[Sumas]

Denying a problem or reality?

by Sumas on Fri Oct 16, 2015 8:39 pm

I was diagnosed with MGUS three years ago. Have been getting 6 monthly blood tests and been reviewed by a haematogist twice. He tells me all is ok, that my results are fine, and I do not need to do anything.

I have a IgA (lambda) reading of 20 g/l (2000 mg/dL). And lambda free light chains of 48.3.

Although worrying, I'm simply getting on with life.

Or should I be worried?

[Cheryl G]

Re: Denying a problem or reality?

by Cheryl G on Fri Oct 16, 2015 9:50 pm

Hi Helen,

Welcome to the forum.

With MGUS and smoldering multiple myeloma, it's helpful to focus more on the trends in your lab results, rather than the results at any specific time. This is basically what your doctor is doing, and I'm sure it's the reason he's telling you not to worry about your results.

Have you seen much change in your IgA level and your lambda free light chains over the past couple of years? Or are they basically staying steady?

Also, with the free light chain results, it's helpful not just to track the one that is elevated (that's lambda in your case), but also the ratio of the two free light chain levels. Usually this is reported as the kappa/lambda ratio in your lab results. Has this changed much over time?

There are many here who can answer further questions you may have and offer guidance and support. Just let us know how we can be of help.

Take care,
Cheryl

[JPC]

Re: Denying a problem or reality?

by JPC on Sat Oct 17, 2015 4:11 pm

Hello Helen:

I will offer you the following thoughts, further to Cheryl's comments.

Your hematologist tracking your blood work for MGUS every 6 months is prudent and a very standard approach, and based on what your wrote, there is absolutely no reason to second guess that approach. However ... over time, there has been somewhat of a change in philosophy, in that if you have multiple myeloma (or the precursor conditions), it is felt that it is better to get a specialist in multiple myeloma who deals exclusively with multiple myeloma.

You should ask yourself the following couple of questions. Is your doctor a general hematologist? What percentage of his practice is dealing with multiple myeloma and closely related issues??

If you are close to a major metropolitan area, you probably have access to a specialist. Probably not so much in the more remote areas.

Wait and watch has been the standard approach for MGUS and smoldering multiple myeloma. However, at the present time there are new progression standards, and more clinical trials that are looking at nipping the condition in the bud before it becomes active. Some people in rural areas put together a team, where they see the general hematologist regularly, and the myeloma specialist once a year. Although your doctor's approach is fine from a historical perspective, there is new thinking in this area.

Good luck to you.

Regards, JPC

[Sumas]

Re: Denying a problem or reality?

by Sumas on Sat Oct 17, 2015 11:03 pm

Thanks for your replies, very helpful.

My IgA reading has risen from around 14 to 20 + - over each recent result. I know that is not super high and I assume that's relatively stable, that's what the haematologist says.

My free chain ratio is now 0.14 but I haven't seen the results of this previously, so I have no idea how / if it's changed.

My worry was brought about by lower neutrophil levels and subsequent repeated illness / infections, but is this MGUS related ?

I haven't enquired if my haematologist is a myeloma specialist, but will do - great suggestion.

The doctor asks me if I have symptoms, but I had no idea what symptoms may be attributable to this condition and which are simply my body aging; aches, pains and old sporting injuries. I am not a hypochondriac and don't want to turn into one. I remain very active and want to stay this way, so would be really interested in any trial to nip it in the bud.

Thanks so much