CancerCompass message board discussion started by larry355 on 4/27/2008 http://www.cancercompass.com/message-board/message/all,23468,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My brother has stage IV colon cancer that has not responded to the first line standard treatment of FolFox.  He also had erbitux.  He is 37 years old.  I'm trying to find someone who has had some success with other treatments when Folfox has failed.  Any information would be greatly appreciated.  I am very new to this and I have just gotten involved at my brother's request, but I don't know where to turn.  Thanks,  Larry. larry355 Sun, 27 Apr 2008 00:00:00 GMT I also did not respond to Folfox with Avastin.  I did respond to Folfiri with Erbitux after my first recurrence.  After my second recurrence I responded to Folfox with irinotecan added.  There are still options.  I will be switching to Xeloda, irinotecan and avastin next week since they don't want to keep me on the oxaliplatin too long. Sally Sallyw48 Sun, 27 Apr 2008 00:00:00 GMT My husband was stage lV with liver mets and was originally treated with 5fu, oxaliplatin and avastin but could not metabolize the 5fu.  He's currently on Camptosar and Erbitux with great results.  All tumors have either disappeared or shrunk significantly.  Hang in there til you get the right combination that works. No5fu4me Sun, 27 Apr 2008 00:00:00 GMT Sally,Thanks so much for your response.  We are waiting to hear what the oncologist says today.  May I ask, how long did you undergo the first treatment until they knew you weren't responding?  Have you tried any type of radiation therapy or radiofrequency ablation?   I am sorry to hear what you are going through and I wish you the best.   larry355 Mon, 28 Apr 2008 00:00:00 GMT Dear no5fu,Thank you so much for your response.  We needed to hear that there is still hope.  I'm just learning some of the terms and drug names, so forgive my ignorance - what are liver mets?  Your response is very helpful and it helps me to prepare to meet with my brother's oncologist today.  We are also wondering what cancer centers are best at handling colon cancer and are there other options outside of chemo, like tomotherapy or radiofrequency ablation. Thanks again, Larry. larry355 Mon, 28 Apr 2008 00:00:00 GMT  On 4/28/2008 larry355 wrote:Sally,Thanks so much for your response.  We are waiting to hear what the oncologist says today.  May I ask, how long did you undergo the first treatment until they knew you weren't responding?  Have you tried any type of radiation therapy or radiofrequency ablation?   I am sorry to hear what you are going through and I wish you the best.  I was diagnosed in December 2005.  I went through 6 treatments of Folfox with Avastin when they decided it was not effective.  I then had two treatments with Folfiri with Avastin and then had surgery to remove the colon tumor and the liver tumors in May 2006.  In December 2006, a CT and PET scan revealed a new liver tumor.  I then underwent treatment with Folfiri with Erbitux which shrunk the tumor significantly--it was removed in May 2007.  After recovery I went on treatment with just irinotecan and vectibix.  Three new tumors were discovered in late August 2007.  I underwent chemoembolization and Radio Frequency Ablation in September 2007.  They seemed to have successfully dealt with those three tumors.  After RFA, I had two different intestinal bleeds that made recovery much longer than they had predicted.  After recovery, I went on chemo with irinotecan, avastin, and erbitux.  In December 2007, a CT scan showed new tumors in my liver.  In January I started on 5FU, leucovorin, irinotecan, and oxaliplatin.  This regimen resulted in a 20% shrinkage of the tumors.  They decided to stop the oxaliplatin due to potential long term neuropathy and I took a two week break from chemo due to low blood counts.  Tomorrow I will hopefully start (if my counts are high enough) a new regimen of Xeloda, irinotecan and avastin.  My cancer seems to be very stubborn and keeps coming back.  However I am doing pretty well 2 1/2 years after diagnosis and plan to continue fighting.Sally Sallyw48 Mon, 28 Apr 2008 00:00:00 GMT I forgot to note that I also had radiation and continuous 5FU chemo for 5 1/2 weeks during the summer of 2006.  This was to prevent local recurrence in the rectal area.Sally Sallyw48 Mon, 28 Apr 2008 00:00:00 GMT Sally,This was very helpful.  I'm learning a lot.  Your courage and perseverance are impressive!  I will share everything with my brother.  He had a terrible surgery this past Thursday, and he's been on a ventilator until today.  He's been sedated for nearly five days and I have not been able to talk to him.  He was diagnosed with atelectaisis after the surgery, but they later told me that he had fluid on his lungs prior to the surgery.  They don't know why it was there, but I'm wondering if the Erbitux may have had something to do with it.Thanks again, and I hope you win your fight.Larry larry355 Mon, 28 Apr 2008 00:00:00 GMT Hi Sally,Keep up your wonderful spirit.  This disease can and will be beat.  My 28 year old niece has been fighting this cancer for over 2 years now.  she was on 5fu and avastin the first round and did get results.  Had MOAS suregery and completed the regiment of 5fu and avastin.  She was off chemo for about 6 months and reoccurence.  Had another MOAS and is now on FOLFIRI and Eurbitux.   Not sure how long they will keep her on this regime.  CT scan does show she is responding. Thank God.  How long have you heard people being on this?  Have you heard anyone going on a maintainence once CT is "clean"? and/or just stay on Eurbitux?  who know how long is safe?  Do you take anyr alternative herbs/supplements etc?  I have researched so much.  Maitake and Avemar seem to help .  Those are two of many, anyway-have you heard anything about them or others?I know docs don't believe should mix with chemo, but it seems as though some people have and they are getting good results.  Also alkaline body and oxygenation of water.  Keep up your great fighting attitude!Thank you for any information you can share.  Gemini2 Wed, 30 Apr 2008 00:00:00 GMT Gemini ,had MOAS last July.Can't imagine having it twice........................Randy Maxum2199 Thu, 01 May 2008 00:00:00 GMT