Tuesday, September 20, 2016

HERE WE GO AGAIN!!!

September 22nd, I will have a new port placed in my upper chest. It took some doing to even get a surgeon to perform the procedure since the last port was maybe part of the blood clot problem I had and landed me in Prairie Heart in Springfield, Il for about 12 days. I am on blood thinners so we will stop them now and restart them a few days after the port is in. Then, we will check my ANTI X-A (a test to check the consistency of my blood). I can't remember if I am put all the way under for the port procedure but I know it was pretty quick. I will be sore for a few days and may have some restrictions....I will know more the day of surgery.
THEN.......next Wednesday, I will have my first dose of chemotherapy attached to my port and I will wear the pretty fanny pack that carries the chemo. It is like a 48 hour release of the chemo meds (Irinotecan, Leukovoran, and Xeloda). I will get this done every two weeks until I get another scan in December and I pray to our Father that the cancer is halted!  I get some pretty ugly side effects from the chemo (or most people do).  I have had the Irinotecan and Xeloda before but received it all in one day instead of spreading it over 48 hours. It knocked me off my can for several days before I could barely walk to the fridge for a glass of juice. But you steadily come out of it and feel great for a few days....and then, it is time to do it all again.
BUT, I am living. I will know when it is time to stop taking chemo when and IF it comes to the quality vs quantity of life. My dr in Houston says I am not going anywhere....to get that out of my head!  So....LETS MARCH!  Hup two...three...four!!!
Thank you for the cards, messages, and most of all...prayers! 
Love & Hugs;
Patty Corcoran

Wednesday, September 14, 2016

At a Loss For Words........

As I sit here at home, staring at this computer, I would like to whine and do the "sing and dance" about how I wish I could crawl under a rock and die. But I won't... yet.

My bloodwork was given to me by the radiology department during my scan, and I thought everything looked really good except one and it was one I don't remember seeing it before. It was grossly out of range. But, I remained optimistic that night and was ready for my scan results the next day. The clinical trial coordinator wouldn't give me any clues what my results were and said I would have to wait for the physician's assistant that was coming in next. SHE would not give me any clues and said Dr. Meric wanted to go over the scan results with me. I knew at this point, it wasn't good.

Dr. Meric said although the liver was stable, I had some new nodes in the lining of the stomach. I also had a few 2 cm nodes by my ovary that they had been watching and in two months they are 4 cm. It is enough growth to take me off the trial. She had another trial but I would have to travel to Texas every week. NOT.  Then, Dr. Javle wanted to see me so we met with him. He wants to do Irinotecan along with Leukovoren and Xeloda. He wants to put a port in, and I would have a pump for two days while all three drugs are slowly released. Then, I would travel back to Effingham and have the fanny pack that holds the chemo removed. I would do this every two weeks. My family is concerned with a port as that is what caused all the blood clots over 5 years ago. Jenn has a call in to Dr. Goswami (my dr at St. Johns/Prairie Heart Institute in Springfield, Illinois who removed all the hundreds of clots last time) to see what he thinks. Dr. Dy believes we will be fine as long as we keep a close eye on the consistency of my blood.
I do not look forward to chemo but these chemotherapy agents have worked in the past so I feel better than entering a trial again. Along with the chemo, can come low white counts which would add the Neulasta shot. Kim, the nurse at Crossroads said the side effects are not quite as bad since it is slowly released over 48 hours instead of pushing the drugs into my system in a few hours.
I am not going to lie, when you get nodules (that they are pretty sure are cancerous) in the peritoneal region, it is time to get out the gloves and give it my best shot.

I know this is a pretty serious post, but it is pretty serious right now. I've been in tight spots before and have came out on top, I am not about to throw in the towel now!! 

A huge thanks to David and Lynda Rands whom we stayed with in O'Fallon after a delayed flight and a midnight arrival to their house. They are great hosts and even better friends!!

