Hello All :)
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Hello Aimee – welcome from another floridian (we live in Fort Lauderdale). My partner, Ben was diagnosed in August 2010 with intrahepatic 7.5cm tumor in the liver with mets to the surrounding lymph nodes and the Omentum (lining of the stomach).
In November he started the recognized standard protocol of Gemzar/Cisplatin (which sounds like you will be on). I have detailed accounts of his journey so far (mostly in the Chemotherapy section).
So far he has responded very positively to the chemo (and as of the end of April they could see “little if any” remaining of the primary tumor – so right now we are happy and amazed (we are waiting to rescan in another month).
Our original diagnosis was from Mayo Clinic in Rochester, MN – but Ben is being treated by a local oncologist in Fort Lauderdale (Dr. David Lessen).
Good luck with your battle – keep a positive attitude and keep on fighting!
tom
I know before they found the spots on my lungs they made it sound like surgery was an option, once they said “pallative” it seemed like that option went out the window – I’ll definitely ask again this week to get a better idea! I’ve never heard of Naturopathics before – but you can bet I’ll be researching it as soon as I close this window
And thank you for the book recommendation – I’ve been hunting for something to read that was insightful!
Dear Aimee, Praying for you and wishing you and your family all the best.
Definately seek other opinions if you do not feel you are getting your questions answered. My husband is stage 4 with mets to his liver and bones and has done well on gem/cis. At one point he had spots on his lungs but they are gone now. I would ask if the lungs clear can you then be a canditate for resection?
Doug also receives naturopathic support which we believe has improved his quality of life and has extended his life. All the best to you, your little sweethearts and your husband. NancyThank you all so much for your kind replies and prayers! I am hoping this website can help me educate myself on this kind of cancer and the options I could possibly have so that may get another opinion if necessary … I’m told I’m receiving “pallative” care, not curative, and I can’t really be sure if I’m satisfied with that or not, or whether or not I have a choice in being satisfied with it. Mayo was where I went to get a second opinion (after I gone to the local hospital) – and I was told because the tumor in my liver was 17cm and because cancer had spread to my lungs, chemotherapy was all they could do, aside from hoping for the best. My doctor seemed against signing me up for any clinical trials and I got the impression he felt it was too risky of a thing to do because of how advanced my cancer is. They’ve taken good care of me at Mayo, I just don’t want to give up if there’s something more out there
Again, thank you so very much for your responses – I feel like I’ve found a wonderful place to get a bit more control of my situation! Thank you, thank you!
PS – 2kidsejca, I’m also receiving gemzar and cisplatin – I hope your husband is doing well with it! lchase, I wish your daughter the best of luck – cancer has been a hurdle in life I never anticipated (especially at this age) but my family has been the most valuable form of support I could have ever hoped for and I imagine she appreciates you just as much!
Hello Connie, WOW! I am also in the Phoenix area. Yes, our Mayo has come a long way in treating CC in just a couple of years. I would be most happy to meet with you, if you wish. Do you live here? I can come to you. There is no feeling in the world than meeting a Member of our CC family. Please let me know and I would be happy to meet with you. And thanks for the vote of confidence with our Mayo!!!
Hello Aimee, my husband also has stage 4 CC and being seen and treated here at the Mayo Clinic in Arizona. We’re just in awe and amazed of the professionalism and thorough care that my husband is getting from the Mayo Clinic. You seem to be in good care. He is currently on gemzar and cisplatin chemo doses and also he’s on clinical trial which is taken orally 3 times a week. If you have any questions or concern, please don’t hesitate to ask because we’ve been thru a lot before we seek treatment in AZ.
You have to be strong for your 2 beautiful kids and I am including you in my prayers. ConnieDearest Aimee – This is a lot for you and your young family to handle. Attitude will be your best friend – remain positive, seek another opinion or two, create lots of memories to cherish for your whole lifetime. This diagnosis is daunting, but sometimes, it gives us the opportunity to make the most of whatever life we have. My heart goes out to you and your precious little babies. Please share often with us as we care about your journey. Blessings, Susan
Aimee, may God bless you and your family. Our daughter, who will be 26 in Sept. was also just recently diagnosed. It is a very confusing time, and if you feel you aren’t getting answers please go for 2nd or even a 3rd opinion. We have gone for a 2nd opinion and are considering possibly a 3rd, because like you, we feel some of our questions are going unanswered. Our daughter has had her first chemo treatment last week and is scheduled for another one tomorrow. I have found a lot of infomration on this website and the people are wonderful.
Dearest Aimee, welcome to our wonderful family, and you are no longer alone! I am so very sorry about your diagnosis and to be so young my heart is hurting for you and your family. Please, I implore you to seek other opinions. When you feel the doctors are being vague, its time to search and go. You have youth on your side and someone else may see things differently. Perhaps these doctors have not dealt with CC enough not to be vague. We are strong believers in 2nd and 3rd opinions. Also please read up as much as you can on CC. Use our search engine at the top to find what may pertain to you by typing in a word. Knowledge is the most powerful weapon we have against CC. Please feel free to bombard us with questions and we will do our best to answer. You have come to the right place as we have the most caring and loving people from around the world. We are a small club but we are the best!
My name is Aimee – I’m 26 and I was diagnosed in January with intrahepatic cholangiocarcinoma. I have two little boys – 1.5yr old and a 3.5yr old and a very supportive husband. I live in Jacksonville, FL and am going to the Mayo clinic here for my treatment – which is only going to be chemotherapy because my cancer’s spread to my lungs. We’re hoping for the best here but it’s hard with so many vague responses from my doctors. It’s hard to know what to expect so I’m glad I found this site where I don’t feel so alone in my confusion with all of this. I hope to learn from you all and share some insight as well!
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