| Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2010 Posts: 201 | Hello everyone!! Hope you are enjoying your day. My sister starts radiation tomorrow. Yay!! The dr's want her to do radiation and Erbitux. She isn't sure weather she do it or not. She has read the possible side effect of cardiac arrest and is wondering if the extra 3% non reacurrance rate is worth it. The dr's want to be aggressive because of her age but we were thinking if this was to aggressive. Any info from anyone would be helpful. She is meeting with the dr's with her questions about it also.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads 1/10/2011 Clear PET!!!
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Hi Susan, I had Erbitux as part of my treatment and the only side effect I really suffered from it was the 'acne-like rash' that is very common. I think all chemotherapy drugs have some pretty dire side effects, but for me, hitting Cancer with everything I can throw at it is absolutely worth the risk, even if its only a 3% difference. Oh, and the acne was eventually controlled with oral antibiotics. - Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Susan I had just been told by a cardiologist that my calcium coronary scan showed major blockage but my echo-cardiogram stress test showed full function and I had zero heart problems or complications from Erbitux. The worst side effect for me was that it intensified my radiation dermatitis so the "rash" ended up just having all skin peel off. I would take Erbitux all over again if I had the choice but I would take it in combination with carboplatin if I had a "do-over". My opinion is that your sister should definitely do some chemo along with the Radiation even she passes on Erbitux. 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: 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 | I really hate statistics! If that 3% recurrance does happen.....then the Erbitux alone will not be enough to help her. Oral cancer is cured only by radiation (with or without chemo) or surgery. Chemo alone will not cure it. Most patients have been given their lifetime max radiation and cant have it again. Only a handful of members (like Charm) have been able to do radiation twice. 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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | I am quite sensitive to Erbitux and and ended up in the ER after just getting a portion of the first infusion. Turned red, fell+ blacked out and foamed at the mouth. It felt like I had a ton of bricks on my chest. I did not have a prior heart condition whatsoever. This was a severe immune reaction, which is fortunately quite rare. If they do the first infusion slowly and watch the patient carefully, then they can catch such a rare reaction before it becomes a problem. Having said this I fully agree with the above posters that it is a good idea to combine radiation with some form of chemo, be that an antibody, like Erbitux or the platinum containing older chemo. M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | For what it's worth, my RO warned me that if I had spent any major time outside hiking in Southern states, including Georgia, Tennesse, North Carolina and Arkansas and had ever been bitten by a seed tick, then I would have had the same reaction as Markus. According to him, the bite from seed ticks causes your body to generate antibodies that then react violently with Erbitux. These "seed ticks" are very small and only found in the South not the Northeast. You can google Eribitux and seed ticks to see the newspaper stories which all ran in 2008 and then I guess it wasn't news anymore. Apparently they can test you for these IgE antibodies, although my RO never did. 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: Jun 2010 Posts: 5 Member | Member Joined: Jun 2010 Posts: 5 | I'm basically doing the same thing. Some trial with the IMRT and cetuximab. I'll resist the urge to get on a large soapbox, just a small one. Drug companies are required to put all "reactions" in the inserts, even if they are unlikely to be related to the drug and may be related to the patient's underlying condition. If you ask me (I realize nobody did), this is not really related to the drug. The rash and the uncommon, unpredictable anaphylactic reaction are the main side effects, and compared to other chemo drugs, make it one of the easier drugs to get. I probably will get a loading dose in a week or so and start radiation the week after. Please keep us posted on your sister's progress. Sounds like she's doing great!!
34 yo male Partial left glossectomy and mod rad neck 7/19/10 Path report T2N0M0, depth >5mm, +PNI, +LVI, margins - (>5mm)
| | | | Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2010 Posts: 201 | Thanks so much for your response. My sister had her first Erbitux infusion today. After about an hour conversation with her medical oncologist and radiation oncologist. She was extremly nervous through the whole process but took to the medicine very well. Charm- thanks so much for the info. It is very good for us to know since we do have a lot of family we visit down south. You would never think of that. Tsherid- so glad to hear you are getting treatment so fast. My sister had obsticles to conquer with insurance. That's why it took so long inbetween surgery and radiation. Thanks so much for the well wishes and please keep me updated on your progress also. My sister is trying to do this without a PEG. So fingers crossed. Again everyone thanks so much for the imput and experiences. I was so glad to hear from people who have taken this drug. =)
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads 1/10/2011 Clear PET!!!
| | | | 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 | Even though Erbitux is FDA approved it is not the recommended chemo for our cancer. Erbitux is used on patients that are not suitable for Cisplatin, like hearing impaired or kidney damaged patients, etc. There is a study that will be/is using Erbitux along with IMRT on HPV+ patients only, not HPV- patients.
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: Apr 2010 Posts: 201 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2010 Posts: 201 | Thanks for the info David. It seems she may of had a reaction to the medicine last night and rushed to the ER. She developed a severe headache. She will be going to her dr's later on today and I would assume a decision to continue or not would be made.
Last edited by Susan3175; 08-17-2010 06:41 AM.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads 1/10/2011 Clear PET!!!
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