June 19, 2017 at 3:22 pm #95179positivityParticipant
Thank you for sharing your story and joining our forum Tilly. It takes determination and courage. I remember when I found this forum, and was happy to know there was a population going through the same. I took the plunge and joined at a time when all this information was new to me. I didn’t even know we had bile ducts, as you can see knowledge from step one. I went through the same emotions as everyone, panic, sadness, worry, hopeless, and kept coming across poor statistics and interacting with some doctors was not favorable. I had to swim through the muddy waters of the unknown.
What I have learned so far, which is based on my mom’s individual case and having to go with my beliefs.
I believe the cause of CC is a high inflammatory state.
The standard chemo of gem/cis does not work for everyone and with the major side effects can make certain patients like my mom who has chronic anemia worse. (we had to turn down chemo)
Need more immunotherapy treatments, and patients should be requested a molecular test from the beginning not when the condition gets worse.
Unfortunately oncologists are extremely limited with what they can suggest and this needs to change.
This is just a brief overview of my experience, and I understand how difficult this condition is as I continue this journey. It was rough at the beginning of diagnosis, and I had to get it together and help, even if it’s just to control symptoms.
Working together in this group ,we can and will see changes.June 18, 2017 at 9:00 pm #95178middlesister1Moderator
I knew the medical jargon came much too freely for you to be new to it. You have already contributed to the knowledge base and I have a feeling you will do so even more in the future ( I’ll thank you now for it in case I forget later).
If we had only looked at the stats and prognosis docs gave us, Mom might not have bothered trying the chemo, and then we wouldn’t have been able to go on to other treatments. My Mom is not the norm, but she is not the only one who is doing much better then the ONCs said at diagnosis.
In May 2014, extended family all met in FL for a last hurrah for Mom- they said she had a year. Today we spent the afternoon shopping and went to lunch. It’s hard, but try to find the balance between reading the journals/stats, but then assume that many more are now surviving towards the upper end – or even longer- than the studies report. I’m pretty sure my mother’s survival through Y90 hasn’t been captured in the stats.
CatherineJune 18, 2017 at 7:16 pm #95177sfbaybreezeParticipant
Hello Ladies- Thank you all for your warm welcome. Catherine, in answer to your question: I am not a clinician but I am a medical librarian. I’ve worked in both academic and hospital medical libraries since the late 1980’s.
When my husband was first diagnosed I couldn’t bear to do any research once I looked at the five year survival rates for this cancer. Even though I could think of a number of logical reasons not to let the percentages rule Peter’s fate, I was terrified. One of my best friends said to me, “Don’t play the numbers game. How do you know he won’t be in that percentage that survives beyond five years?” It can be very hard to kick fear out of the driver’s seat. Some days are better than others but at some point I decided to put my librarian hat back on my head and start searching. I have colleagues who are amazing super searchers and I wouldn’t put myself in that category but I keep plunking away at it. I’m hoping I can contribute in some way to the knowledge base of this board. All the best, TillyJune 18, 2017 at 4:38 pm #95176marionsModerator
Tilly….welcome to our special group.
Happy to hear of Peter’s speedy recovery from surrgery. He has many things working in his favor, he is strong, has a great wife advocatinge for him and he is tended to by a fantastic healthcare team. Excellent.
Very few cholangiocarcinoma patients present with Micro-satellite instability, don’t think it encompasses more than 5% of all CCA diagnoses. And, we don’t really know yet the outcome of those placed on keytruda with this alterations.
So, the alternative options makes perfect sense in that one could expect a great response to Peter’s R2 macroscopic residual tumor.
Thanks for joining in and please continue to engage with us – we are in this together.
MarionJune 18, 2017 at 10:37 am #95175middlesister1Moderator
Sorry you were detoured here, but we’re very happy to have you join us. And, you are so correct with the details helping. I have seen questions on how long recovery takes from a Whipple. and your post gives valuable information to others. It also gives a waning about the risks of over medicating with the opiods- we went through this with my father and it took several days to get out of his system.
Just curious; are you in the medical profession?
We look forward to the updates and wish you r husband great success.
CatherineJune 18, 2017 at 5:10 am #95174spokanemomParticipant
Thank you so much for sharing the details of your journey so far. I appreciate the info and feel that it helps me with my journey as well. I am so glad your husband has responded well to his treatments so far. Congrats on the Whipple!!June 18, 2017 at 1:20 am #13459sfbaybreezeParticipant
Hello everyone – My name is Tilly and my husband, Peter (52), was diagnosed with CCA in March. I have been following the message board for many weeks now and have wanted to join but things were moving very quickly. I will apologize in advance for the length of this post but it seems as though the philosophy of this group is to share as much as possible both for feedback and to contribute to the pool of information. So here goes!
