Sunday, February 26, 2017

STILL MARCHING!

First off, I want to apologize for not posting an update sooner. I AM still marching in the trial and had a good report from my scan a little over a week ago. I had 8% shrinkage according to Dr.Subbiah who is the doctor over this trial at MD Anderson. We somehow got out of the last appointment without getting a copy of the scan report but when it finally got on the "my mdanderson website" I noticed a couple places of concern noted on the scan which I was a little OR ALOT worried about.
I decided to call in my favorite doctor, Dr. Javle to take a look. He was also a little concerned so he asked for a re-read of my scan. Although there are a couple of places that are concerning, there was shrinkage so I will continue cautiously. The diarrhea has stopped and I also had a different pill to help me sleep at night. THIS has been a huge adjustment but I am adjusting although my body is saying "WHAT HAPPENED"?  A girl needs her beauty sleep....!

I will back up to last Friday when I had an appointment to see the nurse practitioner, Clover. Before they called me back to get all my vitals, Dr. Subbiah came out to talk with us. He states he had my scan re-read 3 times by different radiologists plus he measured the shrinkage himself. He states the trial drug is working...to be patient. At this point I realize Dr. Subbiah knows I asked Dr. Javle to look at the scan and also other doctors. It's ok, this is my life and I need to be on the defense if I am not 100% confident about the trial. Once I was with Clover for my visit, I received a copy of my bloodwork. It all showed a significant decrease in my liver enzymes, my LDH, and my Alk Phosphatase. This is a GOOD sign that maybe the trial is really working. I had only been on the trial two cycles before my scan so I need to give it another 3 cycles to see results 100%. So....I WILL MARCH!

I have an appointment this Friday, the 3rd of March with bloodwork and a visit with whoever decides to see me. If my bloodwork is good, I will continue and start cycle 4 in a week from the 3rd(the next Friday). I am on the drug two weeks...then off a week. That is 1 cycle. After the appointment on the 3rd, Pat and I will start off for Illinois. We will be there until March 12 and on the 12th, we will fly to Houston for appointments on the 13th.  We are also in the process of seeing if I can have weekly blood draws in my hometown and fax the results to Dr. Subbiah. This would mean I would go down every three weeks instead of weekly visits. I pray this is approved so I can be at HOME more and less in an RV Resort in Texas!

We had a beautiful day Saturday going to a Big Top Vintage Market in Old Town Spring, Texas with Linda Burgener and Margaret Burgener. The temp was perfect and the food was good at a nearby restaurant.

Monday evening, Pat and I are meeting a very nice lady we met at the Cholangiocarcinoma Conference last month. Her name is Patti and she lives here in Houston. She seems very delightful and she is meeting us at an Italian restaurant where my nurse, Ron and his wife might catch up with us for dessert. Ron suggested the restaurant so it better be good! To say I am excited would be an understatement as socialization is definitely lacking on most days when Pat and I just walk in our campground for exercise.

I think that about sums up everything for an update. There have been quite a few patients with CC that have passed lately. It scares a person and makes you realize even more that every day is a blessing. I pray that advancements with CC is soon on the horizon and pray it happens before my "light" goes off. I can only say it is a true miracle I am still on this earth. God has granted me more time with my family and friends. I can only give thanks and praise to Him.....as I know most days I am not worthy. But I am blessed and I do give thanks to our great Father. For without Him, I am nothing!

God bless and enjoy your day.....everyday!

Hugs,
Patty





2 comments:

  1. Patty, do not despair. Your light will shine always.

    ReplyDelete
  2. Your favorite daughter, Jennifer 😂February 26, 2017 at 1:10 PM

    Only a few more weeks! You'll be back just in time for spring in SoIl! We miss you every single day!

    ReplyDelete