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

Tuesday, May 17, 2016

The time has come!

I received a call from the clinical trial coordinator at MD Anderson today and we are ready to rock and roll. They have the consent form that we have been waiting on ready and insurance clearance is done. They have me scheduled for bloodwork and an EKG before giving me two months supply of the drug for my targeted therapy. This is part of the NCI Match Program that the U.S. Government put a ton of money into to get some clues...answers about cancer and get a cure maybe a little sooner. This trial started with ten arms and have JUST opened up several new arms including mine.

I am not really a "fit" for immunotherapy right now and I truly believe this is the path I am being pushed towards right now. I will hopefully be able to do immunotherapy in the future....and I can leave this trial at any time. I have been explained the side effects of my drug (which was FDA approved for pancreatic, prostate, and kidney cancers) and the best part is it is for my mutation. Or....I should say loss of the P-TEN alteration. The side effects are minimal hopefully.....   Not really sure if I will lose my hair....nor do I really care. :-) 

I will travel back to Houston after two months for bloodwork, EKG and a scan. Then a visit with the clinical trial dr...and if all goes well, I will get two more months worth of drugs from Glaxo Smith Kline. In between the visits to Houston, I will have labs drawn in Illinois to make sure my labs are safe.
So....Pat and I will leave Sunday for Houston and stop somewhere...then drive on in for a 10:45 lab draw and to sign the consent form to get me in this trial. We will be in Houston about 5 days at the most....I hope.

I am excited and positive that this will get rid of any nodules, nodes, or any other little cancer cells lurching around in my body.

Please keep us in your prayers and pray this trial does good things and shows positive results with my cancer. I will keep you posted as things progress in the next few weeks.

I am a survivor....I am a warrior....and I am a fighter. This girl doesn't give up...and I always...ALWAYS know God is right beside me. I feel safe...I am not afraid...I AM READY!

In Faith~~
Patty Corcoran

Wednesday, May 11, 2016

Not a big deal....yet.

My trip to Houston didn't end with roses and champagne but it didn't end with hot dogs and ants either. My bloodwork looks really good for a cancer patient who just had 28 days of cookin' a lymph node. My platelets are at 134,00 (normal is 140,000 to 440,000). White blood count looks good...my creatinine is 0.73 (normal is .73 to 1.0).  My alk phos is 151 which is slightly high as normal is 38 to 126. The alk phos is the only liver enzyme that is elevated. So....all in all, my bloodwork looks great for a cancer patient with intra hepatic cholangiocarcinoma after 5+ years.

I first visited Dr. Das, Radiation  Oncologist and Head Chair in the Radiation department at M.D. Anderson. And he has been my radiation dr for approximately 4 1/2 years. He is so smart but careful when zapping a patients body. He is one in the top of his field and even though his specialty is colorectal cancer....he's got a perfect 3 for 3 score in zapping my mass, nodules, and whatever else needs zapped without causing too much harm to anywhere else. Dr. Das was very happy with my report today and I am happy that the nodule they were radiating is now dying forever.

My next visit was with Dr. Javle. He was happy with the radiation report that stated that the radiated nodule is "on it's way out" BUT there were some other areas of concern to look at. Nothing like a Whopper or Junior Whopper sized problem but there is a perirectal nodule noted on 10/19/2015 that measured 1 x .03 cm and is now 1.6 x 1 cm. It was so small before they called it a "very tiny density" but since it has grown somewhat in the last 7 months...it is now a small concern. There are a few other retroperitoneal lymph nodes noted on prior scans that are now smaller on my new scan. Dr. Javle stated the main tumor that we started this journey with is now showing nothing but scar tissue and calcification. He said he rarely gets to see this because most patients die before their dead tumor gets to this point. So he was very happy to see it at this point. Dr. Javle said we could wait two months and re-scan or I could see Dr. Funda Meric-Bernstam, Head of Research and Clinical Trials at MD Anderson. She is also a breast surgeon on top of that! She is truly the smartest person I have spoken with thus far when it comes to the genetics of cancer. I am not really the "sit and wait" type of person and in the past it has usually ended up with things growing and then we needed to act so I decided to see Dr Funda (which is what I call her at home as her name is tooo long)! Dr. Javle told me he and Dr. Funda had discussed this trial and both agree it is a viable option at this point.

