[angieevangelou]

Am I smoldering or MGUS still?

by angieevangelou on Thu Oct 30, 2014 8:08 am

Hi,

I was diagnosed with MGUS in 2011 whilst being tested for MS (which I have). I am seen every 2 months (in a myeloma clinic) by hematology now since having a blood clot in my brachial artery earlier this year.

I am increasingly concerned that because I see different registrars every appointment and rarely a consultant that I am not really given good information on my blood abnormalities. I've read that blood clots and high platelet levels can be connected to MGUS, but nobody at the clinic has ever told me that. I have been tested for some blood clotting issues but I din't know what.

I'm IgA only, low level m-spike of 6 g/L [0.6g/dL] (was 3 g/L three years ago at diagnosis), my SFLC are around 74 at last blood test a few weeks ago and have gone down from 86 in August. The registrar I saw at my latest appointment when I queried why SFLC wasn't written on blood request form said that she wasn't doing SFLC test on blood request for next appointment as my SFLC are stable and the test is expensive at £300.

My SFLC are always tested at every appointment and I was wondering if it's normal to not test for them if they are 'stable'?

I have had a BMB three years ago which I was never given results of, just told it was 'fine.' When i asked again at my recent appointment, the doc looked it up on computer and said it was fine.

I have had anemia now for several months and am on iron tablets. It's taken 3 months for my hb levels to rise and I'm still anaemic, but the doc said it's probably not myeloma related.

My skeletal survey of 3 years ago showed a single lytic lesion on my skull, which has not been tested further, and when I have asked, the docs have said that is why they are keeping a close eye on me.

I just get really concerned that they are just following the watch and wait system and that I may actually have smoldering myeloma, but they don't feel it necessary to tell me that. I've read about the new guidelines from IMWG and am hoping that I may start to get better information on my condition.

I have bone pain in various places which the latest doc said was probably due to me falling down the stairs recently but some of the pain was there before that. I may have damaged my shoulder, ribs and hip with the fall and am still in pain two weeks later.

I realize there are a lot of questions on this post, but I feel I am really alone trying to co-ordinate my own medical care and don't have any doctors that can take the time to explain it all.

I however will try to e-mail my consultant at the clinic (who I rarely see) and check whether my free light chains should be checked at my next appointment.

Sorry for the long badly written post but I have MS too and am not concentrating well today.

[Multibilly]

Re: Am I smoldering or MGUS still?

by Multibilly on Thu Oct 30, 2014 9:19 am

Hi Angieevangelou,

I realize you are worried and we've all been there from time to time.

Are you looking for some additional advice beyond what folks suggested earlier?

https://myelomabeacon.org/forum/post22458.html#p22458

From your earlier post, it looks like your SFLC number of "74" means your lambda free light chain is 74 mg/L. On the above thread, your earlier kappa/lambda ratio was 0.14 (which = an involved/uninvolved SFLC ratio of 7, which is fairly low and is a good thing). Your current M-spike is also fairly low at 0.6 g/dL.

But if you do have a lytic lesion on your skull and you now have this additional pain, it really seems like you should be pushing for a PET/CT or at least an updated skeletal xray survey (which is what we were trying to suggest earlier). And I would still be pushing to get a copy of the bone marrow biopsy results so that you might better understand the details in it. I assume that folks in the UK have a legal right to their own medical records?

[angieevangelou]

Re: Am I smoldering or MGUS still?

by angieevangelou on Thu Oct 30, 2014 9:48 am

Hi Multibilly

Yes was wondering especially if its normal to not test for free light chains if yours are deemed 'stable.' I feel very alone with all this. In the UK, the doctors seem to be not as concerned by MGUS / smoldering multiple myeloma as in the USA.

Thank you for your reply. I hope you don't think I ignored your previous advice. I've tried to get more info as it is our right to have it in the UK, but will have to go through more lengthy complaining to hospital to get it!

Angelina

[Multibilly]

Re: Am I smoldering or MGUS still?

by Multibilly on Thu Oct 30, 2014 10:13 am

As I understand it, you are already seeing a hematologist every 2 months. Unless your M-spike was really starting to rise (or other markers like your calcium, hemoglobin or creatinine were starting to deteriorate), I could see how they may not feel compelled to do a SFLC assay that frequently. If you have MGUS, then getting an SFLC assay done twice a year ought to be sufficient. Some might even say once a year would be OK, provided your disease was quite stable.

[angieevangelou]

Re: Am I smoldering or MGUS still?

by angieevangelou on Fri Oct 31, 2014 8:53 am

Thanks Multibilly. That makes me feel better. Not going to worry about FLCs for the moment .