CancerCompass message board discussion started by FiFaWall on 8/7/2007 http://www.cancercompass.com/message-board/message/all,15085,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mom hasn't started tx yet for advanced gallbladder with metastases in liver and I'm trying to figure out where I should spend my energies--getting her into Hopkins, Anderson, etc., or to Moffitt (she lives in Florida), which seems to be a fine hospital but not THE best according to rankings.  She's not going to have surgery, so will the chemo tx be standard at all?  If so, I would just get her into Moffitt.  I'm so confused and alone, please help??!?!? FiFaWall Tue, 07 Aug 2007 00:00:00 GMT  On 8/7/2007 FiFaWall wrote:My mom hasn't started tx yet for advanced gallbladder with metastases in liver and I'm trying to figure out where I should spend my energies--getting her into Hopkins, Anderson, etc., or to Moffitt (she lives in Florida), which seems to be a fine hospital but not THE best according to rankings.  She's not going to have surgery, so will the chemo tx be standard at all?  If so, I would just get her into Moffitt.  I'm so confused and alone, please help??!?!?Sorry to hear about your mom.  My dad has GBC.  We're going to Tampa General tomorrow.  They have a clinical trial for GBC - Davanat + 5FU.  Moffitt doesn't have any trials right now that I am aware of for this cancer but can certainly administer the approved protocol of chemo.  Hopkins and some other big cancer centers may be willing to work with Moffitt so that she can have chemo at home and then just have scans and evaluations at their hospital.  I would say it would be worth getting a 2nd opinion from a big center - even if you just send over all of her films and contact them via phone.  Another option is Mayo in Jacksonville.  Gbcdad Wed, 08 Aug 2007 00:00:00 GMT Definitely go to Mayo in Jacksonville!  I had several bad experiences at Moffitt - that was years ago, perhaps it has improved.  The surgeon I had (Charles Cox) was wonderful and competent - the support staff sucked.Good Luck! Portabus Wed, 08 Aug 2007 00:00:00 GMT  On 8/7/2007 FiFaWall wrote:My mom hasn't started tx yet for advanced gallbladder with metastases in liver and I'm trying to figure out where I should spend my energies--getting her into Hopkins, Anderson, etc., or to Moffitt (she lives in Florida), which seems to be a fine hospital but not THE best according to rankings.  She's not going to have surgery, so will the chemo tx be standard at all?  If so, I would just get her into Moffitt.  I'm so confused and alone, please help??!?!?In my opinion the BEST place to go is MD Anderson.  They are ranked #1 at US news and world report.  We were there in 04 and 05 for 7 mo. with my husband.  He was given 3-6 mo. in our hometown.  Well, this is 8-07 and he is doing great.  We go to Houston every 6 mo. now and have other treatment locally.  Everyone is wonderful down in Houston.   Sherry and John Wed, 08 Aug 2007 00:00:00 GMT Dr Charlie Cox from Moffitt is the BEST surgeon but I have to agree with the other, the other part of the staff at Moffitt is terrible.  Wait time is 5 hours or more for appointment.  They shuffle you around like herds of cows. Dr Charlie Cox did my surgery and then I switched to Dr. David Wright in Tampa as my oncologist.  Dr. Charlie Cox needs to get out of Moffitt in my opinion and I think he soon will do that.  I just had a terrible experience at Moffitt with miscommunication from several people and received the total run-a-round for a month.  If you want individual attention, this is not the place to go.  Tampa General is an outstanding hospital with many, many excellent doctors.  The staff, nurses are wonderful.   Moffitt is really, really big and unless she needs surgery, I think Tampa General would be your best choice. If she needs surgery, I would suggest Dr. Charlie Cox and then switch to another oncologist.I wish you the best. God Bless.   Hope this helps.   Daisy1 Wed, 08 Aug 2007 00:00:00 GMT My opinion is, go to a top hospital.  At the top hospitals in my state, they gave me 18 months tops to live, but said I could die at any minute.I went to a top hospital, 8 hours away.  That was almost three years ago.  My treatment has easy.  If I had a side effect, the top doctors figured it out and I went merrily along my way.  So much so that I worked 50 hours a week to make up for the time I needed off for chemo.However, once everything was worked out, I stayed in my city at the best hospital here (not one rated in US News and World Report) and they messed up my chemo.  I wound up spending the day in the hospital, as they called my Top Doctors, to figure out how to fix me.  