P.S. About the VTD: I forgot – at times it did make me breathless, especially after a largish meal. Had loads further tests, but all clear – and this side effect stopped a little while after my last cycle – but apologies again, I can’t remember how long after, probably a couple of weeks.
About Cheltenham: Sorry again – have a great time, and hope you win (if you’re a betting man!). I’m not particularly interested in horse racing – but the first time I went to Cheltenham (as a guest of an American Company based in Wales), it was an absolute eye opener, to someone naive like me. We had lunch in a marquee and I had to go to the gents. The nearest one was in the grandstand block. Making my way there, the stewards had shut the gates that allow you to cross the grass road that the jockies use to bring their horses back after a race. So I was right next to the stream of jockies and horses returning… I didn’t think there was a lot to this racing, but was I wrong. The jockies (walking) and horses looked bedraggled. Covered in mud and dirt, breathing heavy, wet and the horses, heads down, were steaming, with a lot of them cut on their fronts and flanks, bleeding, probably from flying stones. When I got back to the marqee, I told my hosts and said my admiration for the men and horses had soared, after seeing things first hand. Definitely a very physical sport.
Peter
Hello again Brian (and Jan),
Brian: Yep, I had the same PN that started in my fingers. I’m sorry but I can’t remember at what stage of the 8 VTD cycles it actually started. It was a bit of a while ago!! But I do remember that it was very inconvenient at times… Like coming down in the early hours for coffee, hungry and thirsty on dex, and dropping the tin of shortcakes all over the floor and waking up the cat! I also had slight PN in the toes – these lasted a bit longer than the fingers PN (which disappeared a little while after the VTD stopped), but I can’t remember exactly when – sorry.
I think it was about 18 months before the FLCs showed themselves again by increasing out side the allowable range. I had a short session of CD which brought them down considerably, and am now having a revlimid maintenance dose optimised for the future.
Glad you’re getting on so well – and I hasten to say, that I regret I couldn’t be more definite in the PN phases, but frankly, I’ve pretty much forgotten these effects (apart from a wasted tin of biscuits and a frightened mog!)
Very best regards to all,
Peter
Hello again Brian, I’m back from my travels, (now with good Wifi) and just wondered how you’re getting on with VTD?
Peter
Hello Rob,
Yes, it comes as a complete shock to have an MM diagnosis! I never had a clue about MM, in fact I’d never heard of it, but we learn fast, and this website is invaluable in that sense. I had 8 cycles of VTD and it brought my light chain numbers down from a staggering 11,500, to single figures, which then remained constant. I had only one significant side effect, and that was frequent loo visits, and it was significant because it lasted for months after the finish of cycle 8. But with MM, nearly every patient’s experience is different either in small or large ways, so it’s hard to predict specifics.
I hope all goes well with your treatment plan, and keep us all informed regarding your progress.
Peter
Hello Jan and Brian again,
Jan: To my untrained eye (and I hope this is useful), LFLC numbers of 43 and 54 I think are excellent – almost to the point of being trivial – so very well done! My new consultant (who is brilliant) asks as a first question, “how do you feel?” She knows (and as I think I’ve said on earlier posts), it’s so easy to get tangled up by the mass of test numbers on their screen, but they are numbers, and often a simple question can help drastically with the medic’s prognosis, and greatly assist in the use of their data.
But looking at these numbers: I’ve no idea what your consultant would consider a relapse figure for your LFLCs would be. But a general number ‘kicking around’ seems to be about 1000 mg/L and/or a k/l ratio of worse than 0.01. But please check this with your consultant, because it’s a while since I asked this question, and regrettably, I’m doing it from memory, I should have noted it down. Obviously it needs consideration with your kidney function, and if this ‘took a dive’ further treatment may be necessary quicker. But as it stands, and IF I’m right, then Jan, you have a long way to go before maintenance drugs need consideration.
Brian: I’m really sorry, I have no information regarding the relevant treatment options for kappa involved FLCs. But I have a very strong suspicion that the VDT cycle drugs couldn’t really care less whether lambda or kappa’s are involved, simply because it’s the rogue plasma cells that they hit and kill (drastically so in my case), which stops the FLC production. I don’t think that VDT kills any of the FLCs, they die through their natural absorption and interaction with the kidneys and other organs, but PLEASE check that what I’ve said is completely correct. I’m not a doctor, just a simple physicist/engineer.
