Hello Michael (and all),
If I remember correctly Michael, in a previous post you said you were a retired NHS Consultant? Assuming I’ve got this right, then obviously being on the ‘inside’, you will be much more familiar with NHS England and NICE processes than ordinary MM patients, who wouldn’t normally be able to understand these tricky (and often major) constraints that are imposed on us by these two organisations. So thank you for your very useful post and for Myeloma.uk with their ongoing technical and ‘political’ work regarding the application and the use of new drugs. Obviously these kind of interventions are an essential feature of treatment progress. So well done!
Best regards,
Peter
Hello again Pat,
Thank you for your post especially considering your husband’s circumstances. I’m sure that the tremendous difficulties he’s going through are familiar to many patients in the past, and unfortunately will affect many MM sufferers in the future if the current rigidity regarding the availability of novel drugs (and their combinations) continues. As I said in an earlier post, NICE define MM as a chronic and eventually very serious condition – this being irrespective of the individual’s treatment pathways previously chosen. So for them (NICE), it’s almost a ‘self fulfilling prophesy’.
However, there are a few things that have confused me since I was first diagnosed with MM. When I had to start drug treatment, I was on VTD. This lasted 8 cycles, and brought my light chains (flcs) down to single figures. I only have flc MM and no abnormal paraprotein peak. Remission was at this very low level for over a year, but then the flcs started to climb again. So, I got interested in what actually constitutes a ‘relapse’? I read papers from the International Myeloma Working Party (IWP) where the criteria for relapse was ‘kind of’ defined – mainly in terms of results from blood tests. I happened to have 3 consultants at the time (one was leaving, her temporary replacement, and then my final long term Dr). And it quite surprised me that none of them rigidly adopted the formal relapse definitions. They all based their views on their subjective assessments of the numbers and trends as shown by the blood test results. This is probably a good thing, since their criteria for swapping over to a new drug therapy is more ‘relaxed’ than if they adopted the formality of the IWP’s definitions. But I don’t think it’s fool-proof. I know of one MM patient who insisted on being kept on a certain line of treatment, albeit her Dr was about to give up because of increasing PP levels. A little while later her PP levels plateaued out and remained that way for months. Although with her, there was no new bone pain, as in your husband’s case. You say that Carfilzomid is no longer effective? So I’m assuming this isn’t just a ‘blip’ or a ‘laboma’ rogue result? I’m just a little confused/cautious in this whole area, especially since it’s end-of-life considerations we’re talking about. I’ve no idea why Panobinostat (or Ixazomid) aren’t options for you? Panobinostat’ is effective and can be taken on a 16 x cycle of 3 weeks/cycle. The side effects are well publicised… And I would have thought that if your husband can tolerate the drug, then this line of treatment can last for a year, with the hope that new treatments will eventually be available for him. You say that that the final decision is up to him, and that is a very difficult position to be in. And, unfortunately, you are correct – the remaining lines of treatments for patients can be very restrictive, and time runs out too quickly. I do hope there’s still a suitable treatment pathway available for your husband, and please keep us all informed of his progress.
Very best wishes, Peter
Hello Patsyann (and all),
I think your post regarding your husband’s lines of treatment running out is a) worrying and b) shows (as Micheal Ashton has previously remarked), how far the UK (NICE and NHS England) are behind many other countries treating MM.
So what is the outlook regarding your husband? As I said to Helen, surely ‘they’ just can’t leave her (same issue) or your husband ‘high and dry’? I say this because NICE define MM as ultimately a very serious chronic condition – and when their fairly rigid straight jacket of treatment options run out, I’m not sure they have many answers left??
And incidentally, I’ve never heard of Interferon used as a treatment for MM either. I can’t find a reference to it in Myeloma.uk’s list of approved NHS drugs.
Very best wishes,
Peter
Hello again Helen,
Thank you for your prompt return post – and this is the second time I’ve tried to reply this morning – it all went wrong when I tried to include a NICE link to this post concerning polidomide. Hope you don’t mind me attaching the link…
https://www.nice.org.uk/guidance/ta427/chapter/4-Committee-discussion
Not sure if it works (the link), but if it does and maybe you get time to read it – it might help with your Consultant. If it doesn’t work Helen, search under NICE polidomide in google.
