December 30, 2011 at 5:05 pm #56009hamptonsarasotaMember
Thanks all for the welcomes. And yes, I do consider myself lucky that the cancer was completely removed and was only located in the bile ducts having not spread anywhere.
I’ll be honest, I did come across your ‘moved’ post and read through a lot of it, you went through a very tough time and Tom put on a hell of a fight up until the end. He’s definitely in a better place now and without pain.
I’m headed to Chemo with optimism and trying to get back into shape. I left for NY on 9/5/11 at 189lbs and fairly muscular. Returned home on 11/1/11 at 165lbs with considerable muscle mass reduction. I’m back to 181 now, have been back on strength training, and did my first ‘official’ 2 mile cardio workout yesterday after the drain tube was removed in 26:30, easily the best cardio I’ve done in 3.5 months. I’m going to be doing cardio every day and weights 2-3 days a week working up to the first Chemo session. No clue what I’ll be able to do after the Chemo, I’m planning on a slow weekend to see how it goes and hope to be able to rest Sat/Sun and try to continue the exercise routine M-Thur. Only time will tell. Thanks again to everyone!
DerinDecember 30, 2011 at 1:05 pm #56008mlepp0416Participant
Welcome! I’m so happy to hear that they are starting you on chemo after your successful resection. My husband’s doctors did not ‘think’ he neede chemo cause they had clean margins when they did his resection. I wish I had INSISTED on chemo! He too had issues after his surgery, one type of infection after another, live bile leaks, drain tubes (2) for 7 1/2 months after surgery.
Because he did not have chemo after his successful resection, he had a great 18 months, then started turning yellow, and another tumor was found and that one was inoperable due to it being wrapped around the hepatic artery. They gave him less than 6 months, but after radiation and chemo he lived another two years and his body gave up on 11/20/2011.
My thoughts and prayers are with you and your family. Make sure that your docs are diligent on the blood work, the scans watching for new tumors and take all the chemo that they are willing to give you. Tom’s chemo was at first oral (xleoda) then IV (Gemzar and Cisplatin) and the last was 5-FU which he did not tolerate well at all. The last chemo was after they found another tumor that tripled in size in under three months timeframe. May he rest in peace now that he is with our Lord.
Hugs and best wishes, I will add you to my prayer list. You are young and have that on your side!
Go with your faith and KEEP KICKIN’ THAT cancer.
MargaretDecember 30, 2011 at 6:48 am #56007marionsModerator
Derin….I would like to follow the others in welcoming you to our site and to send a belated Mazel Tov your way. Your posting reads like a mystery story with a happy ending. Congratulations, you have overcome your share of obstacles.
With vigilant aftercare and regular scans life for you will take on normality again.
Please keep us posted in regards to the adjuvant therapy contemplated and know that this site is a great place to share your thoughts anytime.
All my best wishes,
MarionDecember 30, 2011 at 3:30 am #56006pamelaParticipant
Welcome to this site. I am sorry that you have had to go through so many rough patches, but it is so awesome that they got all of your cancer. So many on here, including my daughter, wish so much that they were able to have surgery. So you are so very lucky in that respect. My daughter is on Gem/Cis and a pump of 5-FU. She does really well with her chemo. She just had her 8th round yesterday and is on her pump until tomorrow evening. She is really tired right now and will be probably until Saturday morning and then she usually bounces right back. You would never know she was sick to look at her except she has lost almost all her hair. Everyone reacts differently to their chemo. She makes sure to keep up on her nausea meds the days right after chemo and she does great. She is lucky that she does not get sick. I hope it will be the same for you. Best of luck to you and I hope you continue to visit this site.
-PamDecember 29, 2011 at 7:40 pm #56005gavinModerator
Welcome to the site. Sorry that you had to find us all but I’m glad that you have joined us all here as you will get a ton of support and help from all of us. And thank you very much for sharing your story with us all, you sure have been through a lot these last few months. And please, no apologies are ever needed for the length of your post.
