May 19, 2019 at 7:43 pm #98646
Thank you for letting us know how you and Peter are doing. It is good to hear that Peter’s bilirubin is back to normal range and he has a treatment plan through the clinical trial. I hope it brings positive results. I looked Peter’s trial up on clinical trials.gov and was reminded again how resolutely the medical community is pushing the boundaries of cancer treatment.
From what you describe, the external drains are doing their job but not without inconvenience and discomfort, plus a worrying incident of sepsis. Hopefully this will get better.
We all look forward to your next update. Take care, regards, MaryMay 14, 2019 at 11:22 am #98561
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. TillyDecember 19, 2018 at 4:43 pm #97920
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, TillyNovember 13, 2018 at 3:37 pm #97780
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, TillyNovember 13, 2018 at 9:57 am #97771spokanemomParticipant
I have been thinking of you and Peter and I hope he is tolerating his treatments well.
VictoriaSeptember 18, 2018 at 9:07 pm #97533lilitmParticipant
Hi Tilly, thank you for your kind wishes for me and my family too.
I’m glad you got a 2nd opinion from Dr. Kelley at UCSF and found his mutation of FGFR3.
One thought – I would not count on one institution for a trial, but rather search his specifics on clinicaltrials.gov and call any relevant trials to talk to the trial investigator about the science, about whether Peter is a good candidate, etc. Then you can always ask Dr. Kelley’s opinion on any potentially promising trial – but if UCSF does not end up having the most promising one for his specifics, you don’t want to miss out on one elsewhere…
I find oncologists will always recommend first-line standard of care gem/cis chemo – but even so – knowing that the plan is an eventual ablation, I would perhaps inquire about priming him with immunotherapy?
Warmest wishes to you and PeterSeptember 17, 2018 at 3:45 pm #97519
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, TillySeptember 17, 2018 at 6:01 am #97514lilitmParticipant
Hi Tilly, I’m so sorry your husband is going through this, and you with him.
I am wondering if you can get them to do a needle biopsy to send for genomic testing at Foundation One or one of the other labs, to find out if he has any targetable mutations or immunotherapy indicators? (Ask for PD-1/PD-L1 testing as well as the ones they should already include – MSI, TMB, DNA MMR…)
He may have a better treatment option that chemo in that case… also regarding ablation – the trial we are on for my dad at the NIH right now uses immunotherapy (2 checkpoint inhibitors: durvalumab and tremelimumab) plus ablation (he got a perihepatic lesion radiofrequency ablated), in the hopes that the ablation will release neoantigens that the primed immune system can recognize.
Sending you my warmest wishes and hopesSeptember 8, 2018 at 11:56 am #97465
Thanks Gavin. I’m just so grateful for this discussion board! I promise I will post updates. Blessings, TillySeptember 5, 2018 at 10:38 am #97454gavinModerator
I too am sorry to hear this latest news from you about Peter and know that this is not at all what you wanted to hear. But I too hope that they have caught this early now as we all know that the earlier things are caught the better for many reasons. I know that it will be hard for you both to get back into the routine etc of treatments and all that that brings with it as well. But I am hoping that once this latest news and setback has been taken in that you will both get the boxing gloves on again and come out swinging. Thinking of you both right now and keeping my fingers crossed for the best possible outcomes with the Gem/Cis and other treatments that may follow. Please keep us updated on how things go.
GavinSeptember 4, 2018 at 7:30 pm #97450
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.September 4, 2018 at 1:30 pm #97449
This news was unexpected and disappointing but it sounds like your husband is getting good medical advice and a sound treatment plan is afoot. Hopefully the gem-cis will do its job and pave the way for ablating anything that remains after a few months.
Did your doctor have any explanation for the spike in CA 19-9?
It will be hard at first for your husband to start back on the chemo routine, but from what you describe the recurrence was caught early which is positive.
Take care, regards, MarySeptember 4, 2018 at 12:00 pm #97448
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, TillyMarch 23, 2018 at 11:35 am #96765
It is so good to hear from you, and have an update on your husband. It sounds like you got good news in the end, although not without going first on a scan roller coaster ride.
My impression is that patients get more freaked out by CA 19-9 than do their doctors. I know that for me, the days before the test can be stressful, and sometimes the wait to get results even more so. When a doctor becomes concerned by movement in a tumor marker test, usually the next step is to run other diagnostic tests such as blood chemistry and scans. From what you describe, Peter’s recent scans and blood work look good and your doctor does not seem overly concerned but will likely keep watching. You are right that inflammation and other benign factors can sometimes affect the CA-19-9. A second opinion hopefully will ease your concerns.
I hope Peter is feeling well and has recovered from his treatments. Your updates are very appreciated, and such a help to others just starting down the path.
Regards, MaryMarch 17, 2018 at 1:35 pm #96742
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
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