middlesister1
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Dear Mette,
I’d like to add my welcome to the group. I am sorry your family has been faced wiith CC.
Best wishes are with you and your husband.
Catherine
Steph,
My mother had one tumor and it had not spread, but the location made it that they could not surgically remove. She had 3 cycles of GEM/CIS and then she had two treatments with the Y90 radioactive spheres (SIRT). Also, two weeks before and after the 2nd SIRT treatment, she took xeloda to enhance the response of the tumor to the radiation.
Best wishes,
catherineDear Steph-
I guess I should not respond to posts at 530 in the morning. Please forgive my thinking that this was your first time introducing yourself.
Take care,
CatherineDear Suggi,
Welcome to our group. I’m so sorry that your again facing a cancer diagnosis, but hoping that you can beat this one too. My mother was diagnosed in Oct 2013, could not have surgery, but is considered in remission now (a term her first doctor said did not happen with this cancer ) and looking forward to a trip to Mexico next month. There is hope. Most post their first time under introductions, so if you copy your post there, more members may see it.
Most important is to be at a hospital that has a team who are very experienced. Where are you being treated? We’ve also had members who were first told no surgery, but then after a second (or even third) opinion, had successful surgery,
Great place to start for more info is the Homepage under Newly Diagnosed. It will give an overview on treatment options.
http://cholangiocarcinoma.org/newly-dx/
I would also suggest reading the second “sticky” topic entitled Introduction/Welcome on the Intro board.
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=18Keep in touch and let us know how you are.
Best wishes,
CatherineLisa,
I hope you’re having a very special celebration today; you deserve it!!!!!
So very happy for you and your family. Also, Thank you for inspiring so many with your story.
Take care,
CatherineDaisy-
Thank you for the hope and wonderful words of advice to new members. It is so uplifting to read the good news posts- keep them coming!!!
Best wishes,
CatherineDear Carol,
Mixed feelings- I’m also very glad you’re here but of course we wish we met you under different circumstances.
I’m very happy to hear you are getting a second opinion. Unless you are at a center with a “tumor team” who are familiar with CC, they may not look at all options beyond the first line GEM/CIS.
I think it is a very good idea when you go to Mayo (or even with current ONC) to ask about clinical trials. If you haven’t done so already, I’d also ask about having the genetic testing done to see if there are mutations that might indicate a treatment course.
We wish you the best and please keep us up to date on how you are doing.
Take care,
CatherineDear Mike,
Thank you for sharing such a wonderful tribute to your wife and the life you shared. I have known a few this year who have lost loved ones without any warning. If there is any positive thing about this disease, or other illness, is that for some it is a wake up call to live each day and appreciate your loved ones. However, it sounds like you and Mary Jo already knew the importance of love and life. I truly wish for you that it could have been 65 or even 75 years.
I am very sorry for your loss.
Catherine
Dear Nikki,
Welcome! I hope the clinical trial works out for your Dad. It sounds like he is one of the fortunate ones on how he tolerated the GemCiis. However, chemo is harsh and I know our ONC always focused on making sure she was doing more good than harm.
Please keep in touch and let us know how your family is doing.
Best wishes,
CatherineCat,
I also want to add my welcome to our group. You have found a group of people who also had to learn what CC is, and can understand the fright that goes along with hearing the diagnosis.
We are here for you.
Best wishes,
CatherineDear Carol.
I think it was yesterday or day before that Marion posted something which has stayed with me; Grief is the price we pay for Love. It makes sense that those who were fortunate enough to share such a loving bond, unfortunately also have to face the grief. Much love and hugs coming your way.
Take care,
CatherineScott,
Welcome! We are now all behind you in wishing you the best in this fight. My mother was unresectable but still doing great after almost 2 years. She had Gem/Cis and then two SIRT treatments. At her last scan, there was still no evidence of disease. Your doing the right thing with the second opinion at a center that is familiar with CC and should be taking a multi-disciplinary look.Take care,
CatherineDear Carol,
I am very sorry to hear of your Dad’s passing . From your posts, it was so clear on how much love you had for him; I’m sure it offered him some comfort.. My heartfelt condolences are with you and your family.
Take care of yourself,
CatherineDear Greg,
Welcome to our group! Thank you for sharing your story. NED is much too rare with this disease but it sounds like your chances for staying that way are great. I have read of many being offered or doing chemo after resection but your also had radiation as well.
We look forward to hearing about great scan results in October.
Take care,
CatherineDear Duke,
I read this post very early this morning, and took a while (many hours) on how I could possibly respond that might convey how much you mean to all of us. So, this evening, I started looking back on your posts over the years. You shared so much of yourself; I loved the joke about the Lone Ranger and comments on not having to shave your legs. There were so many that made us smile and so many that made us appreciate what we have and those who love us.
For an engineer, surprisingly you really can express yourself so well, so please forgive me for using you own words to try and express how I feel.
“Hold the torch high so the rest of us can follow you. We can’t physically help you along but know that our thoughts and prayers go out to you. When you need strength, close your eyes and open your mind – we’re there for you, just like you’ve been there for us.”
And, it is so true as you stated that once you are part of this family, you are always part of this family.
Thoughts, love, prayers and hugs are with you and your family,
Catherine
