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Just finished my day at the Mayo Clinic and I’m elated.
Blood work is all perfectly normal. CA 19-9 is 11. They did CT scans w contrast from the chest to the pelvis and everything looks great. Clean scans! Normal post-op healing and recovery and no signs of recurrence.
I’m just about due for a colonoscopy so I’ll do that tomorrow just to put my mind totally at ease. If it weren’t for prepping of that test tonight I’d be out celebrating.
I’ve decided againt adjuvant chemo. I personally see too much risk for too little benefit.
I will come back to Mayo in 6 months for another follow up. In the meantime I intend to make them the best 6 months of my life thus far.
-MattMarch 31, 2014 at 3:59 pm in reply to: IIIntrahepatic post surgery…My story and welcome to it #81135
This is what the Onc @ Mayo recommended as I met with him while in bed recovering from surgery:
“We reviewed with Mr. Reidy that we are hopeful that this tumor was completely resected and node negative. Despite this, I think the recurrence risks are still significant. Given the rarity of the tumor, there are no prospective randomized trials regarding the value of adjuvant therapy, but retrospective analyses would suggest there is likely some value to this.
In general, I have recommended six months of adjuvant gemcitabine as a very reasonable starting point for discussion. This is the most active single
agent in this disease and does have proven adjuvant benefit in pancreatic ductal adenocarcinoma. This is often well-tolerated with only a few severe side effects such as TTP and pulmonary fibrosis.
In metastatic disease, the addition of cisplatin to gemcitabine improves response rates and progression free survival and overall survival. He understands it is unclear whether that means it would be of further adjuvant benefit, but if the physician and patient wanted to err on the side of being more aggressive, this is also quite reasonable.
One could consider gemcitabine and cisplatin in the day 1, day 8, fairly low dose platinum schedule as outlined in the New England Journal of Medicine phase III trial in advanced disease and perhaps attempt four to six cycles of this.
I would certainly back off early with the cisplatin given the unknown benefits if he ran into early troubles with renal toxicity, neurotoxicity, ototoxicity, or other toxicities.”Iowagirl wrote:Matt, I really appreciate you replying to my first post here. You are the very first person who seems to understand exactly what I’m feeling right now. I’m considering finding a therapist to talk with…..heck…at this point…my out of pocket is more than met…why not. I’m glad to hear that is helping you. What were the long term effects of the chemo you mentioned? I’ve been trying to look into this, but since I have no idea what they have in mind, researching it is a shot in the dark. I think that because I had a small satellite tumor along with the main tumor, my survivability goes down some, and intrahepatic tends to come back more frequently from what I’ve read. What the heck….all bile duct cancer is bad stuff. I, too, am hoping to be in the 60-70% chance group in which it doesn’t return. Really….I am soooo glad to hear from you though. The emotional and anxiety aspect of this and reactions of people around me just has me feeling out of control. I am quite certain that most everyone who has been diagnosed with cancer of any kind has these feelings to some degree, but when you get a diagnosis of bile duct cancer….or pancreatic cancer….some of the more aggressive and resistant cancers and you hear the numbers, it’s more depressing.
I’m heading back to Mayo next week for some follow up after a frustrating time getting anyone locally to act with any sense of urgency.
Today I am 10 weeks post op and have had nothing but blood work done. It’s all looked very good, including one CA 19-9 result, however, I just don’t feel “right”. I don’t know if the way I feel is my new normal or something else and my anxiety about it is through the roof. My back hurts. My bowels are sensitive with pretty regular movements but they range from constipation to diarrhea in the same sitting. Maybe that’s just the lack of a gallbladder? I’ve got head aches and I’ve never had them in my entire life before. I can’t feel my bladder getting full like I used to… Maybe that’s nerve damage from the incision across my belly? I fell something but it’s not like it was. I get strange sensations bordering on pain sometimes all over in my GI tract. We have a family history of colon cancer. I’m 47 and had a colonoscopy at 40 that was clear. I don’t have bleeding or blood in my stools or other typical symptoms so hopefully it’s just my anxious mind. I’m afraid to ignore the off/odd feelings I get now. The last time I had some, they ended up being CC!
While I’m at Mayo next week I’ll get blood work, a CT of the chest, a demon, and pelvis, meet with my surgeon who will review the scans to validate my new anatomy, meet with my regular doc who will review scans for recurrence of CC, meet with an onc to see if they recommend anything new, other than gem/cigs, and have a colonoscopy to rule out any colon cancer going on in there.
I’m starting to feel the scan anxiety so many talk about here. Yuck
Thanks for “listening”.
