Hi Sue
Many thanks for your reply of Aug 10th – I’ve only just seen it as I’ve been away.
One question: how did you find the details of the Indian hospital where you were treated?
All the best
Brian
Hi Sue
Did you manage to get Lanalidomide back from India?
I would be really grateful if you could say what happened.
All the best
Brian
Hi Sabs
Many thanks for the information. What trial is your partner on? Perhaps it is the CARDAMON trial, which I know about?
Brian
Hi Peter and Jan
Many thanks for the information – it’s very helpful and much appreciated.
On the subject of Cheltenham, I ‘m not a great fan of horse racing but I go with my brother and his son who are experts on the subject. I find it a great spectacle with – apart from the racing itself – lots of ‘human interest’. Of course, the obvious risks to the jockeys and horses take some of the shine off it. I never go with any hope/expectation of winning any significant money!
All the best
Brian
Hi Peter
Good to hear from you again.
I am now halfway through four 4-week cycles of VTD. All seems to be going well. At the end of the first cycle, my kappa light chains (my particular problem) were down to 20 and the ratio was 2.4. I did not see figures as good as this when I was on VCD. Side effects are minimal; I am beginning to notice some pins & needles at the ends of my fingers.
A couple of questions: You mentioned that you experienced neuropathy when you were on VTD; did it arise gradually etc,? Since you completed your course of VTD, have your key levels remained essentially the same or have they floated up/down?
My strategy remains to complete my course of VTD and then to decide on whether to have an SCT.
Anyway, I’m going to forget about MM for a few days and head to Cheltenham races – sinking a couple of pints of Guinness in the process!
Regards
Brian
Hi Peter
Excellent advice on Dex!!
Brian
Hi Jan and Peter
Thanks for the further informative / helpful posts.
One aspect of MM that I’ve never really researched is the extent to which different forms of MM might require different treatment regimes and have different prognoses. (You both seem to have the Lambda light chain form whereas I have the Kappa form.) Have you pondered this? Perhaps you have found related material on the internet?
I had my first day of VTD treatment yesterday. So far, no noticeable effects from the ‘T”; I have been started on the fairly low-strength 50mg tablets. Dex has had the usual effect of keeping me awake half the night – ‘snacking’ and watching TV (catching up on old episodes of Cheers).
All the best
Brian
Hi Jan
I was very interested to hear more about your experiences. It really helps in making more informed decisions.
You asked about my light chains levels. The highest levels before and lowest levels after my VCD cycles were:
– Light Chain Ratio : 180 to 7
– Kappa Light Chains : 1243 to 53
– Lambda Light Chains : 10 to 7
A couple of other readings that I particularly track:
– Paraprotein : 39 to 4
– Bone Marrow Aspirate : 38% to 2%
As I mentioned in an earlier post, my response was categorised as a borderline Very Good Partial Response.
I would be very interest in your comments – and comments from others – on the figures,
Best regards
Brian
Hi Adrian
Please don’t be influenced by my approach. Everyone’s MM condition is different. In fact my consultant is recommending that I have an SCT now rather than putting it off.
I would be interested to hear about how you are getting on with VTD.
All the best
Brian
Hi Jan and again Peter
There is a lot of useful and thought-provoking information in your posts.
I have decided on my way forward. That is to have some cycles of VTD – starting this week – with a view to achieving a Complete response. My cycles of VCD achieved a borderline Very Good Partial Response. I have accepted the increased risks of having VTD treatment – particularly PN.
My strategy – at moment – is to try and put off having an SCT until/unless it becomes obvious that this is the best way forward. Following the VTD cycles I would hope to have a reasonably lengthy treatment-free remission period. In the end I recognise that I may go down the SCT route. I have had a successful stem cell harvest that provided enough cells for two SCTs.
Like all treatment regimes for MM, my approach is a gamble but at least I feel that it is a reasonably well-informed gamble. Key points of my rationale for going down this route are:
– I don’t believe that I have the most serious form of MM. I have not experienced any symptoms particularly bone pain and my FISH result were encouraging.
– I started having treatment because lights chains began coating my kidneys and affecting their function; apart from that there was nothing intrinsically wrong with my kidneys and my MM condition was judged to be stable.
– following the VCD cycles my kidney consultant said that the kidney issue had effectively ‘gone away’ and that – from his perspective – I did not currently require any further treatment
– I tolerated the VCD treatment very well with minimal side-effects
– SCTs can provide the best length of treatment-free remission but it’s by no means certain. The reports that I’ve seen concerning SCTs are not overly encouraging. An SCT will almost certainly cause a lengthy period of adverse side effects – possibly serious side-effects as Jan experienced. In addition there are very significant infection risks
– the latest drugs – particularly Revlimid – are very effective in controlling the condition, Given these and others in the pipeline, Within a few years SCTs may well be a thing of the past.