Thank you all for your prayers and God is with me. ALWAYS!  I am still here.....there's a sharp curve ahead but I have taken a few of those in the past and survived. So....stay tuned for the next step in this land of Cancer at the Corcoran's!

Hugs,
Patty


Friday, September 9, 2016

Am I ready for this?

First off, I have to tell you a quick story that happened as Pat and I were at the Atlanta, Georgia Airport as we were traveling to St. Lucia. I noticed this man looking at me and he kind of looked familiar but I blew it off....after all, no one knows me this far from home.  After about 20 minutes, This man stands up and starts walking my way.....I'm thinking ......well, I won't even tell you what I was thinking. He came up to me and said, "Are you Patty?" I paused.......and then said "yes" very slowly wondering who this man truly was. He stated his name was Lanny Andrews (and at THAT MOMENT) I knew exactly who he was. His wife had cholangiocarcinoma and sadly passed about 3 1/2 years ago. Cindy Andrews was a caring, sweet, and kind friend that I met due to this terrible disease called cholangiocarcinoma. But to think about this....sitting in an airport that he could recognize me...was crazy!  Lanny still reads my blog....still keeps up on me...and that is how he recognized me. So, Thanks Lanny! Thanks for having the courage for coming over to see if it was me. Hope you had a great trip in Jamaica!! Here is a pic of Lanny & I at the airport . We had a red eye flight...so sorry about the "just got out of bed look."
Pat and I finally planted our feet on St. Lucia and was swiftly driven about an hour away to the Sandals Resort. It was the most amazing resort I have ever stayed at. Absolutely pristine from the rooms....to the pool...to the beach...to the food...to the never letting your glass get empty...they were always there. I was a pretty cheap date drinking glasses of ice, ice water, and virgin strawberry daiquiri's,  and virgin pina colada's. Pat snorkeled every day and I snorkeled one....We also kayaked hard and fast around the large cove we were in. This was probably my second favorite trip so far that we have taken by ourselves. I picked out a few pics to share before ending with an update on my trial.

 Pat and I before entering the Japanese Restaurant.
A Sandals Sailboat

 No....this isn't Pat and I! :-)
 This wall separated Sandals from the beach. We had plenty of openings to go to the beach but the pool was right behind where this picture was taken.
 The "other" side of the cove our resort is in. I think there were some hotels and Bed and Breakfasts along here.
 The building sticking out is a Japanese Restaurant that we ate at on the Sandals Resort. It was fantastic!!
 These colorful houses are part of the Sandal's Resort. Again, this is where Pat and I snorkeled.
 They say there are NO sharks because the water is too warm. How about THAT!  :-)
 Pat and Pat-ty
This was taken from our balcony. We snorkeled along the left side of the picture clear out to the edge of rock.

 This beautiful tree is like a gigantic Mimosa tree.....There were the pink blooms all over although you might not be able to see them in this picture.

I have been taking the clinical trial pills every day and still the worst side effects are abdominal cramps that usually happen right before "a big explosion" is about to happen. Needless to say I am a anti diarrheal junkie on an almost daily basis.

I travel back to MD Anderson in Houston on Sunday evening with bloodwork starting at 6:30 on Monday morning. I have the CT scan prep starting later that morning.  Tuesday morning, I meet with a specialist of some kind to look at all the meds I take and if I am taking two together that should not be taken together. I have never had this done before but with all the "scoots"....it can't be a bad idea.  Then.......I will get the CT scan and bloodwork results when I see Dr. Meric at noon. If all is well, we will wait the dreaded three hours for new drugs and fly out that evening.

What do I think the scan will show...good or bad. I don't have a clue. I know I am living life to the fullest. I babysit my youngest grandson two days a week, I am always on a journey each day. I have been painting some ocean animals and have a few more to finish before handing them over to a friend named Sam.  WHATEVER the scan shows, we will take it in stride. I am in no pain, I feel mostly energetic, and I am just not sure what it will show. Stability would be wonderful....shrinkage is an added bonus. I prayed last night for God to take control of my life. I asked Him to do what He believes is the right thing to happen in my life...and to guide me on this journey.
Sometimes, you really do not realize how many people are dying from cancer until you are closely related to someone or have cancer yourself.  Why is that?  Why is it that most Relay for Life teams have members with cancer patients on them?

