Our 25 year old daughter was recently diagnosed with cholangiocarcinom
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Dear lchase —
I totally understand the situation you are in … Our 25 year old son was diagnosed with inoperable cc and treated at Dana Farber. His doctor was Jeff Meyerhardt, and we found him to be terrific — very knowledgeable, and he developed a great rapport with our son Christopher.
You will feel enveloped by love from the moment you set foot in the building.
Keeping you in my thoughts and prayers …
GailIChase, how is your daughter doing with the chemo? I am new to this site, but have recently been diagnosed with intrahepatic cc and had a liver resection. I am 31 and have been looking for other young people with this diagnosis. Best wishes for you and your family.
IChase…..Good luck on the chemo. The Gem/Cis combination has somewhat become the standard of treatment and therefore, is widely used by many CC patients including, many on this site. Your daughter has age working in her favor therefore; she might really sail through this and may not experience any side effects at all. But, please come back to our site with any questions you may have. The combined knowledge of our members is unsurpassed and everyone will support you through this. My fingers are crossed for a speedy response to the chemotherapy. Please, stay in touch. We care.
All my best wishes,
MarionlChase, cannot say about the Chemo, just wanted to wish you tons of good luck and it will be great for you to have a plan in place.
Hi Ichase,
Have you looked at the chemo board that we have here?
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=16
That contains many discussions about all things chemo related. Also, using the search function and typing in Gemzar and Cisplatin will throw up discusions here by the members regarding this chemo. My dad never had chemo of any type so I can’t help you with his experiences, but I know that others will be along soon to share their experiences of chemo with you.
I hope it all goes well next week for your daughter and please let us know how she does.
Best wishes,
Gavin
Thank you all for your kinds words and support. We are going to Boston this Wednesday, and if they are in agreement, she will start chem the following week, (21 day cycle – cisplatin and gemzar) Any advice on what to expect from the chemo. It is a welcome relief that there are people out there who understand and know what we are going through. God bless all of you and we will be praying for all of you.
Dear Ichase –
Welcome to this family where you can find support and a place to vent or ask questions. We have been on one side or another of this roller coaster ride and we care about others who are fighting CC. Come often, post updates, ask questions, vent, whatever you need. We will be here.
Blessings,
SusanDear Ichase,
Welcome to the site. I am sorry that you had to find us and I am so sorry also to hear about your daughter. I can’t add anything really to what the others have already said to you but I just wanted to welcome you here. If we can help in any way then please let us know. Feel free to ask any questions you may have and we will do what we can to help in answering them, and come here as much as you want and we will all be here for you.
My best wishes to you,
Gavin
Dear Ichase,
Please can I just join the others in a welcome to the site. I’m so sorry to hear of your daughter’s diagnosis at such a young age.
I do not have experience of NY hospitals, my Dad was treated in Florida, and I live in England
Thinking of you all, please keep us updated,
Katie
Dear Ichase – My son was diagnosed at age 29, so I know how incredibly overwhelming this is to you as a Mom. I have been reading this site for quite a while now. I think if I could do one thing over it would be to insist on seeing Dr. Kato at NY Presbyterian. Even when given no options, this doctor seems to have some answers. I read nothing but positive things about him and, sadly, now wish we had put him on our list of doctors to see. You’re in my thoughts – Nancy
Dear Ichase – My heart goes out to you. Let’s pray that youth is on her side and when you get to the major hospital, they will have hopeful options for your daughter. I strongly support Lainy’s advice and comment that when the fight begins, the fright calms down. Please visit us often and share what is happening. We will be here for you. Blessings, Susan
Dear lchase, welcome to our wonderful family but so sorry you had to find us. It just saddens me even more when someone so young has CC. We are big believers in 2nd and 3rd opinions so before you agree with the diagnosis I would definitely get another opinion. If you go to our search button at the top of the page and put in Dana Farber I know I have seen it posted here before. All the posts that talk about DF will come up for you. Make sure that whomever you see has a lot of CC experience. CC does turn your world upside down but honestly as soon as a game plan is put in to place the fight begins and the fright calms down. Please keep us informed as we all care!
I too am so sorry your family is in this situation. Do not take inoperable as the final call, especially at 25. Jim mentioned his excellent surgeon Dr. Kato. He is world renowned and will operate when others will not. Jim has excellent advise and he’s been through it. Keep your chin up and I hope you get the answers you want when you see Dr. Faber. You will be in my prayers.
NancyI’m so sorry to hear about your daughters diagnosis. I have heard good things about Dana Farber but not in relation to CC. My husband went to NYC for 1st and 2nd opinions at NY Pres and Mt Sinai. Excellent hospitals and knowledgeable about cc as Jim indicated. In addition to Dr. Kato I would also recommend Myron Schwartz at Mt Sinai.
Best of luck and please keep us informed. My thoughts and prayers are with you.Sorry you had to find us. I don’t have any personal knowledge of Dana Farber, but it is a major cancer center, so not a bad place to start. NYC has several excellent hospitals. I was treated by NY Presbyterian by surgery with Dr. T. Kato, who has operated successfully on many patients who were judged ‘inoperable’ by others. I would have likely been in that category, but Dr. Kato was my first stop. I would question why your daughter is considered inoperable and consider seeking additional opinions. In the link below my name are a number of hospitals we have experience with. I have posted complete contact info for Dr. Kato in the 4th section of that thread. Other hospitals in NYC that have experience with CC are Memorial Sloan Kettering and Mt. Sinai.
I know Dr. Kato would give you an honest opinion of your options.
I wish you good luck in finding care for your daughter. Keep us posted as to how you make out. You will find a lot of caring, helpful people here. Time is important, so try to have a plan in place soon.
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