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Sorry for not providing an update. I had progression confirmed this summer (primarily a met to one of my ribs) and had to go off the trial. Back on gem/cis (for the fourth time). Looks like it’s working some: a late September scan showed no progression and some shrinkage. And my CA 19-9, which has already been a good indicator, has dropped from almost 1600 to less than 300. Next scan, Thanksgiving week.
I had my second “on trial” scan last Saturday and reviewed the results at Emory yesterday. So far, still good: no progression. Excerpts from the summary of the radiologist’s “impressions”:
- Stable
- Stable
- Decreased
- No new or enlarging sites of disease
I’ve now been on the trial for 16 weeks. No side effects to speak of. I’ll have bloodwork next the week of 2/20 and the next scan should be on or about 3/16. I’ll continue to report results/status and welcome feedback from anyone else on this trial. Thanks.
Fred
Well, it’s still early, but decent results so far. I had my first “on trial” scan on December 2, and reviewed the results with Dr. Akce, my Emory oncologist and the PI for this trial at Emory, on December 5. The tumor had earlier been measured as 2.6 x 1.6 cm. In this scan it was reported at 2.8 x 1.8 cm, within the limits to conclude no progression and for me to remain on the trial. Dr. Akce also noted that it has been very difficult to precisely measure this tumor and there was a pretty good chance it really hasn’t grown at all. There has been no spread, and I have had really no side effects from the trial drug.
I will have my next scan at the end of January.
Fred
Well, I finally started on this trial a bit over two weeks ago. So far no real side effects to report. I won’t get much of an idea about the effectiveness until my next scan in late November. I’ll keep this thread updated.
Fred
I may be going on this now Phase II trial. I’ll be meeting with Emory’s chief investigator on the trial within two weeks. Anyone have any more recent experience with this? Thanks.
Fred
An update after another ~17 months. And, after a lot of sad news recently among the Warrior community, I feel fortunate to provide a 17-month+ update!
My CA 19-9 readings started rising again in the spring of 2018, moving out of the normal range by late May. A July scan didn’t show any clear evidence of recurrent disease. But, as the marker continued to rise, an October scan revealed the recurrence. Same location as the 2017 tumor. Back on gem/cis for six administrations. This time the marker didn’t respond as it had before and my CA 19-9 peaked at 836 in December. But December scans showed no progression. With the support of my surgeon, we decided to schedule surgery to remove the recurrent tumor, recognizing that such a second surgery on now metastatic cholangio is “outside the box.”
Surgery on February 6 was successful. A tumor measuring 1.6 x 1.2 x 1.1 cm was removed, along with an impacted lymph node. Margins were clean and use of an ultrasound during surgery revealed no other obvious areas of concern.
I am now one month into my recovery and feeling better and stronger each day. My surgeon (Dr. Shishir Maithel at Emory) is pleased with my progress. I will have a CA 19-9 test next week, with the next scan to be scheduled in May. Fingers crossed ….
Nothing particular to help my appetite, just ate things that sounded appetizing. I found that, at times, I couldn’t even look at food-related commercials on TV! But I dealt with it …..
The new tumor (found in April) was 13 x 15 mm. They could not “find” it in the recent PET and CT scans, which is what the radiologist and oncologist described as “complete response.” Overall, I dealt with the chemo fairly well. Some light nausea (but never physically ill), impact on my appetite, etc. The further I get from the chemo, the better I feel; my energy level is about “back to normal.”
Fred
Thought I’d provide an update in hopes it may prove encouraging to others facing this challenge.
I completed 12 rounds of gem/cis on October 4. A PET scan on 10/12 and a CT scan on 10/19 revealed “no evidence of disease.” The radiologist and my oncologist described it as a “complete response” to the chemo. That said, I fully understand there are probably residual/wayward cancer cells still in me, and there is a very good likelihood the cancer will return–and perhaps sooner than the four years I had the first time. I’ll get blood tested monthly and scans quarterly and we’ll keep watching this thing. But to others facing this, there is the possibility of a good response to the chemo.
I’d be glad to expand if anyone has questions ….
Fred
MVP:
Just read through your wonderful post. As posted recently elsewhere here, I too have a had a good run after my initial diagnosis (~4 years), but the sucker has come back. Like your reference to Sally Toad leaving some tadpoles with her departure. But, yes, it has been amazing the developments and alternatives in just four years. To all the survivors out there, let’s stay vigilant but keep fighting. We all have much to live for. And let’s continue to share what’s working in this wonderful forum!
Marion:
Thank you for the link to the video; this was helpful. I won’t face the decision on surgery until we at least go through the round of chemo to see if we’ve contained the tumor. But I remain interested in the surgical option if it then makes sense and we have a chance to get a Ro resection. My oncologists are skeptical because of the risk of surgery and the likelihood of recurrence (Dr. Kato’s “surgical profit” equation). Dr. Kato also indicates that recurrent tumors are generally not considered good options for a second surgery, but it may be considered in some cases if the tumor is clearly contained, etc. When I get to the point where it might be possible, I’ll be aggressive in investigating surgical and surgeon options. Once again, I am most interested in “starting my clock over again.”
Also, Laurie Kikel referred me to the presentations from the 2017 Cholangiocarcinoma Foundation Conference. This is a great resource and I’ve started working my way through the material.
Thanks to you and your colleagues for all you’re doing to help us!
Fred
Update. I had a consultation yesterday with Dr. El-Rayes with the Emory Winship Cancer Canter. He recommends starting the standard chemo regimen of cisplatin and gemcitabine, with regular CA 19-9 tests to monitor and a CT scan after the first several chemo sessions. We’d continue the chemo if it appears to be working. Concurrently, they are sending my biopsy sample to Foundation Medicine for gene testing to see if any of the newer therapies might be promising for my specific situation. If the chemo doesn’t start working on the tumor we may look at a trial involving immunotherapy.
A couple of questions for folks out there:
1. Both Dr. El-Rayes and my primary oncologist have said that surgery is typically not an option for recurrent CC. But as I noted in my original post, my surgeon feels that surgery might be able to get the tumor, as long as we’re pretty sure it hasn’t spread. Anyone have ideas why “second surgeries” are downplayed? (My tumor is extrahepatic.)
2. I asked about the value of another opinion, and was told I would probably get the same alternatives presented to me yesterday. Anyone have a suggestion of the best place to contact, and if they can/will consult remotely if I send them a couple of my most recent imaging studies?
Thanks to all!
Fred