My dad had many of the symptoms that you did, the dark urine and the itching and before he was diagnosed we would never have suspected CC. Thats great that you were able to have the surgery and it is very good to hear you say that your doctors got it all.
And I love your attitude about being young and healthy so lets do it! Of course, I wish you well with your chemo and please let us know how that and everything goes for you. Yes you are right in that Gemzar and Cisplatin are now seen as the standard chemo treatment for CC. But, that does not mean that other chemos and combinations of chemos are not used. And many of our members are indeed undergoing different treatments of chemo.
I’m sure that you will have questions that you want to ask, so please feel free to ask away and the great members here will do what they can to help in answering them. And please let us know how everything goes for you, we care. I look forward to hearing more from you.
GavinDecember 29, 2011 at 7:29 pm #56004wallsm1Participant
Derin, welcome to the site and congratulations on your successful surgery. I’m sorry to hear of the complication post surgery, but at least it seems you are getting better. Good luck with chemo. I am 32, had a liver resection with clean margins and got 3 cycles of gemzar/cisplatin, then 6 wks of chemo radiation and am about to begin more gemzar/cisplatin. Chemo was not so bad on me at all, no side effects, so I wish the same for you. Best of luck to you and keep us posted on your progress!!
SusieDecember 29, 2011 at 3:59 pm #56003pamParticipant
Derin, welcome to this site. Your post was long but easy to read. . We hope you come back often. Congratulations on your successful surgery. You have been through a great deal in the past 4 months. It sure sounds like you have family support which is so important! Good luck with chemo in the months to come. Hopefully, this will all soon be a distant memory. Keep us posted. PamDecember 29, 2011 at 3:23 pm #56002lainyParticipant
Dear Derin, welcome to our awesome family. By the way Mazel Tov on your son’s Bar Mitzvah!
Congratulations on already being a CC survivor. My husband Teddy went through a whole lot of ‘stuff’ just as you did. He had an aborted Whipple then a double e coli infection then the real Whipple. We were on a 2 week to trip Milwaukee to see our kids and it turned in to 3 months!
You have and are doing all the right things and now let’s hope the healing continues on a good path. Do not worry about being long winded, this site got me through 5 1/2 years and I am still addicted to it. It is truly cathartic for me as well. Keep up your great attitude as that is a lot of the battle and I wish great success with your chemo cocktail. Please do keep us posted, we all really care.December 29, 2011 at 3:05 pm #56001mustangmortParticipant
Derin, welcome to our sight and congratulations on finally getting better. You are indeed lucky in that it seems they have removed all of the cancer. I hope and pray that is the case and that you will enjoy life for many years to come. The challenge now is to get checked often to “make sure”.December 29, 2011 at 2:43 pm #6133hamptonsarasotaMember
Well, needless to say, it has been an interesting 4 months for me… In early July I started to notice very dark colored urine and just thought it was dehydration, I needed to drink more, right? Then the itching started. Never linked that to liver function. Early August I started to get nauseous every time I ate something and it came to a head the weekend of my son’s Bar Mitzvah. Saw my general practitioner Thursday PM and he advised bloodwork on Friday AM. By noon on Friday, he called and said to get back in, my liver enzymes were way elevated and more bloodwork was done. Saturday after my son did a great job with services, we had a nice kiddush (luncheon after services) and I was supposed to go to the party’s venue to help the wife set up for the party. I went home to change, fell asleep for 3 hours and was extremely nauseous. I called the GP and asked if he had anything for the nausea. His response was to go to the party, don’t eat, but immediately after go to the hospital.
2am Sunday the 28th of August I hit Sarasota Memorial. CT was done, Ultrasound was done, no one could see anything. ERCP Monday afternoon and Dr. Doom and Gloom reported the results to my wife, father in law, cousin, and me. Mass on the bile duct, possible Klatskins tumor, very difficult spot, not much more we can do. The stent resolved the symptoms, and we had to wait for the biopsy results. Wed. PM results were back, atypical suspisious fibrous cells. Now the phone calls start. By Thursday PM, we had an appointment at Sloan Kettering Memorial in NY on Tuesday Sept. 6th. We made arrangements for friends to watch the kids and my wife and I flew up to NY on Labor day. Silver lining: my inlaws have a home on Long Island, we had a place to stay and people to help with driving back and forth.
