[KS1960]

MGUS etc - things I did not want to know about

by KS1960 on Sat Jan 31, 2015 8:11 am

Not on my list of 2015 topics to learn more about, but it looks like I'll be spending the weekend reading this site. It's very helpful, and I am freaking out pretty badly. I trust my hematologist completely, but clearly had some kind of deer-in-the-headlight reaction during the office visit.

My husband (67) has had weight loss and declining hemoglobin levels for the last year. As a gastric bypass patient (10+ years, stable weight), he has full blood panels done every year. This year, his hemoglobin dropped from 12.5 to 10, and he went to the hematologist. I expected to hear he had an ulcer causing a slow gastro-related blood loss, and was stunned yesterday to hear the doctor talk about MGUS and a monoclonal protein level of 1.5 g/dL (15 g/L), and his recom­men­dation to do the 24-hour urine, another blood panel, and a bone marrow biopsy (scheduled for next week).

And so, yeah - now I am looking at everything with a new eye. Like, the rib pain which we chalked up to an awkward position on a therapy table (he gets physical therapy for a shoulder injury - which is also now suspect). And the rise in his protein blood serum levels (from 6.5 to 8 - we thought that was a good thing). And the rise in his creatinine from a steady .8 to 1.04.

I know it could be worse, but I suspect you guys know what I mean.

[Multibilly]

Re: MGUS etc - things I did not want to know about

by Multibilly on Sat Jan 31, 2015 9:31 am

Hi Kate,

Sorry to see you and your hubby having to join this club. But, welcome nonetheless!

It's just not that easy to deal with the thoughts that one has in the first month or two after you learn you have some stage of this disease. One's mind easily jumps to worst-case scenarios and thoughts of one's mortality. And I really don't think there is an easy way to get around those initial thoughts other than to just work through them. BUT, as you take the time to wrap your head around this disease, and you really start to understand the disease and the treatments that are available, things do get much, much better.

Be thankful that you caught this at what seems to be a relatively early stage. The best thing you can be doing is to seek out a top myeloma specialist. There is a big difference between an oncologist / hematologist who sees a handful of multiple myeloma patients, and one who lives and breathes this disease and is fully aware of all the cutting edge research associated with multiple myeloma. If you let us know where you live, folks on this forum can make some recommendations as to where you might look for the best multiple myeloma docs.

Note that an M-spike (monoclonal protein level) of 1.5 g/dL is not that big of an M-spike, so I would also take comfort in that fact. The bone marrow biopsy will provide some more key clues as to what is going on. Your doctor should also be talking about doing some imaging to look for any bone issues (the newer imaging recommendations suggest PET/CT or MRI). This link outlines all the tests that ought to be discussed with your doc:

http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf

Don't be bashful in asking questions, and I wish you and your hubby all the best on this journey.