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!! :)

A little more info...

Not much to report, but I just wanted to give a little more info about the next few upcoming weeks. We only have 2 more treatments of this cycle before I get scanned again. Treatment #3 will be this wednesday, March 30 and the last one will be the following wednesday, April 6. I will then get scanned the following Monday, April 11. Jason and I will be flying out to Texas the morning of the 11th and will be staying through Wednesday April 13, where we will meet with my doctor to get the results. If these last 4 treatments show continued growth, our understanding is I will no longer continue with this trial. We still don't have any information on the other trial they hope to involve me in, but hopefully we'll get some soon. As of right now, we are tentatively planning on returning to Auburn after the 13th for at least the 28 day "washout period" required between trials.

Also, we failed to mention after the results last time that the scan showed what appears to be a small blood clot in one of my blood vessels. If I remember correctly, I believe it was in my superior vena cava. The doctor said it was very small and doesn't appear to be causing any problems. He is, however, referring me to a hematologist there at MD Anderson to determine if they will put me on blood thinners to try and dissolve it. I will meet with that doctor tomorrow, Tuesday 3/29, and let everyone know what we find out.

We are doing pretty well overall and trying to keep our spirits up! We still aren't sure what we're going to do about this other clinical trial, but we're hoping to get some more information on it soon so we can figure everything out. In the mean time, I am REALLY looking forward to being able to spend 4 weeks at home in Auburn... there's no place like home :)

Cycle 6 results

We met with the doctor today and wish we could have gotten better news. The growth this cycle was 8% which brings the total to 16% since she started the trial. We were told the trial has only slowed the growth but that it is not stopping it. He suggested that we do one more cycle (4 weeks) and then we will do another scan and if nothing changes this will be the end of this trial. There is a possibility that there might be another trial opening up in a couple of months that Carrie might could get into but not to get our hopes up as it is a brand new trial. After this next cycle Carrie will be back in Auburn for at least 28 days and then we will decide whether or not to continue with the next trial (if it available).

Results Coming Soon

Well, we are nearing the end of this cycle. We took a week off from treatment this past wednesday and instead spent the week in the Smokey Mountains with Carrie's parents and brother. And it was such a great break from the usual routine of traveling back and forth to Texas. It was a much needed break and hopefully will rejuvenate us for a while.

Now it's back to the grind... Carrie will fly back to Texas this Tuesday and have her last treatment of this cycle on Wednesday, March 9. She will then have her CT scan done Thursday morning, March 10. I will then be flying out to Houston the following week on Tuesday, March 15. We will meet with Carrie's doctor for the results of the scan on Wednesday, March 16, and pending a good report, she will start the next cycle of 8 rounds that afternoon.

We have been doing this trial for 6 months now and it's really starting to take it's toll on us. We've been very fortunate that Carrie has been able to travel back and forth as much as she has. The only side effects she's had have been decreasing white blood counts. Thank you all for your continuous thoughts and prayers. Unless something happens, we will let everyone know the results next Wednesday, March 16.