New member (ugh)!
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I am Haris ,New to this forum. I am 24 ,Male . Welcome to all .I think forum is a place to share our problems with each other and find thier best solution.SO keep doing posts and solve ours problems. Have a nice day….garmin etrex venture hc gps receiver
I feel very lucky to have found this community because otherwise I would feel all alone in the chaos.
ronidinkes@yahoo.com
or anyone can find me on facebook! yes I love facebook!!!!Thank you everyone. While I don’t like the reason I am here, I already love my new family…it truly means so much to me.
Tom
Roni….thanks for putting this out for everyone. We do have a listing for all clinical trials on this site however, I believe for not many people to read it. It can be found: Top bar, cholangiocarcinoma, scroll: clinical trials.
But, nothing beats a personal posting. So , thanks, Roni.
Best wishes,
MarionDr. Ghassan Abou-Alfo @ 212-639-3112 Memorial Sloan kettering has a clinical research study Protocol: 0029
A Phase II study of Gemcitabine & Cisplatin plus Sorafenib in Patients with advance Billiary Tract Carcinomas Naive to Systemic Therapy.
I spoke with him today, he was lovely, and they are still recruiting.
Good Luck
welcome, we used Dr. Richard Schulick at Johns Hopkins. He was wonderful. my mother’s surgery was 12 hours as it required portal vein recontruction. Best wishes, and stay in touch. Be positive.
Hugs,
RoniTom….by using the “google” function, on this site, top, right, and entering “oncologist Florida,” I found several postings regarding physicians in your area.
Best wishes,
MarionThanks Gavin and everyone else for your support. It’s now been 10 days since the metal stent was put in and Ben feels better today then he has in quite some time, we finally went out for dinner with friends last night. Blood tests tomorrow to check bilirubin levels and taking out the temporary plastic stent in the pancreas that was put in during the ERCP to prevent pancreatitis (although Ben did have a mild case that required 2 days in the hospital but he recovered well). Still investigating oncology options but will certaily be checking her for help once we know more – unless anyone has recommendations for South Florida (Fort Lauderdale and Miami).
Hi Tom,
Welcome to the site. I can’t help you regarding chemo options in the US as I live in the UK, but I just wanted to join in with the others in welcoming you here. Sorry that you had to find us all, but I am glad that you have joined us as you and Ben will get a ton of support from us all.
As you can see, you have already been given some great answers to your questions, but please feel free to ask as many and all questions that you will have and we will all do what we can to help you. My dad was also diagnosed with inoperable CC back in 2008 and he had the metal stent inserted followed by PDT, and once he had the stent inserted he started to feel a lot better as well. Looking forward to reading more from you and good luck in finding the right centre and doctor.
Best wishes to you and Ben,
Gavin
Tom,
I have a slightly different opinion on chemo, given that we just drove 2 – 2 1/4 hours (one way) for chemo today. My Mayo oncologist did tell me that chemo is a recipe and can be given anywhere, BUT there is not one oncologist in our town who has experience with cc. Different doctors often make different treatment decisions. Even though one doctor has decided on the treatment plan, there are often many decisions that have to be made along the way. I don’t believe I would have been able to find a local oncologist who would have been willing to work with my Mayo oncologist that closely and accept all his treatment decisions.
One of our local oncologist has been called a hope snatcher. Another refuses to refer patients for second opinions. These are not the people I want on my team.
I am very happy with my decision to make the trip to Mayo. For me it’s well worth it. Each person has to make their own personal decision about this considering their factors.
Kathy
Thanks everyone, we had discussed having one of the major centers prescribe it and have it administered locally but are still just exploring. We had also thought of doing the first regimin at one of those centers then moving it locally once we knew the protocal. Right now, one of the doctors at the Mayo Clinic in GI said he would continue to be involved (we are having a blood test Thursday and he will get the results), but we are also working a local GI doctor who we started with down this path (and who will take out a temporary plastic stint put in the pancreas last week during the ERCP to put in the liver stent) who we want to keep involved so we have at least a local GI.
Thanks for the advice on trying to pursue local given the potential side effects…I’m going to push Ben for that idea (protocol from Major Center and administer locally).
I feel so lucky to have all of you to turn to, I can’t thank you all enough already.
tom
Hi Tom…I also would like to welcome you to our site. I am sorry to hear about your partner and the diagnoses given. Tom, Moffit is also a major cancer center therefore, you might very well find a physician familiar with this cancer. It is a good place to start. Who is tending to Ben presently re: the blood tests? As Kris and Lainy have mentioned other centers very familiar with this cancer may establish the protocol and you then have a local physician administer the treatments. Make sure though, whoever is tending to Ben is familiar with this cancer and consults with the center and, if has very little experience, continues to stay in touch with the center.
Good luck, Tom.
Best wishes,
MarionWelcome to our family Tom, and so sorry to hear about Ben. I know I have seen Moffit on here but cannot remember what I had seen. On the other hand MD Anderson and Mayo are 2 of the best. Ben is very lucky to ahve you as his advocate and to help him travel this journey that no one wishes to take! Good luck on finding the right doctor and please keep us posted.
Tom,
Welcome to the site. We are a very friendly group and like a family…so we always love to offer opinions!There have been some people treated at Moffit, but I cant remember who. You could try doing a search on the site for Moffit and contact them directly.
Here is my opinion on chemo….it is just a chemical to be administered. Find a doctor you trust that is quite near. You often get too tired, too emotional, too stressed, too sick after a treatment. You dont need to worry about large travel on top of that. Could it be possible to have another doctor prescribe it and it be given locally? I live in the middle of nowhere Sweden. I once needed to drive over 3 hours there and back to get a chemo regime. Trust me, you dont want to do it if it can be avoided. When you dont feel good, you want to be at home,not traveling or in a hotel.
Good luck finding Ben a good doctor. Let us know how it goes.
KrisHello everyone, been reading this board for a couple of weeks and found it to be very helpful! Just thought it was time to introduce my situation as I realize it’s going to be a difficult road. My partner – Ben was diagnosed with CC on August 30th – started having symptoms in late June.
After initial CT scans and MRI’s in florida we headed to Mayo Clinic where they diagnosed the dreaded CC. Unfortunately they also found through laproscopy that the cancer had spread to the lymph nodes and lining of the intestine so surgery isn’t an option. I was truly impressed with what Mayo can accomplish in such a short time, but the unfortunate part is you also get bad news quickly.
Ben did have a metal stent put in his liver to open his bile duct (which the tumor was pressing on thus causing his initial symptoms) while at the Mayo and started feeling better fairly quickly. We are now back home in Fort Lauderdale deciding where to do Chemo. The doctors said his bilirubin needs to come down and needs to get stronger before we start chemo – so while that is happening we are researching the best place to start the chemo regimin. We haven’t been really happy with general doctor/nurse support in South Florida so we were looking at other options that aren’t too far. So far we are still considering Mayo (but it’s a bit far). MD Anderson (if they accept us – and an easy 2.5 hour flight) or possibly Moffit Cancer Center in Tampa.
I know you can’t go wrong with Mayo or MD Anderson – just wondering if anyone has any experience with Moffit?
thanks for listening!
Tom
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