Very best wishes,
Peter
Good Morning Vince,
Prior to retirement I worked for the Americans, Canadians and British on various comms’ related projects as a consultant/advisor. But in my spare time I enjoyed making models using obvious materials like: wood, metals, composite boards, MDF etc, along with the vast number of glues and solvents available. I got fed-up with the travelling involved in my main job, so took early retirement to spend more time with the family. But after 6 months I got ‘stir crazy’ – and decided to look for a local job – and that was my big mistake.
I got a job in two local secondary schools. I took some courses and ended up taking small classes for GCSE Maths, ‘A Level’ Maths and Physics (I have a degree in physics). I then, in my view, compounded my mistake by agreeing to assist the students in the CDT (woodwork/metalwork) workshops because of staff shortages. One of the schools was a typical turn of the 20th century building, re-worked and patched up to cater for modern educational needs. The workshops were an absolute ######## nightmare! I’m familiar and can operate most workshop type machines: metal and wood lathes, large sheet bench cutters, milling machines, band saws… But the problem was dust and debris extraction, which was virtually non-existent. There was little ‘properly engineered extraction systems’ so for example the band-saw machines emptied their fast flowing debris, through a floor tube (about 4″ dia) into a dampened bed retainer. Walking anywhere near the workshops first thing in the morning, I could smell the MDF dust in the air. I took pictures, complained, but got no where. So I left after a year. I honestly think that the exposure I had was a contributing factor to my myeloma (diagnosed mid 2015). Proving a causal link is however difficult – especially considering the thousands of American and UK patients newly diagnosed each year – who have absolutely no connection with ‘wood’ exposure.
It’s a big mistake to underestimate the seriousness of this nasty disease. NICE define myeloma as “A chronic and ultimately fatal condition that seriously affects quality of life.” – this being irrespective of the treatment pathways chosen. So, as you say, anything that can be publicised to warn potential patients of the risk should be done as soon as possible. I’ve no idea whether you have a trade association? But as a start maybe you could try and get any further evidence available (concerning carpenters) and any higher than usual occurrence of myeloma in that group? Myeloma UK may be able to help? I think your post is extremely useful, and I wish I knew the best way to address the problem.
Regards,
Peter
Hello Helen,
Yes, I’ve not been on here for a while (but got the notification email regarding your post), and as you say this website has changed a bit!
I understand that you’re on Panobinostat and VelDex? And that you’re starting to relapse again. What has your consultant said regarding the remaining line(s) of treatment available to you? And what happens then? NHS England and NICE can’t leave you ‘high and dry’, so I’m assuming they’d then have to pay for remedial treatments like dialysis, or bone operations?
Very best wishes,
Peter
Hello Mavis and Jan and all,
It’s good news that you’re both progressing well There’s obviously bound to be several bumps along the road, but with new and novel drug therapies [and the combination of different types – that oddly may not appear to work on paper (according to my consultant) – but practically are very useful treatments], I think there’s every chance for optimism. I’m not sure the stats regarding MM survival rates are that useful Jan, without further qualification from MyelomaUK. Because as you quite rightly say they probably contain such a miss-mash of ages, underlying and pre-existing conditions, late diagnosis… etc, that they can be viewed with a little caution!
I remember the American MM patient on the Myeloma Beacon website, who if I remember correctly, is still going strong after 19 years (of which 14yrs with drug treatments). And my old retired GP, 10 years on and again still going strong, and that together a diagnosis and treatment for prostate cancer! I know quoting these two cases is pretty meaningless in the whole scheme of things, since MM treats us all so differently, but why not have 15yrs or 20 years as your targets ladies? You may surprise yourselves.
Best wishes to everyone,
Peter
Hello Stu,
Medics sometimes (sometime often…) use an unfortunate choice of words. And as already mentioned ‘palliative”, in your Ma’s case really means to ease the pain and discomfort, and doesn’t infer anything more sinister. To put your mind at rest, I would ask her consultant exactly what the situation is, and what the interpretation of that unfortunate word is. Before MM, in my younger days, I used to do a lot of sports, and believe me I know how spine and back pain can echo through the body and completely bring a person down. So any drug relief (especially at the outset), is probably, and unfortunately, very necessary. Also the “at risk” label may be a temporary thing, until the MM treatments start to kill the MM cells, which in turn will help your Ma’s kidneys recover. Again if I were you I would seek clarity from the experts.
Very best wishes to yourself and your Mum, and here’s looking to her improvement over the next few weeks.