– Early warning signs in January when he felt a constriction in his chest and they ran all the tests for heart problems (blood tests, treadmill, etc.) and they said his heart was very healthy. The standard blood panel ordered by his primary doc was fine but in looking back, all his liver function values were at the top end of normal. In retrospect we think it was his bile duct starting to close with cancer growth.
– In February increasing nausea and dyspepsia, prescribed Pepcid. He was having dark urine and he mentioned it to his primary but the doctor suggested he might not be drinking enough water. Frustrating as a missed “catch” but ultimately it delayed diagnosis by maybe 2-3 weeks when…
– On the morning of March 1st he put on a white dress shirt for work and it was obvious to both of us that he was very jaundiced. So down the rabbit hole we went!
– Early March ERCP to place a stent and clear the jaundice. Late March a Spyglass ERCP for definitive diagnosis of distal CCA. Referred to a surgeon who recommended a Whipple. CA 19-9 in the 400’s. The hospital was very high volume for the procedure, basically one Whipple per week. And his surgeon (we loved him!) was the primary for 18 Whipple’s last year and scrubbed in on many more.
– Mid-April my hero husband endured a 14-hour Whipple. They were unable to do a pylorus preserving. I think the surgery went so long because he was strong and stable throughout and his surgeon was battling hard to get every bit of cancer he could. Unfortunately: he had tumor on his mesenteric artery that could not be removed. Fortunately: clean margins everywhere else and no lymph node involvement.
– Seven days in the hospital basically uneventful but for some scary opioid-induced delirium on post-op day two. Once they pulled him off the heavy drugs he did fine on IV Tylenol for the rest of his stay. We went home with a feeding pump (off after two weeks), a surgical drain (pulled after 25 days at home), and learning to manage his diabetes with insulin. The surgeon feels like he shouldn’t remain a diabetic but we’ve decided it’s not our biggest problem. CCA is our biggest problem. He is now nine weeks post surgery and he’s kind of the poster dude for super recovery from a Whipple but he had the advantage of being relatively young and in good health other than the 1,000-pound dragon in his biliary tract.
– When Peter was about six weeks post surgery we had a consultation with a UCSF Cancer Center gastrointestinal oncologist (Margaret Tempero). We got this appointment much quicker than we had expected. We couldn’t really call it a second opinion because we hadn’t actually had formal staging done or the referral to an oncologist at our hospital. Dr. Tempero outlined the Gemzar/Cisplatin first line treatment and said we should have the tumor tested for Micro-satellite instability (which she said our provider should cover) as well as genetic testing/molecular profiling (which she said our provider would probably not cover). We opted to pay for testing through the UCSF 500 Cancer Gene Panel (vs. Foundation One).
– There was some debate amongst his care team/hospital tumor board about whether he had gall bladder cancer that spread to his bile duct or bile duct cancer that spread back to his gall bladder. But his oncologist has said it’s all kind of academic because the treatment protocol is basically the same. So he’s either Stage IV gall bladder or Stage IIIB distal bile duct.
– Early June we met our oncologist and, after he had a chance to strategize with the other gastro-oncologists in the group, they recommended the SWOG S0809 protocol (Gemzar/Xeloda; 21 day cycle; 4 cycles; then Xeloda and targeted radiation of the tumor bed for 4-6 weeks). We do understand that most of the patients in the SWOG protocol had either completely resected cancer (R0) or microscopic traces of cancer (R1) and Peter has visible tumor (R2), but we felt that our oncologist went through a good process in reaching this recommendation and we are on board for trying it.
– Baseline CT last week showed no metastasis (praise be!); CA 19-9 at 89; Micro-satellite instability didn’t swing our way for going on Keytruda (I had my hopes high on that one).
– Started chemotherapy this past Wednesday and “so far, so good” as Peter has been saying.
If you’ve read this far, thank you for reading this far! I will do my best to keep the community updated on how things are going for us. In following this board as a guest for the last few weeks I have been so impressed with the folks who post to the site. Survivors, caregivers, and surviving loved ones have shown remarkable bravery and compassion, and given caring advice and guidance. I’m sorry that my husband and I have been detoured onto this difficult path but I was glad to find you all on the road. Blessings and thanks to everyone!
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