Walking The Road

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

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

Thanks for your reply Mary.  His CA-19-9 had been slowly creeping up (I think had written about it in an earlier post in this thread) but since the scans weren’t showing anything the docs weren’t going to treat based just on that number.  It was a low drumbeat of worry for me and I was bracing myself that the number might be yet higher on this latest test but I was totally unprepared for it to be four times the reading he had right before Whipple surgery.  I think I was just so shocked by the number and struggling to accept that “we” were back in treatment that I didn’t ask the doctor what she thought.  To be honest I’m a little afraid to know what might be the implications of such a high number.  I do hope that it was an early catch and it really reinforces the necessity of frequent (every 3-4 months) scanning and monitoring in the first few years after diagnosis.

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

Hello Everyone- I’m updating our journey on the CC road.  My husband, Peter, got his quarterly scan on Wednesday.  We had a bit of a hiccup getting the results which caused a high level of stress but through the process we got assigned to a new oncologist.  It’s a story that I’m sure is familiar to many of you: Our first oncologist left our health system, we got assigned a temporary oncologist and didn’t have a favorable first impression, then the snafu with the scan results was the final straw and that caused us to ask for someone new.  We met with her yesterday and like her very much.

The scan report also gave us a scare for a notation about a 16mm liver lesion that was “concerning for tumor spread.”  Our new oncologist said that she looked at the current scan, and then she and a radiologist compared it with several scans from last year.  They saw that the lesion has been there since at least August (when he finished chemotherapy), and that it looked then to be about the same size and shape as it looks now.  Then I remembered that P had undergone a PET-CT scan in September for a different issue and that nothing had “lit up” in his liver.  If the lesion has been there since at least August and it didn’t “light up,” that would argue against it being a tumor.  When the oncologist heard that tidbit, she read the PET-CT scan report for herself and agreed with the logic.  She said the lesion could be a result of P’s Whipple procedure, so she is planning to contact his surgeon and ask him about it.  But she was was reassured that it was not likely cancerous.

As you can imagine, we were very relieved and happy—because the oncologist had given us calming news, and because we now have another person on our team who clearly does her homework, who quickly gained our trust, who took the time to explain her reasoning to us, and whom we like.  Another lesson learned: The radiologist who wrote the scan report was likely being cautious about the lesion—an approach we all heartily endorse—but, at the same time, different radiologists have been reading P’s scans throughout this past year.  So it’s possible for one radiologist to focus on something without knowing or reviewing the full “scan history,” as it were.

I do have a bit of concern or question about P’s CA-19-9 values.  His highest number, right before surgery last year, was in the 400’s.  The lowest was 45 last fall, but it has been doing a creep up and is at 128.  When we consulted with Katie Kelley at UCSF last Fall (we use her for expert second opinions) she said, “Try not to ride the CA-19-9 rollercoaster.”  Both she and P’s new oncologist have said it isn’t always the most helpful indicator.  Dr. Kelley’s cared for patients who had values in the tens of thousands and then P, for instance, was “only” at 400 prior to his Whipple.  So it’s hard to know what to do with these upward trending values when the scans and other blood work (ex., liver function) are basically fine.  I do think his pancreas is pretty weirded out (to use the technical term) post surgery and could have been chronically inflamed prior to diagnosis.  Our plan is to check in with Dr. Kelley to see what she thinks.

Wow!  I’ve written a much bigger update than originally planned.  It helps me think things through and I hope it will be helpful to others. Though I don’t chime in very often, I check this Message Board every day and have much appreciation and gratitude for this community. I missed out on the Salt Lake conference so I’m looking forward to watching the videos.  Peace and wellness to all, Tilly