As the air starts to get cool and crisp, the hickory nuts and acorns start to fall, campfires start to happen more often this time of year, enjoy this special time of year. Enjoy the fall foliage as it will be on the ground in no time!  Enjoy every day and give thanks to our amazing God for the view He gives us every day.

I will post maybe Tuesday with a report from the dr...maybe not until Wednesday evening. It all depends on when I have access to the internet.

Happy Fall Y'all!!

Hugs!
Patty Corcoran



Wednesday, August 17, 2016

Onward Marching Soldier!

It was a fly in spend the night and back to the airport type of visit to Houston. We stayed at the Holiday Inn on Kirby and the Texan Football team was there. They came in late the night before. I wanted a picture so stinking bad with a sign about "Tackling Cholangiocarcinoma" or something like that. We were in the elevator with one and man....H.E. W.A.S. B.I.G!    Moh picked us up and we figured the cost compared to SuperShuttle and you only save $2!!  So, you can ride in a van with a bunch of people or in a Lincoln MKX and get served bottled water on the trip to the hotel!!  Moh is the BEST and he picked us up the very first trip to MD Anderson 5 1/2 years ago!

My bloodwork looks pretty good. All in normal limits except the Alk Phoshatase BUT the other two enzymes are in the 30's which is perfect so Dr. Meric is not too concerned for now. My platelets are at 114,000 so they are a little low but nothing to lose sleep over. Normal limits start at 140,000 at MD Anderson. I have found each lab/hospital is a little different but pretty close in comparison.

So, we are on to month 4 of the Match trial. So far, every person on this trial is still on it....for whatever type of cancer they are being treated for. Dr. Meric already has some options up her sleeve if something goes awry with this trial.  I told her "Don't let me die, Dr. Meric" and she just put her hand on my arm and nodded......I know she cannot promise me life.  I am ok with that....just fight for me to the best of her ability. Isn't that all we can ask....the rest is in God's hands. AND....I am ok with that, too.  I am at peace. That is the "win"....the "score" ....the prayer we all want answered in life.

May PEACE be with each and every one of you!!  And to ALL cancer fighters, patients, and ones who have passed......May The Force Be With You!

Hugs!!
Patty Corcoran

Wednesday, July 20, 2016

What A Visit to Houston!!

First off, I hope everyone saw the Cholangiocarcinoma Foundation's posts on clinical trials. I am just one of the many people that was featured but I think it's a good feature....Clinical trials is where it all starts!    :-)

As Pat and I started toward the airport in St. Louis to head for MD Anderson on July 18 & 19th, I heard a ping on my phone. Let me stop here and explain scanxiety....you get it as a cancer patient a lot when going for a scan....and when it is for a brand new trial...FIRST cholangiocarcinoma patient in the U.S. in the trial...the scanxiety WAS TRYING to get the best of me. I just prayed. I told the devil to get out of my head, that there was no room for him!  I told myself that no matter what, God was always there. He has always been with me even when I didn't realize it years ago. But going into this scan, I felt peace. I was calm. I felt that no matter what, God hasn't brought me this far to just leave me standing in the dark...EVER!
So....back to the ping on my phone. I opened it and saw it was from someone who had sent inspirational daily words and they just brighten my day. The one sent on the 18th was sent 'for' me.....and not just 'to me'. It read 1st Peter 5:10: "And the God of all grace, who called you to His external glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm, and steadfast." Our prayer: Lord, thank You for healing us, making us stronger when life tries to break us down. Amen.      This WAS sent to me.....it just made me smile and gave me reassurance God was right beside me AS ALWAYS!

