I just saw a wonderful quote on Facebook – “I’m living with cancer, not dying from cancer.” I love it!  And that’s exactly what I’m doing.

Following are highlights of what happened in year 2 of my bile duct cancer journey.

May 2, 2015 – Met with Dr. Hong at Helen & Harry Gray Cancer Center to touch base with him on the trial I was about to begin and discuss my April hospital stay. We planned to stay in touch with him as often as we could as we still need this connection.

May 7, 2015 – Met with Dr. Zhu to finally begin the BGJ398 trial. I started with 125 milligrams of the trial drug. I took the drug every day for 3 weeks, followed by a week off. The trial drug does not allow phosphates to leave my body as normally happens, so I had to take a phosphate binder drug which helped to eliminate the phosphates from my body. In addition, I had to follow a phosphate-low diet.

End of May, 2015 – By the end of May I had several sores inside my mouth, along with  my fingernails just looking weird, the color was yellowish and they were bumpy. One nail was coming away from the base. And my hair was beginning to thin.  MGH prescribed the Miracle Mouthwash and Nystatin as after discussing over the phone with one of the nurses it was decided that I had thrust.  I was allowed to take Biotan for my nails and hair.

Early June, 2015 – My CA19-9, which is something that can be tested in my blood that can indicate how the tumors are doing, went from 242 to 36!!! This was amazing. 36 is considered a normal reading for the CA19-9.  This gave us an indication that there was possible shrinkage of tumors.  A CT scan is the real test to show how the tumors are doing.

June 17, 2015 – went to see Dr. Singh, my PCP and he prescribed an anti fungal mouthwash with an antibiotic. The mouthwash he prescribed helped to begin clearing up the sores.  It was a slow process though.  I was using oral Jel swabs to numb the sores when I ate and used the mouthwash after eating.

June 19, 2015 – Met with Dr. Zhu at MGH and requested that the dosage be reduced to 100 mgs because of the mouth sores.  He was hesitant at first, but then agreed to reduce the dosage.

June 25, 2015  – Back to MGH for a CT scan. Within an hour of being home I got a call from Dr. Zhu. He said he saw the scans, and there was dramatic shrinkage!!! YEAH! We were so happy. The CA19-9 going so low made us think that the CT scan would show shsrinkage.

Julie did some calculations based on the CT scan reports we got and they showed: 48% shrinkage in lungs, 33.3% shrinkage in chest, 24.6% shrinkage in liver. A 30% overall shrinkage!!!!

July 21, 2015 – I struggled with my hair thinning on a daily basis and while on vacation it got increasingly worse.  I decided when we got home that it was time to shave my head.  My hairdresser, Ann, was awesome. Ray went with me and we had Julie on Face Time. As anxious as I was, my mind was made up. It was the most freeing experience I ever felt. It really felt good. Thankfully I have a nice shaped head. So it was wig or scarf time for now on.  Which was another thing to get comfortable with.

August 21, 2015 – CT scan showed some more shrinkage.

August 28, 2015 – CA19-9 was up to 48. This was not a good sign. But I continued on the trial.

September 24, 2015 – CA19-9 up to 98.

October 14, 2015 – took last pill for the BGJ398 trial. The last CT scan showed a new lesion in the left lobe. And the CA19-9 was up to 173. The good news was that what had been a 6 inch tumor, was now 3.6 x 2.6 inches!!!! Pretty much had 50% shrinkage!!!!!

Next was to get ready for another trial. First I needed to wash out, so that’s 4 weeks without any medication.

November 17, 2015 – Had a biopsy for the new trial. They took tissue from the large tumor and the new tumor.

December 8, 2015 – After a busy few weeks going back and forth to Boston, I began the TAS-120 trial. Because this is a phase 1 trial, there is more testing involved. I had to spend the entire first day having blood drawn every hour and having my urine collected over a 24 hour period. We stayed overnight in Boston because I had to return early the following day. I was glad when that was over with!!!!

I started the trial on 24 mgs. Even though this pill also had phosphate issues like the previous trial, I did not have to take the phosphate binder the first week. Thought that was strange.

We also had to go to Boston every week for blood work and meet with the oncologist running this trial, Dr. Lipiya Goyal. She is fantastic!!!

So what transpired over the next several weeks was a roller coaster ride. Phosphate levels were too high, so I went off the drug for a week. Then the phosphate binder was added and the phosphate levels were too high, so had to lower the dose. Phosphate levels continued to be too high so I was eventually lowered to 8 mgs a day.

December 28, 2015 – Again, I had to have the blood taken every hour and collect the urine for 24 hours and next day early appointment.  The 24 hour urine collection meant I had to bring a bottle, etc. to the hotel room!  Julie was home for the holiday, with us at MGH and was going to fly out of Boston on the 29th. We got word from Jason that Heather was going into the hospital to be induced. Julie changed her flight plans and came back to CT with us. Our sweet Clementine was born on December 30th in the wee hours of the morning. Julie stayed for a few days. She had to go back home before Clementine got out of the hospital.

January 25, 2016 – CA19-9 was 205.
February 17, 2016 – CA19-9 was 292.

March, 2016 – CT scan showed 4.5% overall shrinkage.

April 20, 2016 – The large tumor was now 3.5 x 2.2 inches. But the CA19-9 was 800.  Not good for the CA19-9 to be going up like this.

May 26, 2016 – considered stable. Growth of small lesion in right lobe. CA19-9 was 1,095.

June 2, 2016 – So I was having a CT scan every 6 weeks and it was always a mix of shrinkage and growth, but all was minor. Yet, my CA19-9 continued to increase.

We also found out that for the trial, two tumors were selected from the liver and two from the lungs.  Because these were staying stable or slight increase or decrease, that’s why I was considered stable all these times, yet the other tumor in the liver was growing — but very little.  Dr. Goyal and Dr. Zhu’s assessment is, that tumor growing is why my CA19-9 has been going up over the past several months.

When we met with Dr. Goyal we decided to continue on the trial for another 7 weeks (if we get the okay to not go to Boston during our 2 week beach vacation) and then have a CT scan the week we return from vacation.  Then we’ll assess where we are and decide if it’s time to move on to another trial or chemo.  I’m going to do a TAS120 update with more information soon.

Thank you for your love, prayers and support.  You are my strength!