We were supposed to go to UAB today for a PET scan and CT scan, but they called Carrie a few days ago and told her the insurance denied the PET scan, for whatever reason. And since they cancelled the PET, we called and changed her CT to next wednesday morning before she meets with her doctor that afternoon. This way, it saves us a trip to Birmingham. So we won't have any new information until next wednesday, June 1, when we will of course let you know what the doctor says.
Friday, May 27, 2011
Saturday, May 21, 2011
Post Yardsale Update
May 21, 2011 will be a day that Carrie and I will never forget. We will never be able to say thank you enough to everyone that donated merchandise, bought merchandise, and worked the yard sale. We would like to say a special thank you to Sharon Bailey, Karie Dalton, Teri Dunaway, Dr. Merrilee Holland and Leanne Greene for putting it all together. Thank you to Pangea for coming out and playing. The music was great. The Lord has blessed Carrie and I beyond measure. We have the most wonderful friends. Thanks for coming out and spending your Saturday working the sale and supporting us. To the College of Veterinary Medicine, I can honestly say that I work with and for the best faculty, staff and students in the world.
Thursday, May 19, 2011
Starting Mitotane... again
I met with both my oncologist and endocrinologist at UAB yesterday, and after consulting with both of them, I have started the Mitotane treatment. My endocrinologist will primarily be monitoring my blood pressure, cholesterol, and thyroid. My cholesterol and thryoid seem to be under control, but he said it was a good idea to continue taking the medicine for them just as a precaution. My blood pressure is still running slightly high so he increased the dosage (he said the dose MDA put me on was "wimpy") and said to email him a few times a week with readings I take at home and he can adjust the dosage accordingly. In addition, he has started me on Prednisone. which is a hormone replacement since my body will stop making it on its own once the Mitotane gets in my system and suppresses the adrenal function.
My oncologist has started me on the Mitotane again as well. She's started me on a slightly lower dose than MDA recommended, but I will increase the dose every 3 or 4 days as long as my body seems to be handling the medicine. I am scheduled to see her in two weeks, on June 1. She will do blood work and check my levels, and basically see how everything is going. In addtion, I am scheduled to get both a PET scan and CT scan done next friday, May 27. I haven't had a PET scan since January 2010 when they discovered the cancer had returned. She's not looking for anything specific, but my last CT scan was at the beginning of April so she wants a fresh scan that she can also use as a baseline for this treatment.
As weird as it sounds, we're excited to get this treatment started. We are praying that my body tolerates the medicine well and that there are miraculous results!! Thank you once again to all of you that have kept us in your prayers and as usual, we will keep you updated!
My oncologist has started me on the Mitotane again as well. She's started me on a slightly lower dose than MDA recommended, but I will increase the dose every 3 or 4 days as long as my body seems to be handling the medicine. I am scheduled to see her in two weeks, on June 1. She will do blood work and check my levels, and basically see how everything is going. In addtion, I am scheduled to get both a PET scan and CT scan done next friday, May 27. I haven't had a PET scan since January 2010 when they discovered the cancer had returned. She's not looking for anything specific, but my last CT scan was at the beginning of April so she wants a fresh scan that she can also use as a baseline for this treatment.
As weird as it sounds, we're excited to get this treatment started. We are praying that my body tolerates the medicine well and that there are miraculous results!! Thank you once again to all of you that have kept us in your prayers and as usual, we will keep you updated!
Monday, May 16, 2011
UAB Doctors appts scheduled
Carrie finally got in touch with her oncologist at UAB... sort of. Carrie called today to see if her doctor got the email from last week about the treatment plan, and this evening her doctor finally emailed back. She hadn't received the email from Carrie's doctor at MDA about the treatment plan, but was able to squeeze Carrie in to see her at UAB this upcoming wednesday. Carrie was able to explain enough of the new plan through emails to inform her doctor of everything and she seemed to be in agreement. So Carrie will meet with the oncologist, as well as her old endocrinologist, at UAB this wednesday, May 18. Hopefully, they will be able to figure out the exact schedule for this treatment and get everything started! We will keep you updated wednesday evening about what happens wednesday.
Wednesday, May 11, 2011
FINALLY!! Some promising news!!
