So sorry to hear about your husband.  Very sad.  And my condolences also.

Peter

Yes, thank you for your post.  Our local blood test centre has been closed for three months, of all things due to a plumbing problem.  Yes, three months.  I have to have regular, GP initiated blood tests, and I got fed up travelling to the ‘local’ hospital, where two weeks ago, the minimum wait time was 100mins.  It’s terrible if you’re on a fas…[Read more]

Hiya again Rebecca,

I think it would take some proving that any benign mm strain (keeping a more aggressive one at bay) would definitely kind of ‘give-up’ on relapse and be courteous and let the nasty little devils take-over!  Whatever the Beacon says.  It could well be that on relapse (however one defines it – and that’s a whole chapter on its o…[Read more]

Hello again Rebecca,

Sorry to come back so quick, but I’ve only just managed to read your very last post.  And yes, a t(14:16) is a difficult translocation to have, BUT: I’m not a doctor, and speaking to them, that know!  A lot does seem to depend on your initial response to treatment, and length of time before your first relapse.  I can’t re…[Read more]

Hello all,

Thanks Rebecca for your text.  I worked for American and Canadian companies and took advantage of their premium healthcare schemes.  And I can absolutely assure you that they are not the cash cows that you might imagine.  They watch every $ they spend, and if you need, say an ankle MRI as I did, you have to obtain pre-authorisation be…[Read more]

Hi again Hnap,

I went on the myeloma beacon (U.S site as Rebecca recommended in an earlier post) – and copy this from their forum.  It’s another source of information, and because the U.S. has many more new cases of MM, it tends to carry a lot of information, and often, it seems, doctors chip in with their views.

So for what it’s worth, this is…[Read more]

Hello hnap,

I completely understand your dilemma, related to the sct route.  You can read this website and other www’s and be completely confronted by differing stories:  you may hear of people not having an sct and being in remission (or plateauing with ‘constant but reasonably low’ level MM problems) for years.  And you’ll also hear stories of…[Read more]

Hello again Pauls (and Rebecca),

I’m sorry for the formatting gobbledegook that was in my last post. I’m away from home and my laptop at the moment, and am using this ipad, which isn’t suited to posts on this website. So sorry about that. I don’t see a full readout of what I post until after submission and I hope this post is clearer.

Looking at…[Read more]

Hello again Paul’s,

Below is an extract that kind of deals with your questions:

<span style=”background-color: rgba(255, 255, 255, 0);”>”a significant paraprotein relapse is defined as … an increase in the absolute levels of … involved FLC level by more than or equal to 20 mg/dL (plus an abnormal FLC ratio) in 2 consecutive measurements…[Read more]

Hi,

is your LC problem lambda or kappa?  And what are the units set against your measurements? For example mg/litre, or mg/dL?

peter

Hello Hammy,

I had a full eight cycles of VTD (although I had to stop the thalidomide since it gave me high temps and palpitations at night). The treatment lasted July ’15 to Feb ’16.   I had no sickness, but terrible fatigue and shivers. And generally felt shaky and weak.

Unfortunately, I had a residual after effect of a bad tummy (had to hang…[Read more]

Hello Cheryl,

Not sure I can help much, but when I was diagnosed 12 months ago, I had both bone and kidney biopsies, a full skeletal xray and I think an MRI on the spine, but according to the hospital records, I never had the latter!

Last month I had another full skeletal xray and an MRI on the spine.  At my consultant mtg a couple of weeks…[Read more]

Hello Andy,

That’s great if they show up lesions. I’ve had mri’s for that…  I don’t suppose you know which scan gives the most detail.

Thanks for your post, and best regards,

peter

Hiya Brian,

http://www.myelomabeacon.com/news/2016/05/27/myeloma-morning-early-relapse-survival-ninlaro-kyprolis-europe/

Hope you find it useful.

Pete

Hello again Brian,

I read that the world famous Mayo Clinic (U.S) completed a study of 511 non-sct patients, and 723 sct patients from 2006 to 2014.

Their findings look pretty optimistic!

If you get a second treatment started (at first relapse for non sct patients) more than a year since you were diagnosed, then the average period of this first…[Read more]

Good morning Annette,

Thanks for your post, and yes I have randomly come across myeloma beacon in the past, but will now look again with much added interest.

Many thanks again, and very best wishes to you and your incredible recovery.

Peter

Hello again Annette,

And happy birthday for yesterday. And thank you for your latest post…

I’m no medical expert, for I think what you said is pretty near the mark. MM is so individual, and one of the things that define us is our gene make-up, and the things that can go wrong in this area, like additions, deletions and translocations. Early on…[Read more]

Hello Annette,

That is brilliant. Absolutely brilliant to have done so well. Again, it’s a very impudent question to ask a lady, but I’m 67, and could I ask if you are much younger??

Also, was your success following one or more scts?  And did you have cycle breaks between ongoing treatments, or is it just continuous maintenance doses?

I reckon…[Read more]

Hello again Maureen,

Thanks for your reply. One would think that a crucial bit of data regarding the LC level at which treatment re-starts would be carved in stone, in some NICE www backwater!! But evidently not. Leaving this to individual consultants is probably due to the other problems with mm, like calcium, anaemia and bones. Again it’s the…[Read more]