[JeskiM69]

Not my first cancer circus

by JeskiM69 on Fri Oct 09, 2015 7:11 pm

I am not yet sure if I will be a permanent member here or not. My other cancer family may miss me or call me a traitor by joining a new cancer family. I hope I don't need to join this family, and I don't mean to offend anyone by not wanting to join up.

Here's my back story (a bit long):

Shortly after I turned 39 I had developed symptoms that five months later would diagnose me with Stage IIB testicular cancer. I had my left testicle removed through the inquinal canal and I had multiple abdominal lymph nodes that were about 2.5 cm due to metastatic cancer. So I started some heavy chemotherapy called BEP. The drugs used are: bleomycin, etoposide, and cisplatin

I am now 15 months out from completing the chemo and I am in remission. My surveillance schedule is blood work and a physical every 3 months and a CT and chest x-ray (CXR) every 6 months for the first two years. Blood work consists of a CBC and chemistries plus the testicular cancer-related tumor markers.

Anyways; since I started my cancer journey 2 years ago, my blood work had always shown my total protein to be on the high end of normal and slightly elevated above normal. I had always asked my oncologist (who is also a hematologist) why that is always high. She never seemed too concerned about it and said that my body was putting out antibodies. So at my one year post chemo appointment my total protein was at the highest I have ever seen it. It was at 8.9 So I again pressed her why is that always high ? She said that for my next checkup she would order tests that would answer that.

So today (October 9, 2015) was my 15 month checkup and for the first time I have numbers that are typically reserved for tests for myeloma. Today was also the fist appointment that I had with a new oncologist as my previous oncologist has moved out of town. So my new oncologist seems to be covering herself as she is not too concerned about this either and has ordered further tests to rule out multiple myeloma.

As a result of my previous heavy chemo I had lost my immune system in each cycle of the chemo. My absolute neutrophil count (ANC) for each cycle bottomed out near zero and I had Neupogen to rebound my immune system before the next cycle. Typically from this kind of chemo one can expect that their white blood cell (WBC) counts may never return to normal ranges. My WBC still hovers at the low end of normal and sometimes just below. Not a concern and is expected.

I also developed peripheral neuropathy from the cisplatin drug. Again that is normal. Cisplatin also damages the kidneys and we expect a normal 15% reduction in kidney function. Bleomycin damages the lungs and I have a documented 12% reduction in lung function.

So fast forward to today's results:

CBC

RBC: 5.11
WBC: 4.6 Low (not extraordinary for my previous chemo)
HGB: 14.7

Chemistries

BUN: 12
Creatinine: 0.94
Calcium: 10.2
Albumin: 5.1 High
Globulin: 3.3
Total P.: 8.4 High

For the last year or so it has been all over the place and usually in the mid-high end of normal. My creatinine has had the same behavior. This is highest I have ever seen my calcium and is it the top of the range. This is highest I have ever seen my albumin; usually it's my globulin that is at the high end (and slightly above)

Immunology

IgG: 1334
IgA: 163
IgM: 118

SPEP

Total P.: 8.0
Albumin SPE: 5.0
Alpha-1 Glob: 0.3
Alpha-2 Glob: 0.7
Beta Glob: 0.8
Gamma Glob: 1.3

Kappa Free Light Chains: 20.37 HIGH
Lambda Free Light Chains: 8.1
K/L Free Light Chain Ratio: 2.51 HIGH

Tumor Markers

Beta 2 Microglobulin: 1.98

I do want to point out that I was developing a pretty good sinus infection at the time of the blood test (if that has any impact).

I have not been diagnosed with myeloma. Also, these numbers (particularly the chemistries) have not really changed from two years ago when I had my very first set of blood tests for my testicular cancer. which kinda makes you wonder just how normal these numbers may be for me anyways.

I am not too sure what to make of this at this point. My oncologist is new to me and my case is new to her, so I think she mostly wants to rule out myeloma. So to that effect she has ordered further testing:

On Monday I will have a bone scan (set of xrays) to look for lytic lesions,etc. Then I will do a 24-hour urine catch for analysis.

I am very well educated to my testicular cancer case, etc, but now I am getting immersed into the myeloma world until such time that I find out if I have it or not.

Any advice on what I should do next? Anything in those numbers seem concerning?

My onco seemed to not be too concerned ... but I always do wonder just how much truth they do tell.

If you read this fully thanks.

If this is not the best part of the forum to post this for answers then can some one direct me where to post at?

