My first post since starting the new drug/trial was earlier this week in Houston. We stayed near the airport by St. Louis (closer than our house! ;-) and had a wonderful supper and good nights rest with The Rand's Family. We flew out of St. Louis at 5:30 (which meant we started boarding at 5 a.m.). WHATEVER WAS I THINKING!!! My first appointment wasn't until 12:30 on Tuesday but it was a non stop flight! Roselyn Morris picked us up at Hobby Airport at 7:30 which meant she was up early also to fight the traffic to pick us up. Thank you Roselyn! She also drove us to MD Anderson and dumped us off for our appointments. If I have one grump or should I say the only grump about MD Anderson is if you have to wait on a prescription, it takes anywhere from 2-4 hours to wait. ;-(
Linda Burgener was in the MD Anderson area and picked us up from our day at MD Anderson. We had a wonderful meal at Candelaria's and had the best brick oven pizza ever!! Linda also drove us down by Hobby Airport where we spent the night and flew home on Wednesday at approximately 10:30. Thanks Linda for always being there.
Oh, you're probably wondering how my first months visit went. My labwork was exceptional except the alk phosp jumped 20 points. The other liver enzymes tests -the ALT and AST were well within normal range). We are just going to watch the alk phosp at the next visit. My platelets are jumping by leaps and bounds as is my white count (all well within normal range). My red blood count is normal. Creatinine is .08. Bun was in normal range although I cannot remember it off the top of my head. Dr. Funda Meric- Bernstam was very happy with the visit as far as labwork. I am feeling good and energy level is at about 95%. They are concerned about the screaming squirts I have been having and prescribed me some Lomotil to take every other day to see if it helps slow things down. I was having 4 to 7 liquid BM's a day. BUT ....did I lose any weight? Ohhhhh NO! I stayed the exact same as I was a month ago! This is one of the side effects of the meds FYI.
I will have a CT scan at the next visit in July and I pray for stable or shrinkage. I am still the only cholangiocarcinoma patient on this trial in the United States. There are 22 other patients on the trial with other cancers....not all at MD Anderson. I am not sure if there is anyone else on the trial at all at MD Anderson.
It was a good trip to Houston packing in lots of friend visits and dr appointments. Our computer quit on us while in Texas so I apologize for not posting sooner. I'll update in 28 days!
Hugs to all of you and stay inside....it's HOT out there!!
Patty Corcoran
