[hydengr]

Yet another member of this oh-so-complicated community

by hydengr on Tue Jun 24, 2014 6:52 am

Greetings,

About 10 years ago (age 43) I began to have regular physicals every 2 years which included blood work. My calcium was always a little high (10.1-10.3) and my hemoglobin was always a little low (12.8-13.8). A physical in 2011 revealed a calcium level of 10.5. My doctor said that it was nothing to worry about. During my most recent physical in June of 2013, my calcium was 11.0, hemoglobin 12.8. I waited 10 days and had my calcium retested. It came in at 10.7. Off to an endocrinologist to have some more tests and to discuss the possibility of parathyroid (P-T) surgery to try to get my calcium closer to the norm. There’s some family history of osteo­po­ro­sis and I didn’t want to head down that road …

Nuclear imaging (MRI) revealed that I did have at least 1 of my 4 P-T glands acting up. How­ever, additional blood work and a 24-hr urine test revealed protein levels in my blood. ab­normal protein band-1 1.0 g/dl; abnormal protein band-2 0.2 g/dl. In addition, my beta globulins were high at 2.0 g/dl. The notation at the bottom of my protein electrophoresis was “Two abnormal protein bands are detected, one in the gamma globulins and one in the beta globulins, that may represent monoclonal immunoglobulins and/or light chains”. Endo­crin­ol­ogist then sent me to an oncologist/hematologist…

From there, more tests … Ultrasound of the kidneys (clear), MRIs of the back and pelvis (lots of Schmorl’s nodules and some anterior wedging attributed to Scheuermann’s disease, some arthritis – no myelomatous or neoplastic involvement), bone density scan (mild osteopenia) and x-rays head to toe (no focal osteolytic or osteoblastic lesions) . Next on the list was the bone biopsy which revealed my abnormal plasma at 5-8%.

In January I decided to go and have the P-T surgery in hopes that it would bring my calcium levels down and I’d be able to cross that statistic off of my list of myeloma-related symptoms. Unfortunately, that wasn’t the case. Ended up that all 4 of my P-T glands were abnormal so they removed 3.5 of them, leaving just a “chunk” of one. Unfortunately, my calcium post op is still high around 10.1.

My onc has me classified as MGUS borderline smoldering myeloma. I’ve recently (after the P-T surgery) been experiencing some peripheral nerve issues, numbness of the legs and tingling of the hands, but this seems to come and go. I’m scheduled to see a neurologist here in a few days.

I feel pretty good other than the worries that every time I feel an ache or pain or feel a little tired, I question whether it’s multiple myeloma related or just “old age”. I exercise 6x a week and I am in better shape now than I was 10 years ago. My routine at the gym is fairly intense. Folks often ask if I’m training for a specific event.

Headed for a second opinion in about a month. Somewhat concerned that they will classify me as needing to begin “treatment”. I’ll know around the middle of July. Again, although some of my numbers are worrisome, I feel good and have lived with high calcium, slight anemia, and sporadic back pain for over 10+ years…

This forum is a great resource. Thanks for your time, your comments are welcomed.

Mark

[Cheryl G]

Re: Yet another member of this oh-so-complicated community

by Cheryl G on Tue Jun 24, 2014 7:36 am

Thanks for introducing yourself Mark, and welcome to the forum.

If you haven't done so already, you should probably arrange to have free light chain testing done, and you also should start familiarizing yourself with the concept of "chromosomal abnormalities". (The abnormal plasma cells found in your bone marrow may have certain chromosomal abnormalities.)

Also, check your MRI reports to see if there is any mention of "focal lesions" in the bone marrow, or any other unusual characteristics of the bone marrow.

I mention all these things because things like free light chain levels, free light chain ratios, chromosomal abnormalities, and focal lesions found via MRI are some of the factors that have been identified as being relevant to how likely someone with MGUS or smoldering myeloma is to progress to symptomatic myeloma.

Finally, although it seems like you've had great medical care thus far, if you haven't already been seen by someone who really focuses on multiple myeloma and related conditions, such as amyloidosis and Waldenstroms, then you might want to consider organizing a consult. This will make sure someone with a lot of relevant experience has a chance to look over your lab results to determine if any further testing is necessary, and if the diagnoses you've received so far make sense.

Here's to hoping that whatever you have doesn't progress to anything really serious at any point in the future!

[hydengr]

Re: Yet another member of this oh-so-complicated community

by hydengr on Tue Jun 24, 2014 9:33 am

Thanks for the welcome and the reply, Cheryl G,

I have been trying to learn as much as possible, including utilizing this site for a few months now. I’m still trying to get up to speed with all of the tests, terminology, relevance and interpretation of the results. As you know, it’s somewhat daunting; especially when the terminology utilized can vary and is far removed from the vocabulary of most laymen. Good to have the internet search feature!

The MRI of my back (done with and without contrast) specifically stated, “no lesions or significant marrow signal abnormality in the thoracic spine with no evidence of myelomatous or neoplastic involvement”. I take that as a good thing. In addition, the complete skeletal survey revealed “no focal osteolytic or osteoblastic lesions”, although I realize that they are not as accurate as the MRI’s.

I’m currently living just outside Louisville, KY and I’m very pleased with the level of care that I’ve received. I’m a native of Pittsburgh, PA and will travel there next month to have all of my test results reviewed by a doctor at the Hillman Cancer Center who does a lot of work with multiple myeloma. He was recommended by friends who I know in the medical field. When I retire (hopefully in a few years!) I’ll likely move back to that area, so I figured that there was some justification in becoming a patient there. In addition, if serious treatment was warranted, I have a good support group in Pittsburgh and would have to take that into consideration when charting my treatment options.

Sincere thanks for your input.
Mark