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


Monday, March 28, 2016

Time For a Short Rest....

   As Pat and I closed in on our trip back from Houston, the odometer said we'd driven 971 miles when out of the corner of my eye I saw a big  BIG dear dart into my side of the front headlight. One leg flew past as the rest of the dear thugged, clunked, kerplammed against my side of the car. So.....Pat stops to see if there is any damage that makes the car undrivable (I am saying "No! Don't stop. It's drivable...we're 10 minutes from my bed....the bed I hadn't seen for 6 weeks. KEEP DRIVING!").  No...we have to stop. OF COARSE we do, officer!  It was drivable and I called in the report to the sheriff's office....telling them I'd be in the next morning to finish up paperwork. It was past 11 p.m. and Pat and I were both exhausted.  We ended up being so high on adrenaline that we unpacked the whole car that night, then we were in bed by  midnight.
   So, the six weeks of radiation wasn't too bad. I rested about 4-5 days if even for a couple hours. The last 5 days of radiation seemed to be the most taxing on me. I would a lot of those 5 days, have treatment at 8:20 and I was back to our nest and I was back in bed by 9:30 am. I usually slept a couple hours and was good for the rest of the day.  After I rang the bell on day 28 of radiation, we left for Illinois and I made it about an hour before I fell asleep for two hours. Since being home, I haven't napped much but today (Monday after Easter) I was up at 6:00 and back to bed at 9 a.m. and slept until 11:37 a.m.  I have felt pretty good the rest of the day. The radiation oncologist said it would take about a month for my body to start feeling better. I just need to take it easy and rest, eat well, and rest SOME MORE! 
   I had a book signing on Saturday and sold several books and lots of kids who wanted to see the lady that "makes" the Irene book. There are books to buy at Wild Imaginations on Rt. 130 or from any of my girls or me. Our Relay is April 30th this year so we really need to get serious about selling lots of books!
   What's next? I go back on May 9 & 10 for a couple of scans. One is a bone density scan to check for osteoporosis (since I have had 3 separate radiation treatment to areas of my body) and we want to take as good a care of this  body as we can with everything else going on. I will also have bloodwork and a CT scan of my chest and also one of the abdomen to thigh area. Time to see if the zapping that aortocaval lymph node is a success. I truly believe it did and I hopefully can rest easy for a bit. There is something about cholangiocarcinoma that some people never understand. You can get rid of the cancer...have it all removed, and it's back in a year. OR, you can have a transplant and struggle, get better, then the cancer comes back. ME? My doctor says I am chronic at this point. I just refuse to give up. It's not in me. So, we conquer one battle only to see something else come up 6, 9, or 15 months later. My dr always has a plan and it has worked for me. New treatments are coming so fast if, IF I can just hold on.
   In a few weeks, when it warms up just a bit more here in southern Illinois, I plan to walk with my grandchildren down our Suntone driveway. Point out the signs of life. The signs of new hope. That even though God died for all of our sins, He is RISEN and alive in all of us. The "little's" understand way more than you think. We stop at the creek and look for signs of little fish, little frogs, flowers, trees flowering. L.I.F.E.  Don't ever...e.v.e.r. take it for granted. That is what I guess I am trying to instill in these small grandchildren of mine. Appreciate the most simple things in life....sometimes they are the things that cost nothing but opening up the heart and the mind to let the love shine in!
   As I have stated before, life is all about TIME. A time to heal and a time to pray. I pray everyday that it is a time to heal for not only me but for so many family members and friends who are struggling with life right now. I pray daily for the homeless, the poor, the unemployed, the mentally ill, the list is sometimes so long I fall asleep before I say Amen. Sometimes on those oh so very tired nights....I just pray "Lord, please help our entire country!"
   So, as I end this post, I am recovering just fine. I have a new grandson (this blesses me with 7 grandchildren total!) that I would love to cuddle with every day. Until I go back to Houston in 6 weeks, I will rest, play, sleep, and LIVE.

Always Thankful~~
Patty Corcoran

Saturday, March 12, 2016

TICK....TICK....TICK....

   


   As I sit here in the computer room of the "mobile home rustic" campground (Pat's words for our Lakeside RV Resort), it is silent. The only thing I hear is the tick...tick...tick of the clock on the wall. Pat's computer blew up about a week ago, hence...no post in over a week. I have my tablet but for some reason I am unable to post with it.
   The last two weeks have just flown by and mostly with good days. I had two days where I had some symptoms/pain but it was minimal at best. But then again....as my husband jokes..."I'm pretty hard to kill".  I have surprised the dr's with my lack of "bad side effects" with high doses of radiation and the only answer I have is "I guess I really am hard to kill!  And I have an awesome God who directs me on this journey....THAT is  HUGE in the war on cancer and LIFE!  I believe it helps that they are just radiating an aortocaval lymph node.....not like the big mass that they radiated the very first time (although this last bout of radiation has more GY's cooking the lymph node than what I got for the original tumor).  8 days of radiation left plus the weekends.
   We went to the famous Houston Rodeo last night with Linda Burgener and had a good time. You know your old when you leave the concert at 11 because you're all worn out! And then it takes half an hour to find your car because you can't remember where you parked it......a mile or so away. It was humorous....or we made it that way. Sometimes...all you can do is laugh!
   I met a man in the radiation area this week who had been a chef his entire life (probably close to 50+) and he had contracted the HPV virus as a teenager from some girl and it laid dormant in his body for 30+ years and then caused cancer to activate on his tonsil. He had the tonsil removed and was cancer free for awhile before the he came home from work early one day because the whole side of his throat/neck was swollen up the size of a softball. Yip....cancer in all the lymph nodes in his neck. So he was getting his last dose of radiation in hopes to kill it off (I think he must of had surgery, then the radiation). I had no idea that men could get the HPV virus....so I want to put this out there for awareness. All you families with boys....it is just as important for you to inform your sons about this (just as much as it is for the girls but to also get the shot). I am not sure if boys/young men should get the vaccine but definitely worth checking into.
   I saw Dr. Javle this week and before I saw him, another dr following him around commented on how healthy I looked. Dr. Link was his name and he said I needed to be on the healthy side of the clinic according to my labs. Maybe someday........but for now...I keep marching, fighting, and praying to God to guide me on this journey.
   I want to thank all the people who have sent cards/packages of goodies/money to help us with our time down here in Houston. Every single card is like a ray of sunshine!
   I am super excited my third children's book is back from the printers. If you would like one, please try to come to my book signing the Saturday before Easter from 9-1 at Roll With It Bakery. The front cover does NOT do it justice as the inside pics are way better! The book is hardback just like last year's. The cost is $25 (same as last year) and it is tax deductible if you make the check out to The American Cancer Society or The Cholangiocarcinoma Foundation. Message Jennifer Cummins Zuber, Amy Rusk, or I if you would like to pick one up in Olney.....
   So...to sum things up, I am feeling pretty good for a cancer patient!  I thank God every day and I thank Him for all of you!
   I promise to post next weekend and I hope to see many of you at the book signing. We do have a few books left over from last year if you need to grab one.
God Bless~~
Patty Corcoran