And on that note: I still have to go away for periods of time (not MM related), often with patchy internet availability, so when I’m home, I tend to spend a lot of time on the internet, which at home is both secure and 100% available! One of my favourite sites is this one; it’s well engineered, flexible, ordered, very informative and from my position, it’s great to ‘speak’ to everyone, who are much in the same situation as me. So long may it continue in this form. I say all this, because I hope anyone doesn’t consider that I’m hogging cyber-space, I apologise unreservedly if this appears to be the case, but I tend to concentrate my attentions on myeloma.uk when I’m in town.
Brian could I quote you in your last post please:
Dex has had the usual effect of keeping me awake half the night – ‘snacking’ and watching TV (catching up on old episodes of Cheers).
Oh so true… When on Dex, my wife got so fed up, with me getting up all hours, that she moved into the spare bedroom. And I couldn’t agree more, she is lovely, and helps me so much in organising my timetables and many other things that neither of us could afford her being ‘banjacked’ every day through lack of sleep. But, lastly boys, please exercise extreme caution if you suggest to your partner that you follow my example concerning separate rooms — because if it’s suggested/or taken in the wrong way, it can have devastating results. You have been warned!
Very best wishes to all,
Peter
Hello Angela,
I can well imagine that after 100 days (surely not all in the isolation room) that Graham was a bit ‘sad’ to leave the medical teams there. There’s often a strong, caring and professional bond between long term patients and their medical teams, even to the extent to the person that brings you round for your first cup of coffee/tea at breakfast time and asks you, “would you like sugar on your cornflakes?” The max time I was in hospital (food poisoning) was 11 days, and although I was very keen to get home, I gotta say that I did miss the staff (and other patients there).
Can I ask what elements (drugs) are in Graham’s XI maintenance cocktail, and additionally, it seems that half the people in the country are suffering from chest infections at the moment , so once under control, I wouldn’t have thought it was a very great problem. Can Graham have a glass of wine or beer with his medication? Hope so; So have a GREAT time at both your 60 party celebrations!! And best wishes,
Peter
Dear All,
Brian: Now you’ve made up your mind; I cannot argue with your logic, and it seems to me that you have made the correct decision (in the context of my personal experience) — I am also an engineer, and I think this discipline trains us to approach these kind of decisions, in a slightly different way, and even though MM is ‘individual’ — looking at the risks and long term effects, and having a back-up plan is a good way forward, in my view.
To bore the pants off everyone: and to re-iterate; my baseline (at diagnosis) lambda FLCs were > 11,500. My univolved FLCs were normal. And just after a couple of VTD cycles, the LFLCs dropped to single figures and stayed there. A constant complete response; in fact my consultant (looking at the blood test results), jokingly said, “has there been a mis-diagnosis?” And very fortunately, I had only one significant side effect (loo visits) — it’s all the luck of the draw! And apart from one blip (nearly 2 years after — which after a short Co/Dex treatment, is now all under control. VTD worked very well for me, but I do accept that the random nature of MM, means that the whole (VTD), or parts of the cocktail may be very unsuitable for some.
Jan: thanks for the additional information regarding the timings/treatments for your MM. It was a bit difficult (from your earlier posts) to understand the timings and duration of your nasty side effects, but now it’s clearer. I’m assuming that once the 4 cycles of CDT were completed, your symptoms started to reduce? And apart from the 3weeks of sickness following your first sct, did you continue to have the other side effects that were ongoing, after this 3 week period?
NICE won’t allow any Velcade combination at first relapse, if Velcade has been used previously. I had Velcade as a tummy injection, and in my case, I only had minor difficulties with PN, more in the hands than the feet. But as I said, I consider myself fairly lucky, and I’m not sure the injection route makes too much difference. I know patients who have had Velcade in combination, that have suffered bad PN, but as I said earlier, although the Velcade data sheets stress PN as a possible outcome, it’s the combination that needs investigation.
Adrian: As you can see from all the previous posts, it’s a tricky decision whether to sct or not. My health situation wasn’t particularly great in the five years up to 66 when I was diagnosed, so in conjunction with my consultant, an sct route was ruled out. All I can suggest is that you review all the posts in this particular section, talk to your consultant, try and weigh up the side effects of ongoing novel drugs v an sct, look at other findings (like the Mayo Clinic, that’s been detailed earlier in this section), and if all else fails – dial a friend! sorry I can’t be more helpful, simply MM is very individual, and defies broad brush classifications.
Very best wishes to all…
Peter
Hello Millie,
I had VTD (not VCT), for a full 8 month’s cycles. And the only real (but significant) side effect was tummy trouble; going to the loo. This lasted for at least 5 to 6 months after the final treatment (no sct). It was unpleasant at the time, but manageable with loperamide, but then, as quickly as it started, it stopped. The doctors did loads of tests, scans, colonoscopys… but all clear, and they said the chemo had probably accelerated the rate (for some reason) of solids passing through the gut, but frankly, they couldn’t be sure. Which is fair enough.
