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 either it grew very fast or the CT just didn't pick it up!  THAT is why I like a PET 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 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 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 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 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.


  1. And you inspire me, Lucy Hazelwood!! Hope you are healing well from surgery! If I get rid of this nodule, maybe I will book a ticket to New Zealand to see you!!!!!!