Hello again 007,

Thanks for the post, and the encouraging news. Frankly, I think a lot depends on interpretation of the medical terms. I’m not sure which post I wrote, where I said my old retired GP had both mm and aggressive prostate cancer (cured) and that was ten years ago, and although after several mm treatment cycles — he’s still going…[Read more]

Hi Brian,

I was diagnosed with lambda LC mm exactly a year ago. I’m 67 now, wasn’t in great health and decided sct wasn’t for me. My GP ‘s dad has mm, and my retired GP had both mm and prostate cancer. That was ten yrs ago and he’s still going strong!  There’s lots of mm experience in the practice, and in discussion with them and speaking to the…[Read more]

Hello Kevin,

Well done, brilliant decisions…  The exercise, fresh air and change of sceneries will undoubtedly be of great benefit.

Very best wishes,

Peter

Hello Maureen,

All round there seems to be some good and positive indications for Ian. The fact that he’s painless and his kidneys are ok, I would say are really good signs. And I can only echo what previous messages have said, ie it’s finding the right drug cocktail that suits Ian.

Unfortunately, the latter appears to be trial and error and…[Read more]

Hello again Chris,

i hope this post works. I’m on an iPad, and the first submit failed. If you get two posts, blame Apple. I’m sorry to hear about your unscheduled hospital session, but timing is everything, and yours, with your consultant, is excellent!  I sometimes think the mental effects of such a surprise hospital stay can be worse than the…[Read more]

Hello again MM,

I’ve just read your post regarding your husband. Drops of 89 down to 16 in just 10days seems one heck of a drop in kidney flow percentage in such a short time. And increases in LCs from 49 to 3200 in three weeks equally seem nasty. I know this may appear to be a daft question, but does your husband suffer from any underlying…[Read more]

Hello again Chris,

Well, I have to say that your experience beats mine by a country mile – and I’m glad you came out of it in one piece — literally!  They say MM sometimes affects partners as badly, if not worse than the actual patient — but I cannot imagine the disaster and consequences of losing a wedding ring in such circumstances;  and t…[Read more]

Hi again CT and all,

Thought I might lighten the mood.  Because my consultant thinks I have significant lesions in my back due to LC MM – last night (Thursday), I had a full spinal MRI at a local hospital.  I’ve had many MRIs before – in younger days I played a lot of contact sports – and apart from the odd tooth getting knocked out, and head s…[Read more]

Hello again CT,

Many thanks for your post.  And, believe me, I know EXACTLY what you mean.  I’ve also had numerous (too many to count) free LC blood tests.  CT scans, full skeletal Xrays (until I go a glowing green at night!!), and later today I have another spinal MRI.  My lambda LCs are 117 at the moment.  My consultant is pretty definite rega…[Read more]

Hello Tom, Rebecca, CT:

I’m a little confused regarding the term ‘non-secretory (NS)’.  I have only lambda LC’s, no PP’s and asked my consultant whether this constituted NS-MM?  She replied, ‘No, if you produce excessive LCs – then it’s definitely not NS-MM.’

I obviously need to do more research…!

Peter

Hello Karen,

So sorry to hear about your dad.  Please don’t despair, it may not be as bad as it initially looks.  Do you know what kind of MM your dad has?  Is it PP (paraproteins), lightchains…?

I was diagnosed last year with lightchain MM.  Am in a kinda remission period at the moment.  I had my last cycle of VDT in Feb’ this year.  And I…[Read more]

Hi Rebecca,

Great post to Sue.  Well done!!

Sue:  hope all goes well.

Best wishes,

Peter

Sorry magicM, I should have added…  I personally wouldn’t stress too much regarding a quick sct, especially with the experiences that your husband has had. When I tried to make up my mind some months back whether to undergo an sct (I’m 67 and not been (prior to MM) in great health) , I asked the brilliant medical people on this site regarding…[Read more]

Hello M Moments,

I can better that…  I was diagnosed with MM this time last year.  My LCs were over 11,000 (yes eleven thousand), and after a couple of cycles they dropped to 464 and then down to 6.2 and then 8.2.  This was on VTD treatment.  Unfortunately, they are on the rise again (117) but this is after my last treatment was in Feb 16.…[Read more]

Hello 007 (Les),

For some reason my ipad can’t post to myeloma.uk.  But if you’ve rec’d something like my current post, then I apologise.  I’m on a PC now.

If your question is whether MM is curable, then all the consultant experts I’ve spoken to say ‘No’.  Irrespective of what or how many SCTs one has.  Not at this time, with current med…[Read more]

Hello 007,

Nope, I’ve never heard of it either, but I understand that the U.S don’t give out drug licences willy-nilly, so even without current EU approval, you may be onto a winner. It’s the same old MM story, that individual’s reactions to individual or mixtures of drugs appear to be very different. My consultant told me last week, it’s often a…[Read more]

Hello again Rebecca,

And again, thanks for your post, which I hope you don’t mind me annotating, as below:

I could not/would not devote energy to complaining. I do not have any records from diagnosis as I was in too much shock etc and those records I had I threw away …  in an attempt to not dwell on the past and move forward.

I know exactly…[Read more]

Dear Rebecca,  Wow! what a story!  I don’t understand how labyrinthitis could be confused with MM.  I got labyrinthitis whilst on holiday in Madeira — sick and spinning head in hotel room, and not diagnosed until I got home.  But it’s a disease of the inner ear, and certainly not pleasant.

Do you know what your creatinine level was when your kid…[Read more]

Hello again Rebecca,

thanks again for for your post — which illustrates the fact that no two bodies or their tolerance/sensitivity  to MM are the same.  It seems incredible that with just over 1000 LCs, your kidney flow or efficiency fell to 5%.  I’m not sure what the measurement error is in measuring LCs (there will be some), but even at +/- 20…[Read more]

Hello Rebecca,

Many thanks for your post, and extremely good advice and help.  Yes, the one thing that I’ve learnt, and as the medical community, and you say — “MM is VERY individual”.  So, although it’s difficult to draw comparisons, it’s so useful to have others’ experiences to draw on.  I use these and the feedback from the fantastic nu…[Read more]