CancerCompass message board discussion started by AttorneyAnn on 4/18/2008 http://www.cancercompass.com/message-board/message/all,23179,0.htm Wed, 09 Jul 2008 00:00:00 GMT Wed, 09 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My family member (stage 4, M1) has been offered a clinical trial using cetuximab in combination with drugs used to treat EC. The drug trial groups are: 1. epirubicin, cisplatin, fouorouracil (ECF-C); 2. irinotecan, cisplatin (IC-C); and 3. leucovorin, fluorouracil, and oxaliplatin (FOLFOX-C). Has anyone out there been on this clinical trial or can you offer any advice on what to expect?    AttorneyAnn Fri, 18 Apr 2008 00:00:00 GMT Hi-Did not do clinical trial, but used some of these drugs. My husband's cocktail consisted of 1/wk infusion of cisplatin, irinotecan and docetaxol (some of the drugs are the same but may be called different things depending on Brand Name of manufacturer). We did 2 weeks on/1 off and 2 more on/1 off to make up a round of chemo (the off weeks are worse than on with side effects, which is why they give it off).  Primary tumor was adenocarcinoma at esophagus/gastric junction, and mets to lung. Started with radiation/chemo-shrank primary and cleaned up lung mets-followed with Ivor-Lewis and lung resection (3 local lymph nodes positive, lung met negative-no follow up chemo). Second lung resection about 9 months later with small lung met positive for EC.  2 months later, mets to both lungs with two rounds of same chemo (no radiation, but bigger chemo drug doses-BRUTAL but still here). Finished chemo last May or June. NED up till December when he faced emergency bowel resection. 2-3 weeks after resection, mets back in both lungs. They fluctuate between growing slightly to others doing nothing at all. My belief is that his setbacks in the past few months have allowed the mets to get a foothold again, and the oncologist does not discount my theory.  We do a form of energy healing called tongren, and I also believe it has helped us to keep the cancer at least somewhat at bay, and clearly made a difference in chemo side effects while in treatment. The chemo regimen is quite intense. The first round/radiation caused some hair loss, but the second round made every hair on his body depart within days, so I'd advise a short haircut so there's not a trail on pillows, showers, etc.  The diarrhea from the irinotecan is worse than you could ever imagine, or was in our case.  It went on for weeks, and involved a couple hospital stays for hydration, before I got really good at recognizing the danger signals and knew to get him hydrated before it was critical.  Don't let the nausea or pain (if experiencing either) get ahead of you because it makes it very difficult to knock down. If you don't get results from anti-emetics prescribed, try another. We found the combination of Emend/zofran kept us from starting endless rounds of vomiting that went along with 1st round of chemo/radiation when we used just Zofran.  Are you in clinical due to bone met, as opposed to real treatment where you know what they are doing for sure?  Would someone else consider using proven regimen instead? The regimen we used has had the best statistics to date, but I recognize that different treatments are used for different cancers, etc, so maybe the clinical trial choice is the best option with bone mets. tongrenhealer Sat, 19 Apr 2008 00:00:00 GMT I'm not sure if someone else would offer a treatment. So far, he has the original diagnosis from an oncologist in Charlotte who offered the clinical trial. They sought a second opinion from Dr. Rice at Cleveland Center who examined everything except the bone biopsy and confirmed the diagnosis. They go to Duke on Monday (4/21) for a third opinion asking if there is any other treatment available or a better trial. Apparently the bone met. although only in one place, eliminates surgery as an option although I am not sure if that means surgery is never an option or just not an option now. I don't know whether a clinical trial is better than a standard chemo treatment regimen or not. We are so new to all of these issues and questions and not ever sure exactly what to ask. What is tongren healing? Also, he is having difficulty sleeping flat. Any advice?        AttorneyAnn Sat, 19 Apr 2008 00:00:00 GMT My husband has been on cetuximab since Dec. 07,  It's a 6 mo. trial used along with the standard protocol, his being four rounds of irinotecan and cisplatin with radiation.  He had the Ivor-Lewis operation done laproscopicaly in October.  He was diagnosed with IV4A SSC last June.  His skin broke out a lot in the beginning but with meds it now looks almost normal. just a bit reddish.  He gets little cuts around his fingernails and has found Nexcare Skin Crack Care, a paint on protective to work well for that.  