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.

-Roger

One Month Clinical Trial Check-up

From Holly: As we drove into Houston, I saw all the buildings flying past us and I just got this overwhelming feeling because of what we were doing there and why we were going there. And I just stopped reading to talk with God to myself asking him to help me not worry about today or tomorrow and just live every day, day by day and asking him to help me be the best wife I can be, patient & understanding & there for roger as much as I can. I had a few tears which made my nose run and I used all the napkins we had in the glove box. Le sigh.

From Roger: Wow, Holly is making me follow up her post with mine. No tears, sorry. Yes, so we had our one month follow-up. This was basically to see if my blood cell counts are okay and if so, to increase the chemo dosage. They didn't increase it a whole lot, but this may mean more stoppage while on the chemo and more fatigue. I snapped a picture of my daily regimen for you to admire. The first set of pills on the left are called Lapatinib. Each one of those orange monstrosities are 250mg of signal inhibiting goodness. This is the experimental drug that they have been using again breast cancer and certain types of melanomas. It has been promising for my tumor. I can't eat anything for two hours before I take these and for one hour afterward, so I just get up in the morning and take these first thing and don't eat anything for an hour. My experience so far with these has been okay. These leave me a little loose and I end up having diarrhea a few times a week. Other than that, they're not bad so far. The next row over are my daily 10am pills. Starting from the top is Depakote ER, then two Keppras, both anti-seizure drugs. Below that an allergy pill, kinda like Sudafed-D, but free (thank you taxpayers!) And lastly a multi-vitamin. I've been looking into taking better multivitamins and supplements from USANA, but more on that in another post. The next row to the right are my nightly 10pm pills - same anti-seizure pills that I take in the morning. And last but not least, the chemotherapy pills, Temodar. Everything else but these I take every day. One cycle of therapy is 28 days. I take the Temodar on days 1-7 and 15-21. I have to take them at night but only two hours after eating and then nothing afterward for one hour. In addition, I also take an anti-nausea pill called Zofran (the litttle pill to the left of the Temodar capsules) thirty minutes before I take the Temodar. I have not really had any issues with the Temodar yet except for constipation, but I have been able to combat that with a stool softener, like Colace. They warned me today that with the increased dosage I might be more constipated and might feel more nausea, but we'll see. I'm glad I got the constipation thing pretty much figured out with the Colace, because that was a rough first week.. I mean, have you ever pooped rocks before? It hurts... trust me.

Sitting in the waiting room at the pharmacy was boring as usual today... annoying people with their cell phone ringers going off all loud, phone conversations going on, being called to the desk only to be told to keep waiting because the insurance wasn't finalized yet. One thing caught my attention that I kept hearing though was the pharmacy clerk tell patients what their co-pays were for their meds... $40, $60, $100.. then I look at mine. $9 for 28 days of pills per prescription. Did you hear me? NINE! And that's at a pharmacy!! If I go through the mail order pharmacy it is only $3. The whole picture does not come into focus until you look at the bill for the drugs I picked up today. The Lapatinib is a trial drug, so it is provided to me for free. But the Temodar is not. The total cost for two bottles was $12,300.60. Wait!! What?? Yeah. So, as you may or may not know, the US Army Medically Retired me, so I have Tricare for insurance and the government foots most of the bill. Now, they never pay full price. It looks like they are only paying $8397.60. I am paying $18.00 Why am I sharing this? Because I want to thank you. I want to thank you for not only paying your taxes, but for supporting those that are still serving and those of us that served. It is because of you that I have this chance at life. I was pleased to hear that last week Operation Iraqi Freedom was finally ended. Most of our soldiers there are now in a support role. I met a lot of guys that were injured in Iraq when I was at Walter Reed in Washington, DC and I'm glad that very few, if any, will have to suffer through hell there again. I'm not saying that I didn't support the purpose of going there, but there were some things that the leaders above didn't do right. They failed the men and women on the ground in many ways and I'm glad that they are taking care of the ones that need it. I have no idea where I am going with this, so I'll just end it here. Thanks again to everyone for your prayers and thoughts. We love you and will continue to update you.

