Tuesday, February 17, 2015

Clinical Trial Soon!

Well, Monday morning came and I received a call from my clinical trial research nurse. I have been approved to enter the trial...that is, IF I pass the eye tests, blood tests, heart tests, etc. I will leave for Houston approximately March 1st and we will drive straight thru. Not 100% sure where we are staying yet....the rodeo is going on during this time so a lot of hotel space was booked up long ago. We're working on it and we also have Linda Burgener who has graciously opened up her home to us. It's a 40 minute drive into MD Anderson so it's a big decision if we want to be that far away from the medical center.

The first week is all tests and I would take the first magical pill on March 10th as of right now. As I said before, I take the pill PLUS one to lower your phosphate level once a day for 3 weeks, then you are off the pills for a week. That is one cycle. After two cycles, they will do another CT scan to see if we have had any results yet. If it's stable, I will probably still be on the trial for 2 more months. IF it grows, I will probably be off the trial immediately and look for something else. I have faith it will all be ok and this is going to do the trick to settling things down inside this one nodule between my heart and my liver. O.N.E. N.O.D.U.L.E..........

I will have to go to MD Anderson once a month for blood work and to see the dr. That's a lot of driving but flying every time is just not an option right now. I am anxious to start the trial. Side effects are mainly slight nausea and fatigue. Also slight hair loss in some people. You know me...if it's hot, I'll shave this beautiful head and go "naked!!"  Wouldn't be the first time! ;-)
I am painting so frantically to get my children's book painted. I was up until midnight last night but I painted two pages yesterday from 10 a.m. to 12 midnight. It seems like I should be able to paint faster but it just doesn't work like that. I will say...this book is pretty cool.  MUCH better than the last one. We are looking at doing it in hardback this time. The cost might be $5 more but it's HARDBACK!  It just looks a little better. I hope it doesn't detour people from buying it for an extra $5.  ALL funds go to our Relay For Life team and a part goes to the Cholangiocarcinoma Foundation.

We have a few fundraisers coming up. We have a multitude of vendors that will be at the St. Joseph Multi Purpose Room from 9-12 on March 28th. We will have something for everyone. I think all or almost all vendors donate their commission (or most of their commission) to our relay team. Please mark it on your calendar! Our food is always good so order something and eat BIG! :-)   We will also have (DRUMROLL PLEASE) a second Italian Beef Fundraiser at the VFW on April 24th. Not sure on the time...probably 5-8 or something like that. It would be nice to get a band or someone to donate their time and play some tunes.....HINT HINT to anyone out there who might know of anyone.

I mainly wanted to update on the clinical trial. I will take this journey down to Houston and step by step, find my way back to Olney after I am "settled and the trial is working well in my body" and I will then just travel to MD Anderson once a month for checkups.  Prayers are always encouraged and  appreciated!!

The Feeding To Heal chemo program is working amazingly well. There has been a change where you sponsor a day and just pay $40 to feed the chemo patients. SO much easier than taking breakfast....then taking lunch. RMH will provide it all for such a reasonable cost!! Thanks to RMH for allowing me to start this program, to Mary K. Kocher who nudged me to get it started, To Debbie Lynch who is there to help find a donor when I am getting low on people signed up AND to ALL of the people who have/are donating to this worthwhile program.  I couldn't do it by myself so once again....."It Takes A Village."

I will keep you posted on this never ending cancer journey as it takes a turn here and there. I am blessed to be able to say I am starting my fifth year as a cholangiocarcinoma survivor! I AM BLESSED!!!! I AM A SURVIVOR!