With no sct, and apart from one blip + a short maintenance dose of CoDex; all is back to normal with good tests; so I reckon there will be light at the end of the tunnel for you, and hopefully this will be very, very soon.
I suppose you’ve had anti-sickness pills, and that they make no difference?? And are there any solid food alternatives that don’t make you feel sick?
Best wishes, and I hope things clear up quickly…
Peter
Hello again Brian and Jan,
Unfortunately, when you ask different MM patients regarding their individual experiences with different drug combinations, you’re very likely get answers back that describe both good and the bad extremes, of say VTD. Jan’s experience doesn’t sound good, and my experience was by far better (as outlined in earlier posts). It’s just another example of MM’s individuality, both in the response (I’m lucky mine was very good (complete)), but also in the side-effects. When I started VTD I was given a load of papers describing each drug, with the usual statements like: ‘usual side effects (1 in 10) up to rare (1 in 10,000). But my consultant cautioned me, that whilst these are true, the actual combination effects are much more tricky to predict, as far as the individual patient is concerned, so Brian, if you could lay your hands on any information concerning the particular VTD combination, taken over a reasonably large number of patients, I would base any decision you take upon that, rather than listen to me, who had a good outcome.
Jan: In your latest post, if I can quote what you say (in italics):
“Prior to myeloma, I rarely visited my GP and had no experience as to how my body would react to strong chemo drugs. Some individuals sail through the process, but 4 cycles of cdt followed by an sct caused me severe nausea and vonmitting for months and months, resulting in 5 stone in weight loss, as well terrific fatigue, bed sores, constipation, urinary infections, skin problems.”
I take it your short course of CDT was an ‘induction’ phase, shortly followed by your sct? Is it likely that the horrendous side effects after this was due more to the sct contribution, than to the CDT? In the clinic I have attended in the past, many of the ladies/guys that have had one or two sct’s in the past, echo almost to the word, exactly what you describe. But fortunately, many of them have constitutions that are fairly acceptable to a low drug (Revlimid) maintenance strategy, when the final sct ‘wears -off’.
I’m also trying to understand what your consultant’s treatment plan actually was? You say:
“When my myeloma relapsed in 2015, my consultant wanted to prescribe Vtd rather than VCD, but was reluctant due to my previous history of neuropathy when taking thalidomide. It was the right decision because after just one cycle of VCD, PN problems started in my lower feet which despite lowering the velcade doseage, also developed in both feet, calves, thighs and hands.”
It appears that your consultant wouldn’t prescribe VTD because of your PN. that seems understandable, so he cut out the thalidomide, but maintained the Velcade (in VCD form), which after just one cycle proved to be just as troublesome, even after lowering the Velcade dosage. From the reading I’ve done, Velcade can be particularly difficult in patients with PN, and I’m surprised he/she took that treatment route. Again, I was lucky, it hardly affected me at all, I can’t explain it; it seems pure luck!
I do hope your second sct gives a long remission period, and I wouldn’t worry about any Velcade combinations for the future, since NICE wouldn’t permit it under current rules. Please keep us all up to date on how you’re getting on. Best wishes,
Peter
Richard, I should have said — it’s possible that your initial VTD treatment will knock your immunity right down. I had a load paperwork (when on VTD) that said about trying to minimise crowded places/swimming pools etc. So even if you feel good, mixing with the kids at school and the other teachers needs to be considered I think. Maybe it’s best to talk to your medical people about this.
Peter
Hello Richard,
Your quote:– ” although yesterday’s Christmas festivities were very low key – I ate a lot but only had one small glass of wine. From someone who likes a few at the weekend and during time off it was a bit of a shock. I kept thinking – if I drink will I go backwards, will my kidney levels start dropping again etc etc.”
I was diagnosed in summer 2015, with light-chain MM and underwent the full 8 cycles of VTD. Like you, it was a shock (to say the least) at diagnosis, but the one thing I’ve learnt over the past 18 months, is to try and keep a balance with the ‘old life’. Obviously, now a lot has changed. Apart from all the unknowns, the clinic visits, the blood tests, possible FISH, MRIs, Xray tests, it’s obviously necessary to try and manage your ongoing situation. I for one am damned if I’m going to let multiple misery take over my whole existence, and as a previous post suggested, it’s a lot to do with mental attitude. My father was from the Emerald Isle and my mother from a western European country that prides itself in its beer festivals (need I say more), so you could conclude that yours truly has some affinity to the odd pint and glass of wine — and in that sense you’re not wrong, and frankly, since diagnosis I have not cut out either, and look at it in context, ie if I didn’t take my wife out, or go down the pub with my sons, or friends, I’d be pretty much a miserably old xxxx. It’s just one of the ways I try and maintain a life balance. But I entirely accept that everyone is different.
