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





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
Dr. Javle's nurse and more importantly, our friend-Ron Harris.

                                                             GO SHOPPING!!!!!!!!
                                 Speaking at the Cholangiocarcinoma Foundation  AnnualConference 2017


Sunday, January 22, 2017

Anything Happens in Houston!

Yes, anything happens in Houston!  We had some younger guys and girls move into the "park model" mobile home behind us and I just had an uneasy feeling about them. They paid for a weeks stay but left rather fast one afternoon. The following day, when management couldn't get anyone to answer the door, they entered and found suspicious looking and most likely drugs of several kinds. The group left so fast, they left a drivers license behind of one girl. Smart move.....not!

We also had a pretty good storm one evening with golf ball sized hail and it sure played a number on my car!  I woke up last night to a storm and when I was doing laundry this morning, another guy said it woke him up and it was pea sized hail. That'll be enough of that stuff!!  HMPH!

I have just a few days left on the clinical trial pill before getting a week off. My phosphorus level is at 6.6 and if it gets to 7, I will go on a drug to lower my phosphorus level. I feel great! Pat and I have been walking several days when possible and then there is all the walking from the Mays building to the Main building that does the body good if you have a good pace. I have about 3 pretty long days this week at MD Anderson for the trial. It starts tomorrow at 8 am and we will be there ATLEAST 8 hours.  Same thing for Tuesday.

The main reason for the more than usual long days is because they are accommodating me so I can attend the Cholangiocarcinoma Conference from Feb1-3....but we will fly there on the 31st and fly back to Houston on the 4th. I actually get to speak and it will be live streamed on the CCF website. I believe I speak at 3 p.m.

I want to thank everyone for the birthday wishes on Facebook, the cards I received, the Edible Bouquet from Chris and Samantha.

I am so blessed with my family, friends, and all the prayer lists I am on throughout the U.S. I am blessed with God's peace and I have a calmness in my heart that only God could put there. I have hope and am excited because I truly believe this trial drug is working inside my body.

In two days, I get that week off of the drug. That is one cycle. Only two more cycles, then we will scan to hear great news!!

Hugs & God Bless!!
Patty Corcoran


Monday, January 9, 2017

New Year.....New Plan!

My last dose of chemo or any treatment that I have had for this demon of a cancer was Nov. 10. I can tell my cancer cells are having one heck of a party in my belly so I truly am excited to get started on something to stop this cancer from growing anymore. I knew at two months that the chemo was not working so that is when we got the scan and then waited for my appointments in Houston.

I kept my appointment for MD Anderson on Jan 12 &13. Dr. Javle talked about another chemo option which I flat turned down and then there were two clinical trials for my FGFR2 mutation. One was full and who knows when there would be an opening, so we chose the clinical trial listed on my last post. I am too tired to get up and go look. :-)

This clinical drug is a phase 1/2 meaning they have already figured out the safest dose and it is some similar to the BGJ398 trial I was on for 8 months. BUT, this time there are no lowering phosphate drugs to go along with every meal, just the clinical trial drug you take once a day. You take the drug for two weeks, and then you get a week off.....then it starts all over again.  We will be down here for a bit as they keep a close eye on you and check your blood levels every week and see a dr.

Our address for now is Southlake RV Resort, 13701 Hycohen Road, Houston, Texas  77047

Pat and I have been walking 1 1/2 miles a day but today I was so pooped from being at MDA most of the day and then a trip to the supermarket to get a few more things at the store. I get my first dose of the trial drug on January 10 (Tuesday) and will be at MD Anderson for 8 hours for monitoring.

It has been awhile since I have had any treatment and looking at my labs, it's pretty angry inside my belly. I have faith that I will continue on this Journey with God right beside me. I had a day I was pretty down and when I went to bed, I sobbed a bit. Then, I dreamed I was in a cemetery wondering all over hunting for my tombstone (a little morbid...I know)....and I came upon one that made me stop.....it was a rock and it had HOPE carved into it. The dream made me wake up about that time and I just thanked God for that nudge to keep going. I am not ready to stop marching yet!!
I still have HOPE. To me, to have hope means you have faith...when you have faith, you have HOPE!   They just go hand in hand with our great Father.

So, as I start this new trial tomorrow, I ask for prayers that it will stop the cancer cells in their tracks. There are SO many new drugs/immunotherapies for mutations coming out and 2017 looks very promising.

Thanks for checking in and may God be right beside you every second of every day!!

Hugs and God Bless!!
Patty Corcoran

Friday, December 30, 2016

On the move soon!

I have been accepted into the clinical trial INCB054828  (you can punch that in on clinicaltrials.gov and find out more about it if you just really are bored). It is for the FGFR mutation which I have.This means insurance has approved for me to be in it but I still have to pass some bloodwork, EKG, vision test, physical, and a scan unless they use the one from about 2 weeks ago. 

We have rented a "park model" at a sister site to the one we have stayed at before. It was already full. This RV park is about 10 minutes farther away from MD Anderson and so we just have to get there sometime in the next 5-7 days and see if I pass all of their qualifications.