I never went back the the hospitals in my city again.  My doctors at the U of MN quit asking me why I didn't get things done in my city.    Cptmac Wed, 08 Aug 2007 00:00:00 GMT There's an MD Anderson in Orlando. I go to the one in Houston where they at least have seen the type of cancer I have. Please, if you can afford it and can travel, go to the best! Cheech Wed, 08 Aug 2007 00:00:00 GMT Call or write to Dr. Andrew Kennedy at wake Oncology in Cary NC. My wife had a Klatskins tumor that was supposedly unresectable (per doctors at Memorial Sloan-Kettering cancer Center in NY and the famous Siteman cancer Center at Barnes Jewish Hospoital in St. Louis. On July 25th Dr. Kennedy destroyed the tumor with Yttrium 90 microspheres in a 90 minute outpatient procedure with the only side effect being a few days of acid reflux. No surgery is required. He has done many liver tumors also. He has a long background with cholangiocarcinoma and is knowledgable about the disease. He will email back if you contact him that way. His technique is becoming world famous but you must find a center where they do a lot of these. Honolulu Wed, 08 Aug 2007 00:00:00 GMT If you are wondering how to get there, they offer free flights throughhttp://www.angelflightcentral.org/ or http://www.corpangelnetwork.org/  Their is also free lodging through Hope Lodge http://www.cancer.org/docroot/SHR/content/SHR_2.1_x_Hope_Lod So there is help out there.  There is no reason why someone shouldn't be able to go to the hospital or Doctor of their choice.  Cptmac Wed, 08 Aug 2007 00:00:00 GMT My husband goes to MD Anderson in Orlando and as far as we're concerned they are the best.  He has advanced, non resectable nsclc. The doctors and staff we have met are professional and supportive. They tele-conference with Houston on difficult cases.  Good Luck Mauriceart Wed, 08 Aug 2007 00:00:00 GMT The dr we met with at Tampa General was Dr. Rosemurgy.  He is heading up the trial but also handles patients outside of the trial.  If you decide on a local hospital, I would set up an appointment with him for him to review your mom's case.  We brought everything from MSK with us and he reviewed the CT scan, bloodwork, ops notes, etc. along with us.  Gbcdad Thu, 09 Aug 2007 00:00:00 GMT please send me the email address for dr kennedy if you have it. my mom was diagnosed 04-10-07 with gallbladder cancer. they said they could not operate. the oncologst todl her she was stage 4 and would do know good to give chemo. when my mom insisted on trying to live he gave her the strongest dose available and it almost killed her. we changed oncologist and they gave xeloda but before she could complete a treatment of that  she was dehydrated and put in hospital. she has been in the hospital since 06-25-07.  she is still here but they are not treating her. they say no since in prolonging her dying but my mom is asking to l ive and fighting every day with no medication, please give info to contact dr kennedy  lisa davis   --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--   Lisa D1965 Mon, 13 Aug 2007 00:00:00 GMT Hi My mother is 60 yrs old and has stage IV Gallbladder cancer. Sloan Kettering in NYC was very helpful. Contact Dr. Abu- Alfa. He specifically specializes in gallbadder cancer. There are very few doctors that do concentrate on this type of cancer. Go to sloan-kettering website and find his office number not administration. He also has an e-mail. Hope that this is helpful,Ariela Arielahlibby Thu, 16 Aug 2007 00:00:00 GMT Thank you all for your helpful responses.  My mom is being treated by Hopkins (I live in MD, so this works well).  We did get an appointment at MD Anderson and I would have loved her to be seen there, but she just was not up for the plane ride...the 2.5 hour trip from FL to MD was plenty for her.  She's being treated by Dr. Donehower, who seems great.  We learned she had some small spots on her lungs (didn't think it could get any worse...it could...).  She had her first dose of gemcitabine and carboplatin.  Anyone with positive experiences with these drugs? Many thanks, I'm glad I found this community. FiFaWall Mon, 20 Aug 2007 00:00:00 GMT My wife 48 is diagnosed with cholangio/gall bladder cancer one month ago at stage iv. consulted many surgeons and body would perform surgery secondary to large tumor masses in liver and local lymph nodes. I have not consulted Dr. Nissan at cedars-sinai yet. she is getting chemotherapy for three weeks. Please respond with any suggestions or thoughts. How can I e-mail Dr. Kennedy. mehndiratta Sat, 22 Sep 2007 00:00:00 GMT