CancerCompass message board discussion started by Skyknight on 7/19/2005 http://www.cancercompass.com/message-board/message/all,2526,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am a colon cancer survivor who is now entering his fifth year since my initial diagnosis. I am well but the battle continues. After six surgeries in which small cancers were removed from my colon, liver, and lungs, I am facing another small growth in one lung. Surgery is again an option, but my oncologist wants to try more chemo, specifically FOLFOX 4. Has anyone out there tried it? If so, what were your side effects? Was it effective? Any input would be greatly appreciated. Thank you so much. Skyknight Tue, 19 Jul 2005 00:00:00 GMT Skyknight, I would suggest to continue the fight and try FOLFOX. My mother was diagnosed 1 year ago with metastic colon cancer to the liver (over 100 tumors) and a few tumors in her lungs. She was on FOLFOx for 11 months and her response was great! The tumors are smaller in size and over half are gone. The side effects she had was fatigue (the week of treatments), low white count and hair thinning. However, she was on the treatment so long it began to attack her bone marrow and her body stopped responding. She is now on a different protocal and continues her fight. Bottom line-it worked and her quality of life was good. Good luck!!! Michelle K. Michelle k. Wed, 20 Jul 2005 00:00:00 GMT Thanks for your information. I hope your mother is doing much better these days. It sounds like she came through the FOLFOX4 regimen in pretty good shape. The 11 month time period seems like a long time. Was this done straight through or did she have a break in the middle of that period? Did she have any tingling, numbness, or burning in her fingertips or toes while undergoing the treatment? How about nausea? You mentioned she was placed on another protocol because of damage to the bone marrow? What protocol is she on now? Sorry for all the questions! It's kind of an information void out here! Thanks for all your help and God bless. Skyknight Wed, 20 Jul 2005 00:00:00 GMT Hi - I had started a reply to you and it was deleted? So I will start again. I am on folfox and also am currently on Avastin as well. From what I have read anywhere this is the best treatment for colon cancer that has spread. Mine had spread to the lymph nodes around the colon and the abdominal wall. Originally they thought it has spread elsewhere but as my counts came down they felt it did not. I am on the treatment every other week and at the maximum dosed right now. You should also know that 13 years ago I was treated for ovarian cancer and tolerated that chemo treatment quite well also. It really is different for everyone. As far as the side effects, I do have quite a few but to me they are more annoying than anything else considering the alternatives. They are manageable right now. My hair is thinning, but I still have it. I do get nauseas but if I eat something then it helps. I also am on nausea medicine. I am very tired and do a lot of sleeping. I also have to watch my blood pressure which I am not used to but that goes down after a few days. I have muscle cramps in my hand right now and muscle spasms. I get hoarse off and on, and feel like my fingers and toes are bloated. They are not, but I know that the neuropathy is something to watch. I just started having a bit of tingling in my fingers and toes, but nothing too serious yet. I also have to watch the cold.....and cannot have anything cold to drink or get things out of the cold without wearing gloves for a few days after the treatments are over. Right now everything is annoying, and it can either get worse as the treatments prgress, or at this time, they seem to not be lasting as long as they did in the beginning. The worst is the tiredness. I also have moments where I have problems sleeping but if I take Benadryl then it is ok. So, I am sure that the neuropathy is on its way, but once again it is different for everyone. I have been advised that after the three months it usually starts and gets only worse. After the chemo is over with it usually goes away, but sometimes it does not and can be very annoying or even debilitating. I hope this helps.....I know from my research that this is a very good regimen, and considering the alternatives, I will deal with the side effects. If you need anything further let me know....I will be happy to let you know how I am doing. Take care, best of luck to you, and god bless. Chris Chrissee20047 Tue, 26 Jul 2005 00:00:00 GMT Hello Skyknight, I know you received some other answers about folfox, but I have one VERY IMPORTANT SIDE AFFECT FOR YOU TO WATCH OUT FOR!! It is pulmonary fibrosis. If you get a dry cough, TELL YOUR DOCTOR IMMEDIATELY!! I did that, but my doctor said it had nothing to do with the chemo, but it did. I ended up 6 weeks after chemo was over, in emergency because i couldn't breath. The lung damage is permenant and I am on oxygen when I do any exertion at all. The damage was done by oxaliplatin and it tells you right on their web site that patients have a 1% chance of getting pulmonary fibrosis and could be fatal. I am not telling you this to scare you or tell you not to do the folfox, I am telling you to watch out for this side affect. I would still have done the treatment, but if the doctor had listened to me, I wouldn't have another disease that will not go away. I can no longer work, and have my daughter living with me as I can't do a lot of things any more. Good luck with your treatments. If you want more info on fibrosis and oxaliplatin, go on the internet. There is lots of info. Barbara Barbara 119 Fri, 12 Aug 2005 00:00:00 GMT Chris I have ovarian (peritoneal)cancer stage 4 with a CA 125 of 700 for two years. I have been on Avastin and Xeloda (a type of 5 FU). Tomorrow I am going to start (along with Avastin),FolFox6 with a dose then and a pump for two days. I was interested in your experience and appreciated your information. Thanks and write again how you are. Also thank you skyknight for your warning. Nursepat Nursepat Tue, 04 Oct 2005 00:00:00 GMT