-MattMarch 28, 2014 at 10:58 pm in reply to: IIIntrahepatic post surgery…My story and welcome to it #81127
You’re not alone in your emotions. I had a successful resection at Mayo for Perihilar CC and can’t help think about and fear recurrence every day now. My surgery was not laparoscopic and I’m still not comfortable after 10 weeks of recovery. I’ve found a local therapist who is also a nurse and she’s great to talk to. Everyone seems to expect me to forget it and live on as if it’s all behind me. I sure hope I prove the stats wrong and end up on the good but small side but only time will tell. I’ve chosen to not do adjuvant chemo at this point for several reasons, primarily the lack of evidence that it helps and the preponderance of evidence that the long term effects are not good. Who were the docs you saw at at Mayo if you don’t mind sharing?
Continued good luck to you! -Matt
Dan, I’m sorry about your father’s and your extended family’s journey. You’ve found a great place for support and advice here. I started my own similar journey with CC this past December.
I had a combined ERCP and EUS procedure at the Mayo Clinic in late December after an MRCP at my local hospital showed a mass and biliary dilation. During that procedure they installed two stents to get my bile flowing again and also attempted to get some cells via “brushing” so they could confirm CC via pathology. The brushing didn’t yield any cells so we went off the imaging and symptoms to conclude CC. You may not get physical/pathological proof.
I have to agree with your statement “this is a bad illness for a 56 year old let alone an 86 year old”. I had successful surgery to resect the tumor in mid January at Mayo. I’m only 47 and otherwise extremely healthy. Recovery from my surgery was a lot more difficult than I expected, maybe because I had two surgeries in 24 hours. It’s 8.5 weeks post-op now and I am just back to work yesterday and starting to feel somewhat normal.
I will be thinking of you, your father, and the rest of your family at this difficult time.
The more we all share and care, the better.
I’m considering this good news. I got a call this morning from the nurse at MCV where I had some labs done yesterday and my CA 19-9 results were 12. In December at Mayo prior to my resection they were 453. The tests weren’t performed on the same equipment so it’s not fair to compare, I’m told, but 12 seems like a good low number so I’m happy about it. Next follow up is an MRI at MCV in a few weeks and then back to Mayo in June for labs and a CT.
Make the best of your day and weekend everyone – I’m intending to! (exercising my positive attitude here)
Thanks for all the suggestions and advice!
Thanks for the info and replies!
I had an appointment with a local liver surgeon here at MCV in Richmond, VA today for what I thought would be a post-surgical follow up visit. After getting some blood drawn and waiting for 90 minutes I never did see the doctor, only a pair of nurses. They’re scheduling a scan for me in the next week or two to establish a new basline of my anatomy after surgery and make sure things look ok. Of course they’ll also be looking for any recurrence too. I asked for an MRI vs CT since my last scan at MCV was also an MRI and they could easily compare the two.
Since I waited for so long, my labs were ready and they all looked normal, which is great. They didn’t run a CA 19-9 so I asked if they would and they agreed. MCV uses different equipment than Mayo for the test. Mayo uses a CA 19-9 assay mfg by Beckmann Coulter and performed on a Unicel DXI 800 and warned that results not obtained from the same setup can’t be used for apples to apples comparisons. It should be interesting to see where the MCV number comes out nonetheless.
I’m scheduling a trip to Mayo for June that will include a CT scan and CA 19-9.
They are also scheduling a visit with an oncologist for me in the next few weeks. I still have at least 2-3 weeks to go before my surgical wounds heal so my hands a tied when it comes to starting adjuvant chemo anyway. More time to dwell on the decision and gather facts and advice.
Trying to stay positive and live a day at a time… It’s the hardest thing! Finding myself brought to tears at the slightest thoughts and sights… Other than “talking” with all of you wonderful people, any suggestions to seek counseling/group/self help in that area as well as reducing stress? I’ve always been a worrier and this really cranks it up!
Porter, I’m still undecided on the adjuvant chemo. I’m 8 weeks post-op now and still have a few open wounds on my incision that need a few more weeks to heal up. I don’t think I could start chemo with these open wounds – I assume they would stop healing and infection would likely set in, but I don’t know for sure.
I spoke with my primary doc at Mayo this week and his opinion is still “why do something that has no evidence of being effective”. I also got a the notion from him that the length of time that has elapsed since resection might be a factor – the longer you wait to do it, the less effective it would likely be.
Of course the oncologists at Mayo recommended it…
Please keep us updated on your chemo as you go and best of luck to you!
I’d love to hear more after your meeting on Friday as I’m struggling myself to decide if I should proceed with chemo post-resection. The more detail, the better! I’m 6 weeks post op and just beginning to feel like life can get back to normal.
Good luck on Friday. I hope you get clear answers that help you decide what to do next.
