April 29, 2011 at 4:36 pm #28443_pisees_Participant
I saw that presentation by Dr. Javle 4/12/11 “Cholangiocarcinoma Update” on this site. I was confused regarding what targetted treatments are available now outside of clinical trial. The presentation suggested Erlotinib, Cetuximab, Bevacizumab, but my father’s oncologyst said none are available except as part of a clinical trial.
Thanks so much,
KurtNovember 7, 2009 at 5:52 am #28442violarobMembersrs74 wrote:My mom was diagnosed with cc in last month and two surgeons at her local hospital agreed to resect. We went to MD Anderson for a second opinion and were a disappointed to find that a decision was made that resection was not an option at this time and her case was assigned to a medical oncologist rather than one of the surgical oncologists or one of the oncologists at MDA that specializes in cc. At the end of the day, my parents were not comfortable at all with the experience at MDA and we’ve ended up back with her local oncologist. I think I probably do believe that the decision to not resect at this time was the right one, but I too was disappointed that we didn’t get to see someone who truly specializes in cc.
Any thoughts on this given your positive experience with MDA?
Dear Srs: Hard for me to comment, since I don’t know who you consulted with. There are many reasons to defer or delay a resection of the liver. If you have a diagnosis of cc, I can’t imagine why they would not refer you to one of the GI medical oncologists like Dr. Javle or Dr. Kaseb. The GI department at MD Anderson works as a team, so if they referred you to a medical oncologist, then the surgeons felt that was the best course for your treatment.
Again, without details it is hard to comment. Can you tell the group what course of action the medical oncologist at MD Anderson recommended for you? Many members of this group have probably been through it and can tell you their experience with the therapy prescribed for you.
I any case, you have to do what feels right for you. If you trust your local oncologist then that is worth a lot. Best of luck to you!
Violarob in Houston, TexasNovember 5, 2009 at 2:49 am #28441srs74Member
My mom was diagnosed with cc in last month and two surgeons at her local hospital agreed to resect. We went to MD Anderson for a second opinion and were a disappointed to find that a decision was made that resection was not an option at this time and her case was assigned to a medical oncologist rather than one of the surgical oncologists or one of the oncologists at MDA that specializes in cc. At the end of the day, my parents were not comfortable at all with the experience at MDA and we’ve ended up back with her local oncologist. I think I probably do believe that the decision to not resect at this time was the right one, but I too was disappointed that we didn’t get to see someone who truly specializes in cc.
Any thoughts on this given your positive experience with MDA?
Thanks.July 15, 2009 at 8:42 pm #28440theasifMember
hi Violarob .
My brother diagnosed CC and I need you help regarding MD Anderson Hospital and CC.
Please contact me through email or give me your email address i want send you all reports and case history.
Kindly reply me soon.I shall be very thankful.
AsifJuly 8, 2009 at 6:49 am #28439violarobMember
Hello all: I have been absent for quite a while from the group. I will post my news in another section of the discussion board. (Unfortunately, my cancer has returned after a five-month remission.)
To Hector (“Hecace”): You are in great hands with Dr. Curley. Since your post was dated in May of 2009, I am assuming you have already had a consultation with Dr. Javle. He is a brilliant guy, and has all the up-to-date information regarding treatment options. He is an honest guy, and is willing to share as much information as you care to handle. If you have specific questions, please e-mail me privately and I will answer as best I can.
To “JamieD”: My chemo regimen last year was gemcitabine + cisplatin IV infusion every 3 weeks, with Tarceva (erlotinib) 150 mg pill every day. I was on this regimen for 5 months, then had radiofrequency ablation. I was off therapy for 5 months. Recent scan showed growth of new tumors, about 1.5 cm each, very small. (The old tumors, treated with RF ablation are still “dead”). My new regimen is gemcitabine + cisplatin + Avastin IV infusion every 3 weeks, with Tarceva 150 mg pill every day. However, Dr. Javle is worried this might be too much, and may delete one of the drugs. I will discuss this next Monday with him. Every patient has a different regimen because of their unique circumstances, so I would caution you not to regard someone else’s regimen as the “magic bullet”. It is good to compare, but not necessarily good to copy! If you have other specific questions, please e-mail me privately and I will answer as best I can.