-Roger

Clinical Trial Risks & Side Effects

Okay, part of this is so T.M.I., but we need prayer people. So you have been warned.

Roger received a sixteen page document last Friday from MD Anderson regarding the clinical trial. It consisted of the informed consent and authorization to be a participant in research, a description of the research, a description of the study, potential benefits, alternative procedures or treatment and all the signature pages. Seven of the sixteen pages just covered the risks, side effects and discomforts to the participant of the clinical trial. Roger told me about one particular risk when he got home Friday which threw me for a loop for a bit. Then I sat down and actually read through the whole document. As I was reading through the pages and pages of risks and side effects and stating them out loud as I came across really “interesting” ones, I actually said to Roger, “Have you read this? And how do you feel about all of these?” There were definitely some scary ones.

But one threw us off the most. It was the risk Roger told me about when he got home from work. I kind of went off the deep end for a little bit. You see Roger and I have been praying since last year, okay, me more than Roger, about me getting on board with having a baby. Roger has been more ready than me since he had his first craniotomy in 2006. After he went through paralysis, living in a rehabilitation hospital to learn to walk and function normally again then 30 days of radiation, he told me he thought he wanted to have a kid and did not want to miss out on that experience. We had always felt like God had used us for many things and when it came to having children if God wanted to use us that way he would make it happen and we were fine with that. We both had not felt the passion yet to have children so we both agreed if we had kids we did and if we didn’t have kids we didn’t. No biggie until he shared this with me. So I told him at the time, “When you are really ready, let me know.” A few years pass and we are both finally back in Texas and decide to build a house. One month after moving in, Roger looks over at me and says he thinks he’s really ready now. And the praying began for me to get on board with that. Obviously more praying by me of course. I read a couple pregnancy/childbirth books last summer. And this past February we met with a midwife. That’s when I felt a tiny bit excited about the process. And since then have been praying for God’s direction on timing, etc. We thought we had a plan of me getting off birth control in June, watching for signs of ovulation for a month to make sure my body was all ready to go and begin the trying in August. Then at the end of February we found out about the questionable MRI results. We began to pray about and deal with that and also asked God to direct our plans for pregnancy. We didn’t know what we should do: go with our plan, start right away or put it all on hold. There were so many factors of Roger’s yet unknown treatment affecting what we should do. Was it tumor growing back and would he have surgery and be paralyzed permanently or worse coma or death? Would he have to have radiation or chemotherapy after surgery or in place of surgery that could affect his fertility? Or was it radiation necrosis and what the heck do you do with that? These are the wonderful things you get to think about and discuss with your spouse when you have cancer. Twice.

We knew we couldn’t make any decisions until after we went to MD Anderson. After we met with the neurosurgeon at MD Anderson in May, we thought our only option was surgery and we still couldn’t make a decision until we met with the neuro-oncologist. The Thursday before we were scheduled to meet him, we were hosting our weekly neighborhood dinner at our house. Roger and I were standing in the kitchen prepping for grilling pizzas with 10-12 of our favorite people, talking about anything and everything. And Roger says to me, “Why are we waiting? Why don’t we just start trying now?” So I said okay. I was already at the end of my birth control packet and would just not start the next one. The following Tuesday we meet with his neuro-oncologist who gives us three more possible options before surgery. So we think great, we have time. Thank goodness we started now. I specifically asked him will the drugs in the clinical trials affect Roger’s fertility and he says basically it could and we should look into banking some sperm. We had already discussed this option but were thinking we had plenty of time and could even keep trying while he was doing the clinical trial. Roger took the blood tests required for it the week before we went to see the neuro-oncologist just so that part of it was done.