God is Good ALL the time~~
Patty Corcoran

Sunday, February 15, 2015

Just A Small Update

I am trying to collect and gather all the info I can on the clinical trial I will be on. It is taking the clinical trial pill for 3 weeks straight, then off a week. That is considered one cycle. Then, we would start it over again...and again until the one lymph node that is located between the liver and the heart (close to the aorta). Just one nodule that wasn't there four months ago. It wasn't found on a CT scan that was done in December......so either it grew very fast or the CT just didn't pick it up!  THAT is why I like a PET scan.....it makes the nodule light up like a light bulb! I tried to "pin" my dr down and I asked "So...what is the percent approximately that this trial is going to work....he kinda did the "Well, we have hopes that it will work"....(not good enough for me as an answer). So I asked "Are we talking you're 100% sure it will work? ...70 % sure it will work?" He said he is very confident that this will get rid of the lymph node activity and it WILL do the job. He stated "I can't tell you I am 100% sure but I can tell you we are seeing some good results and I believe it is our best option."  OK...that's good enough for me as an answer.  Since I am on blood thinners, I am totally NOT eligible for the immunotherapy trial which I really had my eyes on. A lot of cancer patients have no problem with their blood/cancer but there is a handful that have a clotting problem and need to be on blood thinners like me.

I talked to the clinical trial nurse Friday afternoon and she said insurance has already approved me for the trial and what insurance does not pay for, Novartis (the drug company) may help with that. You have to be monitored pretty closely the first month for your phosphate level (and you take a pill daily to keep your phosphate level in range) and I will be on a low phosphate food plan. Hopefully, at the MOST, I won't have to stay in Texas more than six weeks. Then, I will just go back monthly to Texas for two days (probably a scan and blood work one day and a dr visit the next day). I will go back to Texas monthly for as long as I am on this trial. There are lots of side effects but a friend of mine has been on the trial for almost two cycles and she has just had fatigue and slight hair loss.  Some of the worst case scenario side effects are blindness, liver failure, organ failure....you know....not anything too bad to worry about, right?  About every drug I take have bad side effects if you read the papers from the pharmacy. It's a chance I will take as I have all the confidence that they will watch me so closely for bad things to pop up. MD Anderson has already met their quota of 10 people in the trial, so they had to get permission to enroll more patients. It was just approved this past Friday so there are a handful of us waiting to get started. This gives me hope that Dr. Javle has some evidence of positive results .  I told the clinical trial nurse that I searched this drug on the cholangiocarcinoma.org website and only one person talked about the trial and they had to go off the trial and died two months later. She said they have had atleast two on the trial right now who have had a good response in two months.....so with that, I will step into the unknown land of a clinical trial and leave it all up to God. It is a phase 2 trial so they have some of the kinks out of it.

As we were getting ready for our past trip to MD Anderson, I was a little worried we had no one signed up for March for the Feeding to Heal food program at RMH. I prayed to God to help me fill the weeks up in case I did need to stay in Houston for a lengthy stay. I posted on a Sunday morning and by Sunday night, I was booked until almost March of 2016!!!  Tell me my God is not an awesome God! I thank each and every one of you for stepping forward to help out this program that feed the chemo patients at RMH!!  Tim and Darlene Garrett are graciously supplying breakfast snacks for the Monday morning patients who are half day chemo patients. Thank you!!

Dr. Javle has stated many times that I don't have terminal cancer anymore (I have lived too long for that) but I have a chronic cancer and we will blast or tackle those little things as they arise. He is confident I will be here for awhile. But not even he knows the answer to that really. I truly believe it's all in God's hands at this point.....I am thankful to have such peace inside of me. I am thankful to know God is right beside me ALL the time!

Pat and I flew to Houston this time for a break from driving. We connected with our favorite "taxi shuttle" man named Moh. I have missed him and we caught up and talked about all the people I have referred to him. He thanked me over and over but it is the person being chauffeured that is blessed. Moh is such a spiritual man. We are blessed to have him planted in our life...even if only for once or twice a year.  We told him we would be coming to Texas for a stay and he just said, "If you need ANYTHING...you call me. I mean anything...not just a ride in his new Lincoln MKZ".  It touched me so much how kind he is EVERY time and I teared up. He said "NO TEARS! What are you crying about? I told him I was just humbled by his heart and how he is there to help us in any way. He said "PATTY KICK CANCER'S BUTT!!" and he said repeat after me!! PATTY KICK CANCERS BUTT!!  So, I will give it my best shot at kicking it. Anyone and everyone knows I hate losing. Whether it be a foot race...a task at my job when I worked...or coming in FIRST at the Relay For Life for the most funds raised in 2014, I don't like losing!!   We are SO blessed by all the people who have helped us with our time in Texas. Bruce and Deb Schonert (and Erika)are Angels to us and we have ate a lot of meals at their house and ate a lot of meals out (that usually always include dessert ;-). Linda Burgener is always there with a smile and offering us a place to stay. We have the Morris Family we have stayed with. They are wise in more ways than one and their kindness to complete strangers is something we all should take notice of AND be a model of.
                                                The Rotary House where we lodge at times
                                                        Serenity place at the lodge
                                 One of the MANY University of Texas Medical Center buildings
                                  Flowers? When we are expecting 3-7 inches of snow tonight in Illinois????
                                         The one and only....The GREAT Dr. Milind Javle
                                                                      Moh and Pat
                                                                       Moh and Patty
                                                               Moh's new ride  :-)

