difficult, especially since the two trusts’ data systems didn’t talk to each other. So I moved my prostate investigations to the MM trust. I saw the new prostate consultant, and I took my latest bt psa results with me. I should say that my previous trust was in special measures. My new consultant didn’t want to accept previous bt results and said he trusted his own lab, wrote out the form, and sent me off. You can draw your own conclusions… In my humble opinion my current MM hematology department has brilliant, professional Drs. And when two of them have caution regarding eFGR use (details in previous post), and another won’t use it (eFGR cannot be used for drug dose planning because of its structure), then I obviously accept their views.
Yes calibration is an issue. I would love to visit a phlebotomy centre and see tests, but health and safety and contamination aspects rule it out – and quite rightly, unfortunately. I think that modern bt eqpt is computer controlled, but with some interpretation being necessary by the analyst. So software updates, human interpretation, regular calibration, linearity of measurement system, transport of samples from the location where you have your bt taken to the centre, temperature of the sample, length of time before analysis is done, contamination, and correctly entering of final data (probably done automatically) may be a problem. Having said that, and my view, the NHS is VERY thorough, and I wouldn’t be at all surprised that these points have already been considered and dealt with at high management/technical level.
And obviously no one can ask a busy consultant/registrar/GP to look at error bands in any bt result. It’s impossible and completely unnecessary. The NHS take account a lot of thsi by looking at trends, or doing quick repeat tests. So for example, when I had a bt for T2 diabetes, before going onto long term medication I had a repeat test. That was some years ago. And here is the rub – I can’t remember my exact figures (or units), but the sugar limit was 7.0, my initial reading was about 7.2. The second was about the same. The nurse told me I had T2, and put me on a lifetime course of Metformin. Problem is if the error band is plus or minus 2, then my true results lie in the range 5.2 – 9.2, and the limit for treatment is 7.0. Subsequently I don’t have T2, no idea why, could be loss of weight due to MM and medication, no one will ever know. My problem is where a bt result nudges against a level that promotes treatment.
I met a very great young prostate registrar (just finished training), very approachable and thorough. He had a cancellation, so we got talking – he asked me about my background over a cup of coffee (and biscuits!). I can’t remember my bt psa reading, but, (ignoring units), let’s say it was 10.1234 – I asked him how accurate it was? “Oh!”, he said, “it’s very accurate, there’s at least 4 places of decimals!” I never replied, but of course if he total accuracy is +/- 2 units, then the true reading is in the range 8.1234 to 12.1234, so quoting 4 places of decimals on a presented value of 10.1234 is daft.
The Americans are well informed and quite neurotic regarding measurements. There’s many more thousands of them with MM than in the UK, so there’s obviously many more bt’s. So it’s not surprising that there’s many more ‘laboma’s’ and these are declared and dealt with.
Peter
Hello Kitson, yes me too. In Jun ’15 I was diagnosed with lambda FLC – at a level of > 10,000. Crazy thing was, I felt reasonably ok, apart from the food poisoning from eating fish in Dorset, that admitted me into hospital for 11 days! But a few months of VTD saw the nasties crashing to less than 20. Great result the Drs said!
The lambda form can be particularly nasty to kidneys. It looks from my menu that I can’t download a Myeloma UK Infoguide to you. It’s called “Myeloma and the kidney”. And you should be able to order it/download from this excellent www. My version is published Oct 13, and that’s what I’m reading from. Not being a medical person, and in the meantime before you get hold of a copy, I’m quoting from this version, but I’ve had to reduce/paraphrase the text… Hope it helps:
P9/10: Up to 20% of MM patients have some degree of kidney disease, and another 40% will develop k disease at some point.
Abnormal proteins produced by MM can damage k’s by blocking them.
Full proteins (heavy and light chains – paraproteins PPs) are produced by MM. In about 20% of patients only FLCs are produced. FLCs are small enough to pass thru’ the k and into the tubles. Here they often combine with a certain other protein (Tamm Horsfall) – this can cause big difficulties.
In my case I produce no PPs, only LFLCs).
P11. Try and drink 2/3 litres of fluid a day (your previous poster was dead right!) Back to this post.