Thanks,

- Matt

[Little Monkey]

Re: Not my first cancer circus

by Little Monkey on Fri Oct 09, 2015 11:02 pm

I would have your kappa / lambda ratio numbers reviewed by a doctor who specializes in myeloma, for good measure.

[Multibilly]

Re: Not my first cancer circus

by Multibilly on Sat Oct 10, 2015 10:10 am

Jeski,

I hope you don't have to join this family either.

Did your hematologist run a serum immunofixation test? Is there an entry anywhere on the SPEP test results that refers to an "abnormal protein band", "paraprotein", "M-spike", "M-protein", "monoclonal protein", etc?

[JeskiM69]

Re: Not my first cancer circus

by JeskiM69 on Sat Oct 10, 2015 12:51 pm

Yes. Specifically this is what she ordered:

Immunoglobulin assay, quant
Human chorionic gonadotropin measurement
RTC MD
SPEP with immunofixation
Light chains, serum
CBC w/ auto diff, CMP
Alpha-1-Fetoprotein measurement
Lactate dehydrogenase measurement

The M-spike was not shown on the print outs that I have. I posted everything that I had on the SPEP above.

However I did ask if there was an M-spike and she that there was No M-spike identified.

I plan to stop back at the oncologist on Monday to request both the SPEP and immunofixation Interpretations (as I believe it has more numbers/data than I have) and those interpretations were not visible to me, but she clearly had them up on her computer screen.

One thing I have learned going through this stuff is to rarely interpret the results of a single test taken in isolation. That it's best to do the tests serially to get the better picture ... simply put a single data point does not make a trend (or a diagnosis).

The one thing that I don't understand with these numbers is what constitutes a "high" ratio ? I mean yes, the K/L ratio is clearly flagged as high, but in this disease what would truly be considered a high ratio (5, 20, 50, 100, 1000)? I just don't have a context or previous history to judge it against. I have never had a blood test where something was off just a bit (either slightly high or low) and then the next test it was down or up from the previous.

I am trying not to worry needlessly.

- Matt

[Multibilly]

Re: Not my first cancer circus

by Multibilly on Sat Oct 10, 2015 1:56 pm

Hi Matt,

Again, I'm not a doctor, so please verify all this with your hematologist.

Based on your comments, you seem to have a very good grasp of how to interpret lab test results.

The fact that you don't have an M-spike rules out the majority of the various types of monoclonal gammopathies. So, that's good news.

However, there are variants of monoclonal gammopathies where only the free light chains are off while one's M-spike is normal (about 15-20% of multiple myeloma cases). But free light chain values can be affected by lots of things such as infection, inflammation, etc, so it's not at all clear that to me that you have a monoclonal gammopathy based on the tests you've had so far. I'm also not at all qualified to comment on whether your other conditions and treatments may be the root cause of your elevated kappa value.

Your hematologist seems to be taking the right steps by following up with xrays and a 24 hour UPEP. If he/she still suspects a monoclonal gammopathy after the next round of tests, he/she would likely order a bone marrow biopsy to confirm that suspicion.

Regarding your question about what constitutes a "high" k/l ratio, I would respond by saying that anything out of the normal range should raise a concern whose cause needs to be identified. If one is diagnosed with an early stage of multiple myeloma such as smoldering multiple myeloma (which is my current diagnosis), then one starts to worry when the k/l ratio approaches 100. See this thread regarding why I say this:

https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/

Let us know how things go next week. Wishing you well.

[Jonah]

Re: Not my first cancer circus

by Jonah on Sat Oct 10, 2015 2:53 pm

Hi Matt,

Like Multibilly, I hope you won't be joining a second circus, and I'm sorry you had to join the first one. It seems, though, that you've responded well to the treatment you received for your first cancer diagnosis.

I agree with everything Multibilly has given you as far as feedback so far. I just wanted to add a few further comments that might be helpful.

You mentioned that you have reduced kidney function. This isn't reflected in your creatinine number, which is in the normal range, but the creatinine level is not a perfect measure of kidney function. If your kidney function is, in fact, reduced, then that's relevant to the interpretation of your kappa/lambda ratio. The "normal" range for the ratio is different for patients with renal impairment -- it's 0.37 to 3.10, instead of 0.26 to 1.65.

So your kappa/lambda ratio isn't outside the "normal" range for people with kidney impairment. Of course, your doctors will have to decide whether your kidneys are impaired enough to use the alternate "normal" range for the kappa/lambda ratio. It is, however, something you should bring to their attention.

