[raven777]

Followup From Wed. Jan 30. Help! Abnormal Lab/Light Chains

by raven777 on Thu Feb 21, 2013 11:35 am

Please refer to the previous posting to review my labs. I have been back to the hematologist for my followup. When I saw him I had alot of bone pain and fatique and couldn't even sit comfortably in the chair. He smirked, as apparently he didn't believe me. Before i left his office the first time he did a simple blood test and took a urine sample. He said you don't have cancer. ( I thought that was good but what about these symptoms). I then asked him about the elevated serum and urine light chains and the elevated ratio. He stared at me and said light chains come and go, (word for word), so I'm not concerned with this. "You don't have cancer". Then he said, I am however, concerned about the swollen glands in both clavicles so you need to have a CT scan with contrast because you might have lymphoma. DUH!!!. Last I checked lymphoma is cancer. He then said if all is normal you won't hear from me because I'm a cancer dr. and he then walked out. I had CT scan and picked up my own results and all was normal. I have an appointment with a new hematologist on March 1st for a second opinion. I have since been having blurry vision and lost partial vision in my left eye twice in one week. Aside from this and the bone pain and fatique, I sweat in the evening and have a slight temperature sometimes. I do not get night sweats. I have NOT had any other tests such a 24 hour urine etc. Only the tests stated from previous posting. Thanks. Comments are welcome.

[raven777]

Re: Followup From Wed. Jan 30. Help! Abnormal Lab/Light Chai

by raven777 on Thu Feb 21, 2013 11:40 am

I forgot to mention I did have an ultrasound and nuclear scan for the high parathyroid levels and nothing was found regarding the parathyroid gland on the ultrasound and the scan.

[terryl1]

Re: Followup From Wed. Jan 30. Help! Abnormal Lab/Light Chai

by terryl1 on Thu Feb 21, 2013 12:25 pm

I re-read the previous posts. A bone marrow biopsy will almost definitively alert you to a plasma cell or bone marrow issue. Hopefully, your new hem/onc will be more sympathetic and thorough and order one. It is the gold standard for a diagnosis.

[raven777]

Re: Followup From Wed. Jan 30. Help! Abnormal Lab/Light Chai

by raven777 on Thu Feb 21, 2013 10:49 pm

Thank you Terri for being understanding.

[Multibilly]

Re: Followup From Wed. Jan 30. Help! Abnormal Lab/Light Chai

by Multibilly on Fri Feb 22, 2013 8:54 am

Glad to see you are visiting another doctor. It breaks my heart when I read stories about patients that stick with docs that aren't thorough, are uncommunicative or don't give a damn about their patients. Like Terry said, a bone marrow biopsy will really provide another important clue.

Was your CT scan just of the suspected area or was it a full body scan? You also want to consider a full body PET/CT or XRay, especially if the bone marrow test comes back positive.

[raven777]

Re: Followup From Wed. Jan 30. Help! Abnormal Lab/Light Chai

by raven777 on Fri Feb 22, 2013 10:57 am

Thanks so much for your posted reply, Multibilly. The CT scan with iodine contrast was just of the chest as the hematologist was ONLY looking for lymphoma in the chest area. I guess since my blood tests did not indicate a spike he completely ruled out myeloma.

Unfortunately, there are no myeloma specialists anywhere in my area, so I'm hoping the new hematologist will look beyond that and do further testing such as 24 hour urine, scans and a bone marrow biopsy.

I will list just a few of my tests here in case you didn't review my older post. My Free Kappa Urine was 75. 20 H, Lamda, normal range and Kappa/Lambda Ratio was 13.12. Also, my Free kappa serum was 30.1. ESR was 45, Calcium was 11.2 but went down to 10.7 (I believe). My IgA was 600 H, and beta globulin 1.6.

These are just some of the tests. But anyway, can't wait for the appointment on March 1st.

[terryl1]

Re: Followup From Wed. Jan 30. Help! Abnormal Lab/Light Chai

by terryl1 on Fri Feb 22, 2013 11:20 am

You indicate the blood test did not have a spike, so myeloma was ruled out. I assume he gave you an SPEP. My SPEP's are always normal, but I have myeloma. I am light chain only which represents about 20 % of myeloma patients, not an insignificant percentage. Our disease is tracked by the fee light chain assays. We don't have traqditional M-spikes. Your hematologist should know this. Try to see a myeloma expert even if it involves travel.

[raven777]

Re: Followup From Wed. Jan 30. Help! Abnormal Lab/Light Chai

by raven777 on Fri Feb 22, 2013 8:50 pm

Hi Terri, It was my kidney dr. who ordered these tests then sent me to the hematologist. My kidney dr. has tested me over the past several years for myeloma because of abnormal tests results especially abnormal immunoglobulins. I always tested negative for the myeloma tests but NOT this time. He called me and said I really should go and get a bone marrow biopsy, and referred me to DR B. who as I said doesn't know what he's doing.

[raven777]

Re: Followup From Wed. Jan 30. Help! Abnormal Lab/Light Chai

by raven777 on Fri Feb 22, 2013 9:04 pm

Just want to add another note here: That is my endocrinologist called today re: my nuclear scan of parathyroid. I told her that the tech said nothing showed regarding that but that I didn't pick up the scan yet. She said that was correct but that there was a high uptake in my facial bones and right shoulder. She asked if I had pain there and I told her yes. She was happy to know I was going to get a second opinion from another hematologist. Needless to say, I rushed off to the hospital today to pick up the report and disc and sure enough the impression says : Increased activity over the midline facial bones and right shoulder, undetermined cause.

[genk]

Re: Followup From Wed. Jan 30. Help! Abnormal Lab/Light Chai

by genk on Sat Feb 23, 2013 1:32 am

Yep I had a dumb one that as early as five years before I had a full blown multiple myeloma come on me. This doctor told me after blood tests yes all readings are perfect except "your protein is a little high " duhhh! As my ribs ached and would snap when bending over a solid mass such as a car fender working under the hood I was told this is "normal" As the symptoms started to add up and physical therapy was ordered while unknowingly at that time I had at least 4 compression fractures of the 7 that would be finally found after ct scans and mri's I kept asking this quack do you think I have cancer? Oh no you do not have cancer! I was finally convinced to see another doctor of internal medicine within one week I was sitting in the office of the doctor that was to become my oncologist. While waiting on him to come in I see these ads on the walls about cancer I am thinking what am I doing here? Welllllll......... I soon found out. I was diagnosed 8 months after the multiple myeloma came on me full blown till I finally knew. I have talked to other multiple myeloma patients at the regional cancer center and have heard this same story over and over again. It is a shame there are so many bad doctors out there.