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May I ask what is your diagnosis ? The reason for my question is my wife has unresectable ICC, bile duct cancer. While we liked our consult visits to both places, we felt Sloan had more breadth of experience with this particular cancer.
Having said that, we had a great experience at fox chase and I personally felt the oncologist there was terrific. Given what we know right now, my wife is leaning towards Sloan.
I would be interested in your thoughts on both centers.
Thank you for your responses. We received positive responses from both fox chase and Sloan. They both confirmed they would continue treatment. I feel much better knowing both of these great places are ready to work with us. We are convinced that we have a path forward.
On Mother’s Day, my wife is surrounded by her children and her mother. We are all together to support my wife and best friend on this special day.
From our family, we hope you can enjoy this special day with your loved ones.
Thanks to everyone on this post and to all who are associated with this forum. I am learning quickly that you are all a special group of people.
The first treatment went well. We are moving ahead.
You are a special person to be able to communicate so well and show compassion at the same time. Thanks for taking the time to respond.
By the way, we have decided to start with the Gem/Cis plan. I had a great discussion with the doctor from Fox Chase Cancer Center. The doctors view was directly focused on the toxicity of the Folfirinox and its potential harm to the liver. The recommendation was confirmed to start with Gem/Cis to reduce the existing tumors in the liver. That must happen first and in the doctors view, it was not worth the risk of liver damage to go with Folfirinox in this initial process.
By the way, is it okay on these discussion boards to refer to specific doctors and treatment centers by name ??
Thanks so much. You are incredible helpful.
Thank you very much for this great information
As a follow up question, could I ask you what is your reasoning for recommendation of Gem/Cis first? Is it related to the effects of the chemo or lack of evidence that Folfirinox is a better alternative for ICC?
As mentioned above, I consider myself still in the naive stage and I am trying to find the right path. I am learning that it seems there are two chemo foundations for these types of cancers. Either Gem based or 5-FU based. I have not yet learned why or what the benefits/weaknesses are of one v. the other. My head is still spinning.
As many of you have already gone through, all of a sudden there are not enough hours in the day. I cannot learn quickly enough all the things I wish I already knew about this disease.
Thank you for your responses.
PCL1029, as of now, we have not made up our mind. In fact, we are still on schedule to begin the Gem/Cis treatment this Wednesday. We have reached out to the Oncologist from our first consult to ask her the same question. When we met with her, she suggested Gem/Cis to start and had mentioned the names of 5-FU and oxaliplatin as possible alternatives to the Gem/Cis. That was the first time we heard of these drugs (I am still naive and trying to learn more every hour about this disease). Then when the second consult introduced Folfirinox, it triggered some thoughts that we’ve now heard about these alternate drugs twice and this treatment plan had better (relative) success.
The doctor was very confident that Folfirinox would have similar effects with ICC as it had with pancreatic cancer. He did say he would only recommend this to patients who are otherwise healthy because it has potentially more side effects.
We do need to make this decision today and the reason we are considering the alternate plan is to take advantage of whatever strengths we have to fight this disease. If my wife’s physical health is a current strength, we want to use it to its fullest.
Your feedback is truly appreciated.
Sorry. The consults are scheduled beginning Monday, Apr 29 and span 8 days. Slightly different than my first post.