It's a good sign that none of your tests are mentioning signs of a monoclonal protein, paraprotein, or M-spike. Healthy people -- that is, people without a plasma cell disorder such as multiple myeloma -- do not have an M-spike. It's a marker that is very specific for that type of disorder because it's what the disease causes. So it's not something that is likely to show up on someone's lab results if the person doesn't have a plasma cell disorder.

As Multibilly mentioned, though, there are some people with plasma cell disorders who do not have an M-spike, but who do have elevated free light chains and kappa/lambda ratios that are out of whack. If you don't have any signs of an M-spike on your SPEP or serum immunofixation tests, then it's really your free light chain test results that deserve the most attention.

Best of luck to you, and please update us on what you find out.

[Multibilly]

Re: Not my first cancer circus

by Multibilly on Sat Oct 10, 2015 4:01 pm

Jonah,

As usual, you make some great points in a very nice follow up. Take care.

[JeskiM69]

Re: Not my first cancer circus

by JeskiM69 on Sat Oct 10, 2015 6:48 pm

Jonah,

You mention Kidney function. Yes my Creatinine and BUN are in the normal range on this latest test. Since my chemo they have usually been right at the upper level of normal (ULN). I also don't have 100% proof of degree of kidney damage (like I do for my lungs). I just know that with the previous chemo regimen I had (cisplatin) that there is "on average" a 15% renal impairment. I got that info from many scientific studies on the long term effects of the that chemo regimen. Obvious I can have more or less. I also know that Creatinine and BUN are not the best way to measure mild or moderate renal function. Instead I believe I need a solid read on my estimated Glomerular Filtration Rate (eGFR)...which I have never had.

"
In general, eGFR is more sensitive at detecting kidney injury than a creatinine cutoff > 2.0 mg/dL and eGFR use should be encouraged among hematologists. If renal involvement is the sole criterion for starting therapy, with eGFR < 40 mL/min and minimal albuminuria, a renal biopsy is indicated to distinguish between light-chain–related kidney damage and renal damage unrelated to hematologic diseases.
"

My source for that info is here:

http://asheducationbook.hematologylibrary.org/content/2012/1/595.full

About half way through the publication there is a section on differential diagnosis where they discuss renal disease.

You are right that renal impairment does give an altered reference range for free K/L....hopefully that is true for me. I knew going into it that the BEP chemo regimen is very toxic. I had extreme dehydration in my 3rd cycle and had to go to the hospital for both hydration and nourishment via my port.....boy did that perk me up (temporarily)...it's likely that my kidneys took a hit then.

At any rate sounds like there is more digging to do to get to the bottom of this latest issue. I am are only just at the beginning....it is a fun challenge to learn about this in some respects.

- Matt

[Multibilly]

Re: Not my first cancer circus

by Multibilly on Sat Oct 10, 2015 7:16 pm

Matt,

Are you sure you've never had your eGFR measured? I saw you posted your calcium level earlier and the comprehensive metabolic panel that reports one's calcium level includes an eGFR reading.

[JeskiM69]

Re: Not my first cancer circus

by JeskiM69 on Sat Oct 10, 2015 8:33 pm

If I have had it done then I don't know about it.

Here's what has always been included in my chemistries:

Glucose
BUN
Creatinine
Sodium
Potassium
Magnesium
Chloride
CO2
Anion Gap (only added in this latest test)
Calcium
Albumin
Total Protein
Globulin
Albumin/Globulin
Bilirubin
Alk. Phosphatase
AST/SGOT
ALT/SGPT

To be honest with you; up until this latest test I never paid too much heed to my chemistries related to the kidneys (took it for granted that they would likely always be a bit "out-of-whack"....only the consistently high Total Protein was ever mentioned (which was me prodding my onco. with "why is it always up ?")

So now your question has let me to this nifty eGFR calculator: http://egfrcalc.renal.org/
and this units converter (in my case from mg/dL to umol/L): http://www.endmemo.com/medical/unitconvert/Creatinine.php

Yielded me a result of eGFR = 71

with these notes:

GFR 60-90 may correspond to stage 2 CKD in the presence of other indicators of CKD
The 90% confidence interval for this estimate is: 50-92 ml/min/1.73m2

I also plugged my numbers from the last year and my eGFR landed anywhere between 55 and 94 with an average near 75.

What's funny is that I always kept logs and notes of stuff that happened to me in the week before a blood draw in case they asked if I can think of anything that may explain X. Each time my Creatinine was high (and my proteins) I was somewhat dehydrated. I've always been in the chronically dehydrated bucket. I don't drink as much water as I should and I have always perspired heavily all my life. Currently I live in central treatment which is of course hot for half the year.....which only makes my hydration problem worse.

- Matt