I'm confused

JayDS · Posted: Wed Sep 12, 2007 4:48 pm Post subject: I'm confused

First my background.

In 2001 I was dx'd with rectal cancer. Surgery removed my rectum and anus and left me with a permanent colostomy. I had chemo (5FU and leucovorin) and radiation.
During surgery it was noticed that I have an ectopic kidney on the left side.
A CT scan confirmed the pelvic location of the kidney.
I had an elevated creatinine level at the time and continued to have such afterwards ( 180 uMOL/L - Canadian way of listing this quantity)

This year my creatinine level jumped to 230 so the doc sent me to a nephrologist. Further tests revealed protein casts in the urine and that they were immunoglobulin in nature.
X-ray showed no bone lesions
serum calcium level is normal
Immunoglobulin assay shows IgG high / IgA low / IgM low
creatinine level recently was at 349 uMOL/L
I am slightly anemic with an RBC of 3.89X10^12/L

Based on the lower kidney function and M proteims in the urine plus the Ig assay I was told I meet the criteria for a diagnoses of multiple myeloma.

Today I had a bone density x-ray to check for osteoporosis. We do not have a resident radiologist doctor, the results are sent to one in another town for review. (the local radiologist retired and so far no replacement)
However, I asked the technician what he saw in the results. Of course he answered that he is not a radiologist but said that all the numbers show no problem, that I am above normal.

In April I fell and smacked my ribs hard on a piece of wooden furniture. X-rays at that time showed that they were not fractured.

So with what the tech said and the fact that 5 months ago my ribs were in good enough shape to take that fall and not snap I think it is safe to assume no osteoporosis.

So basically the only symptom of m.myeloma is the abnormal Ig that are clogging my kidneys.

I don't get to see the oncologist until at least Sept 24th. (small town, she visits once a month)

Is the diagnoses of multiple myeloma justified?

Given my experience with cancer before this really rattles me. I have not had any inkling of any mets or recurrance of the colon cancer but now I get diagnosed with a new cancer that is incurable.

I am on another forum with colon cancer survivors but none of them has m.myeloma. That's why I sought out this forum.
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Cancer, bah-humbug

brainman · Posted: Wed Sep 12, 2007 8:10 pm Post subject: Re: I'm confused

Hi, Jay,
All that I know about Multiple Myeloma I learned from my ex-father-in-law's experience with it. Have the doctor actually found a lesion that they were able to biopsy or are they just basic that diagnosis on the Ig results?

I am very sorry for all your your health problems. If you can, go to a major medical center where you can get a better assessment, diagnosis, and treatment options. Multiple Myeloma is often treated with radiation therapy. Is your local hospital equipped for that?

I will keep you in my thoughts and prayers. Keep us informed.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

JayDS · Posted: Fri Sep 14, 2007 12:27 pm Post subject: Re: I'm confused

thanks for the speedy reply brainman.

My diagnoses is based entirely on the Ig results in the urine, kidney function loss and the blood serum Ig assay results. So far, other than a steadily worsening kidney function I have none of the common symptoms of M.myeloma.

That is why I am confused as to having been told it is M.myeloma. Seems to me that it could be the earlier stage known as MGUS.

I am in Canada and although things always get done and done right it often takes time. In 2001, my colon cancer was suspected in Feb, and I had a colonoscopy, a sigmoidoscopy, definitive diagnoses and two surgeries by May 10.

This time it is taking longer to see an oncologist though. this onc is a hematology oncologist so is quite familiar with MM.

I may see if I can get into a doctor in the nearest city but that is in another province and health insurance is a provincial matter so getting that can take more time.

I could fly down to Rochester Minn. (Mayo Clinic I believe) but I just don't have the money to go that route as that would not be covered fully by OHIP.

JayDS · Posted: Sat Dec 15, 2007 10:12 am Post subject: Re: I'm confused

Been a while simce I posted.

The oncologist countered the diagnoses of MM and instead says that there is not enough criteria for such a dx. That is how I saw it too.

She says it fits a dx of MGUS instead. Now they are investigating my loss of kidney function to see if there is anything they can do to stop the decline and maybe restore some of it.

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