Here’s a timeline with a few more details of my journey thus far:
Wed 12/11/2013 Initial Visit to General Practitioner:
After several weeks of itching, fatigue, and mild abdominal discomfort I finally go to my GP where they drew blood for some testing.
Thu 12/12/2013 Emergency Room Visit:
A 6:00pm call from my GP with results from the blood testing the previous day freaks me out and I go to a local ER hoping I have gallstones or Hepatitis and not this cancer thing on the Internet that I don’t even know how to pronounce.
Blood test results from 12/11/2013 were Bilirubin (total) 5.3, ALT 741, AST 352, Alk Phosphatase 833
At the ER they do more blood tests as well as urine tests. They do an ultrasound and a CT with contrast. CT shows intrahepatic biliary dilation. UltraSound shows mildly dilated common bile duct, mild intrahepatic biliary dilation, and mild thickening of gallbladder wall.
I’m discharged from the ER after midnight. I’m scared and exhausted and decide to take the following day (Fri) off work to search for a specialist. I chose a local Gastroenterolgy Hepatology practice associated with the local medical college, Virginia Commonwealth University / Medical College of Virginia (VCU/MCV) and was able to get an appointment with one of the doctors for Tue of the next week. Now I’ve got all weekend to continue worrying and doing my own research. I had Hepatitis blood tests even though it was a long shot, and the results were not yet in, so I was still hoping that might be it.
Tue 12/17/2013 Specialist Visit:
This was a brief visit just resulting in more blood tests.
Wed 12/18/2013 Admitted to VCU/MCV for Testing:
I’m back at work and receive a call at 9:45am from the specialist I saw yesterday. He says to me “I have your blood test results and am very concerned. I am admitting you to the hospital for more testing. Go home now and pack a bag. Expect to spend a few nights. Someone will be calling you to tell you where to go.” I am in shock and really afraid now. I call my wife at her work and give her the news, find my boss and let her know, and head out.
I’m at the hospital with my wife by Noon. I’m subjected to an MRI/MRCP and told that, depending on the results, I can expect a liver biopsy and/or ERCP the following day. I have to wait on results from the MRCP until the following day.
By now I’ve let my parents (78 & 79 years old) who live in Western NY State know what’s going on and my mother hops on a plane that afternoon. She arrives in Richmond, VA that same evening for support and to help care for the kids.
Thu 12/19/2013 “C” Day:
My wife and mother are with me when the attending physician and a fellow break the news that they see blockage and strongly suspect cholangiocarcinoma.
An ERCP is scheduled but at the last minute they decide not to move forward with it because the head doctor of the local VCU/MCV practice had been consulting with Dr. Greg Gores at the Mayo Clinic and they believe I may be a good candidate for Mayo’s protocol that involves chemo and radiation followed by a liver transplant. I am told that had they performed the ERCP and taken brushings locally, I would not be able to be considered for the Mayo protocol.
I’m in communication with the financial office at the Mayo Clinic at this point so that they can determine if their protocol is covered by my insurance. It was just past 5:00pm ET so I was forced to wait until the following day to hear if it was or not.
Fri 12/20/2013 VCU/MCV Discharge:
I’m still waiting to hear back from the Mayo Clinic’s financial office on the insurance coverage. I asked my attending physician what people with no insurance or people who’s insurance doesn’t cover a transplant do? He looked at me with a stone cold face and said “They die. That’s our system in the US.”. My jaw dropped open. At 47 years old and without a single health issue my entire life I never read the fine details of my health insurance. Annual maximums? Lifetime maximums? Coverage limitations? How can such things exist, I thought.
Thankfully, I work for a fairly large company and have great insurance that does cover transplants and has no annual or lifetime maximums. I received word mid-day that the Mayo protocol would be covered. In fact, my insurance would even cover the related travel and lodging expenses for myself and a caregiver. Amen!
I was anxious to get out to Mayo and begin the testing/evaluation for their protocol and started working with them to that end immediately and managed to get set up for appointments starting Mon, 12/23/2013.
While waiting to be discharged, I made one-way travel plans for my wife and I to fly out to Rochester, MN on Sun, 12/22/2013.
I was discharged from the hospital and home by dinner time that evening. Our heads were spinning. So much to do to get ready to go… so many unknowns… not being home for Christmas with the kids…! My father made arrangements to drive down to VA to be with my mother and four kids for Christmas and beyond.
Mon 12/23/2013 – Fri 01/03/2014 Mayo Clinic Transplant Protocol Evaluation:
I won’t detail all of the testing and meetings here but suffice it to say that I’m no longer afraid of needles or medical tests and procedures and, other than cholangiocarcinoma, have a completely clean bill of health.
While in Rochester, MN we stayed at the Gift of Life Transplant House and I can’t say enough about how wonderful it was. We met lots of supportive people and the rooms and common areas were beautiful.
