Hello Marian,

I’ll do my best.  Your lambda LCs are a bit on the high side, but not that much. From memory, the max value in the range is about 26 or 28 mg/L. I haven’t got my notes with me, and you can check this number.   For some reason with light chain MM the nasties produced are either kappa or lambda, but not both. So the ratio is fairly i…[Read more]

Hello All,

I was on a VTD regime for 8 months, and yes:  feet warm/maybe burning, jelly legs, breathlessness, shaky feeling (especially in cold months), palpitations…  were all things that affected me.  Apart from a reduction in the thalidomide (to combat toe pins and needles) – I carried on.  The main reason being that the VTD combination def…[Read more]

Hello all,

I’ve had mixed messages regarding the use of curcumin in conjunction with conventional MM treatments – specifically CDT – where it can lessen the effects of the cyclophosphamide.  In some cases I also understand that if the patient has a low platelet count, or is on some kind of blood thinning medication then it may not be appropriate…[Read more]

Hello Sue,

Thank you for your post. Yes, it was pretty awful.  When I was admitted to hospital, my young and very able consultant was very concerned – I could tell by the look on his face!  I must have had a dozen blood tests, some of which he did via arteries, which the he told me, the nurses were not allowed to do.  But as I said, all these te…[Read more]

Yes,  my ALTs raised to 1400 – my other liver bio-markers went haywire, body turned yellow, bladder and bowel functions unmentionable — was admitted urgently to hospital, and taken off ALL drugs immediately for 2 weeks.  Had a dozen blood tests both by veins and arteries, and all proved ok.  Revlimid was proved to be the culprit for the de…[Read more]

The only NHS licensed maintenance treatment is Revlimid.  Unfortunately in a small number of cases Revlimid can have serious side effects, namely on the liver, in a some cases.

Peter

Kitson,

When I said that I looked on the menu and couldn’t find an ‘attachment’ button – unfortunately, I never looked at the bottom of the panel – if you still want the Kidney Infoguide pse say.

Peter

Hi David, it may seem that I’m a bit cautious regarding blood test (bt) results, but I had many years working with instrumentation, often for peaceful applications, and sometimes not so (and in this latter case, I can assure you there is little room for measurement errors being out of spec – as you can imagine).

I am being treated for MM in one…[Read more]

Hello Kitson,  yes me too.  In Jun ’15 I was diagnosed with lambda FLC – at a level of > 10,000.  Crazy thing was, I felt reasonably ok, apart from the food poisoning from eating fish in Dorset,  that admitted me into hospital for 11 days!  But a few months of VTD saw the nasties crashing to less than 20.  Great result the Drs said!

The lambd…[Read more]

Hello Kitson,  yes me too.  In Jun ’15 I was diagnosed with lambda FLC – at a level of > 10,000.  Crazy thing was, I felt reasonably ok, apart from the food poisoning from eating fish in Dorset,  that admitted me into hospital for 11 days!  But a few months of VTD saw the nasties crashing to less than 20.  Great result the Drs said!

The lambd…[Read more]

Hello again, my dear wife happened to read my post to you, and she wasn’t too impressed regarding the balance and an omission!  I’m afraid I left out a significant  side effect that I had with vtd. Sorry it was a while ago and I completely forgot. It concerned tummy trouble. Elsewhere in this forum I liken it to having to carry a loo roll round m…[Read more]

Hello Pauline.J,

Some time ago, I had full 8 cycles of vtd, (from Jul 2015 to Feb 2016).  And speaking to other people, I think I was exceptionally fortunate.  My memory is a bit rusty, but I did get PN in the hands and dropped things frequently – and this disappeared shortly after the cycles stopped.  I did also get it in the toes, to a le…[Read more]

P.S.  About the VTD:  I forgot – at times it did make me breathless, especially after a largish meal.  Had loads further tests, but all clear – and this side effect stopped a little while after my last cycle – but apologies again, I can’t remember how long after, probably a couple of weeks.

About Cheltenham:  Sorry again – have a great time, and…[Read more]

Hello again Brian (and Jan),

Brian:  Yep, I had the same PN that started in my fingers.  I’m sorry but I can’t remember at what stage of the 8 VTD cycles it actually started.  It was a bit of a while ago!!  But I do remember that it was very inconvenient at times…  Like coming down in the early hours for coffee, hungry and thirsty on dex, and…[Read more]

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

Peter

Hello Rob,

Yes, it comes as a complete shock to have an MM diagnosis!  I never had a clue about MM, in fact I’d never heard of it, but we learn fast, and this website is invaluable in that sense. I had 8 cycles of VTD and it brought my light chain numbers down from a staggering 11,500, to single figures, which then remained constant. I had only…[Read more]

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 g…[Read more]

Hello Angela,

I can well imagine that after 100 days (surely not all in the isolation room) that Graham was a bit ‘sad’ to leave the medical teams there.  There’s often a strong, caring and professional bond between long term patients and their medical teams, even to the extent to the  person that brings you round for your first cup of c…[Read more]

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’…[Read more]

Hello Millie,

I had VTD (not VCT), for a full 8 month’s cycles.  And the only real (but significant) side effect was tummy trouble; going to the loo.  This lasted for at least 5 to 6 months after the final treatment (no sct).  It was unpleasant at the time, but manageable with loperamide, but then, as quickly as it started, it stopped.  The doc…[Read more]