dkillion10
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On Oct 28th I had surgery to remove the two tumors and unfortunately they discovered several others (still amazed that none of these showed up on any MRI, PET or CT scans). They closed me up after determining further resection was not possible. I am now scheduled to start up on standard chemo (Gems/Cis) in hopes that this will beat back further progression. In the meantime, samples of the tumors are being sent to FiundationOne for genetic testing. The test results will determine our next steps. Keep pushing forward.
NativeGF, I hope that you make it into MSKCC. I visited there a couple weeks ago and was impressed with their facilities. Met with Dr Epstein (Oncology) who was very informative and helpful in understanding our alternatives. Best wishes to you in your journey. – Dennis
Matt – A quick note to say THANKS. Your commitment to share the details of your journey has benefited many … including me. Similar to you, I’m facing recurrence and determining the best treatment path. I have documented your history and excited to share with my Oncologist tomorrow. Without your frequent/detailed posts, I would be lost in a sea of uncertainty. Best wished to you and your family! – Dennis
Thanks Debbie! I am blessed to have a wonderful support team. Most of the targeted therapy experiences I found were those with intrahepatic cc. Was hoping that there might be some fellow extrahepatic (Klatskins tumor) out there that would be willing to share.
Marion and Julie. You are wonderful with your willing to care and share! I have a PET scat tomorrow and surgery will be determined based on results. I’ll will definitely get tumor sample tested. Marching forward. Thanks much! God Bless. -Dennis
Hello Christine. Sorry to hear about your news. Keep pushing forward and keep the faith! You are asking good questions to a great group of supporters!/fighters.
Lucky. Meant to say a couple of opinions. Agree w Lainy and Marion about getting a third. My liver enzymes were very elevated as my liver ‘recovered’ from the resection. It took a good six months before they started coming down and, although still slightly above normal, have leveled out. Keep up the fight! You are asking all the right questions.
Hello Lucky. Your husband is SO blessed to have such a strong advocate! I am replying as I have had a similar path. My resection and roux en y was July 16 2014. Procedure was successful w negative margins, no lymph node involvement, and one well-differentiated 2.5cm tumor removed. Recovery from surgery was tough w a couple of setbacks. Although I chose no chemo/radiation, I would suggest a couple of options before a final decision. I did want to add that a key to my recovery was nutrition/diet. I believe a major part of my recovery started when I began to eat better. I invested in a Vitamix and started with some smoothies. My favorite was a mix of frozen berries, beets, bananas, kale, and protein powder. It got me ‘over the hump’. God bless!
Hey Christine,
I’ll try to make long story short. I started with my primary in Mason and then refered to GI Specialist, Dr Peter Dryer and Dr Oncologist, Dr Jason Jones both out of Bethseda North. I still have those doctors and they are exceptional. For the all important surgery, I was refered to Dr Erik Dunki-Jacobs also at Bethseda. I give Dr Dunki-Jacobs credit that he acknowledged not having sufficient experience in the liver resection and subsequent ‘re-plumbing’ that was needed. He refered me to Dr Shimul Shah at UC. Although he might well be a good surgeon, I had committed to get a couple other options. Through some research we found that both MSKCC and Columbia had an outstanding reputation for treating CC. And we could visit both in one day! We are soooo glad we went to NYC. We found Dr James Guarrera and Colmbia to be very understanding to our situation and he was very experienced performing this critical surgery (mine took 9 hours). We were able to get an apartment only a few blocks from the hospital so that the family (wife and two teenagers) could be with me. We used AIRBNB to secure the apartment. I was in Columbia for a couple weeks and then able to move to the apartment for another three weeks. I returned back to Mason and now have a regular cadence with both Dr Dryer and Dr Jones.
I know NYC can seem a big scary place, but I can assure you there are some extremely talented, caring, and professional doctors and nurses there! Make the visits, interview the surgeons, ask your questions, make an informed decision, and go forward. My home email is dkillion1@zoomtown.com. Don’t hesitate to email, include your phone# and I will call you to provide more details. It’s a difficult time but you are taking all the right steps and you have this great support network for information and encouragement.
Dennis
Christine. If you can make the time, you might try visiting Columbia Presbyterian as its right there in NYC as well. Dr Guarrera work number is (212) 305-6382 (you will likely get Lisa the lead nurse). Tell them Dennis from Cincy recommended you! I proudly wore my REDS hat the whole time I was there!
Lainy … Absolutely!
Christine. I understand the world is spinning pretty fast at the moment and you are likely working within a defined timeframe. That said, whenever you need a “personal touch” from someone that has been through this. Just let me know and I look forward to meeting you.
Dennis
Hello Christine,
This diseases is pretty scary, but you are now part of a remarkable support group, welcome. I also reside in the greater Cincy (Mason) area and was diagnosed last June w CC (Klatskin tumor). I also traveled to MSKCC for a 2nd opinion and then Columbia Presbyterian for a 3rd. Although I was given a very similar approach by all three (the 1st was Bethesda North in Cincy) I opted to go with Columbia for two reasons. 1st was the comfort level we had with the surgeon (Dr James Guarrera) and 2nd the fact that they could get me scheduled within a week (time was not on my side). My experience at Columbia was fantastic, the operation was a success and the hospital staff were incredible. That said, we were impressed with MSKCC and confident we would have been in excellent hands there as well. I know there are more than a few members of this group that will attest to that.
Best wished, God Bless and Keep us informed,
Dennis