Peter
Hello Stu,
As Teresa says in her post – there’s a lot of free downloadable info’ guides (or can be sent to you in booklet form) from this website. “Myeloma and the kidney” is one such, and if you haven’t got it already – it’s well worth a read. Don’t know how far you’re into this nasty myeloma journey with your Ma, but if it’s her kidneys that are affected, one of the tests that assesses this is the eGFR (estimated glomerular filtration rate) test. It calculates (in ml/min) the effective flow rate of waste products through the kidneys, and is easily performed from the results of a blood test. Prior to MM my eGFR was normal at about 75 to 80 ml/min, but afterwards it took a bit of a bashing… The other confusing thing is that you might hear medics talking about eGFR percentages. In my case above they could call it 75% to 80% — it all means the same — and is interchangeable because the best eGFR is around 100 ml/min, so it’s got the same value as 100%! The other thing of course is that MM can be VERY different for different patients, and if it’s kidneys involved, it could be a lightchain MM (and there’s two different types of lightchains), or some other paraprotein problem, or some other underlying cause. And of course each patient’s kidney reactions can be different as well as their recovery rates, which are vastly improved once well re-hydrated. As the info’ guide says, “drink loads of fluids!” Very best wishes to your Ma, and keep us “posted” regarding her recovery. Good luck,
Peter
Hello Rosie,
Not an easy decision regarding your MIL’s SCT. Together with the physical and mental trauma of her knowing she has Myeloma (MM). I was diagnosed back in the summer of 2015. My consultant was very matter of fact with the announcement, and it took me (and my wife) a few minutes to get back on an even keel. My consultant’s words were, “we are where we are…” the implication being that I’ve just gotta get on with it! And that’s what I’ve done — but not always easy Rosie. Patsyann was absolutely correct in her post — and I doubt if any MM patient in their right mind would advise you (via this website) for or against an SCT. All they can do is recount their particular MM history, and herein lies the absolute difficulty with MM, because in a way, individual histories are pretty meaningless; since MM and more importantly the treatments, affects individual patients in completely different ways, so even if you had a dozen or so ‘potted histories’ from various MM sufferers, I suggest it would be inadvisable to apply any of these, in great detail, to your MIL’s case. Even if you had a hundred or so case files and diligently went through them in great detail to look for patterns, I think you’d still be lucky to get it right! So in the absence of this, and if it were me in your situation, I would heavily rely upon, and ‘go – again’ with the MM consultant team, ask them loads of questions, be happy that they’ve responded in terms you understand and have answered your questions and take your time before advising your MIL what you think the best course of action is.
Good luck, and best wishes to your MIL, Peter
Hello Jan,
I’ve just read your post, especially regarding the drug side effects, which can be very troublesome and difficult at times. Forgive me if I’m about to talk around a few negative issues, but I think you can draw some good positive conclusions regarding these — hope so at least!
Firstly (and I’ve no idea why second SCTs are generally not as good as the first ones). You have come through your second SCT well, unlike a couple of my myeloma contacts who certainly haven’t (one passed away). So it seems to me that you have a fairly robust metabolism which certainly helps. Secondly, in a small number of cases Revlimid can do serious damage to the liver. You haven’t experienced this (you’d probably be hospitalized!), so this is also greatly in your favour. And Revlimid is an effective MM drug to take. And here, the options regarding your side effects could be looked at. I don’t see you have any further options other than drugs? Unfortunately they’re critical to delay this vile disease from progressing to its advanced stages. Maybe you can see your consultant concerning a change of dose or frequency? Sometimes a little ‘tweak’ here and there can work wonders. Or maybe try another line of treatment? But there’s a word of caution: NICE have a framework regarding lines of treatment and I understand that if/when you change you effectively lose a line, and unfortunately there’s not an infinite basket full of treatment lines to choose from. So it’s best to talk to your consultant and emphasis your side effects, and see what he/she comes up with.
Good luck, Peter
Hi All,
Yes, I do sympathise with some of the posts above, but the new Myeloma site could be a lot worse! When MicroSoft (MS) introduced an all ’tile’ presentation in Windows 8, there was a great deal of adverse comment from loyal MS users. MS tried to capitalise on the tile apps presentation used in mobile phones and tablets. But in my view, finger tapping on a mobile app icon to access a specially structured app for mobiles (say Whats App), is a completely different situation than introducing tiles in a software update – to a once classical point and select web page. The latter if now tile based can be difficult to navigate, unnecessary and the old adage “if it works, don’t alter it!” applies in my view. Myeloma UK have now gradually introduced more point and select options, rather than hiding in a cluster of tiles as they originally did at the software update stage. Probably because they had such a poor response from users, who frankly have other things on their mind, rather than trying to struggle through to get to the forum section say. I also wonder whether the latest web page change was contracted out? Or done in-house? And either way: what was the driver for this and of course the £££?
