newly diagnosed with cc
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vincent…as always, you and your siblings are so on top of it. All of you are doing a fantastic job of tending to your Mom.Hoping to hear some good news on Monday.
Hugs
MarionForgot to mention that he would call dr. El Khoueri on Monday and have him to schedule for a PET scan asap. We’ll be seeing dr. El KHoueri at 8 am on monday anyway.
Morning,
Just came back from the dr. Genik’s office. He looked at the scan and told us the same thing. He saw an ulcer at her liver and something at mom’s lymph nodes and she’ll need to do a PET scan to find out whether those are cancer tumor or not. If those are not, then he could do surgery but if it is, then the only option is chemotherapy.
So sorry you didn’t get better news! Don’t give up as you never know what the next doctor will say. Wishing you and your family a healthier and a Happy New Year!
Vincent…so sorry to hear this. Your mom might very well respond to some other form of treatment. Definitely, I would consult with the other physicians you had contacted, also. Keep up your spirits and hang in there.
My best to you, your Mom and the entire family.
Happy New Year to you, also
MarionHello,
It got sad news today. Went to see the surgical dr (dr. Joseph Kim) at City of Hope and he said that looked like it’s been spread to liver (from the image from Garfield hospital) and the newer CAT scan confirmed that. Anyway, so the radiologist is on vacation right now and will be back on the Tue Jan 6th and they’ll determine if they could do chemo-radiation or just chemotherapy.
Happy New Year everyone!Good luck at the appt. today Vince. To add to Violarbob’s comment, my Dad was denied candidacy for resection, radiation and RFA, with 9 out of 10 docs that reviewed his records (per the contact list that I sent you earlier). He finally secured a team at the Robert Packer Guthrie in Sayre PA. The surgeon says if they can reduce the tumor just a bit, he’ll try & remove. He’s expected to start brachytherapy treatments next week, via his biliary cath.
Keep up the fight!Best,
TessDear Vincent: You are doing the right things, being very aggressive and not taking “no” for an answer. If your mom has only a single tumor 5 cm in diameter, that is definitely treatable. Don’t let them tell you that chemotherapy “doesn’t work”. I had chemotherapy with excellent results. The standard combination these days is Gemzar (gemcitabine) in combination with either cisplatin or oxyliplatin (sp?). Oral drugs are often added to this regimen, like Tarceva or Xeloda. If Cyberknife or Theraspheres are not an option, there are ablation therapies like radiofrequency ablation and ethanol ablation. Ablation can do major damage to the tumor without resection or major surgery.
Unfortunately, the leading hospitals for treatment of CC are not near to you. They would be MD Anderson in Houston, Mayo Clinic in Minnesota, Sloan-Kettering in NY, University of Pittsburgh Medical Center, and Cancer Treatment Center of America in OK. Having Medicare/Medicaid as her insurance may limit treatment options or hospitals, but I have no experience with that.
Explore this web site. There are dozens and dozens of stories of different kinds of treatments. Good luck to you! We will all do what we can to help.
Violarob in Texas
MERRY XMAS everyone!
I just wanna wish everyone a Merry Xmas! Mom has been healthy lately. She could walk for a few blocks without breathing hard. We’ll see Dr. Kim from city of Hope on Dec 31st. I’ll keep everybody updated!Hello,
So I took mom to USC today to meet up with Dr. El-khouery. He looked at the scans (taken from Garfield hospital)and he said it’s not clear. He can’t really tell what stage it is and it doesnt have that information (staging) on the medical report/record. City of Hope told us the same thing. He recommended us to do a CT scan at USC and that they have one of the best technology. He said after the new CT scan, he’ll try to get Dr. Genik (surgeon) who will be working with Dr. Selby to decide whether it is resectable or not. He mentioned that he doesn’t have any doubt about City of Hope but he claim that the staff he works with at USC are one of the best (if not best) and they have lots of experience about cholangiocarcinoma. He said that also one of the most experienced bile duct oncologist at City of Hope just left their institute and the current ones are kind of new. But he said it’s really up to us. However, he would definitely recommend us to go with them (make them primary instead of 2nd opinion). He said we could also meet both surgical oncologists from both institutions if we want and most likely we’lll do that. We made an appoitment for the Scan 2morrow and he’ll try to contact the surgical oncologist (dr. Genik) today and would try his best to get us an appointment to meet up with Dr. Genik sooner than Dec 31st.
City of Hope called us today and gave us an appointment with the surgical oncologist (dr. Joseph Kim) on Dec 31st. So in the mean time, hopefully we can meet up with Dr. Genik (USC) to see what he thinks.
Thanks Sandy for giving me advices. I’ve been very busy with preparing for the final but I’ll try to call other institutions after final tomorrow. Gotta get back to studying now.Vincent…good luck tomorrow for two things….your Mom’s visit and your finals. Crossing my fingers and sending tons of good wishes your way.
Hello,
Thanks Sophie for the information. Tomorrow we’ll be taking mom to Dr. El-khoueiry at USC tomorrow. I’m studying right now for my final on friday. Hopefully I can get alot of studying done so i wont have to worry much while accompanying mom. Haven’t heard back from Dr. Giap yet, so I guess maybe he’s too busy and was nice enough to offer looking at mom’s record and gave his opinion that “y-90” is an option for her. Anyway, I guess I shouldn’t bug him any more since mom will have Dr. Vincent Chung (city of Hope) and Dr. El-Khoueiry (USC). Have a good night everyone!Vincent, I went to City of Hope. My surgeon’s name was Dr. Joseph Kim. He is very smart, an excellent surgeon, to the point and even emails and calls back. He knows me as Sandra May. I unfortunately was not resectable, but I think Dr. Kim is a good surgeon, and I would not hesitate to get in touch with him if surgery might be an option. My prayers for your family and your mom. Here is is email address. If you use it, tell him “hey” from Sandra May. Kim, Joseph
E-mail Address(es):
JoKim@coh.orgSophie
Sophie
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