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#135293 06-13-2011 07:23 PM
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msmac Offline OP
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I have been asking a lot of questions lately and have received so many thoughtful and helpful replies. So I should start with a big thank you to everyone before I ask yet another question. Thank you!! smile

I am starting radiation in a few weeks and my RO offered to enroll me in a clinical trial for Erbitux. It is randomized and only half the patients will receive the drug along with the regularly prescribed course of radiation. The trial includes 5 years of extra followup after treatment plus an annual checkup for the rest of my life. I've been reading about Erbitux and the side effects seem manageable in most cases. I have read some posts here from people who had quite a rough time of it, though. I like the idea of the extra follow up, the possibility that it will improve my chances for disease free survival and it seems like a good thing to help with the research. I'm not too crazy about the idea of additional side effects on top of the radiation and it is kind of a big time commitment plus the drug may turn out to not be helpful in cases like mine. Patients receive 11 weekly doses of Erbitux starting the week prior to radiation and there are additional appointments involved as well. If I am in the group that doesn't get the drug, I will still have the additional followup appointments, etc.

I would be very interested to hear about anyone's experiences with Erbitux specifically and clinical trials in general, both good and bad. I have read many posts on the forum on this topic and have done quite a bit of googling as well, but would also really appreciate any additional suggested reading that might be helpful.

Last edited by msmac; 06-13-2011 07:24 PM.

Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
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I woud help you if I could but I was given cisplatin. Good luck - it's a tough decision to make- smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Hi Tracy,
I'm not sure if you have gotten to the point in screening for the study when you would discuss being a nursing mother. But, Erbitux may be excreted in breast milk (as well as other bodily fluids.) I know that it is of utmost importance to maximize your treatment options. But, if it is a blind study, you would be discontinuing nursing possibly for the sake of receiving a placebo. Just thought you would want to be aware.

Erbitux can be a phenomenal addition to radiotherapy. If you have read anything I have posted about J's misadventures with Erbitux, please don't let it scare you away from it.

I hope you get a variety of responses so that it helps you make the informed decision you desire.

Sandy
xoxox



Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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I'm not sure about this study but Johns Hopkins is doing a study on Erbitux alone for people with severe dysplasia and they do not give a placebo to the control group. I considered participating in this study through their partnership with the Medical University of South Carolina but opted for surgery- Not because of concerns about the efficacy of Erbitux but because I was concerned about my dysplasia and it turned out I had more cancer.

I'm very interested in the results of this test as early results look promising.

Best of luck!


Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
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msmac Offline OP
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Sandy, they did tell me that I would have to stop nursing. They are not giving a placebo to the control group, so it would only be if I am actually given the medicine. That is definitely one of the factors I'm considering. I think it's better for the baby to have a healthy mother than to continue nursing, but they said there is no proof that Erbitux would be helpful in a case like mine. Hence the clinical trial, I guess. I am leaning toward doing the trial. I read that clinical trial participants do better overall, even when not receiving the trial medicine. I guess because of the extra attention from doctors.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
Joined: Jan 2011
Posts: 571
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I figured you probably already knew about the nursing issue.

There isn't adequate screening yet to find out if specific patients will benefit from it or if they won't. That's what bothered J and I about having him go on Erbitux for 8 weeks. But, we thought it was better to go at it with everything the doctors were able to give him. Adding Erbitux to radiation wouldn't do anything about distant mets (they'd be undetectable at the early stage) but it could help avoid a local recurrence. So, avoiding it in the same area was what appealed to J, given his situation.

I pumped and dumped for a couple of weeks when my oldest was a newborn so that I could take an antibiotic for strep. I nearly lost my milk but it came back. My biggest problem was getting him on formula. It was a little rocky at first but it all worked out fine.


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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I feel like your post and signature would be a mirror image of my own. I have been dealing with leukoplakia and recurring dysplasia for about 5 years now and was recently diagnosed with cancer, t1n1. I also applied for the study your were asking about and was told I got randomized to receive cetuximab. I will start on 7/18 and will take my first radiation treatment 7/25. Did you decide to enroll in the trial, and were you randomized for it?


Recurrent dysplasia for 5 years, partial glossectomy and neck dissection 6/17 T1N1, 1 positive node.
60 gy IMRT 7/25-9/2, erbitux x11 7/18.
Recurrence April 2012, Neck Dissection, 64 gy Tomo, Cisplatin, Docetaxel and Carboplatin post adjuvant
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msmac Offline OP
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I did enroll in the trial and received my first infusion yesterday. Best of luck to you!


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
Joined: Jul 2011
Posts: 945
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Hi, msmac
Did your Dr. started you on the antibiotic minocycline yet? If you do get the rash, it has some success in helping to keep it under control. As far as topicals go, Aquaphor worked well for my husband - but if I missed even a day of applying it got worse again fast. Apply whatever topicals you end up using to the radiation field after the IMRT.

There is a correlation between a prominent rash and doing well - but still much disputation over what the rash actually means. Best of luck to you in your treatments!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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msmac Offline OP
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Thank you, Maria. I have had the rash for a few days now. I'm not taking any antibiotics yet but I have been putting on the aquaphor each day after radiation. Thanks again for the tips.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
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