[ktriece]

Searching for answers; is this typical?

by ktriece on Tue Feb 05, 2013 12:17 am

I'm really looking for an explanation for the deterioration of my health over the past 4 years. I had been a fitness instructor for 25 years, in good health, when I suddenly developed vertigo and neck pain (2008, age 45). After unsatisfactorily looking for answers to this from both Barrow and Mayo Clinic here in Phoenix over the course of 2 years, I lost 22 pounds and had persistent anemia, which was explained by "normal" rectal bleeding attributed to a hemorrhoid, stapled 6/28/10. Here I should mention that I have a family history of colon cancer (my maternal grandmother died from it at age 54, so I had my first, totally clear colonoscopy at age 44-no polyps). When the anemia and blood in stool continued after the staple surgery, I was referred to a hematologist/oncologist who found MGUS in my blood, which was confirmed at a 10% plasma rate by bone marrow biopsy July 2010. At that time I began experiencing noticeable fatigue, fever, and myalgia every afternoon. No lesions were found on the body scan, however. At this time, after numerous tests, Mayo Clinic diagnosed me with Chronic Fatigue Syndrome, and I assumed that would be the end of the story.
However, after an ER visit Christmas Day 2010 with severe abdominal pain, my GI doctor (who had done everything BUT another colonoscopy) finally got around to getting the ER CT in March 2011. He ordered another colonoscopy where he found a tumor in the ascending colon. After my resection in April 2011, they were "surprised" to discover that I was already at stage 3C and would need 6 months of chemo. I was given the "5FU" protocol with oxaloplaten. I assumed my fatigue/aches/fever was due to the cancer, and would end upon my "cure". Of course I do have numerous lingering side effects from the chemo (nerve and liver damage) but underneath it all these symptoms have persisted. Chemo ended over a year ago, and I have had all kinds of tests for infectious etiology with no success. Since the MGUS markers were still showing up in blood work, I am to have annual bone marrow biopsies. The one post chemo (1/2012) showed an increase from 10% to 15% plasma M-spike and some "abnormal cells". Another done 12/2012 stayed fairly constant, but my doctor doesn't think this low level should cause me to feel this bad. I have blood tests quarterly but a recent set done by an immunologist reflects elevated Kappa light chain numbers and a high normal Kappa/Lambda ratio, which is new. I just want to know if any of this could explain how bad I always feel, or is this probably just another blind alley? Since these symptoms predated my chemo, it doesn't seem as if it could be just lingering side effects...

[Multibilly]

Re: Searching for answers; is this typical?

by Multibilly on Tue Feb 05, 2013 11:33 am

Hi There Ktriece,

Boy, you have had a tough road. Sorry to hear what has been going on with you, especially being a fitness instructor.

If you indeed have bone marrow clonal cells count of 15% and are STILL suffering from anemia (having anemia fulfills meeting one of the CRAB criteria), you could very well have symptomatic Multiple Myeloma, not MGUS (you keep referring to "MGUS" markers). The third condition for being symptomatic is whether you have paraprotein (M-Protein) in your blood or urine (aka an M-Spike), which you don't comment on.

https://myelomabeacon.org/resources/2008/10/15/diagnosis/

Is your doc a multiple myeloma specialist? I would really suggest getting checked out by one.

It's good you already had a bone marrow biopsy. I would also ask about also getting a current skeletal survey x-ray or whole body PET/CT scan or MRI done to see if you have any bone lesion involvement. I assume you also had a serum and urine protein electrophoresis test, immunofixation test, complete metabolic panel, etc (assume you are, but checking nonetheless)? Those tests will help you determine if you have an M-Spike in your blood or urine and will provide the data you need to tell which stage your are with multiple myeloma, if you are indeed symptomatic. They will also tell you if you have anemia, hypercalcemia, renal dysfunction (i.e. all the other letters in CRAB), etc. As you get into this, you should also be asking to have a FISH and chromosome analysis with an eye to Multiple Myeloma to see if you have any genetic complications related to multiple myeloma. These are all the standard tests to help determine just where you are at with Multiple Myeloma and what some of your treatment options are that can be available to you.

Best of luck to you.