[Cheryl59]

Cheryl from north central California

by Cheryl59 on Sat Sep 23, 2017 4:24 pm

Hi All,

I'm married to a wonderful man who is a colon cancer survivor 2x and still working, have 3 grown kids that are scattered far away from me, and 8 grandchildren ages 2 - 18. I am retired from 30 year government job with CA State Parks as an Admin Contracts Officer. I love the great out­doors.

I live in Northern Central California, in the middle of agriculture land. It takes 2 hours to get to the California East Bay area, 3 hours to get to Stanford, and 5 hours to get home (heavy traffic). The nearest hospital and cancer medical facilities are in Modesto and Turlock, 1 hour away.

My history (this is an edited version of what I posted in another subject forum): I thought that I had been chronically extremely fatigued for 2 years, but looking through my online health records, my complaints state longer, more like 4 years. Sick with sinus infections multiple times a year, as well as urinary infections. Vertigo off and on treated with Antivert (meclizine). Hospi­tal­ized for diverticulitis 2x, but have had it more. Colonoscopies done over 10 years, had polyps, but nega­tive for cancer. H Pylori was present 1x. I have a lumpy bumpy thyroid (nodules felt and identi­fied), a year ago, high antibodies showed up then back to normal, low TSH off and on for 4 years, then back to normal range September 2017, Last year 2 biopsies thyroid nodules 6 months apart, negative for cancer. I am negative for diabetes, A1C is within range (5.5).

I have had crushing pain in shoulders, arms, hands, lower legs for several years. OTC and pre­scription pain meds did not help, just made me really nauseous. Neuropathy identified in my hands and feet, and spine problems along with ongoing low vitamin B and D. In January 2017, I received try #2 spinal epidural for severe back and leg pain for degenerative spine disease and ruptured and/or bulging disks. The last epidural alleviated most of the pain. About a year ago, I began to experience head tremors (side to side), and memory / cognitive problems. Primary care physician began me on gabapentin (I was up to 1,200 mg per day, no longer taking due to side effects), and referred me to a neurologist, it has taken about 1 year to finally be able to be seen. Also, a year ago, I began to have teary eyes in which I saw an eye doctor, who gave me pre­scription eye drops with steroids which didn't work. (At the time, I wondered if it was related to hypothyroidism.)

I saw a movement neurologist at Stanford on September 1, 2017, who reviewed my health history and examined me and said he didn't believe I had multiple sclerosis, AL, etc.. He be­lieved that autoimmune disease was part of the cause, in particular, hypothyroidism. He ordered blood tests for thyroid and others that I wasn't familiar with, one being "Immunofixation ELP". On September 5, 2017 at Stanford, I had a 4 hour cognitive test performed. I received a phone call about the outcome, and I didn't do very well, below average in areas. Reason for cognitive deficients given: hypothyroidism.

On September 7, 2017, I had my blood work done at my primary healthcare facility and can see test results as they are released. On September 18 the Immunofixation ELP blood test came back abnormal.The pathologist reported it 'Paraprotein identified, IgG Kappa.'

I am thankful to the neurologist who cared enough to go the extra step.

Where I am at as of September 22, 2017:

A movement neurologist that I saw at Stanford for head tremors ordered blood labs that identified IgG kappa paraprotein on September 18, 2017. My blood labs were done at my primary health care center, and labs were to be shared with my primary care physician and endocrinologist, Stanford was to receive results direct. Stanford never received my blood labs, so I asked my primary care physician for the interpretation and what the range was of the paraprotein IgG kappa, she wouldn't give me any info, and redirected me back to the neurologist (Stanford) for answers. Neurologist returned my call from September 19, 2017 yesterday evening (September 22), who redirected me back to my primary care physician to see if I needed to see a hema­tolo­gist for further evaluation. Neurologist says that he can send a referral to hematology to see IF I need further evaluation, but that I may have to wait some time, as it is on their schedule. I have no idea to date, what my range was, whether it was high or low.

[Nancy Shamanna]

Re: Cheryl from north central California

by Nancy Shamanna on Mon Sep 25, 2017 1:25 pm

Hello Cheryl, and welcome to the Forum. It sounds like you have had a lot of health issues over the last few years, and many investigations and treatments too.

At the end of your post, you mentioned that you may be referred to a hematologist because of your elevated IgG levels. As well as having excess 'paraprotein,' I could see several other of your symptoms which could indicate myeloma or a precursor to that.

- Crushing pain in your bones
- Frequent infections
- Neuropathy in your hands and feet.

Other blood tests could be done, such as tests for 'kappa' and 'lambda' proteins, which are associated with antibodies. Myeloma can give one excess antibodies in the blood. Tests for kidney function, excess calcium in the blood, and anemia can also be done. X-rays or other scans of your bones (MRI for example) can show if the cancer is causing 'lesions' too.

I hope that you get referred to a hematologist, and in the meantime, can your primary care physician order more blood tests for you? Please let us know how this turn out, and best wishes.

[K_Shash]

Re: Cheryl from north central California

by K_Shash on Tue Sep 26, 2017 9:51 pm

Hi Cheryl.

Welcome to the forum, though I am sorry you have to be here.

I have only a couple of suggestions:You wrote that you are about an hour away from Modesto. I lived in that general Central Valley area for almost 25 years. Have you considered UC Davis? They have a multiple myeloma program.

You should have a very good health insurance. It is appalling that it took almost a year for you to be seen by a neurologist, and it seems nobody is giving you a clear picture of the IgG kappa paraprotein level. I hope that that level is just above the 'normal range. For the kappa free light chain, the normal range is 3,3 - 19.4 mg/dL or 33 - 194 mg/L. Equally important is the kappa-lambda ratio, which signifies if you have monoclonal activity. The normal range for the ratio is 0.26 - 1.65. Of course, you would need to undergo a lot of tests, particularly the bone marrow plasma cell percentage and the cytogenetics test before a hematologist would determine if you need to start myeloma treatment or if you have MGUS or smoldering myeloma.

I have been treated for my IgG kappa myeloma for almost three years now. My light chains only myeloma was detected because of the high protein in my routine urine test. My kappa was at 1,070 mg/dL and the kappa-lambda ratio was 186 when my treatment, induction phase, began. My PCP called me and told me that I had multiple myeloma and referred me to the oncologist-hematologist immediately after my kappa was detected at around 870. Again, your kappa level may not be high enough to warrant any treatment, but your primary physician must give you a clear picture and a copy of your test results. At least that is my opinion. It is shocking enough to discover that you may have a form of cancer, and it must be extremely frustrating to be left in the dark about your blood test results.

Nancy Shamanna has already listed the other tests that would have to be done (x-rays for lesions, for example), but I wonder if your primary physician would share the results with you. I hope you get referred to a hematologist or to a myeloma specialist soon and get a proper investigation under way. In the mean time, as I understand it, you have every right to get a copy of your medical record and your primary care physician must know that. You may have to demand it.