[briananParticipant]

I’d be very grateful if any members could tell me something about their experiences in switching from VCD to VTD. Did you get a better response? Were side effects better/worse? I have been on VCD for four cycles and seem to have reached a plateau. I’ve seen some of the comments already on the forums concerning VCD/VTD but I’m particularly interested in how one compares to the other. Many thanks in advance for any help on this.

[peterlParticipant]

Hi Brian,

Can you say what benefits (in terms of improvements) the VCD gave you over the 4 cycles?  And what’s the nature of the plateau that you’re now experiencing?

Peter

[briananParticipant]

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

[peterlParticipant]

Hello again Brian,

Thanks for your post.  From a personal point of view, the impact for me on VTD was considerable.  I was on it for a full 8 cycles, and this combination of drugs caused my FLCs to collapse from > 10k down to single figures in a few cycles.  My k/L ratio was also within limits for the full 8 cycles.  So, from my experience, if it’s a fast impact that you require, then VTD might just work (but of course we’re all different).  A chap I used to talk to in the MM clinic was also changing from VCD to VTD.  And he seemed to be doing fine after, but he never went into details, and he’s now on a different clinic time to me.  As an aside, and talking to my consultant regarding what’s going to happen at my first relapse.  She said that the second line treatment with cocktails containing <span style=”font-family: Arial , sans-serif;”>cyclophosphamide, are not really a preferred option (ie not that effective).  I can’t say whether this is correct, because I have no idea, and I don’t know whether this can influence your decision, but all I can say is that VTD did work for me.
</span>

Have a great Christmas and new year,

Peter

[peterlParticipant]

Sorry about the formatting in my last post.

Peter

[briananParticipant]

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.

[peterlParticipant]

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

[briananParticipant]

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

[peterlParticipant]

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.

http://www.myelomabeacon.com/news/2016/05/27/myeloma-morning-early-relapse-survival-ninlaro-kyprolis-europe/

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

 

[peterlParticipant]

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

 

[briananParticipant]

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

 

[peterlParticipant]

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

[briananParticipant]

Hi Peter

Many thanks for your encouraging words!

Best wishes for your New Year trip.

Brian

[g4zz41983Participant]

<p style=”text-align: left;”>Hi everyone hope you are all doing well as can be on your myeloma  journey.</p>
<p style=”text-align: left;”>Any body out there that can tell me how they felt on the VTD CYCLE. My wife was diagnosed back in October last year and the VTD CYCLE has wiped her off her feet on every cycle we are on the last one  ( cycle 4) then she’s going for a autologous stem cell transplant very soon.</p>

[janwParticipant]

Hi Brian

Since it’s been a little while since your posts, therefore I’m not sure whether you have since changed your treatment to Vtd or whether you have made a decision about a sct.

I was diagnosed in 2010 aged 53 and went through 4 cycles of cdt followed by a sct. I didn’t question the treatment plan, because I found the diagnosis as a complete shock and at that time it was presented as the best way forward to achieve a good period of remission. Thankfully I obtained 5 years of drug free treatment before relapse in Oct 2015 when I went through 8 cycles of VCD followed by a second sct.

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. Collapsed vertebrae prior to diagnosis was an additional discomfort with ongoing back and rib pain plus mobility problems. The thalidomide caused numbness and loss of any sensation in the upper part of my one leg.

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. Other side effects were low due to better management of the nausea, but I still didn’t have much energy whilst on chemo and the Dex nights were many hours without sleep. Fortunately the PN has significantly improved since the chemo stopped, but in this cold weather I’m still wearing bed socks, warm trousers, padded coats, thick duvets at night with pain relief on some days for the throbbing feet.

The plan for the relapse was VCD followed by another sct. This time around, I was extremely reluctant to go through another sct, but I realised my body doesn’t react well to long term chemo, therefore if the second sct could offer me a few more years without drugs then this had to be my first choice of treatment. Without the second sct, I would have been prescribed a change of chemo because VCD was only managing to reduce my myeloma levels and as soon as I stopped the chemo, the myeloma started to increase again.

My second sct was more manageable than the first, with my recovery period showing signs of being quicker than the first. My myeloma levels have reduced and have remained fairly stable for the last 3 months after the sct. Fingers crossed it will be sometime before I have to resume chemo.

Hope you are well on your current treatment.

Jan

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