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Research Study For Cetuximab

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Caregiver
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AttorneyAnn
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Subject: Research Study for Cetuximab
Date: 04/18/2008
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?   
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tongrenhealer
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Subject: RE: Research Study for Cetuximab
Date: 04/19/2008

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.

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AttorneyAnn
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Subject: RE: Research Study for Cetuximab
Date: 04/19/2008
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?       
Subject: RE: Research Study for Cetuximab
Date: 05/09/2008

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

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