Rebecca:  I think we’ve posted before. Looking at yours above, and I note your comments regarding your translocation and feeling ‘tetchy’.   And I th…[Read more]

Well done. That’s a fantastic result.  And congratulations to everyone involved.

Kind regards,

Peter

flcs at 108 are pretty low. I would think that the hospital never contacted you because of this, what I think, is a reasonably “low level”. I’m not sure whether you have kappa or lambda flcs, and if you look at the “healthy” range that would be pinpointed by a blood test, the lambda version has a max value of around 30. I’m away from…[Read more]

Peter

Peter

thanks for your post regarding 10 years; but you’re a bit of a newcomer mate!  Only joking…  yours is a brilliant story.   I said “newcomer” tongue in cheek, because some time back I read the story (on the U.S. myeloma beacon site – that I also follow), concerning  chap called “Gary H”, who now has survived 19 years with MM – you may…[Read more]

I’ve just finished the first cycle (3 weeks) of VFD (20mg Farydak, 6 times, over the three week period).  I had ECGs to check the Farydak’s heart effects – all ok.  But I did have serious bleed problems, after the 6th (last) capsule, which meant a visit to A&E.  I had a mtg with my excellent haematology consultant a couple of days ag…[Read more]

Yes, it’s a complete shock to the individual and their family when MM is initially diagnosed.  But take heart, and although dealing with MM is a long haul process, as the post above says, there are lots of drugs…  and similarly I chose this latter path rather than an SCT, since my health wasn’t that great prior to the diagnosis, and w…[Read more]

Happy new year to you -…[Read more]

Thank you for your sentiments and words…

Peter

Funny you should post this.  I had 8 cycles of VTD (ended Feb’ 16) and four months later, I still had severe lower abdominal pains and diarrhoea.   It was like constantly having a ‘bad curry!’  After loads of investigations: colonoscopy, CT Scans, samples…  all these tests showed nothing.  And no diagnosis is currently available.  I…[Read more]

Ian:  If you go onto Rev/Dex, please tell me how you get on.  And just as important — have a great time in Cromer, and enjoy your fresh crab!!

Susie:  Some very useful information regarding PP levels triggering treatment.  I wonder if the value of 50 is uniform across all trusts?  Be nice to think so.

Good luck all,

Peter

Your post says that while you have slightly a increasing paraprotein level, your light chains (LCs) at diagnosis – and now, are very low – effectively zero as you’ve said.  In these circumstances I certainly wouldn’t worry regarding LC effects, and the niceties of the kappa/lambda ratio – which don’t seem to apply in your case.  My s…[Read more]

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]

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]

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]

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]

Peter

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

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

The lambd…[Read more]

The lambd…[Read more]

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]

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

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]

Peter

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]

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]

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]

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]

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]

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…[Read more]

Your quote:–    ” although yesterday’s Christmas festivities were very low key – I ate a lot but only had one small glass of wine. From someone who likes a few at the weekend and during time off it was a bit of a shock. I kept thinking – if I drink will I go backwards, will my kidney levels start dropping again etc etc.”[Read more]