Feb 1, 2011

First Trial Ends, Back to MDACC for Other Options

Holly and I made the trip back to MD Anderson in Houston last week for my every other month checkup while on the trial. For some reason I had a feeling this was different, and I was right. When we started the trial, one of the guidelines was that if the tumor grows 25% larger than it was at the start of the trial, we must stop the trial. We found out that we are now at that point, and we have to stop this trial. I have to say, I don’t know why, but I had a feeling this was going to happen. Now, stopping the trial is not necessarily a bad thing. First of all, I don’t have to take gobs of pills everyday now! Another plus? I’m regular again and don’t have to rely on stool softeners and fiber to counteract the drugs every other week! (I know, gross, but you don’t know what this means to me.) Lastly, they don’t know for sure, but even though the tumor is still growing, the drugs may have slowed its growth. So they got some data from me for the trial and that’s a good thing. I hope it is useful for someone down the line.

Where do we go from here? Last week when we visited with my Neuro-Oncologist, Dr. Conrad, we discussed the MRI. They are unclear of exactly what they are seeing. It could be tumor, necrosis (dead tissue), cystic tissue or something else. He believes that at this point the best thing to do would be to perform a biopsy of the tumor to find out exactly what they are dealing with so that it can be treated properly. After that there are several options available:

  • Virus trial, where a reengineered virus is inserted directly into the tumor, the virus eats the tumor, stops at brain tissue and then dies. I wrote more about this trial back in June, check it out.
  • There is one chemo treatment option that is new that I can’t remember if it is a trial or not and another that is a trial that Ii think is not quite available yet; both are IV chemos.
  • Lastly, all out surgery, which we are trying to avoid.

We have an appointment to see my neurosurgeon, Dr. Lang, tomorrow (2/2/11) at MD Anderson to talk all of these over and see where we go from here. As soon as we know what’s going on, I’ll let you, our faithful readers and supporters know.

I wanted to share some stats and images with you so that you can see where how things are progressing.

First of all, I decided I'd make a table so that I could see for myself how the tumor is growing. I know it sounds weird, but I need to know these things and thought it would finally be good for me to put it on paper. I did it in Excel but can't make a table in HTML to save my life, so I took a screenshot. All the measurements are in millimeters and I took them from all the Radiologist Reports I get from each MRI. As you can see, even with the medications there has been pretty steady growth, but to the doctors, they see it as slow growth.

Next, I wanted to share two sets of MRIs. The first was taken at MD Anderson on Jun 1, 2010. The tumor is still fairly small and compact. Click each one to see a larger version.:
Brain MRI - June 1, 2010
Last, here's the latest MRI from last Monday, Jan 24, 2011. As you can see, there are some areas of black that have a white border, they think those might be cysts, but just are not sure:
Brain MRI - January 24, 2011
I just noticed that the images from last week are a bit darker, but i think you get the point. There are definitely some changes and the doctors want to know why it looks the way that it does. So, off to Houston again tomorrow. We'll let you know what the plan is soon.

Thanks again for all your prayers and support.



Anonymous said...

That is your BRAIN!! You know, 100 years ago, that wasn't possible. Remarkable. I'm truly in awe. And the tumor inside it? Makes me think of something out of a spy movie (but then again, I would live in a spy movie if I could). How that makes sense to anyone else other than me, I have no idea. But still, this is remarkable technology as well as the fact that that thing is in your brain. We're gonna get it out! Pretty sure that will be even cooler. Thanks for the update, love you guys!

Amanda said...

Thanks for updating us! That brain looks awfully familiar. As for the first comment about them getting the tumor out, we know you will be photographing and documenting it all the way in true Mommaerts fashion. :) We miss you and love you and know God is with you. We will keep watching and praying.

Deresa said...

Wow. I always think that when I read your updates. You and Holly have such sweet spirits. I am always surprised by the stride that you take everything. You guys are amazing people. I appreciate you and Holly both sharing what you think, feel and know about your experiences. Someone like me, who has never met you in person, still gets to feel close to what you are going through in such a personal time. Thank you for being open with everyone. Even though we have never met face to face, I still feel like I've gotten to know both of you. You are beautiful people. God bless you. My husband and I pray for you both. He knows who you are even though you guys have never messaged. God bless you.

Dahlstroms said...

Lifting you in prayer today.