Sep 7, 2010

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.



Brea said...

Thanks for so boldly sharing your journey!

Eric said...

geez, after all those pills how do you find room in your stomach for food?

Su Wang said...

Crazy number of pills! I bet they love you as a patient; organized, compliant and good humored.

Glad to hear you didn't have to pay $11,000 for the pills!! And we are happy to pay taxes if they go to help public servants like you!