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Posts: 1019
Joined: Aug 2013

My brother will begin chemo soon. He has his liver biopsy on Friday. I was told he'd have chemo for 6 months and then they'd do tests to see what's next. What kind of tests do they do? CT, MRI, PET? I explained to him that I think he has to look at this like a chronic condition. he will need to get his chemo, do tests, if things clear up, he has to keep going in for check ups and tests. If and when it comes back ,the process starts again. My brother is intellectually disabled, so I hope I explained it well enough to him.

My brother had non-hodgkins lymphoma in 2000 and had his spleen removed, had chemo and I believe radiation. He had no recurrence but in 2011 he went to his new doctor who found blood during a rectal exam. They did a colonoscopy and found rectal cancer (it was just starting to touch the colon). He had chemo and radiation first to shrink the tumor. They removed the tumor and gave him a temporary ostomy bag. He had a lot of issues with the bag because of his delay. He ended up remaining in the hospital for almost 2 months and then went into rehab until it was time to reverse the surgery. After that, he had chemo, which ended 8/12. When chemo was finished, his cea levels were good and his scans showed no sign of cancer. A couple of months ago, he went for a check up and his cea levels went up slightly, from a 3 to a 7. The doctor did a CT scan and found 5 tiny nodules in the lungs. They tried to do a biopsy but the nodules were too small to get enough tissue so they could determine whether it was a new cancer or metastasized rectal cancer. They did an MRI and found a 3 cm tumor on the liver. He is having a liver biopsy on Friday. 

My poor brother has been through so much. if you met my brother, you would all like him. He has such a happy disposition. He doesn't complain or let anything bother him. I don't think he quite understands how serious this is. Maybe that's a blessing in disguise. I read a lot of your posts and they are very encouraging for us. When I first did research, I read that the 5 year survival rate was around 6%, other sites said 12%. It scared the heck out of me. I'm not the type of person who likes things sugar coated, I'd rather be prepared for the worst and hope for the best. I see a lot of encouraging things going on at this site. Thank you all for sharing your stories. Once I know what drugs they are going to use, I will post. Any ideas on what they'll give him? I remember last time one of the drugs was 5FU, I think. I know I have the paperwork hidden away, I have to pull it out and see what it was. I assume they're going to try new/different drugs this time? 

Again, thank you for sharing all your stories.





Posts: 1607
Joined: Aug 2012

I can't answer your questions, but I agree it is a blessing that your brother doesn't understand how serious this is.   He's lucky to have you looking out for him.  I hope things go well.

Posts: 1019
Joined: Aug 2013

He's 49 years old. He had NHL when he was 36. Now he has metastasized rectal cancer. I feel so bad for him. It's a lot for him to deal with.

annalexandria's picture
Posts: 2573
Joined: Oct 2011

but I would like to say try not to focus too much on those numbers.  When I first got diagnosed, my doctor specifically asked me not to go online and read about my situation (I have a rare tumor type, with even worse odds than normal crc). That was in 2009.  I just recently looked up the stuff my doc didn't want me reading, and found out that I basically should be dead right at the moment.  And instead, I have been NED for 21 months.  This could change at any time, of course, but I've still beaten the odds.  And your brother may beat them too.  I think the only way to get through this is to live as if he will be one of those who beat the odds, until the moment when you are forced to acknowledge otherwise.  Up to that moment, might as well live as if he'll be around for a while.  It may not change the outcome, but it does make life more bearable on a day to day basis, at least for me.

Anyway, my two cents, that you didn't even ask for!

Hugs to both you and your brother~AA

Posts: 1019
Joined: Aug 2013

We are going to keep doing what we've been doing, living life. It's hard to get my head wrapped around all of this, but I am trying. I have been keeping everyone on this site in my prayers. Hopefully one day we won't need this site anymore. AA, that is awsome news.

We have lots to look forward to. My first grandbaby is due anyday now, so once his chemo is over, I plan on taking my brother and dad to see the baby. Thank you both for your kind words. 

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