Everything went smooth today at MD Anderson. After going there for 4 1/2 years, I still occasionally get lost but never for too long as there is always a volunteer to steer you in the right direction. Deb Schonert generously gave up her day to be my escort/driver/and last but not least, FRIEND!
My left eye is still a bit dry from the clinical trial drugs but so far, the eyes are holding up. My toenails are just downright ugly. I have lost appr/ 4-5 toenails...some not all of the way off yet. Other than occasional constipation/diarrhea, we are marching on.
My visit with Dr. Javle always calms my soul. There are several people being dropped from the trial due to tumors growing over 20% or new tumors that have grown since their last scan. I didn't have a scan today but my bloodwork is pretty darn good! Platelets are at 150,000. White blood count is at 4.8 My CA 19-9 went from 4 to 4.8 (Dr. Javle said there is always some fluctuation in that cancer marker test and it is probably nothing but as always, we will watch it). My triglycerides had been high in the last few months but since being put on a low dose cholesterol pill, things are in check and all within normal limits. My creatinine is back to normal range at .97. Phosphorus Serum is 3.8.
I told Dr. Javle of my concern over people being dropped from the trial and I wondered if I'd be next. The aortal lymph node they have been watching went from 1.4 cm to 1.7 cm. So it was very little growth....maybe even within the margin of error. So....even if it grows a tad bit next month, it doesn't necessarily mean I am off the trial. It would have to increase substantially to knock me off the trial. OK.....it's a wait and see kind of deal and I am ok with that.
I asked Dr. Javle if I was out of options if it did grow over 20%. He stated that "No, I still had chemo options and clinical trial options." I have read some mean stories on Folfori/Folfox regimen's and I would pick a trial before doing chemo again. I asked him if he was familiar with the MATCH Program. (Of course he does, he is one of the best cholangio dr's in the U.S.!!!). He stated he thought that would be a great idea down the line but we would need a new biopsy to send to NIH in Maryland. They take the biopsy and put so many cancer cells in petri dishes and then add different clinical trials that match my mutations and chemo drugs to find the ones that attack MY cancer the best. Pretty smart idea. So....instead of putting me on a drug or trial we are not even sure will work, we will KNOW from MATCH what will work best for me. I am excited to know there are tools still left in the toolbox to help keep me alive. Better yet, the longer I stay on this trial or the next, the more time they have to fine tune more clinical trials. Dr. Javle really is pleased I prefer clinical trials over conventional chemo. He feels that is the best place to go at this point and time for me.
Deb and I walked over 10,000 steps today at the Japanese Gardens, Miller Amphitheatre, and a golf course which I am not sure how we even got onto it. It's been an active day!
So....tomorrow, I march on. I will start Cycle 8 and just have faith that God will continue to lead me on this land of cancer.
God Bless and Goodnight!!
Patty Corcoran
Patty, Thank you for the update. You are very thorough. Thank you for helping me at MD Anderson. I'm so blessed to know you and the doctors in Houston thanks to you. I have a lot of experience with Folfirinox and am happy to talk with you about it. Best wishes and your CA 19-9 is amazing. You are a miracle! Love, Lisa
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