Creatinine is a very useful measure of K performance, and so to some extent is eGFR, but pse have be a bit wary regarding the latter. I know of two consultants that employ upmost caution when interpreting eGFR results. And another that won’t use it at all unless creatinine is in the late hundreds or more. I can go into the details of eGFR inaccuracies if you really want me to, but it would be a long post, detailed and you’d probably get bored half way thru’ I have an Hons Deg in Physics, and it took me a while to get to grips with the error measurements. I would much rather you look into it yourself and be happy with what you discover.
At FLCs > 10, 000, my creatinine was thru’ the roof, but during traetment this also reduced dramatically. That’s the good news. The bad news is that it never recovered to pre-MM levels. So any future degradations will be from a plateau base that isn’t perfect. ‘Fraid that’s the way it is.
As your previous poster said, pse speak to the nurses on this. In my humble opinion they are brilliant. Also, PSE CHECK all I’ve said above – I’m no medical person and pse be confident that the medical advice you get from your nurses/consultants is understandable and you ‘GET-IT’.
Good luck,
Peter
Hello again, my dear wife happened to read my post to you, and she wasn’t too impressed regarding the balance and an omission! I’m afraid I left out a significant side effect that I had with vtd. Sorry it was a while ago and I completely forgot. It concerned tummy trouble. Elsewhere in this forum I liken it to having to carry a loo roll round my neck when I went out. It lasted months after my treatment ended. If you’re concerned or want to know how I coped, PSE say.
On the positive side: when I was initially diagnosed, I didn’t have a clue about MM, but I soon learned! If you’re unfamiliar with what I’m gonna say pse ignore it. My particular MM is to do with free light chains (flcs) of the lamda kind. The max value should be about 28. Mine was 11,500! But remarkably after a few months of treatment the flcs reduced about 15 and stayed there. So that’s why I claimed it was fantastic. Also, I dusted off some old notes, and my consultant actually reduced my thalidomide because of the neuropathy in my fingers, which in the end wasn’t an issue.
Reading various MM websites and speaking to people you mind find that some have an obsession and think about their MM 24/7. Unfortunately I was also diagnosed with prostate cancer about 3 months ago. Fortunately it doesn’t appear to be aggressive, so I suppose if anyone should be obsessed it should be me. — but that is the way to doom and gloom. MM is a very messy, individual and difficult cancer. But outlooks are good. SCTs can be brilliant and there’s new brilliant drugs being introduced every week (NICE notwithstanding). So I believe it’s best to be as normal as possible and basically “take it as it comes”.
Let’s forget MM and let me tell you about a humourous interchange that took place with my mate Dave in the pub the other night. Dave said, ” Pete, why don’t you subscribe to encyclopaedia brittanica online? It’s a great alternative to Google and Bing.” I replied, “why Dave? My lovely wife knows everything about everything.”
Hello Pauline.J,
Some time ago, I had full 8 cycles of vtd, (from Jul 2015 to Feb 2016). And speaking to other people, I think I was exceptionally fortunate. My memory is a bit rusty, but I did get PN in the hands and dropped things frequently – and this disappeared shortly after the cycles stopped. I did also get it in the toes, to a lesser extent, and this also cleared. I also suffered from breathlessness, but this also cleared up, a few weeks after stopping the treatments.
Weakness in the legs: Unfortunately, I did and still do get this, but I had it a long time before MM (it started at 60; I’m now 68), and this was definitely due to damnable statins, and definitely not due to VTD. In fact it go no worse during the VTD.
Like the previous post, the VTD, in my case, was an exceptionally good treatment – I would go so far as saying ‘fantastic’.
BUT, each of us is very individual, with wide ranging reactions to treatment. Other patients I speak to echo almost exactly the symptoms described in the post above. Not nice, but pretty common I’d say (as a patient not a medical person).
Why don’t you see your consultant, explain your difficulties, and ask them for options: like reducing the Thalidomide, or other parts of the combination. The steroids play (I think) a fairly important role, so they may not alter these, but there’s still lots of options. Main thing is to make your treatment as manageable as possible – and as said before in the post above – there is light at the end of the tunnel!
Very best of luck,
Peter
