Stage IV Colon Cancer

KrisS said:

I am so sorry to hear about your father. I am sure both of you are very scared. You came to a good place. There are lots of great people here. Don't give up hope. There have been several new drugs that have become available within the last 2 years, and more in the pipeline that may offer additional means of control. I would recommend finding a good oncologist preferably at a major cancer center where they are more likely to have more experience with newer treatments and sometimes offer clinical trials of drugs being developed that are not available by any other means. Knowledge is power, and reading up on the generalities of treatment is very helpful, so that you have some understanding of the disease when it comes to deciding about treatment options.

I am 48 and was diagnosed with stage 4 disease 2 yrs ago. Although I have not beaten it by any means, I am living with it and enjoying life. I was thought to have Stage 3 rectal carcinoma 5/02 until they opened me up at surgery 9/02 after radiation and chemotherapy only to find innumerable small tumor nodules throughout my lower abdomen attached to the peritoneum- the tissue paper thin smooth layer of tissue that covers the adbdominal wall and abdominal organs. (This type of metastatic pattern is called peritoneal carcinomatosis.) They did not remove my tumor, but instead did an ileostomy on me to bypass a radiation strictured piece of intestine and put me on 5-FU/leucovorin as well as oxaliplatin, a chemotherapeutic drug that had received FDA approval a couple of weeks before I started on it.

Because my metastases seemed to be limited to local lymph nodes and the peritoneum I chose to go back to surgery 4 mths for a major and somewhat controversial (although receiving more acceptance recently) surgery to attempt to go for a cure. They found just about no peritoneal nodules left, although I still had active tumor in lymph nodes and in the rectal mass itself as well as in an ovary. Unfortunately, I developed additional metastatic disease to other more distant lymph nodes after surgery.

I was feeling very sick and there was debate as to whether I might respond any more to oxaliplatin. I went back on oxaliplatin/Xeloda 6/04 and my lymph nodes and liver nodules shrank to almost normal within a month or two. I am still on it and feeling pretty well. I get tired more easily and I have lost some sensation in the tips of my fingers and feet. I have had some trouble keeping my weight up as well, and my oncologist wants to take me off of oxaliplatin for a few months for a rest. Fortunately, just this March both Erbitux and Avastin have been approved by the FDA and so are available for use. My oncologist is going to try to switch me to Avastin which reduces the ability of tumors to grow new blood vessels.

I did quit my job last June, but by September started going back part time, something that I am still doing. All and all, it has been a good year.

Here is hoping that your father is able to find a sucessful treatment.

Best wishes,

Kris

deneenb said:

Thank you all for responding so quickly and for your encouraging words. My mother just called and said the pathology report came back and it was positive for cancer in the lymph nodes and the abdomen. They didn't give any technical terms. Don't they usually tell you how many lymph nodes show cancer out of the number of lymph nodes they remove? The Doctor said that on a scale from A-D my father is a C/D, leaning more towards the D. He told my father that he has a 20% chance of 5 year survival. Fortunately the owner of the company that I work for has a brother who had a very similar situation to my father 15 years ago. He was told by the first doctor that he had 2 years to live. He went to Sloan Kettering in Manhattan, NY where they did the type of surgery that I believe Kris may have referred to and here he is 15 years later. He has placed a call to his oncologist in Sloan and has the ball rolling to get my father in there quickly. I'm very discouraged that the doctor we have never even mentioned that possibly a cancer center could offer more advanced treatment. He just left it at "there's really nothing you can do". Would Doctors rather lose a patient than lose face and say "your needs are outside of our area of expertise but perhaps at Sloan or Johns Hopkins they can offer more". I know I'm just venting now but it's frustrating as I'm sure you all know. Thank you for your support.

deneenb said:

Thank you all for responding so quickly and for your encouraging words. My mother just called and said the pathology report came back and it was positive for cancer in the lymph nodes and the abdomen. They didn't give any technical terms. Don't they usually tell you how many lymph nodes show cancer out of the number of lymph nodes they remove? The Doctor said that on a scale from A-D my father is a C/D, leaning more towards the D. He told my father that he has a 20% chance of 5 year survival. Fortunately the owner of the company that I work for has a brother who had a very similar situation to my father 15 years ago. He was told by the first doctor that he had 2 years to live. He went to Sloan Kettering in Manhattan, NY where they did the type of surgery that I believe Kris may have referred to and here he is 15 years later. He has placed a call to his oncologist in Sloan and has the ball rolling to get my father in there quickly. I'm very discouraged that the doctor we have never even mentioned that possibly a cancer center could offer more advanced treatment. He just left it at "there's really nothing you can do". Would Doctors rather lose a patient than lose face and say "your needs are outside of our area of expertise but perhaps at Sloan or Johns Hopkins they can offer more". I know I'm just venting now but it's frustrating as I'm sure you all know. Thank you for your support.