[Eugenia]

Concerns about "Watch and Wait"

by Eugenia on Mon Oct 20, 2014 5:11 pm

A year and a half ago, a neurologist noted an "M-Spike" in my blood work and referred me to a hematologist. He gave me the name of one and I made my appointment. Little did I know a hematologist would be located in a CANCER center!

At Cancer Center of North Carolina, the doctor ran more blood work (to confirm numbers) and the 24-hour urine test, and had me come back in 3 months. When I came back he ran the same blood work again and did a quick exam (lymph nodes, heartbeat, etc.) and said I could wait a year or come back in 6 months, since there was little change in my numbers.

I opted for 6 months – a year seems a long time. At that appointment (6 months later), he recommended just yearly visits. Since that appointment, I have had a period of elevated liver enzymes, and a spot on my spine that I told him hurt some has been hurting more ... and more. My GP wondered if I'd had hepatitis C, but did not test for it; just continued to test my liver numbers a few more times until they mysteriously dropped back into the upper end of the normal range.

So, my question is ...

Is the blood work alone enough to make the determination that yearly tests are enough? What will determine when I need another 24-hour urine test, or when/if I should have a BMB, or any of the other tests I have read about in forum discussions?

[Dr. James Hoffman]

Re: Concerns about "Watch and Wait"

by Dr. James Hoffman on Mon Oct 20, 2014 5:35 pm

These are good questions. Whereas in many cases, bone marrow biopsies are done to fully evaluate a monoclonal gammopathy, there are cases where such is not necessary. Specifically, in patients with a IgG protein, with an M-spike <1.5 g/dL (15 g/L) and normal free light chains (and no signs of organ damage – e.g. anemia, kidney insufficiency, bone lesions), patients can be monitored without biopsy.

For any significant rise in the abnormal protein – or any clinical concern for symptomatic disease – further testing, including a bone marrow biopsy, is needed. Without those developments, blood work alone every 6-12 months is often recommended (generally without the need for repeat 24-hour urine collection).

It is hard to be more precise in your case without more details, but I hope this is helpful.

[Multibilly]

Re: Concerns about "Watch and Wait"

by Multibilly on Mon Oct 20, 2014 5:48 pm

Hi Eugenia,

Welcome to the forum.

First, are you seeing a hematologist who specializes in multiple myeloma? Just because your doc is located in a cancer center doesn't necessarily mean that he/she lives and breathes multiple myeloma on a daily basis and is considered a multiple myeloma specialist. There are a lot of nuances to this disease and there is no substitute for working with a doc that specializes in multiple myeloma.

The really key lab numbers that one generally looks at when monitoring MGUS are:

• Serum M-spike
• Serum Free light chain values (lambda and kappa) and their ratio
• The involved serum immunoglobulin level (IgG, IgA, etc)....the one that is elevated.
• Calcium
• Creatinine
• Hemoglobin

Unless the first three numbers above are fairly close to normal (as Dr. Hoffman points out above) and the last three are normal (the last three can indicate possible end organ damage, in not normal), one would usually also get a full body xray (skeletal survey) and a BMB to confirm the initial MGUS diagnosis, if only to have a baseline at your initial diagnosis.

If you are diagnosed as having MGUS based on all these tests, you likely wouldn't repeat the xray and BMB unless your above lab numbers changed fairly significantly.

If you post your numbers for the above tests, folks can likely better comment on your situation (please include the units of measure).

Some folks may opt to just get tested yearly if they have a mild, stable form of MGUS. I think I might personally opt for getting tested every 6 months for the first 2-3 visits, if only to put my mind at ease.

Note that this is mostly my opinion and I'm not a doc. But I hope this helps a bit.

[Eugenia]

Re: Concerns about "Watch and Wait"

by Eugenia on Mon Oct 20, 2014 6:19 pm

Am I seeing a specialist? I'm not sure I know the answer to that question. First of all, he was at Cancer Center of North Carolina, which has now closed and the doctors have been dispersed amongst area hospitals with cancer centers. In the biographies of the groups' doctors, their areas of interest or specialty are listed.

I know he treated a friend's mother for lymphoma and non-Hodgkin leukemia, so multiple myeloma is not the only cancer he treats.

[Multibilly]

Re: Concerns about "Watch and Wait"

by Multibilly on Mon Oct 20, 2014 6:37 pm

Defining what makes someone a multiple myeloma specialist can be a little hazy. I would personally classify a multiple myeloma specialist as a hematologist who participates in multiple myeloma clinical trials, publishes in the field of multiple myeloma and/or speaks on the subject at major hematological conferences such as ASH, etc, and personally sees dozens of multiple myeloma patients every year. I don't necessarily think they have to be at a major multiple myeloma center that does transplants like UAMS or the Mayo Clinic. But that's just me.

Note that the Beacon lists the following center in North Carolina. Note that Dr. Voorhees, who regularly posts on this forum and is much appreciated by all of us here, practices and teaches there.

https://myelomabeacon.org/resources/treatment-centers/

UNC Lineberger Comprehensive Cancer Center

School of Medicine
University of North Carolina at Chapel Hill
101 Manning Drive
Chapel Hill, NC 27514

866-869-1856 – Main / Appointments, General
919-966-7782 – Appointments, Multiple Myeloma Specific

General Website:
http://cancer.med.unc.edu

Myeloma Multiple-Specific Website:
http://unclineberger.org/patientcare/programs/myeloma

[Eugenia]

Re: Concerns about "Watch and Wait"

by Eugenia on Tue Oct 21, 2014 1:25 pm

In that case, I'm still not sure that my local hem/onc would be considered a specialist. However, I am due for a check-up and I will try to get one with Dr. Voorhees in Chapel Hill as well as my local.

My free light chain numbers were taken in January 2013, and were normal. My IgG number has risen a little each time. Are the free light chain numbers taken from blood, or from urine? Is that something that they will keep testing?

These are numbers from first test and then subsequent tests, if measured:

Serum M-spike 0.1 g/dL

Serum Free light chain values - only taken once:

Lambda 13.33 mg/dL
Kappa 8.46 mg/dL
Ratio 0.63

The involved serum immunoglobulin level (IgG protein with lambda light
chain specificity) - taken 3 times over the past 2 years:

IgG 663 to 678 to 681
IgA 151 to 164 to 185
IgM 283 to 170 to 298

Calcium, serum: ranged from 9 to 10.3 - avg of 8 tests = 9.6
Creatinine, serum: ranged from 0.67 to 1.10 - avg of 7 tests = 0.89
Creatinine, urine: 0.7
DUAP Hemoglobin : 14 to 14.4 to 14.5 to 14.3
Hemoglobin A1C: 5.5

[Dr. James Hoffman]

Re: Concerns about "Watch and Wait"

by Dr. James Hoffman on Tue Oct 21, 2014 2:02 pm

This is a very low level monoclonal gammopathy. The change in the total IgG is not mean­ing­ful. In my opinion, it is ok to defer bone marrow biopsy and watch labs (not urine, only blood), every 6-12 months. But again, for formal recommendations, you need to be guided by your doctor.