Tuesday was upon us, we went to the appointment and met with Dr. Matthew Weiss who did my initial workup. Obviously the test results were inconclusive so they had to go in to see what was there. I had resolved myself to the fact that there was no way the mass that was there was going away without surgery, so this wasn’t a big surprise to me. He brought in Dr. William Jarnagin, head of Hepatobiliary Surgery at MSK who suggested surgery. We scheduled it for 9/21/11 and played the waiting game. A cancellation happened and I was moved up a week to 9/14/11.
My brother in law lives in the Hamptons and we went out on 9/10 (Friday) for a visit before the real journey began. I blew a fever on Saturday of 102 with serious chills/shakes and we were in the car making the 2 hour drive to MSK in 1.5 hours. I had an infection at the stent site, IV antibiotics. Long story short, I was in the hospital for 4 days prior to the surgery. Antibiotics worked and I went through with surgery on the 14th.
The official diagnosis was Cholangiocarcinoma. I’m 40, but I’ve read some of the posts on this site with people younger than me so age doesn’t really seem to matter with this thing. Why me? How did I get it? No one can answer…
They resected my liver and removed about 3/4 of it (all of right lobe, half of left), gall bladder gone, all of my bile duct was gone, and about 7 lymph nodes. All of the biopsy results were clean margins everywhere of at least 0.7 CM. The ONLY place the cancer was located was in the bile duct itself, right where it splits from one duct into two just inside the liver. The right lobe was already showing signs of atrophy and the left was already growing into the right to replace the damaged liver, amazing what the body can do sometimes!
My surgical outcome was ideal, they got it all. I was in NY for a total of 2 months. My original drain came out about 3 weeks post op, but I had severe pain on 10/2 and went to the ER via ambulance (LI Jewish was closest) and CT showed an abscess. I was transferred to MSK via ambulance the next day and interventional radiologists put in another drain. I was making about 130 mL a day and as of 10/21 it went to 0. Wednesday the 26th of October they removed the drain and I flew home Tuesday 11/1/11.
You would think that this was it, but no, my liver was still ‘leaking’. Wednesday at noon I had a 101.5 fever and my NY doctors said to get to the ER. By the time I arrived, 102.9 and the CT showed a 5″ abscess. Another drain!! Massive IV antibiotics 3x per day 3 different ones, my vein at the IV site did NOT like this. The germ ended up being Clostridium Perfringens, apparently a nasty bug that lives in the intestines but on exterior wounds causes gangrene. The stuff that drained out was definitely nasty. In the hospital for 5 days and yesterday (8 weeks later) they removed the drain, my leak officially stopped a week ago and Nuclear Study and CT confirmed no other abscess shown and no evidence of leaks. The liver is functioning 100% and the bile flows into the new bile duct (they took a length of my small intesting, cut it, attached one end to the remains of the liver, reattached the other end about 10″ below that and voila, new bile duct).
I’m about to undergo the second part of my journey with Chemo and as of now, Gemzar only but I’ve heard Cisplatin is also a standard of care for CC. I have an appointment with my Oncologist to discuss on 1/6 and 1/13 is the first dose of Chemo. I’ve been told I’m longwinded, but writing this is somewhat therapeutic. Given everything I’ve read so far on this site, I think I’m one of the lucky ones in that they ‘got it all’. There are no studies to show that chemo helps or hurts or if you don’t do it will it help or hurt so I figure better safe than sorry, I’m young and healthy so let’s do it. Thanks for your patience reading this long post. I’ll update as new info is found. Oh yeah, I also win the biggest scar contest from now on too!
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