About a week into the evaluation I had an ERCP and EUS where stents were inserted and within 2-3 days, all of my symptoms were alleviated. I wanted to just pretend this was all a dream. I felt great and other than a weight loss of about 20-25 looked completely normal.
Somewhere along the line we were told that resection was an option for me. We had no idea going into this that it was an option for anyone, so we were on cloud 9 with the news.
Surgery was scheduled for Fri, 01/17/2014, so we headed back home to Richmond, VA for a week of “normalcy”. My wife and I both went back to work for the week and made plans for other family members to watch the kids while we went back to the Mayo Clinic for surgery.
Fri 01/17/2014 Surgery:
The first thing on the agenda was a laparoscopic “staging” where I’d be visually checked for metastasis and also have some lymph nodes pulled out for examination/pathology. At any sign of spreading, I’d be closed back up and no resection would be performed. I prayed to wake up with more than a small hole in my belly button, and I did. The surgery itself lasted about 6 hours.
Unfortunately, the drain that was put in my right side was filling up with bile pretty quickly and it was determined that I had a significant bile leak somewhere and they needed to operate again to find and fix the leak. That was scheduled for the following morning.
Sat 01/18/2014 Surgery to Find and Fix Bile Leak:
This surgery took about 2 hours and they successfully found and tied off a leaking bile duct left over from the liver resection.
Sun 01/19/2014 – Mon 01/27/2014 Mayo Clinic In-Patient Surgery Recovery:
I spent a total of ten days in the hospital, including the two days of surgery. I had a fair amount of water retention from my waist down to my feet and initial difficulty urinating on my own but eventually everything got back to normal. The room at Mayo was private and, by my limited experience, very very nice.
While recovering, I was visited by a Medical Oncology Fellow and his Attending. They recommended adjuvant chemotherapy with gemcitabine/cisplatin or gemcitabine alone for four to six cycles.
Honestly, I was in no mood whatsoever to discuss chemotherapy with them while trying to recover from surgery.
01/29/2014 Mayo Clinic Post-Surgery Doctor’s Summary:
“Mr. Reidy is a pleasant 47-year-old gentleman with a recent diagnosis of de Novo perihilar cholangiocarcinoma. On January 17, he underwent a left hepatectomy, Roux-en-Y hepaticojejunostomy, and hilar and celiac lymphadenectomy and cholecystectomy. His postoperative course was complicated by a bile leak, for which he was taken back to the OR for an abdominal exploration and ligation of the posterior bile duct branch. The remainder of his hospital course was uneventful. He does have partial dehiscence of the skin suture with drainage, for which he has been applying wet dressings three times a day.”
[*]December 2013 CA 19-9 was 453 unit/mL[/*]
[*]January 2014 surgical pathology demonstrated moderately to poorly differentiated cholangiocarcinoma, 2.5 x 1.4 x 0.5 cm in size with involvement of the common hepatic and left hepatic bile ducts[/*]
[*]January 2014 surgical margins were negative. Multiple lymph nodes, as well as the gallbladder, were also negative for malignancy. Perineural invasion, as well as small vessel invasion was identified[/*]
Closing Thoughts & Questions:
I still have yet to decide if I am going to proceed with the adjuvant chemotherapy or not. I’m still not prepared mentally or physically for it. That and the lack of data suggesting that it’s worth the risk are big deals to me. I desperately want to live for a long time but don’t want to just trade one evil for another (kidney problems, nerve problems, hearing loss, etc) brought on by chemo drugs, particularly if there is no evidence that it’s helpful in the long run.
I’d love to hear opinions or experiences from those with similar circumstances on the subject.
I’m expecting to go back to the Mayo Clinic this summer for “surveillance” where they will do lab tests (check my CA 19-9 I assume) and perform a CT scan.
Question: Which is better for detecting recurrence, CT or MRI? I’ve had a LOT of radiation exposure in the past 10 weeks and would prefer to limit it going forward. It just can’t be good for you…
The stories on this forum both break my heart and give me hope. I really appreciate the level of caring and sharing going on here and hope to contribute myself, for a long long time.
Given the whirlwind of the past 10 weeks from diagnosis to resection, I consider myself one very lucky, unlucky, guy… if you know what I mean.
Thank you for your reply and welcome.
My doctor at Mayo is Gregory J. Gores and my surgeon is David M. Nagorney.randigb wrote:Dear Matt,
Congrats on your successful resection!! Welcome to the site and sorry you had a reason to be here. You are among the very lucky that get this disease to have been able to have surgery. I also went to the Mayo in Rochester, MN. Mine was for a third opinion. I found it to be very nice and reassuring to be there. Who was your doctor?
Here’s wishing you continued health in your recovery.