Forum Replies Created
May 14, 2019 at 11:22 am in reply to: Walking The Road #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. TillyApril 15, 2019 at 12:30 pm in reply to: My 42 year-old husband #98449
Hi Victoria- So glad to get this update from you! I am way overdue to do an update for us and I’m hoping I can sometime next week but in the meantime I wanted to embroider on to what Mary was saying about Keytruda. We met with Dr. Kelley (@ UCSF) recently and she said that there is a good medical argument for trying patients with CC on Keytruda even if they don’t have the genetic markers. She said there is a small percentage of patients who get a good response and there is no way of knowing who those patients will be ahead of giving the drug. She was not suggesting this as a first or second line but more if the options are starting to narrow. She further added that since Keytruda isn’t metabolized in the liver it isn’t crucial for the bilirubin to be in that magical below 2 range in order to receive the drug. I hope this is helpful to you (and anyone else who reads the discussion board). I continue to keep you and your family in my thoughts, all the best, TillyFebruary 23, 2019 at 12:03 pm in reply to: Oregon family #98198
Hannah- Thank you for sharing your family’s story, it really does help to build the collective knowledge base. I know exactly the journey you describe in terms of researching this cancer, my experience (on my husband’s behalf) was almost identical. I hope your mom’s surgery goes well and also her treatment going forward. TillyFebruary 23, 2019 at 11:55 am in reply to: Mom of Adult CC Patient #98197
Shellsbells- I am so sorry for your loss, my condolences to you and your family. TillyFebruary 23, 2019 at 11:49 am in reply to: 2019 Cholangiocarcinoma Foundation Annual Meeting Videos #98196
Thanks Gavin. It’s wonderful that you all were able to have these available so soon after the conference!February 3, 2019 at 6:39 pm in reply to: [Treatment Outcomes of Gemcitabine and Cisplatin Combination Therapy for Unresec #98096
In PubMed when an article title is in [brackets] it means that it is in a language other than English. But as Mary noted there will sometimes be an English abstract. You can find other articles on the topic by looking at “Related Articles” (to the right of the listed article) and if you click on “See all…” it will give you a list of more articles on the topic. You can then click on “Free Full Text” on the left sidebar and that will filter the results to articles that are available free of charge. Cheers, TillyDecember 19, 2018 at 4:43 pm in reply to: Walking The Road #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 4:00 pm in reply to: My 42 year-old husband #97781
Dear Victoria- Thank you for this update. It’s great that his new oncologist wanted to zero in on the cause of the fevers. Hopefully you’ll have even more clarity in the days to come. Very good news on Patrick’s scans as well. I appreciate your attitude of treating it like a chronic condition and keeping life as normal as possible. Peter is also continuing to work full-time (he is a professor too) and it gives him so much affirmation and pleasure. Wishing you all the best, TillyNovember 13, 2018 at 3:37 pm in reply to: Walking The Road #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, TillyOctober 21, 2018 at 7:08 pm in reply to: QED Therapeutics Presents Data for Infigratinib in Cholangiocarcinoma in Late Br #97686
Hi Mary and Gavin- Something like this link may have been posted on the board before but I thought it gave a good explanation of the “alphabet soup” names for targeted therapies. Cheers, Tilly
https://voice.ons.org/news-and-views/the-names-of-targeted-therapies-give-clues-to-how-they-workSeptember 17, 2018 at 3:45 pm in reply to: Walking The Road #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 8, 2018 at 12:05 pm in reply to: Intrahepatic cholangiocarcinoma: the AJCC/UICC 8th edition updates. #97466
I’m wondering if the Foundation could host a “Members Only” area on the website where some of the proprietary publisher content could be posted? Maybe that would make them more amenable to sharing articles/research if it is for patients and caregivers and wouldn’t be published on the open web. Just a thought. TillySeptember 8, 2018 at 11:56 am in reply to: Walking The Road #97465
Thanks Gavin. I’m just so grateful for this discussion board! I promise I will post updates. Blessings, TillySeptember 4, 2018 at 7:30 pm in reply to: Walking The Road #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 12:00 pm in reply to: Walking The Road #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, Tilly