I have met with Dr. Funda before when I was trying to get into the MATCH Program. My mutations switched all up when they did the biopsy for the MATCH Program and one is called the loss of P-TEN. I had P-TEN...and now I have the loss of it. All drugs in the MATCH program is either FDA approved or in phase two trials. When she saw they had an arm open in the MATCH trial, she pushed and prodded until she got that arm for the loss of P-TEN because that is what showed up on my biopsy report as being my mutation.  She had me specifically in mind for this trial. She fought for it to be approved....and it is within days of being approved. It is a targeted therapy trial but in phase 2.  Loss of P-TEN makes the protein stop working so therefore I have a DNA alteration as well as a protein alteration that makes it align. This is a good thing.  There is a very complicated grid that a trial goes through before getting approved for an arm in the MATCH Program. Yes, this drug worked for prostate cancer but has not been used to her knowledge in a cholangiocarcinoma patient. Someone has to go first as a lot of CC patients have found out with other drugs and trials. The drug has some side effects that are manageable and Dr. Funda will follow me closely. The good thing is it is a 28 day regimen where I take a pill and go for bloodwork here in Illinois and every other month, I will travel to Texas for testing and a scan. Funda has always known I will not do phase one trials....just too far from my family and grandbabies!!

So.....I will keep marching! I will praise and thank God for every sunrise and every sunset! He leads me......and I am thankful every day!!  Keep praying....keep caring....keep me in your thoughts!! I wouldn't call this a BAD visit....just a decision I had to make on whether to sit tight and wait and see option for two months....or let's hop on the train and get this a moving now. I choose the second option.

O....What a Wonderful World~~~

Hugs!
Patty Corcoran


Saturday, April 16, 2016

Moments that count the most...

Well, my car has been repaired from the now deceased deer that hit our car on the way home from Houston. Rental cars are a lifesaver but man was I glad to get my Buick Lacrosse back! Drives like a dream....atleast to me.
Life is moving so fast...or so it seems. Between taking family to dr appointments, picking up grandkids from school, having playdates with grandchildren, selling my children's book, selling luminaria's for our Relay for Life, getting the 5K/1 mile walk lined up with volunteers, not to mention helping get all the supplies for our own team on the day of the Relay. It just seems like I want time to S.L.O.W.   D.O.W.N.!

By the way we have just about 100 Irene books left....so if we have not got one to you and you want one, I would suggest making contact with one of us.  We have books that have been shipped to Canada, Washington, Hawaii, Iowa, Arkansas, Texas, New York, Tennessee, and maybe some places I am forgetting. So....in about 3 weeks, we have sold 300 books. Whew! 

I saw my local oncologist this week. Just a checkup since I hadn't saw him for approximately 6 months. Radiation plays havoc on a few of the labs but they are slowly going in the right direction. When I left MD Anderson, my CA 19-9 (cancer marker) was 11.1,  the bloodwork I had drawn last week  shows my CA 19-9 at 4. Dr. Dy thinks that is a pretty good indicator that the radiation is working. He is so happy with the stability of my disease. I told him there were so few left that started the journey when I did. I told him I could only think of one in Pennsylvania.  He said 99% do not live as long as I with just chemo/radiation/and clinical trials. I am in the 1 percentile with my type of cancer meaning my cholangiocarcinoma is the slowest growing he has ever seen in a patient with this cancer.  So does that make me lucky? Mmm...I'm not sure what you would call it but I thank God that I am still here making memories with friends, family and inspiring others to never give up!

Pat and I have been cleaning the flower beds one by one. WHY did I think I needed them all over our yard?  I worked three hours outside this morning and it was pretty hard physical labor.....then I was done for the day!  I showered and rested. The effects of radiation is just taking it's time leaving my body and it kinda stinks!  Little by little....time here and there...the flower beds will be cleaned.

So, this is my life. I am living it as best that I can. I am so very blessed. I hope to get a GREAT report in Houston May 9 & 10th. I pray for a break from any treatments. The longer I can stall, the better chance of a treatment for my mutations to come along. So, I will not be in a hurry to jump into immunotherapy or any other trial until it is a do or die situation. Each day I can feel my body returning to normal. I am getting ready to dust off my bike if only time would slow down a bit!

May you all have a wonderful day....and be thankful for your minutes in your life. They are so very, very precious....don't let them pass you by without stopping to give thanks. You never know when a curveball is going to be thrown into YOUR life.

God Bless~~
Patty Corcoran