We trust you had a great holiday season with family and are refreshed. Several of you have been asking for an update, and I now realize it has been over a month since I sent out Part 8. My apologies for getting behind, but as Agilent as MLK Day off, I can take some time to put thoughts to paper. I did want to wait until we saw Christopher Lieu at UC Denver, which wasn’t until last week. We were referred to him by Amy’s oncologist, Thomas Kenney, and we were going to see him around Christmas, but decided to postpone as we didn’t want anything to ruin our holidays.
As it turned out, our visit with Dr. Lieu went really well. He even spent time with just Amy’s father and myself, answering our questions after Amy and her mother excused themselves. Amy has trouble sitting up for extended periods of time and really didn’t want to hear details like what we would do if the chemo wasn’t working, etc. So, back to Lieu in a little bit.
What’s been happening since Part 8? After the chemo/radiation ended, shortly before Thanksgiving, Amy got a whole month off before starting the chemo-only regimen. I told you about her continued nausea and even having to go back into the hospital a second time for excruciating pain on her right side. The only good news about that return visit was that she had a CT scan in the ER and that was used for a baseline before beginning her chemo-only treatment. That is, Dr. Kenney wanted to get a size estimate on the tumors in her liver and abdomen before starting the chemo, and didn’t have to schedule another CT Scan for her since she had already had one.
Her first chemo-only treatment was Thursday, Dec 29th. It took four hours to administer the Gemzar and Cisplatin. She was hydrated during the Cisplatin and also given Emend, a powerful anti-nausea medication. We were told that days 3, 4 and 5 would be the worst, which turned out to be very accurate. That Saturday through Monday were awful. Nothing we gave her, in terms of pain or nausea medication, helped. Much of her new pain was in the area of her lower abdomen, which I took as a sign that those tumors in her abdominal cavity were responding to the chemo. Yay!
She had her second chemo treatment the following Thursday, even though her white blood cell count was very low, and close to the cutoff. If her WBC goes below the allowed limit, they will postpone the chemo treatment. This time, she had a better response and days 3 – 5 went OK. It was the following week, her week off, that things got bad again. She could not keep anything down and has now lost about 25 lbs overall.
This week has been good so far. Starting last Friday through today, she has felt pretty good, even sleeping well at night. She’s been watching NFL playoffs and Univ Arizona basketball, although she isn’t always able to last through the whole game. Most of the time, she has to return to her room and rest. She has her third treatment this coming Thursday, assuming her WBC is good enough, which it should be after a week off.
What we have now gathered after talking more with Seth Reiner (radiology oncologist), Thomas Kenney, and Christopher Lieu, who’s currently in an advisory role, is that after Amy’s fourth treatment, and just before her fifth, or around February 8th, she will get another CT scan to determine the efficacy of her treatments. If the sizes of the tumors have not decreased, then Dr. Lieu says he would likely recommend the chemo drugs used to treat colon cancer.
This is not to say that Amy has colon cancer. She is being treated as if she has bile duct cancer, but in actuality, her diagnosis is “Cancer of unknown primary” (CUP). That is, they don’t really know where the cancer originated. The biopsy from back in September came up negative for liver, colon, and many other possible cancers, and the PET scan did not show anything outside of the liver, except for the three nodules in the abdominal cavity. It was decided that she must have cancer of the bile duct within her liver and that the tumors found in her abdominal cavity must have escaped out of the capsule surrounding her liver.
I took Amy’s pathology slides from her liver biopsy over to UC Denver for them to give us a second opinion. While Dr. Lieu’s group focuses on gastrointestinal cancers, Porter Adventist Hospital has to consider everything and is not as specialized. We hope that Dr Lieu’s findings will be more definitive, but even so, he does feel that Amy’s care is on the right track. If she is not responding to the current treatment, then she will probably go on the treatment used for colon cancer, as I mentioned above. Dr. Lieu can also get her into a clinical trial should that be necessary at some point later.
If she does respond, then we continue the treatments and hope the tumors will all eventually go away. Dr Lieu told is that surgery is an option, not necessarily an eventuality. The problem is that surgery can help with the tumor in her liver and the detected nodules in her abdominal cavity, but the fact that she has those nodules mans there are a lot more, just not detectable at this time. Therefore, there are sources of cancer throughout her abdomen, and doing surgery would not take care of them. In fact, those other tumors would be allowed to grow freely while Amy would be recovering from surgery and can’t get chemo treatments.
Surgery is an option if the tumors respond to the chemo to the point that we can feel pretty sure the ones not detectable at this time are actually eradicated. Then, whatever remains of the three in her abdomen and the one in her liver could be cut out, leaving her with an excellent chance of being cancer-free.
Finley and I are doing well. Finley loves visiting with my mom, and that has been a great help. When I have to go out of town on business, I only go for one night, and Finley spends that with her Nana, who then takes her to preschool the next day. I’m home by the next evening to take of Finley myself. This past Saturday, Finley spent the whole day with her aunt, uncle and cousin at the Western Stock Show here in Denver, seeing cows, horses, the rodeo, and horse jumping. She had a great time and it was so nice for me to have a whole day getting caught up on things including cleaning. I got to spend the whole day yesterday with Finley while Amy’s was taken care of by her parents.
Well, that’s all I have for now. My next email will let you know the results of the upcoming CT scan. We appreciate your thoughts and prayers for two more chemo treatments before Amy gets a CT scan, and that the results of the scan will show her tumors are definitely responding. Your emails have been wonderful. The outpouring of love has been humbling.