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!!

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!

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!!

And back to square one...

Carrie may not be going back to Texas after all... at least not immediately. She emailed her doctor at MD Anderson today since she had not heard anything since last week. Shortly thereafter, she received a phone call from the trial coordinator and was given some new developments with the new clinical trial Carrie was going to participate it. Apparently, the drug company sponsoring the trial has decided to increase the dosage of the medication (for whatever reason, which we don't know), as well as change a few things, such as different tests they want to run and the amount of blood they would draw. As a result, all of these changes have to be approved by some board and these changes usually take at least a month to be approved, if not longer. That being said, there is no way of knowing when Carrie would be able to start this trial. She still has a spot in the trial and once the changes are approved, she would be able to start. Her doctor, however, is concerned about Carrie possibly going for an indeterminable amount of time without ANY type of treatment in the meantime. And unfortunately, Carrie's doctor doesn't know of any other current trials that she could participate in. He suggested Carrie get in contact with her oncologist from UAB and see if there were any other options there.

So it seems we really are back to square one. We were optimistic about this new trial, but we are concerned about going without treatment for what could turn out to be weeks or even months. The only other option would be to start taking the Mitotane again. Carrie emailed her doctor at UAB this afternoon and will hopefully hear back from her early next week. Until then, we're just going to pray something opens up and we can get back on track. We will update everyone as soon as we hear something.

Back to Texas we go...

Well, it looks like Carrie will be participating in the new clinical trial at MD Anderson sometime in the next coming weeks. After looking into the trial at Vanderbilt, she doesn't qualify to participate because she has had too many prior treatment protocols. So we've decided to give this new trial at MDA a shot. She has to contact the trial coordinator and figure out scheduling and all the other details, which we hope to have figured out by middle of next week. If everything goes as we're suspecting, she will start around the 2nd week of May. It will be very similar to the trial she just came off of, with once weekly infusions. She'll meet with her doctor every 3 weeks and get scanned every 6 weeks to see what kind of progress she is making.

She has been home since last Thursday and has really enjoyed spending that time here in Auburn without having to travel. The pain she was having last week seems to have subsided. She's still experiencing some mild to moderate stomach discomfort, but the medicine they gave her last week seems to help somewhat. The doctors said from the scans it appears a tumor is pressing up against something, causing the discomfort, but hopefully it won't get any worse. We are still monitoring her blood pressure - it's come down a little bit, but it's still running high so they'll keep her on the medicine for now. Other than that, she's feeling a little more tired and run down than usual, but she's still being as active as possible. We're trying to keep our spirits up and pray that this new trial brings miraculous results!

We will of course keep everyone up to date once we get more details regarding the trial. And as always, thank you all for your continuous thoughts and prayers.

Last update from Houston (for now)

Carrie met with Dr. Naing today and the last treatment that Carrie had (last Wednesday) was her last treatment for this trial since the tumors are still growing. We found out today that Carrie has been accepted into the new trial that just started at MD Anderson. We also mentioned to the doctor about a trial that is currently going on at Vanderbilt( Thanks LeAnne). He said that it would be a good idea to look into that trial. I will discuss the two trials in a second but first, Carrie and I will be driving back to Auburn tomorrow and will be there for at least 3 weeks. The three weeks will allow her body to get rid of the current chemotherapy.

So now for the trials:

Vanderbilt - Phase 3 trial double blind placebo controlled and is given orally. It is targeted specifically for ACC. That is all we know about it at this time. We will be getting more information about it in the next couple of days and I will update the blog when get the details of the trial.

MD Anderson - Another phase 1 trial. It will be given through IV. Drug is not targeted toward a certain cancer. We do know that one patient at MD Anderson had ACC and after the first cycle showed that the cancer cells appeared to be dying. They were taken off of the trial due to a side effect that may or may not be related to the chemo. So far there have not been any side effects that are usually associated with chemotherapy (hair loss, nausea, vomiting). The drug will be given once a week for six weeks and then Carrie will get a CT scan. If we decide to do this trial, Carrie would start treatment no earlier than the first week of May.

Side notes - Carrie has had elevated blood pressure for the last couple of weeks and was perscribed high blood pressure medicine (Norvasc) to help stablize it. They were not TOO concerned but want to keep it under control. Carrie experienced some pain in the right side of her abdomen starting yesterday (Tuesday) and lasted through the night. She felt better this morning and the doctor thinks that it caused from the tumor being up against a nerve. They gave her a perscription for a high dose of Lortab.

That is all of the information that we have right now and will let everyone know once we get more info. Thanks for everyone's thoughts and prayers through this trial.

Stay tuned......

Hematologist Results

I met with the hematologist at MD Anderson Tuesday to address the blood clot my doctor saw from my last scan. And the good news is that I do NOT have a blood clot! He pulled up the images and although it appears to look like a small clot, the hematologist said it was part of the tumor that has worked it's way into my blood vessel. He called it a tumor thrombus, and that small pieces of the tumor have sort of congregated together. So they are obviously not going to put me on blood thinners since there is no clot to worry about!

On a quick side note, I had treatment #3 of this cycle this week and my blood counts were great once again! I haven't had to get neupogen injections in 3 weeks now!! :)