[MrsM]

Newly diagnosed with MGUS, worried about what's next

by MrsM on Thu Jun 30, 2016 11:50 pm

Hi Everybody,

My name is Marcia I was diagnosed last May with MGUS at 39 years old. I went in for my annual physical and everything was fine except I had anemia again. This was ongoing for me, so I wasn't surprised, but my family physician referred me to a hematologist and after several tests and a colonoscopy to check for bleeding.

I did have some bleeding in my colon, by the way, and it was fixed and my iron level went up, but I continue to be borderline anemic.

Then I was told I have MGUS after finding a paraprotein in my blood only. Nothing in my urine. I had no M-spike at the time. So far I have had my free light chains measured 3 times since May 2015 and I never had an M-spike until last week.

I was told not to worry because I'm still fine even though I now have an M-spike of 0.4 g/dL (4 g/l). I know that's a very low M-spike, but it still concerns me because back in September I did not have an M-spike.

I'm still tying to figure everything out and wonder what's next for me. I just wonder what's going to happen since I have the M-spike now.

I forgot to mention my free light chain value is slightly out of range as well. Here are my part of my latest labs from June 23, 2016:

K/L Free Light Chains w/ Ratio

Free Kappa Light Chain: 35.83 High
Free Lambda Light Chain: 14.75 mg/L
K/L FLC Ratio: 2.429 High

Here are my labs from September 2015:

K/L Free Light Chains w/ Ratio

Free Kappa Light Chain: 26.46 High
Free Lambda Light Chain: 11.35 mg/L
K/L FLC Ratio: 2.331 High

As you can see it went up

[Multibilly]

Re: Newly diagnosed with MGUS, worried about what's next

by Multibilly on Fri Jul 01, 2016 8:40 am

Marcia,

Welcome to the forum.

I realize you are anxious about this diagnosis. But keep in mind that you do indeed have a very small M-spike. Also, your involved free light chain (FLC) number – the kappa number in your case – actually went down on your most recent test. So, the reason your FLC ratio increased is because your lambda dropped. Also, serum FLC numbers tend to vary quite a bit from day to day, and you could have had those kinds of changes if you simply had your free light chain levels measured on two consecutive days.

Most importantly, the chance of MGUS progressing to multiple myeloma is only about 1.5 - 2% per year. The majority of people with MGUS go through life without ever knowing that they have it and are never any the worse for it.

[faithoverfear]

Re: Newly diagnosed with MGUS, worried about what's next

by faithoverfear on Fri Jul 01, 2016 1:03 pm

You're worried, about lots of stuff, including what's next. Worry is a natural emotion that en­courages us to take action. Emotions cannot be denied; they need to be accepted and dealt with.

You might want a plan of action, ready in case needed. Better to be prepared than to be sorry.

A good social worker can help you deal with anxiety. It was very worthwhile (worth the time) to me.

If it hasn't already happened, you will hear horror stories. Remember, that does not mean it will happen to you. Everyone's story is different.

Best wishes.

[MrsM]

Re: Newly diagnosed with MGUS, worried about what's next

by MrsM on Sun Jul 03, 2016 8:30 am

Multibilly,

Are you sure? My kappa went up since September, not down. My kappa went from 26.46 to 35.83 from September 2015 to June 2016.

I know I was told the chance is very small for progression but isn't it different for everybody? I'm 40 years old. I'm trying not to worry, but its hard not to when you have 2 small children who will not be adults anytime soon. I could very well have active myeloma before my children are old enough to take care of themselves if my numbers keep going up and not down.

[MrsM]

Re: Newly diagnosed with MGUS, worried about what's next

by MrsM on Sun Jul 03, 2016 8:34 am

faithoverfear,

Yes, I'm worried. Bones all over my body began to pop and ache earlier this year out of nowhere, and the first thing I thought was: Is it getting worse?

[Nancy Shamanna]

Re: Newly diagnosed with MGUS, worried about what's next

by Nancy Shamanna on Sun Jul 03, 2016 9:42 am

Hello Mrs. M,

I am sorry to hear that you are having to cope with MGUS, and that you have had anemia and serum free light chain results that are out of normal ranges. I think that must be very nerve wracking, but will you be tested frequently to monitor any changes? Also, are you seeing a myeloma specialist, who could help you to sort this out? If you could mention where you live, other forum readers may be able to recommend a good clinic to attend.

Best wishes.

[faithoverfear]

Re: Newly diagnosed with MGUS, worried about what's next

by faithoverfear on Sun Jul 03, 2016 11:32 am

MrsM,

There is a commentary by Dr. Ola Landgren, He is a well know expert in the field.
You may find some good perspective. It's a bit old... but will give you a place to start.
Much better than drifting in the fog that comes with anxiety.

Landgren, O., "Smoldering Myeloma: What Do The Latest Research Findings Mean? A Discussion With Dr. Ola Landgren," The Myeloma Beacon, January 13, 2012

Hope this helps.

[Donnie]

Re: Newly diagnosed with MGUS, worried about what's next

by Donnie on Mon Jul 04, 2016 5:46 pm

Marcia,

I'm new to the forum, as of yesterday. I was diagnosed with multiple myeloma last fall. I have been through chemo and a stem cell transplant. Those went well. I'm about to start main­te­nance ther­apy; it remains to be seen how that goes. I have stayed optimistic.

What I want to say is this: The comments I have received from all of my doctors, and from other patients I have met, have been positive. They stress that there are many tools for fighting this, and that new treatments are coming online rapidly, faster than for almost any other type of cancer. At any rate, that's what I understood them to say. And so, I am optimistic that I can survive this for a good many years. I'm going on 62. Maybe I will live till 80 years of age after all!? It could happen. I will stay optimistic until given reason not to. I hope that's encouraging.

Best wishes.