Violarob in TexasJune 5, 2009 at 1:01 am #28438jamie-dMember
I was wondering if you could share your protocol with me and history? I just got the news that the cc has returned with a vengence and am looking for some hope. I was diagnosed in Oct 07 and started on Xeloda and Gemczar. The tumor shrank from 15cm to less than 5 and a secondary tumor I had on the colon shrunk and the lymph nodes stopped lighting up. They ended up doing a resection June08 and removed 65% liver, gall bladder, and the tumor near the colon that was encapsulated and another near the duodenum(also encapsulated). Had clear scans until yesterday. Now have mets in both lungs and a 2cm tumor in liver at the resection site. Mayo isn’t offering much hope. I am 52 and need to be around for my kids as long as possible. I live in Minnesota. If you want to email me that would be fine. Thanks for any help, I really appreciate it. God Bless,
JamieMay 18, 2009 at 2:43 pm #28437robynMember
My mom has been going to MD Anderson every 2 months since Oct. 08. She also sees Dr. Javle. Our wxperience with them has been wonderful. We are from Amarillo, TX, so she sees an Onc. here also, but MDA prescribes and oversees all the treatments. Dr. Javle was the only Dr. that gave us any hope at all. The Onc. mom saw before we went to Houston basically told her to just go home and die! Now, seven months later, her tumor is shrinking, and she still feels pretty good in spite of the chemo. She will go back to MDA next month to recheck her scans and see if she’s ready for radiation. Cross your fingers for her!May 15, 2009 at 1:03 pm #28436lainyParticipant
Hello Sherry and Hector. Welcome to the best little club in the world no one wishes to join. Now that you are here you have come to the right place. Ditto to what all said above and I think you are both on the right track. These are the most caring, wonderful people in the world. Please us us to vent, ask or advise. Hector: you are at one of the best Hospitals for treatment and Sherry listen to your gut feelings and if it feels wrong is usually is. We have all learned how to become strong advocates and it is also important to read up as much as you can. Good luck to you both and please keep us posted.May 15, 2009 at 5:21 am #28435
Hector……this cancer loves to sneak up on people without presenting any symptoms and generally, cancer is not suspected until either, someone has jaundice or, sometimes, a tumor is detected by accident. By the way, you may order our brochure. And, did you know that a free wristband will be mailed to you per request?
Sending tons of good wishes your way,
MarionMay 15, 2009 at 4:11 am #28434hecaceMember
Thanks for the reply. I am very impressed by the information here and I find many of the postings here are very encouraging as we begin this journey. I’m still in the getting data stage after receiving the shocking news. But I, as many here, believe I can beat this with God’s help. I feel great, no symptons, just thinking too much. This is why I enjoy the site so much.
Anyway, thanks for reaching out. it is good to get things off the chest.
HectorMay 15, 2009 at 3:38 am #28433
hecace….hello and welcome to our community. I am glad that you have found us. I am sure that others will gladly share any knowledge with you. I just wanted to welcome you. You are in good hands with the great members on this board.
MarionMay 15, 2009 at 2:15 am #28432hecaceMember
I’ll take you up on your very nice offer. I was just diagnosed this week with CC. I spent Monday-Wed at MD Anderson. My doctor, Dr, Curley is sending me to Chemo first and I believe he mentioned Dr. Javle. I have CC with a couple of tumors in the liver. I think he wants to see if we can shrink some and detetermine of we can resec later.
Any info you want to provide would be great. Very curious as to Dr. Javle.
I have been reading some of the posts on the board and I think its great this community exists.
Thanks for any info.May 15, 2009 at 12:57 am #28431
Sherry….I would like welcome you also and I like to echo Tess in that more then one opinion are necessary when dealing with this cancer. Cholangiocarcinoma/bile duct cancer is difficult to detect and not infrequently is it diagnosed after bile start building up thereby, causing jaundice. You were very observant because, I only noticed my husband’s yellowing of the eyes until a physicians asked me about it. There are many physicians familiar with this cancer whereas, many others aren’t. Finding the first group and gathering their opinions is not difficult but, it is time consuming. Others on the board may also recommend some physicians in your area. Please, share with us your experience next week at Ohio State James Center. I am wishing for a better experience.
Good luck and please, stay in touch.
MarionMay 15, 2009 at 12:31 am #28430tessMember
Hi Sherry and welcome. I am sorry to hear about your husband’s diagnosis. My Dad’s early symptoms were exactly the same. In case you decide to seek out second opinions, but don’t want to travel, we initiated contact with several cc specialists across the country, mailed them Dad’s scans (on CDs) & his medical records, and they reviewed these- providing us with insights into any other potential treatments that may be options, outside of only chemo. The doctors were very kind to assist with this, and Dad’s doctor’s office sent everything out for us in overnight express packages. Also, Dad did the chemo once a week, and IV treatments were just about an hour.
Wishing you & your husband all the best Sherry! Come back & visit this site & share your stories/questions anytime- there is so much experience on this board & you are absolutely not alone.
-TessMay 15, 2009 at 12:00 am #28429lakebillParticipant
My husband, age 66, was diagnosed April 1, with nothing but slightly upset stomach and me, looking at him one day and seeing how jaundiced he was. He had a complete physical the previous week. He has extrahep. bile duct cancer with lymph node involvement. We have been less than impressed with oncologist in Cincinnati where we live. Have an appointment at Ohio State James Cancer center next Thursday. He has had no treatment because we are refusing chemo IV for 3 hours every other week. Hope to find a better treatment than killing all his good cells, too. If the James Center is not a good one, we are headed for M D Anderson. Thanks for the positive comments. wife, Sherry
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