VA Appointment

Carl and I went to the VA hospital last Saturday. They don't have his medication (bummer). But, they at least will be able to treat him. I have to figure out how to work the insurance. Do we drop his work insurance and have me pick up insurance through my job? Carl would have to pay full price for his medication unless there's something we can do through the VA.
Do we drop his insurance?
If we do, will we have to pay full price for his Cabergoline?
I can pick up Aetna through my employment.
Should we get supplemental insurance?
Do we go through USAA?
At least he'll be treated through the VA. But, then we really don't need to pay what we're paying monthly for his insurance through work, so that should bring us some relief.
I hate trying to figure this stuff out.

This Saturday

Carl has an appointment with the VA hospital this coming Saturday to discuss medication, treatment, etc. This is good since Carl's finding difficult controlling some of his symptoms. We are hoping this appointment will bring a few things...financial relief for his medication and a place to continue working on shrinking this tumor.

Carl's Visit to the Endocrinologist

Carl and I went to his appointment this morning with Dr. Asamoah. Awesome doctor. Good news. Here is what the doctor said:

Cause
Dr. Asamoah said they have no explanation as to why anyone’s Prolactin levels increase. Basically what happens is the hormones split, causing each hormone to think it needs to increase to a sufficient level. The brain, for some reason, does not attempt to stop this when it happens. 99.999999% of the time, this is a benign tumor. They know this through years of study. The only case the Endocrinologist has ever proved malignant is in a woman who had breast cancer and the cancer metastasized to her brain.

Diagnosis
Dr. Asamoah believes Carl’s tumor is small enough that it will be treatable by medicine. Carl will have some more lab work done in about four weeks. Two weeks after the lab work, he will revisit with the Endocrinologist to see if the Prolactin levels have decreased and other levels have decreased. He will be scheduled for an MRI in about four months and then another about a year after that.

Medication
He was prescribed 0.5 mg of Cabergoline, which is generic for Dostinex and is to take this twice a week. It is a stronger medication, but the side effects will be less serious and the only real possible side effect the doctor was concerned with was some nausea. Eventually, he will decrease the medication to once a week. If the medication is not proven effective, then we will have to revisit this to see about other options. However, the doctor does feel strongly that the medication will do the trick.

Note
Carl will be on medication for the rest of his life.

God is Amazing

Isn't He? I sent an email through an online prayer request at our church. I later received a very special call from a woman regarding her husband and his specialization in the pituitary gland. Here is a portion of what her husband emailed her to help us:

...I have met Dr. Asamoah briefly at a speaker training event in February (in Florida) - he is a general endocrinologist who lists pituitary disorders as among his clinical interests (AACE directory). ...he is a reasonable first endocrinologist to see.

...prolactinomas are usually able to be managed by medication and it is now quite unusual to require surgery - although it can happen. It is important to get all the facts as there can be "curve balls".

...recommend Dr. James Edmondson at IU Medical Center but if the patient wants an expert second opinion on a difficult prolactinoma, I would recommend Dr. Mark Molitch at Northwestern in Chicago. He is an expert in prolactinomas and Chicago is closer than Charlottesville or Boston!

...Surgery on pituitary tumors should only be done by surgeons who specialize in pituitary surgery, usually at major medical centers.

...members of the Pituitary Society : Paul Nelson (IU Med Ctr), Aaron Cohen-Godal (Methodist & St. Vincent).

I emailed Dr. Molitch asking if he would see us for a second opinion. That is what we have thus far.

Please pray for Carl's doctor appointment tomorrow, that it all goes according to God's plan.

Up and Coming Thursday Appointment

Carl is doing all right. He has an appointment with the Endocrinologist Thursday morning. He is experiencing some symptoms that they say only 14 in 10,000 people should experience with this type of tumor. I am hoping we will find out some more on Thursday about what these symptoms mean. I think they have to take some more blood tests to see if the tumor has affected other hormone levels in his brain. I can tell it has affected them, that is for sure. We do not know if the tumor has done any permanent damage to the other hormones.