So, as I close this post. I ask for prayers that this trial goes smooth and with no problems. I will leave you with a few pics of our trip. It's been awhile since I have taken some and it also gives you a glance at the GREAT Dr. Javle who is known from far away places for his unlimited knowledge in cholangiocarcinoma.

Tuesday, February 10, 2015

Just a Small Curve Ahead....

It was a lengthy visit with Dr. Javle.  My tumor in the liver is stable...the nodules that were of a concern in the last scan pretty much resolved on their own. Everything looks good.....EXCEPT a small lymph node between the liver and the aorta/heart.  It is lighting up so he thinks instead of waiting for it to get any larger...or go elsewhere that NOW is the time to get that little monster child taken care of. He is looking at a couple of clinical trials and will call me in 2-3 days with a game plan. He is leaning toward a pill form clinical trial and will also take my case to the tumor board to see if another dr has a better suggestion. Dr. Javle is VERY confident we can take care of this.....it might mean staying in Houston a month and seeing him once a week....then I would have to go to Houston once a month. It's still in the air but I will keep you updated. It's not great news but I am calm and God's got this. It's gonna be just fine~~  I will update later as I know more. Gotta go
catch my flight!!



Friday, February 6, 2015

A pretty good fundraiser!!

Wednesday of this week, we had our first Italian Beef Fundraiser at The Gypsy in Olney. Even though there was a little snow.....we had over 90 carry outs and made more tips this year so as always, anyone who came or got carry outs, was very generous!! THANK YOU ALL WHO ATTENDED!!
We plan to have a second Italian Beef at the V.F.W. the last week of April on Friday night. Keep it penciled on your calendar please!!

I have furiously been drawing and now painting the 18 pages in my new book. The front and back cover are painted. I only have almost 5 pages but since we are leaving Sunday for Texas and won't return until Tuesday evening, I can hopefully tackle it as soon as I get back and get them to the printers. Jenn, my oldest daughter, after reading the story and looking at my drawings, stated this was way better than the last book!  I tend to agree with her. Stay tuned for updates.

So, we fly out Sunday around 4:30 and get into Hobby at about 6:30. Moh, our driver will pick us up and we will stay at The Rotary House which has a walkway to MD Anderson. I will get my blood work done at The Rotary House on Sunday evening. This means I don't have to go to labs at 6:30 on Monday morning. My scan is set for appr. 9:30 and we should be done for the day by 11:30.  I see Dr. Javle at 9 am Tuesday.  Our driver picks us up at 11 and we fly out at 1:30. It's all like clockwork and I pray I come out of there with good news.  All of us CC patients who have had radiation TWICE/chemo all know you feel those glitches, pulls, a small pain here or there...and wonder, "What was that all about?" But I just have to march in there like a soldier and know that no matter what, God is right beside me and Through Him, ALL things are possible!

I ask for prayers that my report is a good one! And I ask for daily prayers for a cure for ALL cancers! You just have no idea about what it can do to a body completely until you go through it. If YOU are reading my blog, you mean something to me. Some of you I may have never met, but I have learned you can love a friend without ever meeting them! So, thanks for checking in and reading my blog...which is, BTW, over 112,000 hits now. Around Feb 21, it is my 4 year anniversary date for having this monster. 4 YEARS! God is Good ALL the Time....ALL the time, God is GOOD!!


Patty Corcoran