Well, it looks like this trip to Texas may not have been a wasted trip after all. I met with the gastrointestinal doctor this morning and liked her immediately. And the first thing she said to me after she introduced herself was "Why haven't you been sent to see me before now?!?!" Apparently, she is and "expert" in ACC and is pretty much the doctor to see at MD Anderson for ACC. She has seen over 300 ACC patients in the past few years, and said that on her clinic days, there are usually 2 or 3 patients in the waiting room with ACC. (Now why NOBODY has referred me to her in the past year and a half since I first came to MDA is beyond me, but we're just glad we finally got in contact with her). She spend about 45 minutes talking to us and went over all of the regular protocols for treatment of ACC, in order of most effective. She agreed with the treatments I had previously had for the most part. However, Mitotane is still considered the standard of care. She explained that patients typically take 3 grams of Mitotane when the disease is not evident (i.e. after it has been removed surgically, which was my case when I initially started the mitotane). After the cancer returns, however, the dosage of mitotane is supposed to be titrated upwards until it reaches a level of 14-20 in the body. At that level, she has seen stablization of tumors and in a few instances, some shrinkage. When I was on the mitotane initially and the cancer returned, we didn't increase my dosage, which could be why we didn't see good results.
That being said, the GI doctor recommends we try the Mitotane again, this time starting at 3 grams/day, and increasing my dosage every week until the mitotane level in my blood reaches 14-20. She said depending on how my body absorbs the medicine and how bad the side effects get, it could take UP TO 3 months to reach that level.
In addition, she told me about 5 different chemo regimens that could be used in conjunction with the mitotane. This step would only be taken if there was a delay in getting my mitotane level up - they would essentially use the chemo to buy me some additional time to allow the mitotane to get to the desired level.
Needless to say, we were very pleased with this news. We found out we still have some options to try and there is still hope! And this would allow me to do treatment at home in Alabama!! The GI doctor seemed very willing to collaborate with my oncologist at UAB in helping monitor and conducting this course of treatment. And I can still come out here for check ups in the meantime if need be. I've emailed my UAB doctor and hope to get in touch with her in the next few days and hopefully start next week.
Obviously, we hope this treatment works. The doctor did emphasize that this is not a cure for ACC. But the hope is that the mitotane turns this from a life-threatening disease into a chronic, manageable disease that I can live with. If this treatment doesn't work, she did say I could still potentially participate in the clinical trial that's currently on hold if/when it becomes available in the future. In addition, she was aware of the Phase III trial that's being conducted at Vanderbilt (the one I didn't qualify for) and said they were making quicker progress than initially expected. Apparently, they've had more participants join faster than expected and showing good results, which is great news because that means it's close to potentially being available as a standard of care!!!
Overall, we were VERY pleased with the doctors today and the news they gave us. It's very upsetting that we weren't put in touch with the GI doctor sooner, but feel very blessed to see her now. (BTW I also met with the endocrinologist and he basically agreed with this treatment plan). The most important thing is now we have hope - we have something to try that seems promising and we know that we aren't at the end of the road. We were starting to get discouraged from running out of options, but now we have options! So thank you to everyone who said a prayer for us these last few weeks. They really do make a difference!! As long as my oncologist at UAB agrees with this treatment (which I have no reason to think she won't), hopefully things will start going within the next week. I will keep everyone updated as soon as I hear something!!
Oh quick side note... because my blood pressure is so elevated and my ankles swollen, the doctor today decided to draw blood to check my hormone levels to see if that could be causing either of those symptoms. It will take about a week to get all the results back so I should know by the end of next week about that. I'll of course keep you updated!!
That being said, the GI doctor recommends we try the Mitotane again, this time starting at 3 grams/day, and increasing my dosage every week until the mitotane level in my blood reaches 14-20. She said depending on how my body absorbs the medicine and how bad the side effects get, it could take UP TO 3 months to reach that level.
In addition, she told me about 5 different chemo regimens that could be used in conjunction with the mitotane. This step would only be taken if there was a delay in getting my mitotane level up - they would essentially use the chemo to buy me some additional time to allow the mitotane to get to the desired level.
Needless to say, we were very pleased with this news. We found out we still have some options to try and there is still hope! And this would allow me to do treatment at home in Alabama!! The GI doctor seemed very willing to collaborate with my oncologist at UAB in helping monitor and conducting this course of treatment. And I can still come out here for check ups in the meantime if need be. I've emailed my UAB doctor and hope to get in touch with her in the next few days and hopefully start next week.
