So, Carl's energy has gone up. His weight is down. So far, he's gone from 243 to 228.
Somehow the fairness factor isn't in effect here. He's losing weight... I get part of my body taken out and I gain a pound.
You know what? Who cares? I'm just so grateful that Carl is doing SO incredibly well.
Thursday, June 5, 2008
Thursday, May 15, 2008
Someone from the DailyStrength.com website emailed me this about her tumor. So, now I don't know what any of this means and it's all new. but, I'm going to look it up:
"Please understand, ANY Pituitary Tumor, regardless if it is associated with Prolactin can venture outside the normal confines of the Sella Tursica... (styled like a Turkish Saddle), the Pituitary suspends in the Sella from the base of the brain, between the Optic Nerves, where they innersect.
As in my first Tumor, it was not confined to the Sella, it had pushed the Pituitary outside the Sella and grew into the Caverous, Sphenoid and Transverse Sinuses. Not all of the cells from the Tumor were extracted at the time of my initial surgery.
It would ADVISABLE to seek additional testing from a Neuro Opthamologist.. this of course could be discussed with your Endocrinologist."
"Please understand, ANY Pituitary Tumor, regardless if it is associated with Prolactin can venture outside the normal confines of the Sella Tursica... (styled like a Turkish Saddle), the Pituitary suspends in the Sella from the base of the brain, between the Optic Nerves, where they innersect.
As in my first Tumor, it was not confined to the Sella, it had pushed the Pituitary outside the Sella and grew into the Caverous, Sphenoid and Transverse Sinuses. Not all of the cells from the Tumor were extracted at the time of my initial surgery.
It would ADVISABLE to seek additional testing from a Neuro Opthamologist.. this of course could be discussed with your Endocrinologist."
Thursday, May 8, 2008
Today's VA Appointment with the Endocrinologist
The doctor he saw at the VA center this morning said they probably should have started him on the other medicine and not Cabergoline. His headaches shouldn't be related to his pituitary pressure, it might be bad eyesight. He's sticking with the Cabergoline and if it's effective, he will have to take it twice a week for the rest of his life. With his condition, the doctor said they probably should have started with the other meds and if that was ineffective, gone to the Cabergoline. But, now that they started him on the Cabergoline, he can't go back to the other medicine. For some reason it won't work.
He has to go in tomorrow to have blood work done. She doesn't even want to do another MRI for 6 months to 1 year. The tumor could also be splitting (that's new). The type of medication he will have to take depends on where the tumor is, whether it's on his pituitary gland or on the stem where it produces the prolactin. if it's pressing on a stem, they could be treating it incorrectly. They also could have other problems they haven't even recognized yet.
Not that either physician is wrong...right now, they're just different opinions.
He has to go back tomorrow morning to get some blood work. Today, he has to go to St. Vincent and the Endocrinologist to get all his tests, paperwork, etc., to give them back to the Endocrinologist tomorrow.
He has to go in tomorrow to have blood work done. She doesn't even want to do another MRI for 6 months to 1 year. The tumor could also be splitting (that's new). The type of medication he will have to take depends on where the tumor is, whether it's on his pituitary gland or on the stem where it produces the prolactin. if it's pressing on a stem, they could be treating it incorrectly. They also could have other problems they haven't even recognized yet.
Not that either physician is wrong...right now, they're just different opinions.
He has to go back tomorrow morning to get some blood work. Today, he has to go to St. Vincent and the Endocrinologist to get all his tests, paperwork, etc., to give them back to the Endocrinologist tomorrow.
Tuesday, April 29, 2008
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.
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.
Monday, April 21, 2008
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.
Thursday, April 10, 2008
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.
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.
Wednesday, April 9, 2008
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.
...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.
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