Then Friday we get this sixteen page document and it clearly states at the end of the risks, side effects and discomforts paragraphs in its own little section that not only should he not father a child while on the study but he should not father a child for six months after the last dose of the study drugs and must use birth control. If his tumor responds to the study drugs he could be on the study for up to two years. What? I just got on board with having a baby and this happens?! The acceptable forms of birth control are birth control pills and/or condoms. Great, I just got off birth control pills. And if your partner becomes pregnant you must tell the doctors right away. Nice. There goes our chance of trying while he’s on the study and gives us about a month and a half at the most to try to get pregnant naturally. If we don’t conceive before he starts the study, he’s got to bank some sperm and then we can start the process of conceiving via artificial insemination or invitro fertilization. Two things I never thought I would have to do. Neither fun nor cheap. At this point I’m thinking I have to get pregnant before he starts the study because I don’t want to take the chance of getting pregnant while he’s on it for fear of what it would do to the baby. So for Roger’s sake, we better get pregnant before because I don’t think I want to have sex while he’s on the study if I’m not already pregnant. Poor Roger. So we are asking for prayer for us to conceive before he starts the study, for protection from all the risks, side effects and discomforts, for peace and strength to continue to make it through this, and that we seek God and glorify Him in everything.

Thank you, Holly.

Possible Clinical Trial

If you have not read our last blog, take a look at it now before you read any further or you might be a bit lost. You can find it here. Holly and I went over our options again yesterday and think we know what we’d like to do as long as Dr. Lang is in agreement. So after that, we set out to Minute Maid Park to watch the Houston Astros take on the Washington Nationals. The beginning of the game was a little boring, but the end was fantastic. Bottom of the 9th, 2 outs, 2 men on base and Astros are down with a score of 6-7. We thought all hope was lost, but then Lance Berkman singles to left and two runs come in to win the game. It was pretty cool… literally too! They closed the roof and turned on the A/C, so it was actually pleasant to be there. We thought we were going to sweat like crazy in the humid evening air, but it turned out to be a great evening after all.

Today we were scheduled to see Dr. Lang, my Neurologist, at 2:45pm; but we got a call yesterday asking if we’d be interesting in moving the appt earlier so that we could leave town earlier and we gladly said yes. We got there at 11:30am and finally saw him at 12:30pm. It would have been sooner, but their paging system was down and they had a tough time letting him know we were ready. It’s okay though… I had fun lounging on his recliner in his exam room and playing with the tools they use to show things to patients… my favorite was the brain I could take apart and put together and wouldn’t you know it, he walked in just as I got it apart. I put it together again though pretty fast. Seemed kinda easy; just saying.

Anyway, he said that he had spoken to Dr. Conrad, my oncologist, regarding the trials and explained each one to us. He agreed that the Lapatinib and Temozolomide trial is worth trying. The Delta-24 trial is really only for people that have a grade 3 ependymoma. They don’t know if my tumor is now a grade 3 and the only way to find out is to do a biopsy by cracking me open. But if they are already in there they might as well remove it, so it is a catch-22. There are some other factors for that trial that make it a not so great fit for me, so for now, that one is off the table. The last trial, 744, he didn’t know about, so that too is off the table for now. He feels that in the end, the tumor will have to be surgically resected (removed), but since it is so slow growing, the first trial is worth a shot.

So that was it. Decision made. They notified Dr. Conrad that we are interested in the Lapatinib and Temozolomide trial and we should be hearing back from them soon. Apparently we will have to go back to MDACC again to again meet with Dr. Conrad to talk about the trial and all the specifics behind it. I am hoping it is as soon as next week. If we start the trial in the next weeks, at the end of the two rounds of the trial, if no progress is seen and the tumor needs to be resected, it will most likely happen no earlier than August 2010. This will allow us to make all our trips we scheduled this summer! I might feel like crap, but we’ll get to be with friends and family, which will be a huge blessing.

A few last notes… To be sure that this tumor was an ependymoma, MDACC wanted some slices of the tumor sent to them from Washington, DC. I put in the requests to the DoD in DC and MDACC got them, examined the slides and agreed that the tumor was an ependymoma, grade 2. Also, the MRI from yesterday revealed that the tumor has grown a bit more, just 1-2mm in three months, which is slow.

I'll let you know when we have anymore news. Thanks for the prayers and support.

-Roger