He has headaches from time to time. The PCP prescribed 500 mg of Vicodin for him. It did not seem to work well enough, so he is also now taking 800 mg of Ibuprofen. He gets vision problems from time to time where his right eye will get tunnel vision, then twitch like crazy, go blurry, and then return to normal. It is very strange.

He has had some temper problems, nothing serious. But, he said when he gets angry, he does not feel like Carl. He said it feels like something completely different. He can control it, but he snaps a lot easier right now. It really bothers him. Carl likes to say he is not worried. But, I think we all know better.

We should find out on Thursday if the Endocrinologist wants to go with one of three treatment options:
Medication, which could shrink the tumor – his tumor may be too large for medication
Radiation, which I am sure you know what can happen with radiation (hair loss, etc.)
Surgery (three options for surgery)
Through the back of the head
Through the gum line
Through the nasal passage

Amazingly enough, we put in a prayer request for him at church. The lady who "farms" the prayer requests out to the appropriate individuals called me herself yesterday. She just so happens to be married to a physician who specializes in the pituitary gland (God is amazing). She is getting some information from him and will get back with me about Neurosurgens and Endocrinologists.

God is definitely amazing.

Right Eye

Carl's still having problems with his right eye. He says he can "feel" pressure behind it. It still screws up his vision. He has a hard time explaining it. He says he can "feel" it and it makes his eye go quirky, as if he's almost in a daze, like a he "just woke from a bad nap" daze. The pressure seems to be worse on his optic nerve.

Location of the Pituitary Gland

http://www.braintumor.org/patent_info/Surviving/brain_anatomy/index7.html

Introduction to the Pituitary Gland - from www.pituitary.org

The pituitary is a small, bean-shaped gland located below the brain in the skull base, in an area called the pituitary fossa or sella turcica. The gland is regulated by a region of the brain called the hypothalamus and they are connected by a thin delicate vascular connection called the pituitary stalk or infundibulum. Weighing less than one gram and measuring a centimeter in width, the pituitary gland is often called the "master gland" since it controls the secretion of the body’s hormones. These substances when released by the pituitary into the blood stream have a dramatic and broad range of effects on growth and development, sexuality and reproductive function, metabolism, the response to stress and overall quality of life. The pituitary gland is thus at the anatomical and functional crossroads of the brain, mind and body.

Structurally, the pituitary gland is divided into a larger anterior region (adenohypophysis) and a smaller posterior region (neurohypophysis). Directly above the pituitary gland are the crossing fibers of the optic nerves called the optic chiasm as well as the optic nerves as they project to the eyes. On each side of the pituitary gland is the cavernous sinus which is a venous channel through which runs the large carotid arteries that carry blood to the brain, and important nerves that control eye movements and facial sensation. Because of the close proximity of the pituitary gland to these major intracranial nerves and blood vessels, as well as the vital hormonal control the pituitary gland provides, disorders of the pituitary can cause a wide spectrum of symptoms, both hormonal and neurological.

Listed below are the specific hormones produced by the pituitary:

Growth Hormone (GH): This is the principal hormone that, among many other functions, regulates body and brain development, bone maturation, metabolism and is essential for healthy muscles.

Luteinizing Hormone (LH) and Follicle Stimulating Hormone (FSH): These hormones control the production of sex hormones (estrogen and testosterone) as well as sperm and egg maturation and release.

Prolactin (PRL): This hormone stimulates secretion of breast milk.

Thyroid Stimulating Hormone (TSH): This hormone stimulates the thyroid gland to release thyroid hormones. Thyroid hormones control basal metabolic rate and play an important role in growth and maturation. Thyroid hormones affect almost every organ in the body.

Adrenocorticotropic Hormone (ACTH): This hormone triggers the adrenal glands (located above the kidneys) to release the hormone cortisol which in turn, regulates carbohydrate, fat, and protein metabolism and is essential in the stress response.