So that’s my strategy – any comments appreciated! I will certainly keep it under review. A key consideration is that because of my age (69) the SCT option may not be available to me for too long.
As an engineer, I find MM quite interesting but I’d rather not be observing it at such close quarters!
Best Regards
Brian
Hi Peter
Many thanks for your encouraging words!
Best wishes for your New Year trip.
Brian
Hi Peter
Many thanks for the comprehensive information in your last two posts – I am in the process of digesting it all!
You obviously keep a good record of your test results – as do I. I have a spreadsheet recording my results back to May 2014 when I was first diagnosed.
I have the Kappa LC version of MM – generally described by my consultant as ‘monoclonal gammopathy of renal significance’.
I started treatment in April this year. The direct reason for starting was because a fall in my blood albumin level (to around 20) was detected; a kidney biopsy then determined that LCs were coating my kidneys and causing protein to be lost via my urine. (By the way, if you’ve not had a kidney biopsy and you can remember the old TV programme ‘The Golden Shot’, you’ll be able to imagine what one of these is like!) So it was confirmed that I had a kidney problem but my kidney consultant stressed that the intrinsic functionality of the kidneys was OK but the ‘pipes were getting furred up’.
Following my chemo. treatment cycles, my albumin level moved up to 38 and my kidney consultant told me that from his perspective my kidneys were OK and he (again from his perspective) would not recommend any further treatment. My creatinine levels always have been generally fine – except when I suffered a really severe gastric upset; as you probably know, related dehydration can cause the creatinine level to shoot up. (There could well be some similarity to your food poisoning episode.)
I’ve had various types of scan over the last couple of years and although some minor bone issues have been detected my consultant concluded that they are not significant.
So currently I am feeling very well, with no obvious symptoms and fairly good blood test results. Hence my reluctance to go down the SCT ‘sledgehammer route’ without exploring any reasonable alternatives.
Thanks for the link to the Myeloma Beacon paper – the results are very significant. I suspect that there may even be a bias towards SCTs and the benefit of this procedure may be even less than stated. My reasoning is that there appears to be no random selection of patients having SCTs and not having SCTs; since those having SCTs are likely to be healthier than those not having SCTs, the former would – presumably – already have a better survival prognosis than the latter. (Or maybe I’ve got this wrong?)
I hardly dare suggest it, but any further info. will be greatly appreciated! I will put an update post here as things develop.
Best regards
Brian
Hi Peter
Many thanks again for a very thoughtful and helpful reply. It is quite difficult to find the right words to express how much I appreciate your input.
Firstly, I would appreciate the link to the Mayo Hospital report – if it’s not too much trouble to find. Apologies for more questions, but I wondered how long it is since you completed your VTD cycles and whether you have continued having some treatment – perhaps at a reduced level.
My thinking about SCTs very much mirrors yours and I have had differing opinions from consultants. I currently have a very good consultant at one of the major London hospitals. However, SCT is presented as the ‘standard’ treatment and there is subtle but well-meaning pressure to go down that route.
My preference – at the moment – would be to switch to VTD and see whether I could achieve a ‘complete response’. I would keep SCT as an option until/if I had a quick relapse. I have had a successful stem cell harvest so that makes it slightly easier to keep the option open. However, I am 69 and that make it difficult to keep the option open for too long! I suspect that being able to access the newer MM drugs – despite the best efforts of NICE – is important.
My consultant arranged a ‘FISH’ analysis of one of my earlier bone marrow biopsy samples and this suggested that I was not suffering from a couple of the more aggressive MM types. (I guess that you will had one or more bone marrow biopsies – an experience not to be recommended in my view!)
Best wishes to you for Christmas and the New Year. Let’s hope for the best for the future and keep being proactive.
Brian
Hi Peter
Many thanks for your very helpful reply!
I am certainly getting the impression that VTD can be more effective although I’ve heard that it can involve an increased risk of neuropathy. I think it’s worth the risk in order to get improved results.
By the way, have you had an SCT? My consultant is recommending that I have one but I have had conflicting opinions on it.
Best wishes to you for Christmas as well.
Brian
PS I’ve had formatting problems when I’ve cut/paste from MS Word; drafting messages in Notepad does not seem to cause this.
Hi Peter
I have achieved a borderline “very good partial response” . My paraprotein level is 4 and my light chain ratio is 9.9. The highest values that I have ever had are 39 and 180 respectively. I’d really like to achieve a “complete response” before considering an SCT.
Brian