I am ready to get on something and kill those cancer cells that are dancing around in there.  I wanted to update everyone very quickly and we will keep you posted from Houston.

I feel good about this trial. I pray to our Lord that good things are ahead for me. I am thankful for everyday on this earth BUT I sure would like to take my grandkids swimming this summer, speak at The Cholangiocarcinoma Conference, just living each day to its fullest is a blessing. Thank you God!!!

Everyone have a safe and Happy New Year!!

Love and Hugs!!
Patty Corcoran

Saturday, December 17, 2016

Time For A New Route!

As I finished up two months of the Irinotecan/5FU pump, I knew it wasn't working. I told Dr. Dy I thought I might have some fluid buildup (which I knew would result in a CT scan). And, the CT scan showed the chemo was not working and there was some growth....small BUT I knew the drug was not working. So, Dr. Javle was sent a copy of the scan and he agreed we needed to change courses.
I knew I only had about 3 weeks before my regularly scheduled visit with Dr. Javle. So, another scan later and lots of bloodwork showed the growth BUT the three weeks before I went to Houston gave Dr. J time to look at our options. I could do a different chemo :-( or there were two clinical trials he was interested in for me to think about. One is called TAS 120 but it is full. The other option is a drug called INCB054828. I asked the clinical trial doctor a lot of questions about this trial as right now it seems the most viable option. I would basically have to live in Houston the first two months and then he would request a waiver so I could get bloodwork and see Dr. Dy weekly (that means I could come home). I would then go to Houston monthly to get drugs, and all the other stuff that goes along with a clinical trial (eye visit, EKG, dr visit, bloodwork, etc.).

I asked the clinical trial dr what kind of success they have had with this drug. It is at many of the big hospitals for cancer/research centers. He stated the only patients it does seem to be working in is cholangiocarcinoma patients with my mutation (FGFR).

Dr. Javle will call me on Monday to discuss what I want to do and weigh in his thoughts. Needless to say, Pat and I are not looking forward to staying in Texas probably the first of January (for two months) sometime BUT when you are fighting for your life.....you have to move quickly.

I also found out part of the reason I am SO tired is NOT because of the chemo I was on but my iron is at 11. Normal iron in a human should be between something like 35 and 176. Dr. Javle drew even more blood after seeing that so we can get to the bottom of that and get me some energy!

As we were flying to Houston, I asked God for options....that the doctors had something other than chemo if at all possible. The growth is not terrible but it needs to be stopped!!  I pray one of these options give me that!!

I ask for prayers and more prayers. I also want to thank everyone who has dropped off meals when I was getting that chemo that about killed me!  The meals were a lifesaver!!

I will keep you posted after talking to Dr. Javle and we make a plan. I have faith this will work for months!!  Then, maybe something new will be available!!

Hugs & God Bless~~

Patty Corcoran

Wednesday, November 30, 2016

Where Have I Been?

It has been right at 30 days or so since my last post....and so much has happened. I had four rounds of chemo and I knew my stomach was looking a little larger. I was worried about fluid buildup (ascites) so I asked Dr. Dy in Effingham if we could do a CT scan. I also gained 6 pounds which is another sign of fluid. BUT....the scan came back that I had no ascites. (That's the good news.......).
The bad news is MD Anderson had been watching some nodules in the lining of my stomach. You have the outside of your stomach...then fluid...then a saran wrap type of lining that hold the fluid that keeps the fluid intact. Those pesky nodules had grown in the two months on my chemo. Everything else is stable but we need to stomp on these nodules.
Before we do anything, I already had appointments in two weeks for a scan, bloodwork, a biopsy of the nodules on the stomach lining, and a visit with the great Dr. Javle.  We want to know if there are new genetic mutations that we might have more treatment options for. Those biopsies are no picnic with a large gauge needle piecing your skin and getting to the nodule. THEN, comes the chomping of a staple gun sound as it bites a piece of the nodule. Last time, I heard it chomp three times as I opened my eyes wide open after each chomp! BUT. if it helps....I'm in...if we don't find any useful information, atleast we know we have left no stone unturned.
After the biopsy, I will return home and start a different chemo regimin until the biopsy results come back. I believe I will be on Gemcitabine and Abraxane (chemo drugs) and they are supposedly no picnic. So, we shall see. 

This news isn't the best news but it is not the worst. We have known for quite some time that I am just darned hard headed and am not giving up. We will treat this cancer as things pop up and pray for the best!

In February, it will be 6 years of fighting this devil called intra-hepatic cholangiocarcinoma. I have been so blessed with WAAAAAY more good days...months...years than bad ones. No doctor has ever promised me a long life....but Dr. Javle has promised to use every tool in the tool box until we are out of options. He has given me hope when other doctors could not.

So, as I close tonight, know that I am calm.I cannot worry what is going to happen next.....I have to live while I can. I cannot think about the nodes that could be growing in my stomach lining until I get on a chemo regimin. No....God is with me every step of every day! No matter what happens to this fat lady.....I HAVE LIVED!!

May Christ be in your Christmas!

I promise to blog after returning from Houston in a couple weeks!

Love & hugs,
Patty