Question about stage IV treatment

[jetlex]

Hi Everyone,

I'm a new member. My step-brother was recently diagnosed with stage IV cc. He's 30 years old. It's spread to his liver and lungs. He just started on chemo last week (oxaliplatin and 5FU). He will get chemo once every two weeks. The dr said on the third round, he will add Avastin.

I've read through the posts on here and also surfed the web. It seems like surgery for liver resection greatly increases the chances of NED. I went with my step-brother to see his oncologist yesterday. The dr said surgery is not an option right now because there are so many tumors in his liver and they are growing rapidly. The only thing to do at this moment is wait to see if the chemo will shrink the tumors. He said the goal is to keep my step-brother as comfortable as possible and alive for as long as possible. He said if the tumors shrink with chemo, maybe they will consider surgery.

Has anyone here with stage IV cc or knows someone with stage IV cc that has mets to the liver been told the same thing but went somewhere else that did perform surgery? I know each patient has a different situation which is unique. I just want to collect a general understanding of others' experiences. Should we just accept what the dr is saying or should we proatively be looking elsewhere for more aggressive treatment? I suppose waiting for a few more rounds of chemo to see what happens sounds logical?

Thanks for any thoughts you have.

~jetlex

[missjv]

hi,
welcome to the club. well my opinion is for you to take your brother to a large cancer center where they have surgeons who operate on the liver regularly. unless your onco is a surgeon he does not know for sure whether surgery is possible. getting started on chemo is good but please go get a surgeons opinion because there are many treatments that can be done directly to the liver to kill tumors such as removing them surgically, radio ablation which zaps them with heat waves, freezing, alcohol ablation, they even insert radiation beads into liver to kill tumors and they can also install a hepatic artery pump which will deliver chemo directly to the liver while also undergoing systemic chemo. all these types of treatments are done at major cancer centers i don't know where in the country you live but good ones are sloan kettering in new york city where i go, md anderson in houston texas, vanderbilt in nashville tennessee, fox chase in philadelphia, duke university in north carolina and there are others on this board who have had successfull treatments from hospitals out west that i am not familiar with. your brother is young and he needs the most aggressive treatments he can get. i was diagnosed stage 4 with 3 small liver mets and told by my 1st onco that chemo to keep me comfortable ( and i was not and still not uncomfortable) and you can't just chop on body parts. well i did not accept that and referred my self to sloan kettering and am now showing no evidence of cancer after surgery to remove the 3 little spots that were on my liver and am undergoing chemo to stop anything microscopic that could be trying to grow and i also have hepatic artery pump to zap liver directly with chemo that will stop anything that could be trying to grow as well so do not take the 1st opinion, a large cancer center is your best bet look those up that i mentioned on the net and read about their programs for metastatic colon cancer www.mskcc.org is sloan kettering website the others i do not know but just search their names im sure you will find them. good luck!

missjv

[Christine]

First, getting another opinion is always a good idea especially from a large cancer center or a cutting edge facility.

That being said, with mets in both the liver and the lungs, there are many surgeons who would not currently do the surgery. (My liver surgeon will only operate if the liver contains the only visible evidence of disease.) That does not mean they would not consider it in the future. Also, for stage IV, a lot of patients have the colon surgery and then go through chemo for a while and then have a liver resection or one of the other procedures missjv mentioned.

After my colon surgery, I did not qualify for a liver resection; however, I had six months of Folfox with Avastin. Following those treatments, I had a consultation with a prominent liver surgeon who agreed to do the surgery. It was still very agressive and they had to remove 70% of my liver, but that was last July and I am currently NED.

[jetlex]

Thanks missjv and Christine for your replies. I've been reading a lot of your posts and they are very helpful. Congratulations to both of you on being NED. You are good inspirations for others on this board including me on behalf of my step-brother.

We live in NJ, so Sloan Kettering would be the closest major cancer center for us. Unfortunately, my step-brother is not working so he doesn't have medical insurance which makes things a little more limited for us. We had inquired, and Sloan does not accept patients w/o insurance. My step-brother is currently being treated at a local hospital which has charity care. We've also applied for medicaid. If Sloan is the best bet, we will find a way to pay for it. Also, we were thinking, if the local hospital has good treatment, it is a good choice because it is closeby (a 15 min. drive from us), so he doesn't have to travel so far for treatment. He's in a lot of pain and discomfort so long travel is difficult. But if a large cancer center is the best bet, a long drive is worth it. The pain meds seem to help.

~jetlex

[bossan]

I was DX'd almost 2 years ago, stage IV, mets to liver (7 spots, one very big one) and abdomen. I was given 2 months at the time. I was in a great deal of pain, lost 30 pounds at 45 years old. I was not a candidate for surgery and started on the same regimine as your step-brother, had great results (down to 2 small liver spots, tumor gone but cancer cells still present) then it grew in the liver, switched to irinotecan/avastin, got more great results, then a small increase in 1 of 2 nodes again in the liver. I'm now on panitumumab/xeloda, everything has stopped growing except for a small increase in the abdomen.

Its been very rough, no surgery for me still, but I'm still here. Check my links for more detail.

Everyone reacts to treatment in their own unique way. Many here seem have been cured in late stages, but they all did it their own way. Stay focused on healing, if there is no cure right now, it can be managed, especially since you step-brother is so young.

[jetlex]

Thanks bossan for your encouragement and words of hope. Best of luck to you in your continued fight against this terrible disease.