Tuesday, March 24, 2015

Day 14 if Clinical Trail BGJ398

Yes, today was day 14 of my trial. I was back at MD Anderson at 7:30 for blood work to check my phosphorus level. I have drank approximately 128 ounces of water a day and followed a pretty daggone strict diet with my new book. BUT, it wasn't enough to tackle the high phosphate which went up today instead of down to 7.2.  It was 6.9 last week and Dr. Javle states it is just the toxicity of the drug causing it to rise. He states he is sure I have been walking a straight line and doing everything correct, but we will just up the dose of the phosphorus lowing pill and stop my clinical trial pill for 2 days. Then, I will go into MD Anderson and receive fluids before blood work. Dr. J thinks this will be enough to lower it and let me continue on  with the clinical trial pill. To say I was beating myself up would be an understatement. Every person on the trial has had to lower their dose due to high phosphorus except one person. This is where we are the lab rats and they are looking for the safe and effective dosage. The ONLY good thing about it being high (the phosphorus) is he said they have found those with the high phosphorus level have responded well when it came to scan time...so let's pray that is the case for me. Dr. J also said I should cut back on my water some so I will gladly do that!!

I am still exercising about 5 out of 7 days and plan to be in a SCOPE 5K on Saturday with Linda Burgener (the friend we are staying with). It is for colorectal awareness. I am running/walking in Honor of Pam Runyon. I asked Dr J if I am exercising too much and he states I should not stop. So....I will march on.

I was so bummed about my phosphate (still am) but I just have to pull up my big girl panties and FIGHT LIKE A GIRL!!! 

The sun was shining so beautiful yesterday...I exercised for about 40 minutes then decided to clean out the car, and wash it as they have a car care center where you can pull under an awning and there are hoses at each corner of your car. Boy it looks pretty now!  Then we decided to sit in the sun a bit. It was about 78 degrees and I even swam some laps in the pool. Tomorrow.....I have no appointment and I bet I find the pool again! :-)

I told myself on the drive home today that I have to remember to count my basket as half full instead of half empty. I am still in the trial...I feel like a don't have cancer....I have no pain which is unusual considering I am into my 5th year with this cancer....My only side effect from the drug has mostly stopped.....I AM ALIVE!!!!  So, I just thank God for answering so many prayers since I started this journey. I thank God for all my prayer warriors....my beautiful cards I am receiving in the mail. I have kept every card since I received the news that I had cancer and I smile each time I see them on the corner of my desk at home.....for I am blessed.

Our big vendor show is this Saturday at the St. Joe Multi Purpose Room. I urge all people around my hometown or anyone across the U.S. who wants to know more, to message me or one of my girls. A lot of the vendors donate some or all of their commission from the party so it's a sweet deal for our Relay For Life team!! 

There were two typo errors when the book "Irene Goes to the Beach" came back from the printer (the one we approve so they can hit the PRINT button and start making them). So, today I believe Samantha made them aware of the corrections and printing should start VERY SOON!   IF they are here by Easter weekend, I will have a book signing. Stay tuned for updates.

I will update Thursday evening on lab results. Ashley the clinical trial nurse, believes my numbers will be down enough to get me started back on the pill. So, I ask for prayers that this does happen. That my labs remain stable overall.

In closing, I just want you all to remember...when you think your day has been so terrible, ask yourself....Is your basket of apples really half empty OR is it REALLY half full?  When things seem so tough and you just feel really down, ask God to help find your way to Him .....and He will!




  1. Hi Patty. I am cathy from the dallas area. Sounds like we have a few things in common. I am a candidate for the MDA BKG398 trial. I am trying to plan on travel and tge best place for me. Could you please tell me about how many days are average for being in houston each week the first time?

    Hope we get a chance to meet?

  2. I am new to the BGJ drug trial. Just completing my 3rd week. I would like to converse with others.