Obviously, we hope this treatment works. The doctor did emphasize that this is not a cure for ACC. But the hope is that the mitotane turns this from a life-threatening disease into a chronic, manageable disease that I can live with. If this treatment doesn't work, she did say I could still potentially participate in the clinical trial that's currently on hold if/when it becomes available in the future. In addition, she was aware of the Phase III trial that's being conducted at Vanderbilt (the one I didn't qualify for) and said they were making quicker progress than initially expected. Apparently, they've had more participants join faster than expected and showing good results, which is great news because that means it's close to potentially being available as a standard of care!!!
Overall, we were VERY pleased with the doctors today and the news they gave us. It's very upsetting that we weren't put in touch with the GI doctor sooner, but feel very blessed to see her now. (BTW I also met with the endocrinologist and he basically agreed with this treatment plan). The most important thing is now we have hope - we have something to try that seems promising and we know that we aren't at the end of the road. We were starting to get discouraged from running out of options, but now we have options! So thank you to everyone who said a prayer for us these last few weeks. They really do make a difference!! As long as my oncologist at UAB agrees with this treatment (which I have no reason to think she won't), hopefully things will start going within the next week. I will keep everyone updated as soon as I hear something!!
Oh quick side note... because my blood pressure is so elevated and my ankles swollen, the doctor today decided to draw blood to check my hormone levels to see if that could be causing either of those symptoms. It will take about a week to get all the results back so I should know by the end of next week about that. I'll of course keep you updated!!
Tuesday, May 10, 2011
Tuesday, May 10, 2011
I met with my regular doctor out here at MD Anderson yesterday (monday) and he told me that the clinical trial they wanted me to participate in is still in the process of being approved for the changes so that's still on hold. Unfortunately, he doesn't know of any other trials currently available for me to try. He has referred me to an endocrinologist and gastrointerologist(sp?), both of which have experience with ACC. I will meet with both doctors tomorrow (wednesday May 11) to see if they have any treatment options for me to try. We're praying they do... if not, we're going to really have to figure out what steps to take next. I will be flying home tomorrow night.
My blood pressure is still staying high, even on the blood pressure medicine. In addition, my legs, particularly my feet and ankles, have been swelling a lot, which is apparently caused by the high blood pressure. They have switched my blood pressure medicine in hopes of lowering it some more and helping with the swelling. I'm still having pain in my abdomen, and it's gotten slightly worse over the last few days. I'm still taking a mild pain medication for it, but it makes me drowsy so I don't take it all the time. The doctors said to monitor my pain level and if it gets worse, let them know and we'll see what else we can do.
We will let you know what we find out from the doctors tomorrow, so you can look for an update wednesday evening, thursday morning at the latest. Please continue to pray something opens up for me to try!
My blood pressure is still staying high, even on the blood pressure medicine. In addition, my legs, particularly my feet and ankles, have been swelling a lot, which is apparently caused by the high blood pressure. They have switched my blood pressure medicine in hopes of lowering it some more and helping with the swelling. I'm still having pain in my abdomen, and it's gotten slightly worse over the last few days. I'm still taking a mild pain medication for it, but it makes me drowsy so I don't take it all the time. The doctors said to monitor my pain level and if it gets worse, let them know and we'll see what else we can do.
We will let you know what we find out from the doctors tomorrow, so you can look for an update wednesday evening, thursday morning at the latest. Please continue to pray something opens up for me to try!
Wednesday, May 4, 2011
MD Anderson... again
Sorry for all the back and forth, but Carrie found out Tuesday morning that her doctor at MD Anderson would like to see her at the beginning of next week for a consult. His administrative assistant called Carrie to set up appointments. Carrie asked her if the doctor found some other trials she can try, but all the assistant really knew was that the doctor wanted to consult with her about her options. So we don't know what exactly that means. That being said, Carrie will meet with her regular doctor out there Monday, May 9. She then has a follow-up appt with her pain med doctor Tuesday, May 10. Finally, she has 2 appointments Wednesday May 11 - one with a gastrointerologist and one with an endocrinologist that "specializes" in patients with ACC. All we really know right now is that these are just consults-we aren't sure what information they have for us. So Carrie will be flying out to Texas (I will not be going with her) Sunday afternoon, and flying back home late Wednesday night. We are hoping after these appts next week, we'll have a better idea of what our options are, and finally begin to look toward what the next step will be. We will keep everyone updated next week as we get information. Thank you all for your diligent prayers!!
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