| Joined: Jun 2013 Posts: 4 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Jun 2013 Posts: 4 | hello to all, lurked around the site for a while gathering info before joining, just finished 5 weeks radiation, 2 weeks ago, survived it quite well, just some swallowing issues but kept eating throughout, lost 10 lbs. gained 5 back already. waiting for pet scan in mid sept. to see if im clear. cancer scc, bot primary, p-16, t2n2. started cetuximab in the beginning, loading dose + second dose, but the rash on my face got out of control so i had to stop the chemo. i still have a slight rash 6 weeks later and i only had two doses! so i guess my first question is, has anyone had the cetuximab rash linger this long? im getting concerned it might not go away.thanks | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Hi rdb, and congratulations on being through radiation and chemo. I don't have any experience with the cetuximab rash but you'll no doubt hear from others here who do. I hope it clears up soon from you, and rooting for an all-clear for you in September.
Lynn
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Welcome, rdb, I had Erbitux last October, and the rash started my 2nd dose, and lasted for a few weeks after completion, but not on my face as much, but lingered on top of my head, arms, legs. I felt an itch ball with the dry skin too. Did they give you Minocycline 500mg 3x a day? I took a few days, and my light rash on the face went away, which looked funny cause it was right on the tip of my nose lol. After that was gone, I stopped taking the meds, which I probably should not have. Seems to be a reduction of treatment theses days with HPV positive in the oropharynx. I had 70Gy my first time. Good luck with your PET scan.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jun 2013 Posts: 4 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Jun 2013 Posts: 4 | yup got the minocycline plus some mixed cream, it seemed to tame it down a bit but not enough to continue with the cetuximab, they explained that the bad rash can mean the drug is working so hopefully i benefited from the loading dose and the second dose.i came back after the weekend and the rash was so bad it freaked out a few of the nurses at the cancer agency, the docs were worried it might jeopardize the radiation treatment which was more important than the chemo. so i think the right call was made.just hope it will resolve with time, but if i end up cancer free in sept. heck i will gladly keep the rash!!!! | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I had Taxotere with the Erbitux, but the Taxotere was cut out by the 3rd week due to worsening my neuropathy, which I already had. They do that for best reasons not to jeopardize the radiation or other chemo. The rash could have gotten infectious, septic if not stopped. Anyway, the radiation completion is more important, the real curative. The rash will go away.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | From what I have learned about the Erbitux, the worse the rash the better it works. Ask your doc for a cream to help you get rid of the rash. Ive heard it can be quite uncomfortable. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there... I've heard the same about the rash. How many did you miss?
welcome!!! ;o)
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
| | | | Joined: Jun 2013 Posts: 4 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Jun 2013 Posts: 4 | thanks for the welcome, i guess i missed 4 doses, i also researched the side effects further and found out if you are male (which i am) under 70 years old (which i am, im 53) and fair skinned (which i am) the rash can be worse for these people, so who knows? also got told for my condition the added chemo would only benefit 1 in 10 people,not really game changing odds, but i still went for it as i was trying to do everything i could to up the odds in my favor... | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | My husband's continued for a few weeks after the treatment ended. Sorry it is being difficult for you, but it certainly sounds like it is doing something. Bests wishes on the itches! Maria
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 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | I want to add my welcome and good luck in sept.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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