In terms of your treatment, and job. I was never sick, or had bad tingling in feet or hands, but the VTD treatment did affect my tummy, and after the final cycle of treatment, this effect did last for some months, but it was manageable with Imodium. After loads of tests, nothing nasty was discovered, and it was concluded it was just an unusual and particularly difficult result of the treatment. So in all likelihood, you will not get anything that lasted as long as mine did.
I never underestimate the work load that teachers have, their dedication… etc. And the only advice I can give you is to simply see how things go. I’d say it’s pretty impossible to plan out every eventuality at this stage (unfortunately). Every persons’ reaction to treatment is different. You’re much younger that I, and it’s very possible that you’ll simple sail through the whole lot.
Very best of luck, and keep us all informed of your progress,
Peter
Hi again Brian,
We’re away shortly for the New Year – hence this rather late post. The one thing I’ve learnt, and refreshingly so, in talking to the medics, is not to underestimate the way you feel!! Computerised test results are obviously essential, but they’re just numbers, and sometimes, in my experience, containing the odd ‘laboma’ – like the eFGR calculation can. If your test numbers are reasonable, not off the planet, and you feel good, then I truly believe there’s every reason to be optimistic. So well done! Regarding the sct bias – yes you’re correct, and sct teams and process aren’t cheap (especially in the U.S), it’s just a shame that the sct’s don’t provide the magic cure that everyone craves. But it’s just possible that some kind of new, more tekki/advanced sct might do it in the future!! And of course the parallel rapid advancement in new drug therapy is incredible. Glad you found the Mayo Clinic stuff useful. Overall, there will be a younger, ‘healthier patient bias’ towards scts, and quite rightly so, but this benefit tends to be reduced, in overall numbers, simply because there are still more total patients nationally receiving scts than the newer treatments, so it would be expected that a greater number of these unfortunately fall by the wayside with complications. If the ratio of sct to non-sct treatments was say 5:1 (just quoted here as a simple example), then you might expect a bigger proportion of sct-ers to experience problems. It’s just a result of the numbers game (again).
So, great to hear from you… And as I said, well done, and whatever you finally decide will be the right decision.
Peter
Sorry Brian, I should have added… (I forgot)
Regarding your FISH test, (that you mentioned), and herein probably lies one of the deeper and more tricky aspects of the whole MM thing. Your k/l ratio is a bit on the high side still? But talking to my new MM consultant — and this has been a bit of a revelation for me. The Cytogenetic results do give some good indications for forward MM progression, and since yours is pretty good anyway, I definitely wouldn’t worry about too many FLC difficulties. It seems that while the magnitude of the FLCs is of course important (and the ratio), it’s the consequential impact on vital organs, like the kidneys, that is more of a concern. Obviously. You may be like me; very fortunate that even a largish FLC burden on the kidneys has only a minimal effect. My creatinine load was massive, but the cytogentic results just simply dismissed all this and my eGFR was still very good (it’s all luck). Unfortunately, the opposite can also happen, and at some trigger point in the MM progression (we all progress unfortunately), the renal function can fall a bit dramatically. Seriously so, if there’s an amyloid, and there’s little way to predict this early, I understand. Back to the VTD alternative — I had a Complete Serological Response for both the involved and uninvoled FLCs. Over the period of my treatment. I could have opted to reduce the cycles, and go on a low dose mtce regime, but I decided not to (you may also have this option). I guess I was interested in the outcome as it stood, with the complete response intact. So VTD is certainly a good prospect I suggest. Talk over the process with your consultant. Lastly, and I’ve only learnt this recently in discussion. Be very wary of eGFR predictions (using creatinine as an input to the calculator). To the point of doubting their validity compared with proper tests. At best they have a 30% error margin, so the eGFR readings that are wisely scrutinized by the great and good medical experts, may actually be predicting a result that appears 30% better than it actually is! I now look at other trending rather than blindly following the flow results.
Peter
Hiya again Brian,
Thanks for your kind words, and I hope Santa has been equally kind to you this Christmas — and I reckon he will continue to do so for many, many years to come.
