[peterlParticipant]

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

 

 

[briananParticipant]

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

[adriwest1Participant]

Hi Brian, I hope you don’t mind me chipping in, like yourself I am facing a SCT and I am concerned about the whole thing, I started VTD in July and from then until now there has been an assumption that this is what needs to be done. Nobody has asked me if I want one! I see my specalist again tomorrow so I guess I might have to make my mind up soon. If you don’t have the SCT will you be on anything to maintain your levels?

Your plan make sense to me and I fully understand the route you are taking, I really is hard to know what to do!

Good luck Adrian

[briananParticipant]

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

[adriwest1Participant]

Hi Brian, on my sixth round of VTD, first 4 months were fine but as time has gone on I feel more and more tired. Had a few side effects but nothing to bad, slight sick feeling and ringing in my left ear but can’t pinpoint which drug is causing this. Currently on 100mg a day (started on 50)  of the thalidomide which I now take every day including the drug free week. Sorry but that’s about all I have experienced currently so no real issues.

Regards

Adrian.

 

 

[janwParticipant]

Hi Brian, Peter and Adrian

I completely agree that the side effects of treatment vary depending on the drugs used and everyone reacts in different ways. We all have to individually decide on the best way forward after taking into account all of the available advice and information which we require to make a decision. As you state Brian, it’s a gamble as to whether the treatment will work. You have outlined your rationale very well for your decision to try VTD. Hopefully the addition of Thalidomide will reduce your light chains further and achieve a complete response without much PN. What are your light chain levels now and what were they originally when you started Velcade.

Peter my treatment has been as follows:
– Diagnosis March 2010;
– Four cycles of CDT April to July 2010;
– First SCT in August 2010;
– Five years of remission;
– Relapse treatment October 2015, 8 cycles of VCD followed by second SCT September 2015.

You asked whether the side effects which I suffered during my initial treatment in 2010 were due more to the SCT rather than the CDT. Although both were difficult as regards coping with side effects, I think the ongoing nausea with vomiting throughout the four cycles of Cyclophosphamide was a difficult long period of time when I couldn’t hardly eat anything or drink much resulting in most of my weight loss, low iron levels, dehydration and fatigue. At least during the SCT, the nausea only lasted three weeks. The recovery period after SCT can be long, but any achieved remission period can be without chemo drugs which also cause me the constant up and downs in energy levels due to steroids, the sleepless nights, chemo brain and fatigue, which combined with bone/rib pain from collapsed vertebrae can be hard work. Thankfully anti emetic drugs have improved since 2010 and my relapse treatment was much easier with the nausea under control.

Peter, as far as I understand Velcade is the NHS recommended path of treatment at first relapse and the the percentage of patients experiencing PN has been significantly reduced since Velcade has been administered via subcut injections. Also Velcade is apparently considered to be an effective treatment for light chain myeloma. However because I had experienced some low level PN on the 4th cycle of CDT, which cleared up as soon as Thalidomide ceased, the more cautious approach was to prescribe VCD initially and if PN did not develop, then change to VDT. Thalidomide had previously worked well during my initial treatment to reduce the light chain levels. Also if I could be treated without Cyclophosphamide, this would reduce the risk of nausea.

Adrian, I hope you decide on you best course of action to take which suits you and your myeloma.

All the best
Jan

[briananParticipant]

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

[peterlParticipant]

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

[janwParticipant]

Hi Brian and Peter

Brian: Your myeloma levels have certainly reduced significantly following your treatment. You must be so relieved and hopefully they continue to improve in the coming months. My lambda levels were 1900 at the start of VCD in Oct 2015 (all other levels normal) reducing after 8 cycles to the achieved 90% reduction target to proceed to Sct (190). After Sept Sct they were 43, then 54 in December 2016, which is very similar to the levels I achieved after my first Sct in 2010. Fingers crossed they will now only increase at a slow rate in the coming years.

Peter: It’s good to read your experiences of chemo treatment. You have been really fortunate not to experience many side effects during chemo. It is remarkable as to how everyone reacts differently to the various mixtures of drugs. I hope your PN in your hands has disappeared. You were right to assume my side effects improved after my initial 4 cycles of CDT, but they were helped by 4 days in hospital for fluids and 3 bags of blood which considerably boosted my energy levels. Fatigue was the biggest issue after my first Sct, which was not surprising after the ongoing nausea and weight loss during CDT prior to Sct. I slept for 12 to 14 hours a night for a good year. It took six months before I had some energy to leave the house to socialise. But after my second Sct, my fatigue has been far less, probably because my overall health was much better during chemo prior to Sct and with previous experience of the process, i knew what to expect. But I still find I have to sleep for 10 – 12 hours a night. PN in my legs and feet comes and goes, at present mainly triggered by the cold weather.

All the best.
Jan

[briananParticipant]

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

 

[peterlParticipant]

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

[briananParticipant]

Hi Peter

Excellent advice on Dex!!

Brian

[peterlParticipant]

Hello again Brian, I’m back from my travels, (now with good Wifi) and just wondered how you’re getting on with VTD?

Peter

[briananParticipant]

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

[janwParticipant]

Hi Brian

It’s so good to see you are coping well with VTD and excellent news that your myeloma light chains have significantly reduced. You must be pleased with the results so far.

Your pins and needles are more than likely to be the start of peripheral neuropathy (PN) as a side effect to Velcade and Thalidomide, which you need to discuss with your consultant because the symptoms can be progressive with further treatment. I was advised by my consultant that early detection of PN, regular monitoring and reviewing dose modification were important to manage the symptoms and prevent the development of more severe PN.

During my first cycle of VCD, I experienced pins and needles in my toes, which during cycles 2 to 4 eventually developed into sensations of pain, burning, prickling and numbness in my feet, lower legs and hands, together with a muscle weakness in the lower legs. From cycle 2 onwards, my consultant lowered the dose of intensity of the Velcade in each injection and after cycle 4, my Velcade injections were reduced to once a week rather than twice weekly. I found the PN was generally worse towards the end of each week of treatment, but reduced slightly during the week off drugs.

To help with the pain and throbbing in my legs from the PN, I found keeping my legs warm helped relieve the symptoms. Therefore I found bed socks, thick slippers, leg warmers, electric blanket, throws on the bed, hot baths, thermal trousers, warm nightwear all helped as well as increasing my pain relief of Tramadol. My consultant also suggested B12 and B6 daily supplements, together with other pain relief if required. Thankfully once the 8 cycles of VCD finished, my PN has gradually improved. However, my toes still remain cold and painful on occasions, but overall the symptoms are much easier to manage.

I hope your time at the races went well. At least the weather has been much milder which encourages you to spend more time outdoors.

All the best.
Jan

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