I recently asked Al how he was feeling and he responded with the title of this post. He said, "I'm one sick dude". If it wasn't so pathetic, I would have laughed out loud.
After my last post, I thought we were going to have a peaceful month at home, taking his new chemo pill and relaxing with long talks in front of a roaring fire. Boy, was I wrong! The first couple of days we were home were spent organizing a new slew of meds, catching up on the shows I had DVR'd and convincing our dog that it was really us. And then came Christmas day. Al had become slightly weaker a few days prior to December 25th, but the morning of Christmas, around 4:30 am I knew we were in trouble. By 9:00 am, we were on the way to the hospital in our 3rd ambulance ride.
He was diagnosed with double pneumonia and a urinary tract infection. He is "one sick dude". So here I sit, writing a post that was supposed to sing the praises of the doctors at MD Anderson and the chemotherapy pill and how it was working wonderfully. Well, that post will hopefully be written in the near future. But for now it looks like we will be spending New Year's Eve in a hospital room, our third visit and third holiday in three months.
Tuesday, December 28, 2010
Friday, December 17, 2010
Just the Facts
When I started this blog, I did so to keep all our family and friends informed of what was going on with Al's illness. I thought I would be able to inform, yet keep some of the details to ourselves. As this journey has moved forward and I have become more educated through our doctors, I now feel that maybe everyone should be aware of the facts of this disease. I like to pray in specifics and for that reason I have decided to reveal more than I normally planned so that you can also pray in specifics.
Al was diagnosed with Adrenocortical Carcinoma (ACC). It is a cancer of the adrenal cortex which is the outer layer of the adrenal gland. The adrenal glands are small, triangular-shaped hormone-producing glands located above each kidney. The adrenal cortex is the source of several different steroid hormones. These steroids control inflammation, metabolism and the body's balance of salt and water. The inner layer of the gland is called the medulla, and it is the source of hormones like adrenaline that influence heart rate and blood pressure. ACC is extremely rare and affects only 1 to 2 people per MILLION each year in the United States. It is so rare that MD Anderson is one of only two hospitals in the US that treat this disease. The other hospital is located in Ann Arbor, MI near the University of Michigan. MD Anderson sees on an average only one new patient per week with this disease.
ACC produces steroid hormones, often in very high amounts. Al's tumor has overproduced the hormone, cortisol. Because of this overproduction, he has developed Cushing Syndrome. The symptoms of Cushing Syndrome fit the symptoms that he has developed over the last few months. Some of these include:
- High Blood Pressure
- Muscle Weakness
- Easy bruising
- Facial flushing
- Diabetes
- Inflammation and infection (which explains the leg
problems)
In up to 70% of patients with ACC, the cancer may have spread outside of the adrenal gland by the time it is diagnosed. This has occurred in Al's case. According to his endocrinologist, ACC loves the liver.
OK, enough of the medical lesson. Hopefully now you understand at least a little bit about ACC. Now, what is the treatment for this disease? The options are surgery, chemotherapy, mitotane (chemo pill) or some combination of these treatments. In Al's case, surgery has been ruled out because the cancer has metastasized to the liver. Surgery may be an option later if the tumors shrink. The next option is traditional chemotherapy. Because he was just diagnosed with Cushing Syndrome, chemotherapy is out right now until the Cushing is stabilized. Option 3 is mitotane therapy (chemo pill). Mitotane's job is to destroy the adrenal gland and to decrease the metastasized tumors. It will also destroy the healthy adrenal gland, so replacement hormones are also given. Al's course of treatment at this time is mitotane for 30 days. This will give his body time to stabilize the Cushing Syndrome and shrink the tumors before traditional chemo is given.
His endocrinologists have totally revamped his meds. They have taken some away and added new ones. We are most excited about the meds that will stabilize the Cushing Syndrome. In his doctor's words: "you will feel better in one week"! I literally clapped in the exam room when he said that. That's all I want...for Al to feel better.
This is what I currently have on my kitchen table:
I had to buy a "condo" for all of this medicine:
I have to be super careful with his chemo pill:
Well, that's the facts. I know this was a long post, but now you know everything. We have a plan, options and hope. Please notice my prayer requests at the right side of this blog. Your prayers have been working!
Al was diagnosed with Adrenocortical Carcinoma (ACC). It is a cancer of the adrenal cortex which is the outer layer of the adrenal gland. The adrenal glands are small, triangular-shaped hormone-producing glands located above each kidney. The adrenal cortex is the source of several different steroid hormones. These steroids control inflammation, metabolism and the body's balance of salt and water. The inner layer of the gland is called the medulla, and it is the source of hormones like adrenaline that influence heart rate and blood pressure. ACC is extremely rare and affects only 1 to 2 people per MILLION each year in the United States. It is so rare that MD Anderson is one of only two hospitals in the US that treat this disease. The other hospital is located in Ann Arbor, MI near the University of Michigan. MD Anderson sees on an average only one new patient per week with this disease.
ACC produces steroid hormones, often in very high amounts. Al's tumor has overproduced the hormone, cortisol. Because of this overproduction, he has developed Cushing Syndrome. The symptoms of Cushing Syndrome fit the symptoms that he has developed over the last few months. Some of these include:
- High Blood Pressure
- Muscle Weakness
- Easy bruising
- Facial flushing
- Diabetes
- Inflammation and infection (which explains the leg
problems)
In up to 70% of patients with ACC, the cancer may have spread outside of the adrenal gland by the time it is diagnosed. This has occurred in Al's case. According to his endocrinologist, ACC loves the liver.
OK, enough of the medical lesson. Hopefully now you understand at least a little bit about ACC. Now, what is the treatment for this disease? The options are surgery, chemotherapy, mitotane (chemo pill) or some combination of these treatments. In Al's case, surgery has been ruled out because the cancer has metastasized to the liver. Surgery may be an option later if the tumors shrink. The next option is traditional chemotherapy. Because he was just diagnosed with Cushing Syndrome, chemotherapy is out right now until the Cushing is stabilized. Option 3 is mitotane therapy (chemo pill). Mitotane's job is to destroy the adrenal gland and to decrease the metastasized tumors. It will also destroy the healthy adrenal gland, so replacement hormones are also given. Al's course of treatment at this time is mitotane for 30 days. This will give his body time to stabilize the Cushing Syndrome and shrink the tumors before traditional chemo is given.
His endocrinologists have totally revamped his meds. They have taken some away and added new ones. We are most excited about the meds that will stabilize the Cushing Syndrome. In his doctor's words: "you will feel better in one week"! I literally clapped in the exam room when he said that. That's all I want...for Al to feel better.
This is what I currently have on my kitchen table:
I had to buy a "condo" for all of this medicine:
I have to be super careful with his chemo pill:
Well, that's the facts. I know this was a long post, but now you know everything. We have a plan, options and hope. Please notice my prayer requests at the right side of this blog. Your prayers have been working!
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