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


3 comments:

  1. Tough choices to make. Stay strong.

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  2. You are one tough cookie, you deserve to cry when you want and laugh because you are still with us all, I have issues but not cancer, life is tough sometime's, but the good lord will make our decision for us. Love you

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