After checking into our hotel, we went straight to MD Anderson to get bloodwork done before my scan. There was not ONE person in the lab draw. This might mean nothing to MOST of you but to anyone that visits MD Anderson, this NEVER happens. I told the receptionist I was going to take a picture because in the 5+ years, I had NEVER seen this room empty. There are usually 75 to 100 people crammed into it with standing room only waiting for one of the approximately 25 phlebotomist to call your name.  I get a student to draw my blood and thought "Oh boy....someone who gets to practice on me!"  BUT, it was a positive and perfect blood draw.....and of course I told her where to stick the needle and which direction to point it when entering the plastic needle thing. She asked how long I'd been going to MD Anderson....then she saw I was 51. She stated I was too young  and I didn't look 51. I just laughed it off and said "You should have saw me before I had cancer!" She said God never gives us more than we can handle and I told her I knew that. 6 vials of blood later and I was on my way to the scan area.

The scan area holds about 200 people and the later your appointment, the later you will be getting out of there. My prep started at 6:30 p.m. but the scan was to be at 8 pm. I mean....there are nights I am in bed at 8 p.m. at home!!  You can tell who all the cancer patients are without even looking at all the wristbands.....because they all have this big glass of SHTUFF that you must take an hour to drink 3/4 and then stop until you are ready to be scanned and you drink the rest of it. As I was getting up from the scan, the tech asked if I was seeing the dr tomorrow. I replied yes and thought....WHAT was that all about!  Pat told me she was just making small talk and not to worry about it. Frankly, I was too tired to worry about it. It was 9:30 before the hotel van picked us up and I went straight to bed!

My dr appointment was at 9:30 the next morning. We grabbed some breakfast before leaving on the shuttle. So I was a little hungry! Chetna is my clinical trial coordinator and I always see her before the dr. She will not really reveal the scan results but she is always there to check on the side effects, check on me when I had a 6-7 day virus with a fever, and to order any scripts I might need. She is just a true gem!   Dr. Meric was out of town so I had a "fill in" doctor which is ok....but it's not the same as seeing Dr. Meric. The dr came in and shook my hand like a military soldier. My whole body shook right down to my teeth!  I told her "Wow! That's a heck of a grip!"  She exclaimed by bloodwork was so good. My alk phos jumped 20 points last month but it was down 20 points this month. My platelets are climbing, my white count is good, The RBC is in range. My liver enzymes are perfect except the alk phos. My CA 19-9 is 9.6. My CEA (carcinoembryonic antigen) is at 0.9.  Creatinine is .86.   My GFR is 84 (kidney function).   These numbers are for patients if they'd like to know what another CC patients numbers are. Just remember I have had this disease a lot longer than most of you so I have had a lot of chemo's, radiation X 3, and two clinical trial drugs run thru my body.....so I think they look pretty awesome!  My scan....FINALLY!  My scan shows 6% reduction and everything is STABLE. The 6% reduction shows me the drug is working. In just 56 days, 6% reduction is a good thing! 
It's a good feeling to know Dr. Funda Meric has guided me to this trial and this specific arm of the NCI MATCH Program (also known as ECOGEAY 131, Treatment  Arm P trial). It is good to know it is a targeted drug I take daily and it is halting all/any growth and is actually putting this cancer in its place!! I just smiled after all the staff left the exam room and thanked our awesome God for being right beside me. I praised God for answering prayers that so many people were sending up for me.

It IS the most amazing feeling knowing that this trial (that is so small in patients (24 last thing I knew) and we had NO IDEA if it would work for me) IS WORKING!  I pray for more shrinkage and stability. I am beyond words HAPPY with my scan report.

I met up with Cathy Dalton who is also on a clinical trial and doing so well. I sold some books to her and just had a really nice visit!!

I was trying to hook up for a quick visit with Dr. Javle but he was just too swamped. I will ask for a dr visit next month when I am down there to catch up medically.

So....there you have it! 6% REDUCTION and STABILITY!  GREAT LABWORK! 
MY GOD IS AN AWESOME GOD!! 