Vasopressin - Also called anti-diuretic hormone (ADH): This hormone promotes water to be reabsorbed by the kidneys and is thus essential in water and electrolyte balance.

In disease states, the pituitary gland may under- or over-produce hormones. Decreased or absent hormone production from the pituitary gland is called hypopituitarism (Pituitary Failure).

Prolactin Levels

I hadn't thought about it before, but it was suggested that I find out what Carl's Prolactin Level was when he had it checked. Normal Prolactin levels are between 2.1 and 17.7. On March 19, Carl's Prolactin level was 517.3.

I'm waiting to find out exactly where in his head the tumor is located. I am on some support group websites, which helps because I'm finding out more information daily to help us better understand this disease. I will keep all of you updated on my findings.

I am also going to find a physician who specializes in neuro eye problems to get Carl's eyes examined. I think we'll wait until after we see the Endocrinologist because I want to see if he knows someone to refer us to.

There is an association, if you're interested. It's called The Pituitary Network Association. It's created by a man named Robert Knutzen. The website is http://www.pituitary.org/. This website states "Sixty-five million North Americans suffer silently from pituitary and hormonal disorders." That's one in five people.

Here are some symptoms of a Pituitary Disorder from the website:

Headaches
Depression
Mood/Emotion Swings
Anger
Loss of Memory
Loss of Sleep
Sexual Dysfunction
Eating Disorders - Anorexia - Obesity - Bulimia - Weight Gain
Lethargy
Weakness in Limbs
High Blood Pressure
Diabetes
Infertility
Impotence
Irregular Menses
Lactating
Unusual Hair Growth

Headaches

As much as Carl says it's not really a big problem and there's really no change, he's getting more painful headaches. Tonight, while I was working, he could barely function. He told me later they were so bad, he couldn't move. He just put his head back on the couch and closed his eyes. He said it took everything he had to get up.

I know he doesn't want me to stress. But, really?

We talked some about Power of Attorney's tonight. Since there is the slight chance he would have to go in for surgery, we want to make sure everything is in place. We talked some about setting up wills, trusts, etc.

Carl keeps saying, "They do brain surgery all the time." Sure. But, they don't do brain surgery on him all the time and as great of doctors as they might be, they are only human.

Maybe we're talking too early for this. We only want to make sure we have all our ducks in order. I don't like this reality of all these "just in case" topics. Especially since it is potentially real now.

I just hope that we are psyching ourselves out and it is treatable with medication. I pray it is. Please pray for Carl.

A List of Things Carl's Currently Experiencing

a) Headaches (we know this is related to the tumor) - the headaches have gone from weekly headaches a month ago to daily headaches. He has been prescribed Vicodin to relieve the pain.

b) Vision Problems - his eye twitches, goes blurry, and then back to normal. We don't know why.

c) Short Temper - he broke down the other night because he doesn't know why he cannot control his temper. He says he doesn't feel like himself when he gets angry and it's as if he cannot control it.

We still don't know if the Endocrinologist will require surgery or if he will feel medication will be enough.

I Love My Husband

Carl, our two youngest, and I just got home from our wonderful trip to Louisiana. We had a great time and are thankful for the time we were able to spend with my entire family as it's been a long time since we've all been in the same room together.

Carl's headaches are more frequent. They are not more painful, nor are they causing any other symptoms. He is simply out of commission while experiencing the headaches to the point where he is forced to take two prescribed Vicodin.

We read some where there are connections between Prolactinoma and Thyroid problems. Carl is hopeful because it might help his weight if the decrease in tumor helps any potential thyroid problems, thus decreasing his weight.

While on the road today, we found an endocrine website that offered a great deal of information regarding Prolactinoma, the medications involved when patients are treated with medications, the possibility that Prolactinoma could reoccur, and that medicine could also potentially be taken for years to treat this tumor. Here is the website if you are interested: http://www.endocrine.niddk.nih.gov/pubs/prolact/prolact.htm.

I also called them to request further information through the mail so we will have better preparation when we meet with the Endocrinologist. I do not want to leave out any vital questions.