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Overwhelmed trying to understand Biopsy Report

by kimbershe on Tue Sep 04, 2012 5:23 am

My husband, age 47 was just diagnosed with Multiple Myeloma in May.

He left the oncologist office with a sheet of paper not even being told he had multiple myeloma. He googled the diagnosis and was destroyed. It took 10 calls in 2 weeks from myself to the office before a nurse called me back. And said, "Yes, that's his diagnosis".

I looked at my sad best friend and said, "WE GOT THIS", and he smiled. It was as if my tough girl optimism was his antidote. So here I am! :)

I have struggled with this biopsy report, as most of you already know its alot to consume and try to learn. ANY help and feedback would be a blessing.

Mike's regular Doctor asked him to see a hematologist back in 11/2010, but never mentioned what she suspected. But I recently got Mike's lab results that she had done, and the current labs and biopsy report. But the good news, from 11/10 to 4/12 his lab numbers haven't really changed. I have been told all his genetic "FISH"? results were Negative


I don't know whats important so i'll just type his latest lab test and some Biopsy.


TSH 2.406
T PROT (SPE) 7.8
ALBUMIN (SPE) 3.5
ALPHA 1 0.2
ALPHA 2 0.9
BETA 0.9
GAMMA 2.3
A/G 0.8
ALB% 45.1
ALPHA 1% 2.2
ALPHA 2% 11.7
BETA% 11.8
GAMMA% 29.2

IMMUNOFIX,EL,UR,PROTEIN 6.8

SOURCE IFX
------------------
LgG 2663
lgA 39
lgM 30
BETA 2 MICROGLOBIN 1.8

URINE ASSAYS
---------------------
PROT,UR,MG/DL 6.8
CREA UR 24Hr In 120.04

sodium-na 138
POTASSIUM-K 4.1
CHLORIDE-CL 103
C02 22
BUN 14
CREATININE .80
GLUCOSE LEVEL 97
CALCIUM-CA 9.4
CA-CORRECTED FOR ALB 9.9
ALBUMIN 3.4
TOTAL PROTEIN B 7.9
TOTAL BILI 0.2
ALK PHOSPHATASE 52
(SGOT) AST 24
(SGOT) ALT 63

CALC VALUES/OSM
ANION GAP 13.0
OSMOLALITY CALC 286.4

CBC
----------
HEMOGLOBIN 13.0
HEMATOCRIT 38.3
WBC 7.3
PLATELET 304
NEUT% 61.4
LYMPH% 28.1
mono% 8.4
eos% 1.8
baSO% 0.3
NEUT CT 4.5
LYMPH CT 2.0
MONO CT 0.6
EOS CT 0.1
BASO CT 0.0
MCV 86.8
MPV 9.8
RDW 13.4
MCH 29.5
MCHC 33.9
RBC 4.41

Immunohistochemistry for CD138, kappa and lambda reveals increased plasma cells
(10-20%) which are kappa restricted. No sheeting, Only scattered lambda positive plasma
cells are noted. CD3 and CD20 highlight scattered T cells and B cells. Primarily
comprised of T cells. No definitive lymphoid aggregates are identified.


There is trilineage hematopoiesis with adequate maturation. Blast are not increased.
Myeloid and erythroid elements are present in normal proportions with an M:E ratio of 2.5:1
The megakaryocytes display a spectrum of maturation and are evenly distributed.
Morphologically unremarkable plasma cells are focally conspicuous: however, no overtly
atypical or plasmablastic forms are noted.No definate russell bodies or dutch bodies
are identified. There is no overt lymphocytosis.


MICROSCOPIC DESCRIPTION
-------------------------------------------

The peripheral blood is remarkable fornormocytic and normochromic anemia without
significant anisocytosis or poikilocytosis. There is no evidence of rouleaux, RBC
agglutination, basophilic stippling, or circulating nucleated red blood cells. The
absolute reticulocyte count is low normal with a reticulocyte production index of
less than 2, suggesting an inadequate bone marrow response/myelosuppression. The
granulocytes are appropriately segmented without overt dysplastic features. While
circulating lymphocytes with plasmacytoid features (eccentrically placed nuclei)
are noted, no definate circdulating plasma cells are identified. The platelets are
quantitatively and qualitatively unremarkable. No significant platelet clumping or
satellitosis is identified and the immature platelet fraction is with normal limits.


