I am dealing with stage 4 colon cancer, mets to liver and lung. I am determined to win this battle and would like to find others that have survived or are determined to win as I am. I am currently on Avastin and Xeloda. I went through 5 months of Oxiplatin, Avastin, & Xeloda last year. The neuropathy was so bad with the Oxiplatin that it was left out this time around. I have great hopes of finding others in my area so that I can start a support group of people with a strong will to survive. I live in Apple Valley CA.
Elizabeth

Hi there! Have you checked out the Colon club forum?( www.colonclub.com) There are many on this site who have battled cancer(even stageIV) and survived and are living still with colon cancer. There is a "colondar" where survivors bare their scars but on the front is a stage IV colon cancer survivor of 9 years! She is our inspiration! I myself,am a stage IIb colon cancer survivor at age 34! I hope this site helps. I know in my darkest time in the valley I saw the Light just over the mountain ahead of me. There is great encouragement there and I hope you find what you are looking for:-)
My user name is 2yng on that site as well, but ya'll can call me Kendra;-)

You can also ask Colon Cancer Alliance (CCA) for a 'buddy' if you're looking for a fellow stage IV colon cancer survivor. You can reach their buddy program at http://www.mycrcconnections.com/

They should also be able to point you in the direction of any colon cancer support groups which may already be active in your area.

Hi Elizabeth,
I live in Florida but the two sites other people recommended are good for finding buddies with Stage IV. I too am Stage IV, diagnosed at age 37 with mets to liver, some lymph nodes, and some other "non-essential organs." I went through two round of FOLFOX, some FOLFIRI after a reaction to FOLFOX, 2 Sirs Spheres, and 3 surgeries. The FOLFOX and Avastin really helped get rid of tumors to my liver but the Sirs Spheres brought me down to just a few and made surgery possible. I was on Xeloda and Avastin for about 8 months until my CEA started going up again in Jan of this year. I was getting less Xeloda than when I first started because of terrible foot and stomach problems. A tumor had regrown in my liver. Chemoemoblization in July seems to have killed it - it was small. Now I decided to go on Erbitux and Irinotecan. It is supposed to really work well if your tumor is KRAS normal or wild (not mutated). I have heard from others on mycrcconnection that this combo has brought their CEA down to almost nothing and some people have had NED (no evidence of disease) for many months, even a year. I have not yet had my CEA (which had climbed to 16) or a scan...I will know how it is working next month. But I actually feel so much better on this than the Xeloda. Minimal side effects for me fortunately. Worst problem is the acne rash but that is supposed to mean it is working. I have that managed now.
It is difficult but recently I have accepted that this may very well be a chronic condition for me. I can live with it. Right now, my quality of life is very good...could be better by not having cancer though. I know it is difficult. If you have any questions, maybe I can help. It is a scary road to go down. But my nurses tell me of Stage IV survivors who at are their 8-year survival mark with treatment. I have a friend on weekly dialysis so I guess my life is no worse than his. I try to focus on the good things because no one said life is fair and there are always hurdles for most of us. Good luck!

Oh, I forgot to mention that while I was off chemo for my recent chemoemobilization, the mets in my lungs grew. They are still small, under a centimeter, and scattered. So Erbitux and Irinotecan is the best treatment, systemic chemo. Others with lung mets have told me that this combo got rid of all lung mets!

My husband is a 3 year survivor of metastatic colon cancer (diagnosed Stage IV). He has been on XELOXA (Xeloda, Oxaliplatin, Avastin). The supplements, glutamine helped with the neuropathy, milk thistle has helped his liver function so that he can process the chemo better. He diagnosed with a CEA of 243 and mets to liver and abdominal cavity. Went down to 3.5 CEA and stable after the first 9 months on the treatment, but only had a 6 month break. Now in his lungs and he is about to start on irinotecan instead of oxaliplatin. Erbitux will be next. We hope that this works on the lung mets. Have heart and keep hope. He is doing well even with the cancer, and we have learned that even if a cure is not possible at this time, just having quality of life, time together and the ability to do some of the things he loves is what life is about. Can you tell me more about chemoemobilization? Anyone had proton therapy or tomotherapy for lung mets?

I wish your husband luck too. As I said in my earlier e-mail, I am finding Erbitux/Irinotecan easier to handle. There is no pump for 2 days so I am not as tired as I was on FOLFOX. And Xeloda made me feel like I had chronic fatigue syndrome as it was constantly going into my body. Studies have shown that Avastin may decrease effectiveness of Erbitux so make sure they don't continue Avastin with the new treatment. Did they test your husband's tumor to make sure his KRAS is normal or wild, not mutated? Those with mutated are not found to respond to Erbitux.
Chemoemobolization is where they place chemo directly on the tumor. It is not done with the lungs as far as I know. But I had a small tumor regrow in my liver and since I have had two surgeries on my liver this was decided because it was small and they did not want to create more scar tissue. It was very effective. I have also heard that cyberknife is good with liver tumors.
But systemic chemo is the way to go with small lung mets that are spread throughout. They counted about 4 or 5 small ones in my lungs. I have faith that Erbitux/Irino. will take care of these from what I have heard from others in my position. It will also get rid of any remaining cells in the dead liver tumor as it is systemic. It makes me feel safe to know it is killing the cells that do not show up on scans.
Good luck!

Oh, I forgot to let you know about the acne-like rash that is a nightmare - from the Erbitux. The rash is good because they say that means it is working. BUT it was horrible for the first 10 days. I decreased it somewhat by starting on the oral antibiotics the day of my first Erbitux. Someone told me I should have started before the Erbitux and not after. The topical cream was somewhat helpful. I used Metrogel and now find that the UK product Sudocrem is better. I had deep painful red pimples. After about two weeks they become whiteheads, tons of them. They break easily though and I get little scabs. Also, the head itches like crazy so I take Benydryl. The rash on my chest and back is manageable. After about a month, with antibiotics, I now only have a a few whiteheads every day on my face. Erbitux effects the hair follicles and makes them inflamed, causing them to form pimples. I take Zofran for about four days after the Irinotecan for the mild nausea. I have not had the stomach issues some have because I was born constipated so it has made me normal. But some people have the big D very badly.
Also, they should do Erbitux with the Irinotecan. The chemo is more effective with it.

I cannot take erbitux as I do have a mutated KRAS gene. I am currently on Avastin and Xeloda. Next week will be the 6 month mark for this round of treatment and then I will be having a pet scan. My CEA has gone down from 14 to 3.5, so I am very optimistic. I am struggling somewhat with the hand foot syndrome from the Xeloda but still tolerable. Xeloda has a great patient program and one of the Xeloda nurses calls me each week to see how I'm doing. They are the ones that told me to take vitamin B6, 100mg each morning and at night. I think that was mostly to help with the neuropathy caused by the Oxiplatin I was on last year. Thank you for the web sites and am going to them now.

Hi, I'm Stage III colon cancer mestastized into my lungs. Started Erbitux and noted first reduction in nodule size in over a year! However, the erbitux created massive rash of pimples. My doc suggested a chlorinated swimming pool...IT WORKED! Within 20 minutes the intense pulsating stopped and within two weeks all inflamed areas were lessened and less itchy! I don't know how it works, but if it relieves the pain and itch, I'm all for it!