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
Friday, May 27, 2016
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
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
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
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