------------------------------------------------------------------------------------------------------------------------------
I cannot express enough how grateful I am to have found this site! ANY feedback is literally a gift beyond anything you could imagine. I believe god gave me this challenge because usually after I experience and conquer hardships I take it on as a lifetime passion..

kimbershe
Name: kimber
Who do you know with myeloma?: husband
When were you/they diagnosed?: May 2012
Age at diagnosis: 47

Re: Overwhelmed trying to understand Biopsy Report

by terryl1 on Tue Sep 04, 2012 6:21 am

Hi, hopefully one of the doctors will answer your questions. However, do yourself a favor and make an appointment ASAP with a myeloma expert. This site has a link to major cancer centers in the US with myeloma departments. It is unconscionable that your doctor left you hanging without reviewing your diagnosis with you. Good luck.

terryl1
Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: Overwhelmed trying to understand Biopsy Report

by mrsv118 on Tue Sep 04, 2012 8:22 am

Ditto for what Terri said, find a myeloma specialist.
We all understand what you and your husband are going through. I was diagnosed in August 2012. The people on this site have been unbelievably helpful and the doctors are amazing at making all that lab work understandable!
One of the Doc's will respond soon, I'm sure. So relax, take a deep breath, You can FIGHT THIS! :D

mrsv118
Name: Kate
Who do you know with myeloma?: ME
When were you/they diagnosed?: 7/19/12
Age at diagnosis: 48

Re: Overwhelmed trying to understand Biopsy Report

by kimbershe on Tue Sep 04, 2012 2:08 pm

ME AGAIN!

Thank you for your kind post!


I meant to add that Mike has had a Bone Survey Scan, MRI, and CAT scan, with no bone lesions, or Tumors. He has no symptoms.
He's had problems with Anemia his entire life. But over the past few years he and I would always Donate blood every time we saw a mobile Medic Drive! He was never declined for "too low" of blood count.

I started Mike on supplements almost immediately. After researching every single thing I could get a hold of. I have always been big on Alternative Medicine, and being told Mike wouldn't receive any treatment until he was symptomatic just sounded ridiculous? I have gained alot of insight by reading the book "REVERSING CANCER" by Dr Gerald H. Smith.

I brought up Mike's oncologist appointment the other day and he started acting sad and upset. I asked him why that bothered him? He said, "I actually forgot all about having cancer". I was thrilled! That's exactly how I want it. Protect your Soul and Spirit from it, and the rest will always be better.

kimbershe
Name: kimber
Who do you know with myeloma?: husband
When were you/they diagnosed?: May 2012
Age at diagnosis: 47

Re: Overwhelmed trying to understand Biopsy Report

by Billy1 on Wed Sep 05, 2012 10:35 am

kimbershe:

In reading the data you submitted it would seem that a typing of IgG Kappa could be made for the rogue paraprotein present. This is the most common type in multiple myeloma. I gathered this from the IgG number of 2663 you list and the 10-20% Kappa cells apparently detected by CD138 staining during biobsy. The odd thing here is I do not see any referance for a "M-Spike" detected under the SPEP test conducted. This usually is reffered to as a monoclonal region or some other verbage other than M-Spike itself.

The 24/hr urine protein test conducted apparently included a UPEP test since you list "Immunofix.E,UR, Protein as the determination of the 6.8 mg/dL protein present. The normal range for this depends on the Lab. and can be from 0-15 to 5-24 (mg/dL).

The following tests (among others) are typically conducted for diagnosing multiple myeloma.
1) SPEP (includes M-Spike)
2) Serum Immunofixation test to determine paraprotein type.
3) Serum Free Light Chain (Freelite) test
3) B2 microglobulin test
4) IgG Quantification test
5) UPEP test
6) 24/hr urine test to determine proteins in urine (Bence-Jones) and other
7) CBC test with emphasis on HgB, HCT, and WBC
8) CMP test with emphasis on Creatinine, Bun, eGFR and Calcium

One of the first tip-offs Doctors look for are high serum Total Protein levels.
It appears most of these tests have been conducted but a diagnosis of what stage your husband is at (if any) has not been made. It seems that almost all the blood levels for the CBC and CMP are in normal range. While I AM NOT a doctor it would not be implausible to determine a condition of MGUS or SMM considering the apparent lack of "CRAB" symptoms.

Like others I highly encourage your husband to seek out a Hematologist with extensive experiance in multiple myeloma.

Regards, Billy1

Billy1

Re: Overwhelmed trying to understand Biopsy Report

by kimbershe on Wed Sep 05, 2012 12:09 pm

Thank you Billy for your reply!

Mike wasn't given a stage of his multiple myeloma,, heck he wasn't even given a information book on Myeloma. He had his "BILL" , stating MULTIPLE MYELOMA written by hand. It was the nurse that I called whom stated he was Stage 1.