But back to the MM journey… I was diagnosed with lambda FLC MM back in July 2015 – a very surprising result, since I’d actually been admitted into hospital with fish food poisoning! My baseline (initial) LFLC level was 11,500 mg/L, and my renal creatinine was nearly 500. I was put on a VTD treatment plan and within a single month, the LFLC level dropped from 11,500 down to 6.2 (max ref range= 26.3). I had no sct for reasons mentioned earlier, and throughout the next 8 cycle months, my LFLC level max was 15.0, but mostly lower. The k/l ratio was also very good. I finished the VTD treatment in Feb ’16, nearly a year ago.
Since then I had an increase in LFLCs (4 months after), to about a 100 (I’ll keep the numbers simple!). The consultant was not at all concerned, and funnily enough (just a few days before this Christmas), I attended the local hospital MM measurement suite, where I learned that the LC level had increased to over 1000. This was based on a Nov 16 blood test. My old consultant has just left, so I have a new one, and although she was concerned regarding the absolute LC level rise, she was also interested in the ratio, which she said should be bigger that 0.01. Mine fell short — which she noted, and as a consequence, she’s put me on a small maintenance dose of CD to get the LC numbers down and the ratio up! And that’s where I am now, I’ve got a series of tests lined up (bloods, FLCs…), but I don’t yet know the results.
So in summary, I was relapse free from Aug 15 (start of treatment) to approx Nov 16 (some 16 months), and am now on a small mtce dose. I’ve tried to be careful regarding the terminology here, because I’ve found the ‘Mayo Hospital Report regarding sct and non-sct survival rates’ which I attach and hope it comes out.
If you haven’t read it before, it is definitely worth a CAREFUL read, because of the way the Americans classify their terms. They split the sct and non sct patients into two cohorts, and they are both statistically large groups, so they are significant in meaning. But it’s worth noting that relapse, they define, as from the first treatment date, not from final treatment date. And essentially, overall progress depends largely upon the performance of the patient in the first 12 months following initial their treatment. If the patient does well in this first 12 months, then generally he/she will be much better placed later. In fact there’s only a year or so difference regarding the median survival time irrespective of whether you have an sct or not – and here we’re talking at least 10 years on in all cases. Of course the numbers of patients that don’t quite make it (even if they do well in the first year), is higher in the sct group, simply because the U.S still employ SCTs in higher numbers, although this trend, I understand is reducing because of the accelerated variety of novel drug combinations now becoming available.
Lastly, sorry about this marathon message. As I said before I don’t know what’s best for you, but certainly your possibility for a VTD ‘phase’ is very useful as a ‘suck-it-and-see’ , and maybe it’ll prove very effective in the much longer term. Please keep us all informed regarding your progress, and as before, very best regards,
Peter
Hello again Brian,
Thanks for your post. Yes, I experienced tingling and numbness, especially in the hands. I kept dropping things especially keys, in the most awkward of situations, normally under my car! I also had it to a less extent in my toes, but once the VTD stopped, this disappeared almost instantaneously and has not reappeared. The most difficult side effect for me was continuing stomach trouble, which did last some months afterwards, and I should have taken out shares in Imodium Tablets! I had almost every test to try and discover the cause of this – cameras, MRI’s, Xrays… But in the end it was all clear and it was just a function on my particular reaction to 8 cycles of VTD. But I was not sick, and no other bad features except a bit of swelling in the ankles at night – but nothing serious.
Like you I had long deliberations regarding SCT. It’s a very personal decision, and I can not recommend it to you one way or another. I decided not to SCT, it wasn’t for me. There was too much risk from the low immunity aspects, I am 67 but haven’t been in 100% health for 5 years. But even at 60 I probably wouldn’t have had it either. With almost zero immunity I feel that trouble can be stored for the future. With novel non SCT use, the American Beacon www has shown that there’s only negligible survival year differences between SCTers and Non SCTers, it all depends upon your performance in the first 12 months of diagnosis. I can try and find the Mayo Hospital Research Link if you’re interested? And we’re talking survival of >10 years. A lot’s been discussed re SCT or not SCT in previous posts. I know of SCTers surviving many, many years. A friend of mine died earlier this month following an SCT she had 16 months ago. So what can you conclude?? I can’t advise you. A senior MM consultant told me (before she left my hospital to go back into research) that SCTs will shortly be a thing of the past. For every expert opinion like this you’ll hear a counter and intelligent response saying the opposite.
But whatever decision you make — it will be the right one — then go with it 100%.
Very best wishes for Christmas and a great and healthy 2017.
Peter