The oddest thing is that his hair is a thick brown and his eyelashes are longer and thicker too.  His hair doesn't grow too fast though.  He's 66 and had very little greying before but some thinning.  His hairline has advanced also.  His doctor jockes that he should have a side business in curing baldness.  He'll have CT scans every 3 mo. for 5 years and every 6 mo after that.  His first two scans have been clear.  After 4 stretches his new esophagus is workiing well and his 1/3 sized stomach is less fussy,  He started out with a 5% chance of a cure and now it's moved up to 50%.  He got clear margins on his operation.  I'm still very frightened but feel so blessed with my husband's progress.  I'm very hopeful and want to share that hope with you.  God Bless You Bugsbee Fri, 09 May 2008 00:00:00 GMT My name is Steve Brown I am 40 YO ( will be 41 on June 30th), I was Diagnosed with Stage IV Adenocarcinoma of The Esophageal/Gastric Junction with Liver Mets, on Jan. 6th 2006. My Family Phys. said I only had a couple months to live. I had a small tumor in the esophagous appx 2-3 cm, and "inumerable" tumors in the Liver, 2 large tumors 6-8 cm, and somewhere around 200 1-2 cm tumors. My Oncologist was not as negative as my family Doc but said he did'nt have anything good to tell me. He did feel if I could handle large doses of chemo, we could get to some form of remission. I guess there is some advantage to being diagnosed with cancer when you are a strong, healthy, 38 yo Fire Fighter. Within 2 weeks of my diagnosis I was in such terrible pain ( the Liver was beginning to fail) that I was taking about 40 mg of morphine, and 80 mg of Dilaudid a day.I started mid-January on a combination of Cisplatin and Irinotican, sorry I don't remember the dose. This stuff made me sicker than a dog, but my Liver pain began to disappear in 2 weeks. In less than a month I was not taking any pain meds. We did 2 weeks on 1 week off, for 6 weeks, and had a CT. It showed huge improvement. So we went on the same schedule for 6 more weeks, and another CT. That one showed recurrent Cancer, ie. the chemo stopped working. Next I spoke to a specialist at OHSU that my oncologist refered me to, about a drug trial for Cetuximab (marketed under the name Erbitux). I was accepted into the trial, and had weekly doses for 6 weeks, had a CT again it showed improvement. So, 6 more weeks of treatment, and another CT, bad again. So we stopped the Erbitux and started Taxol weekly doses for 6 weeks, another CT, good. 6 more weeks of taxol, CT, Bad. So in November of 2006 I had a Bard Port implanted in my chest and we started on FOLFOX. We continued this regimen for 8-16 weeks at an interval of 1 week on 1 week off, then went to 1 on 2 off, and had several CT's showing improvement. In August of 2007 I had another CT, by this time I only had 2 small, 9-11 mm lesions in my Liver. Next we had a PET Scan and it did'nt even light up on the known lesions in the Liver, but did show some activity in GI Track which is normal, but not defenitive. So we did another Endoscopy ( that was how they found my primary tumor, it has never shown on CT) the same Dr did it and was amazed, he could not find the tumor, double checked his notes and pictures, finally found a small scar, biopsied the entire area, and it all came back negative. Since then we have stopped using the Oxalyplatin, it was cusing pretty severe neuropothy in my hands and feet. But still continue with the 5-FU and Leucovorin, once every 4 weeks. We had gone to 12 weeks between scans and continued to shrink the last 2 lesions (7-8mm in Feb. 2008, and very disorganized and faint on CT) I have not had a CT since February and we are waiting until August this time (6 months) Sorry this is so long, I just wanted to get the order and combinations in there. For almost a year now I have felt almost completely healthy, except after Chemo. So many people continue to say what a miracle I am. I just want people to know what I went through and see that there is hope. I don't know which of these drugs or combinations worked. I just give God 100% of the credit, but that doesn't mean he can't choose what methods he uses to heal us. I truly believe God gives knowledge and wisdom to Doctors, and he expects us to use what resources he provides. After all the Bible says" ..God allows the rain to fall on the just and the unjust alike.." I hope this helps, I don't know where you are, but my Dr. is William "Bud" Pierce at Salem Hemotology Oncology in Salem, Oregon. He is a very well thought of Oncologist around the country, and travels frequently to speak. If  the Oncologist wants to call him, he could share the details. Again, sorry it's so long, this is the first time I have ever posted my story. Eph2 8&9 Wed, 18 Jun 2008 00:00:00 GMT