| Lady1 Unregistered | Lady1 Unregistered | My husband will be getting Erbitux as we found out today he is not a candidate for Cisplatin due to neuropathy. Any one have experience they can share? He is particularly concerned about the rash- not so much about the appearance but more about any pain associated with it. Thank you. | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 |
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I had the "rash". I just thought it was much more like a case of adolescent acne. My son is 15 and we both had the same face. I suddenly remembered my days in high school. No pain but a little uncomfortable in public. It didn't last long and my doctors liked the fact that I had it. Said that this showed the Erbitux was being effective.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Lady, Please ask your MO about recent concerns of recurrence links to Erbitux as the only chemo with radiation. Has Carboplatin been dismissed as well?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | My husband had the rash bad...even up in his scalp...we called it the "benjamin button" affect, he definately looked like he was aging backwards. Once it started to heal, I helped it along with some neosporin. Good news was, in the scheme of things, it came and went pretty quickly. Also, it was our understanding that the rash was a good sign.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Lady1 Unregistered | Lady1 Unregistered | Thank you everyone for the helpful information. David: I did ask the MO at Moffitt and she they don't know recurrence rates of Cisplatin vs. Erbitux- there is no scientific data to support one way or the other. They are doing clinical trials now to determine this (and Cleveland Clinic told us the same thing- with HPV+ there is a belief that less toxic chemo and radiation may do the trick- but there is no scientific data to support this one way or the other). She told us when she started her career the same held true for Cisplatin- at that time it was not known how effective it was until it was thoroughly studied. Not sure about Carboplatin- she did not mention- and wonder if he was excluded for same reasons (pre-existing significant neuropathy). She said Erbitux is choice number 2 when Cisplatin is contraindicated for his stage and type of cancer and it is FDA approved for Head and Neck cancer. They seem to be very on top of the latest and greatest at Moffitt and in fact last week had Maura Gillison there. She said we are looking at a "curable cancer" here and it is important to consider quality of life- if his neuropathy got worse with chemo my husband would not be independent- he would need help with dressing, buttoning, etc.. and may not even be able to work and use a computer. She said you don't know until you give it if that will happen or not, but once it does, it cannot be undone. So I trust their advice and my husband is comfortable with his decision, just a little worried about the rash. | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Don't worry about the rash. The rash means the Erbitux is having the effect they want. You might want to look up Charm if you have questions about the Erbitux only route. Maybe you already have. I haven't gone back in the posts. I won't say much else because I am not a Dr., but Charm has said and experienced plenty about/with Erbitux. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Lady1 If platinum based chemotherapy like cisplatin and carboplatin would excerbate your husband's neuropathy, then Erbitux is a reasonable choice. My comments are on when the patient does have a choice between platinum and Erbitux. Here your doctors have determined there is no platinum option. The rash is indeed a very good sign. Best wishes Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, Lady1 my husband had the Erbitux and, fortunately, the rash to go along with it. He was on an antibiotic to help with the rash and avoid infection (sorry, I don't remember the name). Unlike real acne, the Erbitux rash is very drying. We used regular Eucerin first, and then their Aquaphor product as treatment progressed. Don't let it get away from you! Note that lotions should be applied AFTER radiation to the target areas, not before. If you don't already, you and he should switch to a perfume free laundry detergent. A very mild shampoo and soap is also indicated. My husband's rash started within a week of the first injection, and stop popping new spots about three weeks after the last. Best wishes to both of you! Maria
Last edited by Maria; 11-01-2012 08:48 AM.
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.
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I used 100% pure aloe (no addatives) it was easy to get and worked great more me as a moisturizer.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
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