Hello Helen,

Good to hear from you again.  Sorry to hear your LCs increased again after you stopped the VTD treatment.  It appears that this is quite a common occurrence, as well as some patients initially breaking records for LC reductions.  I guess I’m fortunate that I’m in the latter category, but it’s clear that there’s not a lot of co…[Read more]

Hello again Annette,

Thanks for your post – and well done on your great response to treatment — especially after  the sct being declined by your doctors.  In fact speaking to consultants and oncology nurses at my hospital, there are so many new treatments in the pipeline (months, not years away), that may seriously compete with the rigours of s…[Read more]

Hello Jeffery and Annette,

Thank you both for your posts — I’ve been away in Dorset for a very stormy 10 days, without broadband, so haven’t been on myeloma.uk.

Jeffery:  I can’t really comment on your operation, but I’m on dex and Velcade (once a week now, on a Tuesday, cycle 6).  And all I can say is that initially, I underestimated the e…[Read more]

Dear Helen,

Thank you for your prompt post.

Believe me – you are not alone…  Trying to manage myeloma is trying to play chess in a fog and not even being sure of the rules.

I reckon the vast majority of myeloma patients experience your thoughts exactly.  I know I do.  I definitely do – frequently (and so does my wife!).

It’s been great ta…[Read more]

Hi Helen,

I know I tend to look at trends/statistics/data, to try and work out/agree the possibilities for future treatments and side effects for me (personally).  It’s also the hospital environment that I’m in.

But I would definitely caution against widespread use of the web for information.  I’ve found that some sites are irresponsible, s…[Read more]

Hi Jill,

Thank you for posting such a comprehensive reply regarding your Mum – who I consider to be a brilliant example of treatment and response, and at 86 years, a great record – and long may it continue, and my very best wishes to her.

I believe the strength of this particular www is that personal accounts (like your Mum’s), can ‘colour’ …[Read more]

Dear Helen and David,

Thank you for your posts.  As you clearly point out Helen, the problem with Myeloma is that it is very individual, so drawing conclusions is difficult.

The only way around this is to look at bulk evidential data, over a period of time, and realise, that with a good degree of confidence, one’s particular circumstances sits…[Read more]

Hello again Helen,

I’ve now had time to look more closely at the slides from the Birmingham Info day, and on the ‘Initial Treatment’ section that you suggested.

As you say, without being there, it’s much more difficult to understand what the slides are trying to show, but slide 14 (Role of Auto’ Transplantation) was a bit scary to me when I read…[Read more]

Dear David,

Yes, that is a brilliant response, and you tick all the boxes!

Sorry, I didn’t realise from your earlier post that you also had one, or more, bone biopsies to detect the myeloma cells in your bone marrow, in addition to the usual PP/LC blood tests.

Well done on a great result, and best wishes for your forthcoming…[Read more]

Dear Helen and Dave,

Thank you for your posts.

Dave:  you said your consultant told you,  “you were in full remission with “normal” light chains and zero paraproteins”.  This to me at least seems a very practical and sensible statement to make, since you have no PP’s and your light chains are within spec.

My confusion arises (and it’s probabl…[Read more]

Hi Jillx,

thanks for your post.  I’m sure you’re right in what you say.

Funnily enough, I saw my oncology nurse yesterday for a chemo injection and asked her if the light chains fell to within the normal limits (max value about 26 for the lambda LC), whether it qualifies for a ‘remission’.  She said it would be up to the consultant, but added -…[Read more]

Hi again Helen,

Thanks for the information.  And the advice re: ‘individual responses’, which I completely accept, and I’ll use it ‘sparingly’.

Many thanks again, and best wishes for the future,

Peter

Hello Helen,

Thanks so much for your post.   And I’m glad that my understanding closely reflects yours – that gives me confidence that I’m on the right lines at least.

I’ll get hold of page 38 of the guide (HDT/SCT), and see what it says.

You said that after the initial 5 month treatment (VDT), your Lambda LCs dropped to 291 – that’s…[Read more]

Hello again Andrew,

Absolutely brilliant that you’re so active between the harvest and the second stage of the SCT.  Also the estimated timetable (which pretty much agrees with Annlynn’s earlier post).  Can I ask how much remission you got the first time?  And was this after your first SCT, or didn’t you have one?

Nearer the time I certainly wi…[Read more]

Hello Annlynn,

Thanks for your post.  17 days is not too bad.  And it sounds as though you almost had a ‘fun time’ ha ha.  But I take your point regarding the value of the SCT – I can see I’ve got some thinking to do.  It’s just whether my general state of health and age (66) will cope okay.

Thanks again,

Peter

Hi again Sandra,

I’m going to have to change my laptop!  I was about to post a detailed reply to you and lost the lot.  Very annoyed, so if a very similar post from me pops up somewhere else – I apologise.

Speaking as a complete medical layman, what I understand from the various doctors is that MM’s light chains (LCs) are bits of para proteins (…[Read more]

Hi Andrew,

Thanks so much for your post – and all you say makes a lot of sense to me.  Do you know how long you’ll be in hospital (do you get a break between harvest and the full works?) for the whole thing?   Has your consultant(s) estimated your likely remission time after your successful SCT?

Peter

Hello again Maureen,

Thanks for your post.  I also have the lambda variety of FLCs.  And they’ve dropped from a massive number down (in their thousands) to just 6 !  (with Velcade, steroids and thalidomide).

One of the problems regarding SCT, for me, is that it will be in a large London Hospital (which is in special measures), very difficult to…[Read more]