March 9, 2019 at 3:57 pm #98283
It is nice to hear from you and thank you for updating your story.
I am glad your surgery went well. Kudos that you found a surgeon who thinks outside the box. There are a number of patients who have had second and even third liver resections who have posted on the discussion board, and my impression from the research studies on repeat resections is that the prognosis is similar to what is expected with a first-time resection.
I hope your next scan and CA 19-9 show that all of the cancer was removed. Please keep us posted.
Regards, MaryMarch 7, 2019 at 7:58 am #98274
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 ….October 27, 2017 at 9:46 am #95972
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 …..October 27, 2017 at 9:32 am #95971positivityParticipant
That’s great! The tumor seems a small size. You may be a rare case as chemo not impacting you a lot. Lucky in that respect. Without chemo some individuals already have lack of appetite and low energy. How did you help your appetite?
Thanks for sharing your story.October 27, 2017 at 9:16 am #95969
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.”
FredOctober 27, 2017 at 8:42 am #95967positivityParticipant
That is wonderful news as it is not a guarantee for everyone, so it’s nice to now this is actually effective. How big was your tumor? Has it completely disappeared and how are you feeling?
In my mom’s case, chemotherapy was not even an option, even if some oncologists tried to push it. I had to use common sense.October 26, 2017 at 2:15 pm #95959spokanemomParticipant
Such great news!! Thank you so much for sharing.
VictoriaOctober 24, 2017 at 4:39 am #95933WmeiselParticipant
Its always good to hear great news. In a world where statistics are so glum, stories lift the spirits and heal the soul
Keep going and keep sharing 🙂
Rev. WayneOctober 23, 2017 at 10:13 pm #95931debnorcalModerator
That’s awesome news,Fred. Congratulations to you and thanks for posting!
debbieOctober 23, 2017 at 4:25 pm #95928
Thank you for sharing your great news!
Regards, MaryOctober 23, 2017 at 1:47 pm #95927
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 ….
FredMay 25, 2017 at 1:19 am #94866marionsModerator
Fred…You are welcome we are here to help and we are in this together.
In reference to “My oncologists are skeptical because of the risk of surgery and the likelihood of recurrence” I would want this confirmed by a super qualified surgeon. This cancer requires 2nd or 3rd opinions from physicians treating a “high” volume of cholangiocarcinoma patients.
Having said that the current path of treatment i.e. gem/cis, tissue analyses is pretty much the course everyone else would recommend. Winship sees a fair amount of CCA patients, but specialist disagree with their approaches, hence obtaining an additional opinion (or two) may also be beneficial. If nothing else you will receive confirmation that the current treatment prrotocol is agreeable with other physicians as well.
Happy to hear you are viewing the 2017 conference. It provides the most up to date information for this disease.
My motto is: an educated patient makes the most educated decision and knowledge is power.
MarionMay 25, 2017 at 12:11 am #94865
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!
FredMay 24, 2017 at 6:11 pm #94864marionsModerator
Fred…I agree with Mary’s assessment, investigate with another surgeon treating a high volume of cholangiocarcinoma patients.
Secondary resections are not uncommon, but much depends on the location of the recurrence.
You may want to take a look at Dr. Kato’s web presentation:
Surgical Management of Cholangiocarcinoma – State of the Art and Beyond
MarionMay 23, 2017 at 8:44 pm #94863
It is important to seek good surgical opinions, as some surgeons are more aggressive than others. There are surgeon recommendations on this board, if you search a bit.
My understanding is that re-resection is a preferred approach for recurrence if technically feasible and if the cancer has not spread. There are a number of discussion board colleagues who have had multiple resections. But many cases are not appropriate for more surgery, and other types of treatments are used.
The fact that one surgeon with whom you have consulted sees potential for surgery seems encouraging, even if you have other opinions in the mix. Personally, I tune out when a doctor tells me “all the other doctors will say the same.” Most doctors encourage second opinions.
Best wishes as you investigate treatment options.
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