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
Sunday, February 26, 2017
Sunday, February 5, 2017
I AM AMAZED!
Since my last post, I have started my second cycle of my trial. Side effects are a little worse as far as diarrhea...even waking me up in the middle of two nights so far. The only other side effect is I had one mouth sore but it was caught early by Clover, the nurse practitioner I saw. I received a script for the "magic mouthwash" that numbs your entire mouth but within four days the sore was gone. Dr. Subbiah who is over his clinical trial told me about a new mouthwash (new to me) and I ordered and received it. You use it every day whether you have a sore or not as it also aids in protecting your throat and stomach from getting sores. You cannot get it at a store so I am hoping to start it today and it will keep all sores away. If any chemo patient is interested in the name.....message me for it. Other than that, I am feeling great. I just hope and pray that it is a good indication that the clinical drug is working.
As a lot of you know, I attended and was a patient speaker at the Annual Cholangiocarcinoma Foundation Conference in Salt Lake City. It was 3 days long but so much support, learning, and meeting fellow warriors. There were doctors, researchers, biologists, drug and medical research representatives from all over the world including Malaysia, Thailand, Taiwan, Austria and Australia....and one man from Milan. There were many, many doctors from major cancer centers in the United States. OF COURSE MY DOCTOR WAS THERE WITH HIS NURSE RON! They actually came in to Salt Lake on Tuesday night or Wednesday morning so they could hear two of his patients speak and tell their story. Come to think of it, we were the two that received standing ovations. I wonder how much Dr. Javle had to pay for that to happen...HAH! I will post my speech on here in a couple weeks when it is on the Cholangiocarcinoma.org website.
Something very exciting for me was several doctors are talking about the FGFR2 mutation which I have. A lot of studies are being conducted in the lab for this mutation and it gives me so much hope and anticipation that a drug that works for this mutation is on the horizon!
Pat and I walked about 2 1/2 miles this morning. Super Bowl is later today and the traffic is nuts. It was nuts last night when we got off the plane at Hobby with lots of people going to the football game on Sunday. This is the only day Pat and I act like football fans just so he can eat his melted cheese/chorizo/ and some pico d'gallo served with nacho chips and I get cucumber sticks, carrots sticks, and green pepper strips. I might even splurge with a little blue cheese dressing for a dip. He'll probably have a beer and I will keep drinking water. We're really exciting people in the trailer park! ;-)
I want to mention a fundraiser that is going on the whole month of February. Charming Charlie is donating 10% of all sales all over the United States in the month of February to the Cholangiocarcinoma Foundation. Just take a picture of the coupon at the end of the blog and they will make sure it is applied. How amazing is that! If you don't know what Charming Charlie is....it is a store with every accessory you could think of for women and older girls. It is very reasonable and even have some really cute purses...even some sweaters. If you have one in your area, please consider supporting this fundraiser where you end up with some really cute stuff!!
As I stood up at that podium and was telling my story with cancer, it made me realize how blessed I truly am. As I pray morning and night (and lots of times in between), I pray God keeps leading me on this cancer/life journey. I know I can't do it alone....and I am blessed with the CCF and my own family and friends. I am so grateful to have God right beside me every step of the way. I am not perfect and I ask for God to forgive me daily. I am at peace with my life and I know that no matter what or where life leads me, my amazing God is there to catch me if I would ever fall. I am not afraid of dying although I do tell God I still have a lot of life to live if it is his will. I am at peace because I know God truly is right beside me. I AM BLESSED!!
Until next time......God keep close to you!
Hugs,
Patty Corcoran
GO SHOPPING!!!!!!!!
Speaking at the Cholangiocarcinoma Foundation AnnualConference 2017
As a lot of you know, I attended and was a patient speaker at the Annual Cholangiocarcinoma Foundation Conference in Salt Lake City. It was 3 days long but so much support, learning, and meeting fellow warriors. There were doctors, researchers, biologists, drug and medical research representatives from all over the world including Malaysia, Thailand, Taiwan, Austria and Australia....and one man from Milan. There were many, many doctors from major cancer centers in the United States. OF COURSE MY DOCTOR WAS THERE WITH HIS NURSE RON! They actually came in to Salt Lake on Tuesday night or Wednesday morning so they could hear two of his patients speak and tell their story. Come to think of it, we were the two that received standing ovations. I wonder how much Dr. Javle had to pay for that to happen...HAH! I will post my speech on here in a couple weeks when it is on the Cholangiocarcinoma.org website.
Something very exciting for me was several doctors are talking about the FGFR2 mutation which I have. A lot of studies are being conducted in the lab for this mutation and it gives me so much hope and anticipation that a drug that works for this mutation is on the horizon!
Pat and I walked about 2 1/2 miles this morning. Super Bowl is later today and the traffic is nuts. It was nuts last night when we got off the plane at Hobby with lots of people going to the football game on Sunday. This is the only day Pat and I act like football fans just so he can eat his melted cheese/chorizo/ and some pico d'gallo served with nacho chips and I get cucumber sticks, carrots sticks, and green pepper strips. I might even splurge with a little blue cheese dressing for a dip. He'll probably have a beer and I will keep drinking water. We're really exciting people in the trailer park! ;-)
I want to mention a fundraiser that is going on the whole month of February. Charming Charlie is donating 10% of all sales all over the United States in the month of February to the Cholangiocarcinoma Foundation. Just take a picture of the coupon at the end of the blog and they will make sure it is applied. How amazing is that! If you don't know what Charming Charlie is....it is a store with every accessory you could think of for women and older girls. It is very reasonable and even have some really cute purses...even some sweaters. If you have one in your area, please consider supporting this fundraiser where you end up with some really cute stuff!!
As I stood up at that podium and was telling my story with cancer, it made me realize how blessed I truly am. As I pray morning and night (and lots of times in between), I pray God keeps leading me on this cancer/life journey. I know I can't do it alone....and I am blessed with the CCF and my own family and friends. I am so grateful to have God right beside me every step of the way. I am not perfect and I ask for God to forgive me daily. I am at peace with my life and I know that no matter what or where life leads me, my amazing God is there to catch me if I would ever fall. I am not afraid of dying although I do tell God I still have a lot of life to live if it is his will. I am at peace because I know God truly is right beside me. I AM BLESSED!!
Until next time......God keep close to you!
Hugs,
Patty Corcoran
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| Dr. Javle's nurse and more importantly, our friend-Ron Harris. |
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