Many thanks for the information.  What trial is your partner on? Perhaps it is the CARDAMON trial, which I know about?

Brian

I have recently completed my first round of chemotherapy (VCD initially and then VTD). I have had an excellent response and I’m in remission. I am now being encouraged by my consultant to have a first SCT; tests etc. have indicated that I am eligible for this. However my preference at the moment is not to have an SCT and to have some form of…[Read more]

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…[Read more]

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 s…[Read more]

Excellent advice on Dex!!

Brian

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?…[Read more]

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…[Read more]

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

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 h…[Read more]

Many thanks for your encouraging words!

Best wishes for your New Year trip.

Brian

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…[Read more]

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…[Read more]

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…[Read more]

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

Many thanks to those who replied – they have certainly increased my understanding.

All the best

Brian

Many thanks for the link. SCT or no SCT? – a very difficult question! My feelings at the moment are that if an individual is in good health, then SCT (even though it is something of a ‘sledgehammer’) is marginally the better way to go.

Brian

Many thanks for the info. concerning the Mayo clinic study. It sounds encouraging!

I would be very grateful if you would send me web link.

Brian

Many thanks for your reply. Let’s hope your success with your treatment continues for many years!

I have discussed Revlimid with a number of people and it almost seems like a ‘wonder drug’. It’s a great pity that the NHS seems to be restricting its use for some new MM sufferers in some circumstances.

A basic question: on the weeks…[Read more]

<span style=”color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 12px; line-height: 16.08px; background-color: #f6f7f9;”>Many thanks for your thoughtful reply – it is very helpful. I saw my excellent consultant yesterday and we had a good discussion about the options. I am going to have a further round of chemo. so that…[Read more]

I am now being offered SCT but I am keen to consider other options – perhaps ongoing monitoring/maintenance.

I would be very interested to hear from any members who decided not to have an SCT and went for another option and what…[Read more]

The developing discussion on supplements is very interesting!  In the past I’ve never really believed in them but now seems a good time to start!  My view is that they are very unlikely to do any harm and they might just be of benefit.

I am taking a vitamin B12 supplement – I was told that the level of this vitamin in my blood was low b…[Read more]

I’m in a very similar position to you – although I’m ten years older .  I’ve recently had my second infusion of Bisphophanates and have experienced no side effects – so far.

I am now arranging to see another consultant who I believe can advise me on other possible treatments and trials.

Best of luck to you!

Brian

Many thanks to Karen, Andy and Mike for their very helpful replies. I feel that I am getting a better perspective on the condition and that has given me at least a glimmer of hope about the future!

I am very keen to investigate treatments that may/can be useful at the smouldering stage.  If I discover anything useful, I’ll start a new topic…[Read more]

Many thanks for your encouraging reply.  I very much appreciate finding out about the experiences of others in my position.

Best wishes to you and Frank.

Brian

Many thanks for your replies and best wishes. It looks like we are in the same position – lots of tests but no symptoms for the moment. (Did not enjoy the bone marrow test!)

My haematologist recommended the infusions because they can – apparently – reduce the possibility of future bone damage.  I was not too keen on the…[Read more]