IV Colorectal Cancer Patients - Questions from a caregiver

Posted by bb @bbams, Aug 9, 2016

Hello all. My 36 year old husband was diagnosed with stage IV colorectal cancer 7 months ago. It has metastasized to his liver (22 cm tumor, shrunk to half that after some chemo) and multiple small tumors on his lungs. He has been nothing but positive - to the point that I almost thought it was denial - until a few weeks ago. He's done a 180. Talking about how our lives will never be the same and not good (of course life will be different... but it can still be good!) and is making more comments about how I'll be alone soon :*( The average prognosis is 3 years and, until the last few weeks, he was convinced he'd live a lot longer. Now not so much.

I've been on a few chat rooms where there have been stage IV CRC patients that are living longer than 3 years and hearing those stories seems to be the only thing that is giving him hope right now. Is there anyone out there who has been living with it for long periods of time, or who have had huge luck with chemo especially with liver metastasis? I'd LOVE to hear your story! He won't go on these boards but it'll be good to tell him about any stories that are shared 🙂

While I'm at it... if anyone has had Sir-Sphere/SIRT procedure, did you get headaches a few weeks after the procedure?

Thank you all!!

Interested in more discussions like this? Go to the Caregivers Support Group.

@colleenyoung

Welcome to Connect @bbams. I'm so glad you found us.
I'd like to introduce you to a few other Connect members. Please meet @martid @retairforceman @sue_in_delaware @nananet who are living with advanced colorectal cancer.

I'd also like to bring caregivers @soul and @IndianaScott into the conversation. Soul's mom has colorectal cancer and Scott took care of his wife who had a brain tumor. I hope you will connect because caregivers need a support circle too!

My father had stage IV CRC. Like your husband, he wouldn't visit discussion boards. My mom and I did that 🙂 When my dad was diagnosed he was given 6 months with treatment and a year with palliative chemo. (Note: His cancer had metastasized throughout his body, not only his liver, thus not the same as your husband.) The chemo proved to be too much and he didn't like how the side effects diminished his quality of life, so he stopped treatment. We were blessed to have him stick around for a year even without treatment. Most of that time, he was pain free or his pain was well managed.

Colorectal cancer is a slow moving cancer. You will find stories of hope. Remember too, that hope comes in many forms, and may evolve as time goes on. That's okay. Enjoy every moment. I encourage you to honor your husband's "180 turn" and to give voice to the fears - both his AND yours. Once you both acknowledge the elephant in the room, you can talk about the things that are important and good. Are you able to talk frankly about the "tough stuff" with each other?

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Thank you Colleen for mentioning my name. I was traveling and was just back to U.S. I would like to share with the patients and their immediate family members who is suffering colorectal cancer. My Mom had a colorectal cancel when she was diagnosed according to her endocrinology report in January, 2016. She is 77 years old. Her bowel movement was not good and she had direa came out with blood every times she went. My Mom is so afraid of operations. She did not want to do the operations. I could not take her here since she lives in Thailand. I checked with Mayo clinic website and found out the Thai Surgeon who came to practice in Minnasota Mayo clinic for a few years, With that connection, I was able to discuss with the doctor and took my Mom for the surgery in March. My Mom was staying at the hospital for 13 nights. It was a successful surgery. My Mom is back home and she is doing fine. My Mom is now very careful with what she eats. There is always way to treat this colorectal cancel. The sooner you know the better to approach the ways of treatment. You just need to be patience and always keep positive no matters what happen or you are in the worst scenario. I have been grateful to Mayo clinic, the Thai surgeon who came to practice at Mayo clinic.

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Hi @bbams, Just checking in. How are you and your husband doing?

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Hello, my mom was diagnosed with stage 3c colon cancer last month and had a resection with ileostomy...the doctor said that adjuvant chemo will be given but before that we did another chest and abdomen scan that shows 4 hypodense lesions in the liver...she has had her first cycle of chemo and came home yesterday.. She hasn't been sleeping very well...she is a very strong woman and even now when she is going through the toughest time in her life she acts strong infront of me and my sisters because she is an only parent and does not want us to get worried but what i am worried about is her...i want her to talk to someone, to cry and disscuss what she is feeling..what else can i do for her??

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@bush

Hello, my mom was diagnosed with stage 3c colon cancer last month and had a resection with ileostomy...the doctor said that adjuvant chemo will be given but before that we did another chest and abdomen scan that shows 4 hypodense lesions in the liver...she has had her first cycle of chemo and came home yesterday.. She hasn't been sleeping very well...she is a very strong woman and even now when she is going through the toughest time in her life she acts strong infront of me and my sisters because she is an only parent and does not want us to get worried but what i am worried about is her...i want her to talk to someone, to cry and disscuss what she is feeling..what else can i do for her??

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Hello @bush Nice to e-meet you here. I am Scott and I was the primary caregiver for my wife who battled brain cancer for 14 years. I am sorry to hear about your mom's diagnosis.

I am not any kind of medical professional, so this comes solely from my experiences with my wife.

Step by step, my wife lost her independence due to her disease. The one thing she could continue to have any semblance of control over was her communications, visits, etc. I realized very early on the best thing I could do was listen. I understand your desire to have her talk with someone, but in my wife's case she did not want to until she was ready. Then it was only with certain people and for and at certain times. In her case it came down to one nurse and only one of her four siblings.

I am not saying this is right, all I am saying is this is what brought her comfort and come peace.

Just my two cents plain.

I send courage and strength to you all!

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@bush

Hello, my mom was diagnosed with stage 3c colon cancer last month and had a resection with ileostomy...the doctor said that adjuvant chemo will be given but before that we did another chest and abdomen scan that shows 4 hypodense lesions in the liver...she has had her first cycle of chemo and came home yesterday.. She hasn't been sleeping very well...she is a very strong woman and even now when she is going through the toughest time in her life she acts strong infront of me and my sisters because she is an only parent and does not want us to get worried but what i am worried about is her...i want her to talk to someone, to cry and disscuss what she is feeling..what else can i do for her??

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@IndianaScott yeah i totally get that...one of my mom's friends had cancer, got cured then had a recurrence but is cancer free now...she is out of the country at the moment so im hoping once she is back my mom can talk to her....till then we are trying to be as helpful as possible but everytime we visit the oncologist, we get to hear another bad news

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