On the flight home, we had an approximately 2 hour wait as the plane we were waiting to board was having mechanical issues. The plane was finally cleared for takeoff!  As everyone single filed into place, found a seat, we had no idea of the ride ahead of us. As we got closer to St. Louis, the pilot announced everyone needed to stay seated and that St. Louis was having a storm and we would either wait it out or land in Kansas City, Missouri. WHAT?  We must have "floated and circled" around St. Louis for almost 2 hours before finally landing. It was 10:30 pm when we landed and 11 by the time we were shuttled to our car. THEN, we had the 2 1/2 hour ride home. It was 1:30 by the time we hit Suntone Road.   As I was on that plane, with some turbulence and clouds below us SO dark you could not see anything. AND a black cloud above us, I thought to myself  "God didn't bring me this far to crash in a plane!"   No....God's not done with me yet."   I wondered to myself which one I had a higher rate of dying from......cholangiocarcinoma OR a plane crash?  It doesn't matter right now.....I am going to LIVE!

I have a family trip planned with my daughters and their families. It will be nice to spend time with just my girls and their spouses and children. 
Pat and I will travel to a Sandal's Resort in St. Lucia in August.


So, I am excited to travel and just LIVE!!

Thanks to all of you....my family, my friends, my CC family.....and most of all...My AWESOME God!

Patty Corcoran

Thursday, June 23, 2016

Sailing along......

   My first post since starting the new drug/trial was earlier this week in Houston. We stayed near the airport  by St. Louis (closer than our house! ;-)  and had a wonderful supper and good nights rest with The Rand's Family. We flew out of St. Louis at 5:30 (which meant we started boarding at 5 a.m.). WHATEVER WAS I THINKING!!! My first appointment wasn't until 12:30 on Tuesday but it was a non stop flight!  Roselyn Morris picked us up at Hobby Airport at 7:30 which meant she was up early also to fight the traffic to pick us up. Thank you Roselyn!  She also drove us to MD Anderson and dumped us off for our appointments. If I have one grump or should I say the only grump about MD Anderson is if you have to wait on a prescription, it takes anywhere from 2-4 hours to wait. ;-(

   Linda Burgener was in the MD Anderson area and picked us up from our day at MD Anderson. We had a wonderful meal at Candelaria's and had the best brick oven pizza ever!!  Linda also drove us down by Hobby Airport where we spent the night and flew home on Wednesday at approximately 10:30. Thanks Linda for always being there.

   Oh, you're probably wondering how my first months visit went. My labwork was exceptional except the alk phosp jumped 20 points. The other liver enzymes tests -the ALT and AST were well within normal range). We are just going to watch the alk phosp at the next visit. My platelets are jumping by leaps and bounds as is my white count (all well within normal range). My red blood count is normal. Creatinine is .08.  Bun was in normal range although I cannot remember it off the top of my head.  Dr. Funda Meric- Bernstam was very happy with the visit as far as labwork. I am feeling good and energy level is at about 95%. They are concerned about the screaming squirts I have been having and prescribed me some Lomotil to take every other day to see if it helps slow things down. I was having 4 to 7 liquid BM's a day.  BUT ....did I lose any weight? Ohhhhh NO!  I stayed the exact same as I was a month ago! This is one of the side effects of the meds FYI.
   I will have a CT scan at the next visit in July and I pray for stable or shrinkage. I am still the only cholangiocarcinoma patient on this trial in the United States. There are 22 other patients on the trial with other cancers....not all at MD Anderson. I am not sure if there is anyone else on the trial at all at MD Anderson.
   It was a good trip to Houston packing in lots of friend visits and dr appointments. Our computer quit on us while in Texas so I apologize for not posting sooner. I'll update in 28 days!

Hugs to all of you and stay inside....it's HOT out there!!

Patty Corcoran

Friday, May 27, 2016

On To The Next Chapter of Cancer~~

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