October 27, 2011 at 2:44 pm #53796jathy1125Participant
Andrew- I just saw your post and I am a CC survivor due to a liver transplant. I am 2 years cancer free and had inoperable CC. A transplant is a cure for CC, it is still “controversial”. I had the most positive expierence in my battle (that is wierd to say). I was treated by Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Barnes is listed as a CC center and in the top 10 hospitals, and Dr. Chapman is one of the leaders in CC. He worked with Mayo to develop transplant trial. The one thing I and Dr. Chapman want is for people to discuss transplant with doctors who believe it is an option, and let them decide if you are a candidate.
I have been in contact with a member who’s mom had an appointment at Mayo and due to mine and other posting about Dr. Chapman, they contacted him by phone. Dr.Chapman talked to them by phone and gave them HOPE. They have met with Dr. Chapman and are having a resection. They had a HOPE and a plan while still waiting for Mayo appointment.
Please read my story at thetelegraph.com under christmas miracle, it will give you so much HOPE. I am only alive because of God, 2 strangers, and Dr. Chapman. The most amazing part is that is how Dr. Chapman would list it.
Please email me if I can help with any info.
Lots of prayers-CathyOctober 27, 2011 at 3:14 am #53795wallsm1Participant
I kind of ran into a similar problem at Mayo. When I made my appt, I requested someone who was an expert with CC, but they kind of deferred me to their oncology department and I saw whoever was available. It all turned out fine, though. I saw Robert McWilliams at Mayo. I’m not sure if he is the most experienced cholangiocarcinoma doc at Mayo, but Mayo in general sees lots of these cancers and I found him to be very knowledgeable. Overall, I was very happy with him and the experience in general. (Keep in mind, I am a nurse and don’t give a good report on Dr unless I am actually impressed with them)
Also, I did ask Dr McWilliams about receiving care in another country. He did not recommend going out of the country for treatment. He said if I tried, I would probably find lots of countries willing to treat me, but that doesn’t mean it is safe/effective/proven treatment. It’s tough though, I don’t think I could ever imagine an American Dr telling you to go out of the country for treatment.
Let us know what you decide!
SusieOctober 26, 2011 at 9:52 pm #53794
Andrew…..Your sister’s physician may want to request to speak with Dr. Steven Alberts, Mayo, or Dr. Gores. Both are highly experienced with this cancer. As far as I remember you also are awaiting to see Dr. Lenz or Dr. El-Khoueiry at USC. These physicians see a fair amount of bile duct cancers. I would not consider leaving the US. High occurrence rate does not equal superior treatment options for Cholangiocarcinoma.
All my best wishes,
MarionOctober 26, 2011 at 7:31 pm #53793mustangmortParticipant
Yes, the hurry up and wait is indeed the most annoying.October 26, 2011 at 6:54 pm #53792
Bleh. We’ve basically been in a holding pattern while waiting for insurance to approve the PET scan and the hospital to schedule the appointment. It’s more annoying than anything, although my sister does seem to be enjoying her unexpected time off from work.
Susie (wallsm1) do you recall the name of your medical oncologist at Mayo? Were they the CC specialist there? In lieu of going to MN, we thought maybe a peer consult with our oncologist would be worthwhile. Mayo is fine with this idea but declined to give the name of anyone. They just said that our doctor should call and ask for a GI doctor specializing in CC. Seems like that would waste a lot of time for our doctor so I’m trying to do some of the leg work.
I did a search and saw medical articles but not much in actual travel: Does anyone have experience going to Asia for treatment? Western or Eastern style medicine? Because CC is 4 times more common in Korea and Japan, I’d imagine they have more familiarity if not improved treatment.
+andrewOctober 19, 2011 at 6:32 pm #53791mustangmortParticipant
Andrew, I don’t know much, but I do know this………..keep pushing. Hopefully, the P.E.T. will show no more involvement other than the lymph node as mentioned. My little bit of common sense tells me that being to target 1 place is much better than trying to target several.
