Pat and I started driving towards Houston Sunday morning and stopped for the night in Lufkin. On Monday, we drove straight to MD Anderson to get started with a few tests before getting the approval for the MATCH (Molecular Analysis for Therapy Choice) Treatment. I am in a Sub-protocol P: EAY 131-P. It is a Phase 2 Study of P13K Beta Specific Inhibitor, GSK2636771 (what they are calling the drug), in Patients with Tumors with P-TEN Loss by IHC. It basically is a trial that is potentially targeting treatment in cancers showing P-Ten genetic changes. I had the P-Ten two biopsies ago....then back about 5 months ago, they did a biopsy and I no longer have the P-TEN. P-TEN is a tumor suppressor...so the hope (from what I understand) is that since the P-Ten is no longer in my body....this drug will hopefully stop any cancer cells from starting any fires in my body. Will it work? The drug is made specifically for this genetic mutation....so I will march....M.A.R.C.H!
On Monday, I had bloodwork, urine test, and an echocardiogram. I passed all of that like a breeze....then they call me and they forgot to get a pregnancy test. I said, "Look here...I just had radiation! I had a pregnancy test before you cooked my nodule and IF there was a baby, it's gonna have a really bad sunburn from all the radiation they cooked me with!" They didn't see the humor and shot me back to the lab to be stuck again. AND....the next day when I saw Dr. Funda Meric she told me it was still coming back positive. They talked to the NCI (National Cancer Institute) who is over the MATCH Program and also to the gynecologist at MD Anderson and all agreed I AM NOT PREGNANT! Paleeeeze! At the visit with Dr. Meric, she told me that since they now have my consent sign formed they will order the drugs and it could be next Tuesday before they get to MD Anderson. They are talking after the holiday weekend!!! Ummmmm, Houston, we have a problem. She also told me I would return every 28 days instead of every two months. Okaaaaay. Your starting to light my fire! Pat and I left and I was NOT happy.
On Wednesday morning, I e-mailed Chetna (the clinical trial coordinator) and told her it was bull hockey that we had to stay in Houston a week for the drugs and I wanted to go home and that I didn't even like Texas!! I explained that my husband and I did not plan to stay another week and that we did not have enough medicine for that many days. Well........Chetna forwarded my e-mail within 20 minutes of me sending it to Chetna to Dr. Meric. Dr. Meric called me immediately and explained she knew I wanted to go home and she just had her hands tied until they had the consent form signed (which happened on Tuesday). Chetna called me back within 5 minutes to let me know the meds would be there Thursday by 4. They were being overnighted and paid for by MD Anderson Pharmacy. Dr. Meric knew I mentioned I could do this trial anywhere in the U.S., like St. Louis or Chicago.... Thursday morning came and I received yet another call from Chetna and she stated the drugs would be ready at 12ish. HOT DOG! Well....it was 12:45 but I will take it!
Last night I took my first dose of the trial pills. It is a 400 mg dose each day for 28 days and then you start right over with Day 1, Cycle 2 and so on. At the end of Cycle two, I will go to MD Anderson for an Echocardiogram, bloodwork and a scan. I will stay on the drug as long as there is shrinkage, stability or no disease at all. I am the FIRST cholangiocarcinoma patient to be in this trial EVER. They already had phase 1 with patients to figure out the right dosage....but none of them were CC patients. Mostly they were prostate, kidney, pancreatic, colorectal, etc.
I am getting ready to take my second dose of the trial pill before bedtime. Today (after taking the pill last night) I had some stomach discomfort and about 7 trips to the bathroom. Tomorrow, if I have the "scoots", I'll take a pill to stop it. I don't want to get all dehydrated.
I know this is a lot of info but if another CC patient goes on this trial, I want them to be able to read this and help them know what's possibly ahead of them.
Pat and I laughed that Dr. Meric and Chetna probably should have been warned about me. Only once in 5+ years have a sent a little upsetting email to Dr. Javle. It was not directed at him but something that happened on the last clinical trial I was in.
So....I will travel every 28 days to Houston and get bloodwork/echocardiogram/see Dr. Meric and Chetna. On the next cycle, there will be a scan to check the progress or no progress from the trial drug. The drugs will be ordered the week before I am to arrive so they WILL be there BEFORE my appointment.
Pat joked and said he would love to see a comic strip made with Dr. Meric screaming and throwing her paperwork into the air as a lab rat is screaming "I JUST WANT TO GO TO ILLINOIS!!!" and a quote box with Dr. Meric screaming "I thought I requested NO TALKING LAB RATS! NO TALKING LAB RATS!" Bahahaha~~ Humor....sometimes it is the only thing that gets me through the day!
Have a great weekend and may God be with all families dealing with cancer or the loss of a loved one. You just don't realize how it effects a family until it effects your family!
Hugs,
Patty
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