Also on the 24 Urinalysis, there's a result listed but Mike never had a 24 hour?

kimbershe
Name: kimber
Who do you know with myeloma?: husband
When were you/they diagnosed?: May 2012
Age at diagnosis: 47

Re: Overwhelmed trying to understand Biopsy Report

by Billy1 on Wed Sep 05, 2012 2:44 pm

kimbershe wrote:
> Thank you Billy for your reply!
>
> Mike wasn't given a stage of his multiple myeloma,, heck he wasn't even
> given a information book on Myeloma. He had his "BILL" , stating
> MULTIPLE MYELOMA written by hand. It was the nurse that I called whom
> stated he was Stage 1.
>
> Also on the 24 Urinalysis, there's a result listed but Mike never had a 24
> hour?

Well then, he must have had a spot urine test at the doctors office. This is not a accurate way of determining protein in the urine. A more accurate method is the 24/hr urine assay or the free light chain method which was apparently not done. As for being diagnosed as stage 1 with the conditions you list and no "CRAB" symptoms, and with no M-Spike listed I would be highly skeptical. I am confused to say the least when you mention in one of your posts that "they" want to defer treatment at this time. Deferring treatment is typical for a patient who has been diagnosed with MGUS or SMM, at least in the US. The way you have been treated by these people is unacceptable, and totally un-professional.

Billy1

Billy1

Re: Overwhelmed trying to understand Biopsy Report

by Stan W. on Wed Sep 05, 2012 9:52 pm

Find a Myeloma specialist. Could be smoldering because it sounds like his numbers are similar to mine.

Stan W.
Name: Stan
Who do you know with myeloma?: Myself
When were you/they diagnosed?: SMM-April 2012
Age at diagnosis: 58

Re: Overwhelmed trying to understand Biopsy Report

by Dr. Peter Voorhees on Sun Sep 09, 2012 10:32 pm

Dear Kimbershe,

Based on the information you have provided, it sounds like your husband has IgG kappa asymptomatic (i.e. smoldering) myeloma. I say that based on the numbers of plasma cells in the bone marrow (10-20% -- which is on the low side for a myeloma patient) and the absence of end-organ damage related to the disease (absence of anemia -- a hemoglobin of 13.0 is either normal or near normal depending on the normal range for your lab -- a trivial decrease at the most, normal calcium levels, normal kidney function, no bone lesions),

Why was this pursued in the first place? An elevated total protein on routine blood work? Evaluation of mild anemia?

Regardless, I agree with the others. You should see someone who specializes in this area for another opinion. Based on what you have posted, it does seem like smoldering myeloma, and not high risk smoldering myeloma, either.

Let's hope that the only thing that comes of this is the inability to donate blood anymore!

Best of luck and let us know how things go! You have our support!

Pete V.

Dr. Peter Voorhees
Name: Peter Voorhees, M.D.
Beacon Medical Advisor

Re: Overwhelmed trying to understand Biopsy Report

by bettyplaia on Wed Oct 17, 2012 8:19 am

My husband received multiple myeloma diagnosis on 8/13/2010. They said he had a single plasmacytoma with t-2 fracture. His entire back has small lesions related to myeloma. Emergency radiation treatment started that weekend with 23 treatments total, ending on Sept. 18th. After that my husband leonardo became weaker and weaker, told it was the Decadron. But after going to a rehab hospital on October 13th with little movement, there was no movement in legs at the end of October) then transferred back to a nursing home in November, then back to oncologist in December and told by oncologist he would never walk again we were devastated! We consulted with a neurosurgeon at Stamford Med. Center in CA in Jan. 2011 and was told he could not operate because Leonardo was a paraplegic since the end of October.
On St. Patrick's Day, March 17th, Leonardo started to move his toes. All this time I moved my husband from the bed to a commode with a Sara Plus machine. I believe it was our life saver because it would lift my husband in and out of bed, the only machine with elbow support! He would stand on it with the elbow support every day.
Doctor Mindea told us to come back to California (we lived in FL at the time) with no guarantee my husband would walk again. His operation was May 24, 2011. He went through rehab in CA for 6 weeks, came back to FL and started rehab again and on August 17th Leonardo began to walk on the parallel bars. They say it was a miracle! My husband is on a round the clock regimen of pain pills, he continues to have severe leg spasms, more weakness on his right side then left side, pain in his toes, they look arthritic now, severe back pain (SCI). He takes monthly Zometa treatments, but no chemo drugs, cannot tolerate them (had severe PN). His blood and urine tests are excellent, BMB is 46% myeloma cells. He has very bad constipation. Uses Relistor daily, cannot move bowels without it. Will the pain ever go away? Will Zometa help the pain or will he continue in pain the rest of his life? Will he be able to move his bowels without medication. No one seems to know for sure.
Elizabeth

bettyplaia


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