Sending prayers to you and your sister.October 19, 2011 at 3:25 am #53790wallsm1Participant
Andrew, I tried to get a phone consult at Mayo too, but was told the same thing. I had to go there for an appointment.
SusieOctober 19, 2011 at 2:38 am #53789
Andrew….most (if not all) major cancer centers demand the patient to be seen for a consultation. You are doing all the right things by searching for answers to your questions.
All my best wishes,
MarionOctober 19, 2011 at 1:00 am #53788
Met with UCLA radiation onc. to consider my sister’s options. They wants to do 5 sessions of SBRT followed by chemotherapy. He mentioned the possibility of liver transplant but said they would have to discuss with surgeon/transplant team since CC is in lymph node and it is a recurrence. I don’t remember which post, but this strategy sounds similar to Mayo Clinic’s protocol for hilar CC.
Oncologist also confirmed there were no visible tumors, just the 2cm necrotic lymph node with CC. My sister will have to do a PET scan to confirm no missed spots and also prep for SBRT.
Requested an appt. with Dr Lenz to get second opinion per Marion’s suggestion (thanks Marion) and tried to set up a phone consultation with Mayo but they don’t do that apparently. I like this radiation oncologist’s treatment strategy and was glad to hear our ideal plans were similar to his but I’ll still be looking for other doctors to get opinions from to make sure what I think is optimal actually is.
+andrewOctober 15, 2011 at 6:46 am #53787
AndrewOctober 15, 2011 at 3:04 am #53786peggypMember
I’m sorry to hear about your sister’s recurrence. My husband had a resection in August ’08. He was diagnosed Stage IV intrahepatic CC. Within 7 months, he had multiple tumors in the part of liver that wasn’t taken. The surgeon said another resection wasn’t an option nor was a liver transplant. They had originally told us chemo or radiation weren’t options, either. John has been on chemo since March’09. As his oncologist feels he needs to take him off the gemzar/cisplatin/avastin, we are scheduled to see a specialist on Monday at Georgetown to see if he can offer any other options or if there is a clinical trial that he might qualify for. Keep a positive attitude and stay strong for your sister, and never give up hope. Keep asking questions and seeking other opinions as Lainy suggested. Sending well wishes to your sister, PeggyPOctober 14, 2011 at 10:52 pm #53785lainyParticipant
Andrew you are a wonderful brother and a great advocate. Sounds weird but I listened to my gut and went with it. Guess you could say I graduated in GUT 101
as it never failed me. A few things we have found to be true here are that we try to stay realistically optimisitc, that knowledge is the most powerful fighter againt CC and that we need to stay strong. Nothing should color Dr. Lee’s responses, Teddy’s ONC and RADMAN were in constant touch with each other, that I know, all decisions were made together. I am looking forward to hear the outcome of this and am sending hugs to your sister!October 14, 2011 at 9:42 pm #53784
Her original surgery and chemo were done at UCLA. Dr. Hines performed the Whipple. Dr. Garon oversaw the chemo regimen, the semi-annual CT scan checks and is the one who is currently recommending radiation.
Now we have an appointment with Dr. Percy Lee (also at UCLA). I’ll probe him for more answers but, since he’s a radiation oncologist, I don’t know how that will color his perspective on treatment.
I’m just trying to get as many of my ducks in a row before speaking with Dr. Lee.October 14, 2011 at 7:55 pm #53783lainyParticipant
Mmmmmm Me thinks it could be time for a second opinion. Where is she being treated?October 14, 2011 at 7:28 pm #53782
Hi Lainy. Thanks for the warm welcome.
In regards to what stage CC she had, my sister originally had Stage 2B (T1, N1, M0) Extrahepatic CC in 2009. Now? I couldn’t really say. The only thing we have to go on at this moment is the positive biopsy of a 2cm necrotic lymph node in the porta hepatis.
Reading the CT scan, biopsy and pathology report makes no mention of cancer anywhere else but I don’t know if that means there isn’t more cancer or that they haven’t looked.
- You must be logged in to reply to this topic.