[AliceNorth]

Re: How long for relapse to show in routine blood tests?

by AliceNorth on Tue Sep 16, 2014 12:21 pm

Hi

So today I finally received my paraprotein results and, again, it's a trace reading - IgA lambda on immunofixation, the same as it was 8 weeks ago. I also saw my local oncologist today who wasn't overly concerned at the moment because my light chains are normal and so is my IgA level at 1.4 g/l (normal range is 0.8-4). All other bloods are normal too.

So, it would appear that it's still a waiting game. On the one hand, I'm disappointed that the trace reading from 8 weeks ago is more than transient, but I guess I have to be positive in that it doesn't appear to have done too much in 2 months.

[AliceNorth]

Re: How long for relapse to show in routine blood tests?

by AliceNorth on Mon Nov 10, 2014 12:54 pm

Hi everyone

Just an update. After a further 2 months, things remain pretty much the same - very normal light chains with a trace of IgA lambda on IFE. Consultant happy to continue monitoring.

One question I have and wonder if anyone would know this. When I had my original BMB nearly 4 years ago and was diagnosed with AL amyloidosis and myeloma, would there have been something showing in the plasma cells that would indicate myeloma rather than just amyloidosis? I ask in light of the publication of the IMWG guidelines.

On the face of it, according to CRAB and the new MDEs, I don't have myeloma. What I did have on diagnosis was 20-30% plasma cells. No cytogenetic testing was carried out for new patients at that time.

Thanks
Alice

[AliceNorth]

Re: How long for relapse to show in routine blood tests?

by AliceNorth on Mon Nov 10, 2014 2:35 pm

I think what I'm trying to say is, would it have simply been the % of plasma cells that would have made my original diagnosis one of myeloma, rather than just AL amyloidosis, or is it something in the plasma cells that makes the distinction?

[lys2012]

Re: How long for relapse to show in routine blood tests?

by lys2012 on Tue Nov 11, 2014 12:00 pm

Hi Alice,

I've read through the recent postings and responses about the the change in guidelines. I believe the difference between an AL amyloidosis and multiple myeloma diagnosis is not in the bone marrow; rather, it is based on "end organ damage" from the myeloma — so not just your bone marrow #s but your other CRAB symptoms at diagnosis.

A quick update on me (I posted earlier in this thread) ... My M-spike is now 4.7 g/L (0.47 g/dL), so definitely relapsing, but based on my numbers at diagnosis we will continue watch and wait since I am still over 90% drop (M-spike was 98 g/l at diagnosis). I go back in December for my follow up.

[AliceNorth]

Re: How long for relapse to show in routine blood tests?

by AliceNorth on Wed Nov 12, 2014 10:31 am

Hi Lys

Thanks for replying. It must be worrying for you that you might be relapsing, but if you are, it does at least look like it's a slow one which will give you and your doctors time to consider your next options.

Although my paraprotein has been just a trace reading since July, I am concerned that my IgA level is slowly rising by a small amount with each test (I am IgA lambda). For example, in September, it was 1.4 g/l (normal range 0.8-4), but previously, it has been increasing slowly over the last 3 years from end of treatment from 0.8. This time, it has increased to 1.6 g/l. When I pointed this out to my consultant, he simply shrugged and said it was normal and the upper limit is 4 g/l.

Having said that, though, my IgG has also been rising at a similar pace. On diagnosis, it was very low at around 0.9 g/l mainly due to the nephrotic syndrome I was experiencing. It is now at 7.5 g/l (normal range 5.3-16.5).

We just have to continue playing the waiting game.