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’  – li…[Read more]

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 re…[Read more]

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…[Read more]

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…[Read more]

Sorry about the formatting in my last post.

Peter

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…[Read more]

Hello Valerie,

A brilliant story — and well done!  And as you say, treatments are improving all the time.  Thank you for telling us all; about your story, and have a great Christmas and a fulfilling 2017.

Well done again, best wishes,

Peter

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

Hi Andy,

Nasty to have a squamous carcinoma on the skull!  No problem with the carcinoma, because they hardly ever spread, but on the skull veneer , it’s a bit difficult to get it all out in one. I’ve had many head stitches through sports accidents, and it can be a bit uncomfortable after the treatment. Did your consultant say there was any…[Read more]

Hello Neil,

What you’re experiencing is entirely natural, and it would be very odd to know you’re suffering from MM and have little anxiety.  I’m still coming to terms with my diagnosis (nearly 18 months ago), and having gone through 8 cycles of VTD, I’m also pretty certain that these can affect mood and certainly anxiety, especially in my case…[Read more]

Sorry, I should have said – if you’re new to this mind bending, sometimes awful MM experience, there’s loads of info guides on this website that you can download, and that you and your Ma can look at.  And as I said yesterday, MM is very particular and affects people in many different ways.  For expert advice that’s just relevant to your Ma, you c…[Read more]

Hello again Molly,

Thanks for your reply.  If your Ma has lightchain MM, there’s 2 types: lambda and kappa, and both can affect the performance of the kidneys.  I understand that other forms of paraprotein MM can also affect the kidneys, but I think that the lightchain versions are the worst.  So it seems a good idea to keep as fully hydrated as…[Read more]

Hello Molly,

Sorry to hear that your Ma is suffering badly from the VTD treatment.  I was diagnosed in July ’15 and had a full 8 cycles of VTD until Feb ’16.  When first diagnosed, my specialist hospital nurse gave me a Macmillan Organiser, which I actually used after the first few weeks (sad eh!), to record the effects of the treatment.  I’m lo…[Read more]

Hello Nihal,

Sorry to hear about your dad.  I am no doctor,   just a sufferer of lambda light chain (LC) MM.  To my untrained eye it looks like your dad has kappa LC MM.  I understand if you have LC MM, you tend to have just one type (kappa or lambda) but not both.

As David says above, you have to speak with the medical team and ask them the…[Read more]

Dear Rebecca,

Regarding your last message…  I think your positive thinking, encouragement and support are absolutely first-rate; even amidst this sad story.  So thank you from all of us.

Peter