Last week, we asked the trial coordinator to find out if Adrienne can do some of the monitoring and treatment for the clinical trial at City of Hope when she goes back to school on September 1. The answer from the drug company was that she cannot. The trial will be opening at UCLA and she can transfer there, but it could be several months since they are in the early stages of setting up the site.
If the trial is working, obviously Adrienne has to stay on it but that would preclude her from going back to CMC. After some investigating, we think Adrienne might be able spend a semester at UNLV and then finish her last semester at CMC when the trial opens at UCLA but there's still some work to do to figure out how that might work. We've been hopeful that the trial is working since her symptoms had disappeared, but there is some new wheezing the last few days. For now, we're in a holding pattern until she has scans in a few weeks.
Adrienne generally feels better on this trial than when she's on chemo but still not 100%. She sleeps almost every afternoon and looks very tired much of the time with circles under her eyes. We asked that she get regular Aranesp and Neulasta shots but there seems to be an issue getting the insurance to approve it unless her counts are really low. I need to work on that this week because we don't want to wait until she's feeling really lousy to get the shots. It seems like it's always something.
Adrienne still has some pain in her foot and is walking with the boot. She had an MRI last week but no word yet. She also saw a neurologist to figure out the weakness in her leg. The doctor is pretty sure that it's a nerve problem due to radiation but she needs more tests to be sure and there may not be a way to fix this problem. Again, we'll know more about all of this in a few weeks.
A few people have asked about my shoulder. Yes, it's the right one. I also may have a pinched nerve in the elbow but I'm going to wait until the shoulder surgery is done to address that problem.
We've had a lot of visitors the last few weeks. As far as we know, no one else is coming to visit so we'll try to relax for the rest of the summer and take things a day at a time.
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Adrienne was diagnosed with Hodgkin's Disease in 1996 at age 9. She had multiple relapses, two bone marrow transplants, and a range of chemos and radiation therapies, and passed away on October 1, 2009. We are heartbroken.
Out with the Girls
About Adrienne
- Adrienne
- Adrienne was very much like others with Hodgkin's Lymphoma, the most common cancer in teens and young adults. What was unusual is that she had it for more than half her life and ultimately, it took her life. Hodgkin's is curable for about 80% people, but Adrienne was one of the 20% for whom a cure was elusive. She considered herself lucky since treatments had been there for her with each relapse but she ran out of treatment options and her body just couldn’t take any more. As she said, "Though I’ve now had cancer for most of my life, I no longer plan my life around it; instead, I try to plan cancer around my life." We hope you can take inspiration from her and how she lived her life.
1 comment:
Again I don't always post but I have your spot book marked and follow Adrienne's progress. She inspires me and I pray that one of these trials will be exactly what kills this cancer that she has lived with for so long. Her determination in the way of college leaves me speechless at times. You may have mentioned this but I was wondering what she is majoring in?
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