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Time for an (overdue) update.  At the end of January Peter was nearing completion of his 7th cycle of Gem/Cis (for a recurrence that was detected in late August) when he had to stop treatment.  The tumor in his liver was obstructing bile flow and he became jaundiced.  Additionally, his CT scan noted a small amount of tumor growth and other diffuse changes so chemo was discontinued.  At that point our main goal was to relieve the jaundice and get his bilirubin down (it was around 15 at the highest). Dr. Kelley (at UCSF) wanted to evaluate him for a trial that she was running but he needed to get his bilirubin below 2.

Due to his changed anatomy post-Whipple, it was decided that he would not be a candidate for an ERCP with internal stenting.  In late February he had a percutaneous (through the skin) biliary drain placed on the left side.  Because the tumor was in a central spot where it was blocking drainage on both sides of his liver the Interventional Radiologists felt that he would also need a drain on the right side in order to effectively get the pressure off of his liver and bring the bilirubin down.  The right side biliary drain was placed in mid-March.  We think of the drains as our “Frenemies.”  They are a bit of a pain literally and figuratively and have caused some scary moments, including an episode of sepsis that landed him in the hospital for a few days, BUT they have worked very well to get his bilirubin down (currently at 1.7).

As a result of the relieved jaundice, he was approved to participate in the UCSF clinical trial. This meant he was finally going to be back in treatment after three months without anything to challenge the cancer.  Relieved doesn’t begin to cover the feelings!  His trial is “Pembrolizumab and GM-CSF in Biliary Cancer” (NCT02703714).  I promise to keep updating, wishing all the best to the patients and caregivers here on the board.  Tilly

Time for an update on Peter’s treatment since his recurrence in September.  He has been continuing on the Gem/Cis regimen and will complete his fifth cycle next week.  He had a CT at the end of November that showed the tumor had grown a tiny amount on one side and shrunk a tiny amount on another side.  His CA 19-9 was still rather high but was trending downward. And he didn’t appear to have any new growths.  His doctor decided to call that “stable.”  Like so many CC patients before us, we have learned to be satisfied with stability.

Fortunately he’s tolerated the treatment well and has had only one infusion delayed. In early February he will have his next scan and then we plan to meet with Dr. Kelley (@ UCSF) for next steps consultation.

I have been closely following the posts that folks are leaving on the Discussion Board.  Your stories touch my heart and stay on my mind.  Wishing you all courage, hope, and peace, Tilly

Dear Victoria- Many thanks!  I too have been thinking about you and Patrick (and your kids) and was so happy/relieved to read your latest report.  Peter will start his fourth cycle of gem/cis the week of Thanksgiving and will get his first scan since re-starting treatment the last week of November.  “Nervous but hopeful” would sum it up!  So far he’s been tolerating everything quite well for which I’m very grateful.  Thanks again for your note, it meant a lot to me, Tilly

Hi Lili- Thank you for your kind note.  Early in Peter’s diagnosis we got second opinion consultation from Katie Kelley (at UCSF) and out of that we did have genetic testing done on the tissue that was recovered during his Whipple procedure (as well as MSI and HER2 testing).  His primary targetable mutation was an amplification of FGFR3.

For now both his primary oncologist and Dr. Kelley are advising the gem/cis regimen and hopefully an ablation.  Dr. Kelley has also put him in the cue at UCSF for clinical trials.  It was good to hear that your dad was able to have an ablation, thank you for sharing your experience.  Thanks again and wishing you and your family all the best, Tilly

Thanks Gavin. I’m just so grateful for this discussion board! I promise I will post updates. Blessings, Tilly

I type these words with a heavy heart: after his quarterly scan last week, my husband and I got hard news on Friday that the cancer appears to be back.  Our oncologist told us that a lesion on his liver, which had shown up on a prior scan but didn’t “light up” on a PET-CT in May, has increased in size (from about 2.5 to 3.5 cm), and his CA-19-9 has spiked dramatically (it’s at 1,600!).  Given those two pieces of evidence, she’s pretty certain that it’s a recurrence of the cancer and he is now officially at Stage 4.  The good news within the bad news is that the CT scan only showed that one spot as “worrisome” (the actual word used in the radiology report). The area where the cancer originated (gallbladder/bile duct) was clear.

The doctor wants to present his case at next week’s tumor board meeting to consult about treatment options, but she talked with us about what will likely be recommended as the plan moving forward.  Gem/Cis for three months followed by a CT scan; then perhaps another three months of chemo, depending on what the scan shows.  If the chemotherapy does its work and shrinks the tumor, the next step hopefully would be an ablation, where a needle would be inserted through the skin and into the residual liver tumor cells—and either heat or microwaves would be sent through the needle to “cook” them.

He has been free of treatment for ten months and this was very difficult news to absorb.  Peter is one of the strongest most hope-filled people I know but I can tell he is struggling.  He is having one last “normal” week at work and then we will face the dragon when we go to the infusion clinic next week.  I promise to keep everyone updated.  Yours in solidarity, Tilly