I'm Back in the Saddle Again

Some people prefer a poolside palapa, the warm sun, a refreshing cocktail with an umbrella, and a waiter in a speedo. Call me eccentric, but as I write this, I'm kicking back at Chalet de MDA in a hospital bed, being hydrated with IV chemo, covered with warm blankets, and being waited on by my adoring husband. That's right, the clinical trial has begun and I'm currently sitting for my second dose.

We got to Houston on Sunday night and started appointments of Monday. My numbers were a bit low on Monday, but Dr. No Naps and I were very excited about starting the chemo on Tuesday and assumed that my numbers would improve in time to get it all going. Our research nurse, who handles all of the study protocol, is named Nurse B. I'm sure her name has an enormous number of syllables that most Americans can't remember, so she just goes by "B." My private nickname for her is "Aunt B" since she's the one who takes care of us on this clinical trial. Plus she's caring and nice and always returns calls with answers to questions. Plus she laughs at my jokes so that makes her awesome.

Remember, this is a clinical trial. That means that they are treating me with a drug that has not been used much, has not been FDA approved for open use, and is not entirely understood. Therefore, they have to continue to collect data on the patients using it. This makes being in the clinical trial both exciting and frustrating at times. I mean, this is a major ego boost. First, I get to feel special to be one of the first hundred people being treated with this promising drug PLUS I get the extra boost from the thought of being the guinea pig for the advancement of knowledge on treating unmethylated GBM. The frustration just stems from the normal stuff like working out kinks, experiencing side effects, etc., but don't think I didn't thoroughly check this out before I let them put me in the study.

This drug is called VAL-083, has been approved in some countries, and has been through a series of clinical trials in Canada (at least). I read everything I could get my hands on and the results look promising. So, basically, for those who don't remember, GBM is bad but unmethylated GBM is worse because unmethylated cancer cells can repair damage caused by treatment. This drug attacks the guanine at a point where the cell is hindered from repairing itself. So, in layman terms, it sounds like this drug makes the unmethylated cancer cell behave like a methylated cancer cell and prevents it from repairing itself. The hope is that the cancer cells will off themselves (called apoptosis) instead of repair themselves and become resistant to treatment. All study results I could find appeared to show a benefit and, along with the ketogenic diet, I'm feeling good about this. 

On Tuesday, we got to the hospital at around 8 AM for the blood draw with the expectation that my first dose would begin around 9:45. We were told that the first dose would be a six hour ordeal because the infusion lasts 1 hour, followed by a series of blood draws to check how I am metabolizing the drug. We sat impatiently in the lobby of the clinic where the infusions are given and then I get a call from Aunt B saying that my numbers were still not at the cut-off to start the treatment. Mine were 2.3 and the cut-off is 2.5. I offered to sign a waiver and she said she would appeal to the sponsor (the pharmaceutical company) to allow it. Apparently both I and Dr. No Naps were putting pressure on her to get me started on Tuesday. A little later I was called back, put in a bed, and we started getting ready. Aunt B called again and said that our appeal was not approved because my neutrophils were not at the 2.5 cut-off and they were concerned about adverse side effects. We quickly looked up some studies on how to spike and learned that vigorous exercise helps. We mentioned this to the infusion nurse, who stated that they do sometimes have patients walk around a bit and this has sometimes helped. Aunt B was very skeptical but she reluctantly agreed to put in another blood draw order, told me to go run around the hospital, get the blood work done, and call her when it was done. I felt myself feeling challenged by the tone of disbelief in her voice. We went to get some food, then we ran up 10 flights on stairs, then I ran up and down the hallway after checking in at the blood center. By run, I don't mean we ran like 19-year-old ninjas. We ran more like middle aged cancer patients because that's more our speed. The lab technicians were laughing but said they have seen this before, one guy had come in doing jumping jacks. I was just doing squats and running in place. So we did the blood draw and went back to sit at the infusion clinic. I started to doubt us. What if we should have done 5-10 more minutes of exercise? Had we quit too soon? I didn't want to wait another week! And then we just sat there and waited...

...I went to the restroom and that's, of course, when Aunt B called. She said, "I have good news! It worked!" Well, of course it worked! Because I was DETERMINED! I have to admit that on the one hand I was all, "I'm awesome" and on the other hand I was lamenting the lesson that exercise really is the answer to almost everything. I guess I'm back to trying to prioritize exercise (damn it). By this point it's late in the day and we go back to get settled into the hospital bed. Then there is a series of delays due to paperwork, approvals, signatures, and waiting for the chemo bag to be delivered. After all of that, we got started at around 5 PM. Because it was Day 1, they checked vitals and blood in regular intervals. They let us out at midnight. I was able to rest a little while we were waiting but hospitals are not sleep friendly places. Although I think nurses should be able to have a good time (especially when there late), they can be rather loud. I'm just sayin'. I was happy to get home and in my own bed eventually.

So here we are getting dose #2 and no major issues so far. No serious nausea, even without any nausea medication. I do have some general queasiness, but that should pass. I just try to stay hydrated and be dependent on as few pills as possible. Goals for the next 9 months are: 1) keep my blood counts up so that I can continue on this chemo 2) encourage chemo to murder any stray cancer cells and ignore healthy cells 3) exercise more regularly 4) stay on the diet 5) stay organized so that I can work while traveling back and forth between Houston and Lubbock 6) keep my bowel movements going 7) find time to party like it's 1999.