Peter
Hello again Christine, Your latest post came through as I was submitting mine above, so obviously it can be largely ignored since you’ve decided upon your future course of treatment. Now that you’ve decided, can I say that I think you’ve totally made the right decision, and if our roles were reversed (and it was me with your decision), I wouldn’t hesitate to opt for an SCT, it seems to be completely the correct decision.
Best of luck for your future MM treatments,
Peter
Hello Christine,
Your post concerning whether or not to undergo an SCT is very understandable, especially since you have such good results from your early treatments. Can I suggest that you will get very few posts back from MM patients who have not opted for the SCT route, but have had alternative ‘successful drug treatments’ simply because obviously your medical team are the best people to
advise you regarding your options, and no one would want to disagree with what they’ve said. However for what it’s worth — I was diagnosed (66 Yrs) with this miserable disease (<3 years ago), and was advised against having an SCT. The main reason being the threat of looming prostate cancer. It was considered that if this was confirmed (and it was!) having an SCT would just interfere with the prostate treatment, and take too much out of my already depleted immune system. So I commenced MM drug therapy and whilst it’s had it’s moments and been difficult at times, I have also enjoyed fairly long periods of remission.
The problem with MM planning is that the individual’s responses to SCT/non-SCTs is variable. So the mere fact that I’ve had a ‘reasonable time’ just on novel drugs, doesn’t mean that you will. And this obviously applies to SCTs as well. I can’t remember the actual numbers, but I think there’s about 3000 new MM cases diagnosed each year, so my one post and the few from patients who have had really good SCT experiences need to be taken with some caution I suggest. So what do you rely on? Obviously speak to your consultant and ascertain the risks etc of the SCT route, and discuss the possible side effects of long term drug use (which may get worse as time goes on?). This hopefully will put your mind at rest regarding the SCT. I’ve also attached a link (from the Myeloma Beacon Site) that summarises a study done (covering patients 2006 to 2014) by the Mayo Clinic, who investigated two large cohort groups – one being treated just with drugs (VTR) and one being treated with drugs after undergoing SCTs (within 12 months of their diagnosis). The question of whether or not ‘an SCT’ is obviously important, but there’s also the question of survival rates. The study concludes that average (median) survival for the non SCT group is 110 months (9 years), providing the patient first relapsed late. And for the SCT group: 122 months (10 years) again for SCT patients who never experienced an early relapse. Survival seems to DEPEND upon how long the patient took to first relapse — and damaging high risk chromosomal abnormalities like del(17p), t(4:14, 14:16 and 14:20) translocations. It’s probably a lot to read, but as I said it’s difficult to judge what to do based on my single post, and a few others, so we’re only left with the bigger picture.
Peter. P.S. (to the guys: I had 20 days of prostate radiotherapy and this has effectively killed off the cancer cells [psa approaching zero on 2 consecutive tests]. Macmillan say that 50% of all men over 50yrs and 80% of all men over 80 will have some prostate cancer cells. With 3000 new MM cases diagnosed each year and half of these men, you guys can do the sums yourselves… Prostate cancer will kill you quicker than MM, and whilst it’s tricky to combine both treatments, it was in my case a necessity. So I think regular psa tests are essential).
Linda, well done on such a good record after your sct. Perhaps one day, and not too long into the future, a modified and enhanced sct may finally be the complete cure to this miserable disease.
Rebecca: I think we’ve posted before. Looking at yours above, and I note your comments regarding your translocation and feeling ‘tetchy’. And I think your feeling this is probably worse, in a few respects to your translocation, as far as overall well being is concerned! Obviously, and unfortunately all sct’s will finally give way to relapse, since they’re not a cure, but as Linda has shown, this can be in many years time! So there’s all to play for. Can you say what your current level of flc’s are? And what your eGFR is? They should be okay, or you would have had a caution from your consultant. So I know it’s easy to lapse into negative thoughts — from some websites, or from waiting room chatter — but there’s many posts like Linda’s that give a great message. So stay positive, get your blood tests done at a frequency agreed with your consultant, and try and forget those tetchy nasties…
Best wishes to all,
Peter
