March 13, 2016 at 3:51 pm #91845jathy1125Participant
Jennifer, I am excited to give you the name of my hero, Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I was 61/2 years cancer free thank to Dr. Chapman. I have an amazing story to share and keep it posted at http://www.catherinedunnagan.com There is a video on there that I was honored to make with Dr. Chapman. I have posted his name on this site for years and many CC patients have contacted him and several have had there diagnosed changed for the better. Dr. Chapman is a doctor with a heart and kind soul. He is very phone friendly and will act quickly, because he knows time is not our friend. You can also reach out to Daisy, or Brenda on the farm, to hear more amazing Dr. Chapman stories. I am alive today because of God, 2 strangers and Dr. Chapman and the amazing part is that is exactly he would list it, he is a very humble.
Please contact me if I can help more.
Prayers for your mom and your family.
CathyMarch 11, 2016 at 8:00 pm #91844mbachiniModerator
I want to welcome you to the discussion boards, and good job on being a proactive advocate for your mother! I would suggest posting your introduction again under the introduction section so possibly others will see it and be able to chime in with some advice on surgeons in that area.
I highly recommend going ahead with a second and possibly third opinion. Always better to have more expert advice. Key being expert in cholangiocarcinoma. Good luck and please keep us posted.
Sending hugs and prayers your way.
MelindaMarch 10, 2016 at 8:27 pm #91843debnorcalModerator
Hi Jennifer and welcome to our discussion board. I have not heard of the doctors or medical treatment centers you mentioned, so I suspect they do not have substantial experience with cc. We are located on the west coast and utilized the wonderful services of UCSF. We did, however, obtain a surgical second opinion from Johns Hopkins Medical Center in Baltimore. They will do a remote second opinion for a reasonable fee($500, I think). You would need to specify whether you are requesting a medical or a surgical opinion. My feeling is that if surgery is potentially feesible, the surgical opinion is most valuable. In our case, the JH opinion concurred with our primary Doctor that my husband was not resectable at the time but strongly encouraged us to have the gem/cigs to achieve shrinkage and become resectable. That is what we did and all went well. Even if JH just provides an opinion, if you search our provider list, you should find centers with expertise within driving distance of Philly.
Best to you and your mom.
DebbieMarch 10, 2016 at 7:44 pm #91842jreedhackParticipant
Thank you, Marion I am willing to take my mom wherever she needs to be for the best doctor.
I hope someone has some advice for as far the doctors go.March 10, 2016 at 7:43 pm #91841lainyParticipant
Dear Jennifer, WELCOME to our remarkable family and the best place to be for CC support. You are doing all the right things for your Mom and yes other opinions are extremely important. We have a search engine at the top of the page and if you click on it with individual names different posts may appear on that Doctor. Best of luck to Mom and please keep us posted on her progress. Below is a site you may find helpful:March 10, 2016 at 6:48 pm #91840marionsModerator
Jreedrack…..welcome to our site. You are an excellent advocate for your Mom by searching out additional, professional opinions. This is especially important for cancers that affect fewer than 20 thousand US patients per year. Expert opinions are found in the major cancer centers treating a high volume of cholangiocarcinoma patients. Unfortunately though, these centers often times are not in the near vicinity and require traveling to and from the location. The most important question to ask:” how many cholangiocarcinoma patients have you treated?”
Perhaps someone else can comment on the physicians listed by you, but I also would continue to investigate a surgeon outside of your area.
MarionMarch 10, 2016 at 5:20 pm #12271jreedhackParticipant
Hi, I am new to the board so I am hoping you will be able to help me. My mom was diagnosed in late November with CC after found by CT coincidentally n then MRI and biopsy confirmed . She saw Dr. Jeffrey Drebin at Abramson CC in Philadelphia who said that he couldn’t do surgery at that time as it was too big 9 x 11 cm n wrapped around the vena cava. So he sent her to Dr. Mark O’Hara Oncologist at Abramson who started her on 6 cycles of Gemzar/ Cisplatin. She is getting treated at one of their satellite office n the doctor there added one more cycle since she was doing so well with the chemo. She had repeat CT n PET’s on Feb 22nd which showed 30% shrinkage of tumor down to 6 x 8 and the uptake was down from19.8 to 9. The doctor there started her on another round as myself, my sister n my dad worked on getting in touch with Dr. O’Hara he said he is very pleased with results. ( btw no mets) he finally got in touch with Dr. Drebin who loved the results and wants to see if more shrinkage can happen before he does surgery. My mom of course just wants the tunit out of her. Does anyone know anything about Dr. Drebin, does this seem right? I was in touch with Dr. Fong who was mentioned on this board but he is now in California which my mom refuses to go to. But I also saw Drs. K. Tomoako n Dr. Edmond mentioned. Did anyone hear of Dr. Samstein at Cornell or Dr. Jeffrey Allen? I just am trying to find the best n definitely want a second opinion. Looking forward to comments back. Thanks
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