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.

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

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

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.

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

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

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!!

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. =)

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.

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.

David,

I'm confused. The purpose of cisplatin and other platinum-based drugs is completely different than the purpose of Erbitux, and as such, I was given both, cisplatin to make the cancer cells more susceptible to radiation and the Eribtux to prevent the cells from dividing. Both mechanisms were used since I was Stage IV with effusion.

Not a chemo expert but I am repeating what my RO told me word for word and he is one of the doctors sponsoring, if that's the right word, the study using Erbitux instead of Cisplatin on only HPV+ patients. The study approving group rejected his study using a lower amount of rads on HPV+ patients but did approve this study.

Well I hope that the patients in your RO's study who just get Erbitux rather than a combo of Erbitux and cisplatin/carboplatin fare better than I did as a HPV+ patient. What's interesting about Erbitux is that it was initially approved for colo rectal cancer and then they discovered that it just doesn't work on about 35% of patients with a version of the KRAS gene which interferes with the EGFR action of Erbitux. In fact, assessment for EGFR expression and KRAS mutation is standard good medical practice for the use of cetuximab (Erbitux) in Colorectal Cancer, but not required for use in Head & Neck Cancer.
There is increasing evidence to support the use of such biomarkers in predicting tumor response to treatment, as this allows therapeutic approaches to be tailored or personalized to individual patients and results in improved outcomes and survival. Unfortunately I haven't heard of anyone exploring screening head and neck cancer patients to see if Erbitux would actually work on them. My RO mentioned not much drug company funding available on showing a major money maker doesn't work as well as they thought on over a third of patients.
Charm

The trial I am entering is RTOG 0920. No stipulations about HPV + or -, they take anyone and assess HPV status to see if it alters effectiveness.

The way I see it it is another arrow in the quiver.
Radiation damages your DNA and the idea is that cancer cells with their faster metabolism and growth get damaged more and decide to die (apoptosis). Cisplatin damages (cross links) your DNA and also screws up DNA repair, but it does so systemically. If you apply both, cisplatin enhances the effect in the radiated region, but also has some long distance effect. Erbitux targets the grow factor receptor (EGFR), which is SOME cancers is overexpressed and susceptible to the Erbitux (antibody). So the mechanism is different from cisplatin but since you also weaken the susceptible cells in the radiation field I would also expect some synergism. What would be interesting is to have statistics/data on a concurrent regimen of radiation, Erbitux (if biomarker present) AND cis or carboplatin. Perhaps this could allow you to lower dosages or rads.....

M

Well said Markus. I don't regret my Erbitux even though it geometrically increased my radiation dermatitis, but it's a question of 20/20 hindsight. After the same tumor came back, my RO concluded that it was Erbitux resistant. My frustration is that they have not developed a test for head and neck tumors similar to the KRAS gene test for colo rectal cancer so in effect an Erbitux only regime for OCF patients is a crap shoot. At the time of my treatment however, all the studies indicated it was a viable option and even the FDA said so. Too wise too late.
Charm

According to my Dr T the "study approving people" were totally against decreasing the greys even in HPV+ where, if one were going to try to reduce the effects of radiation and still have a chance to kill the cancer, that's where I would want to start.

Hey everyone. Thanks for all the information again. It is truely appreciated. I do have another question. When you had the acne was it itchy and what did you do for it? My sisters is very iitchy. She is happy she has it though the dr's told her that means it's working. Hope everyone has a great day!

I didn't and don't have HPV but sure did have Erbitux. I wish I would have had HPV LOL or at least get a name for the cause of my OC. I hate the sound of cause unknown but would like a fancy word or letters to toss around. LOL Hell, I am alive and being good old goofy Jim yet.

Jim,

Chances are very good that you acquired HPV numerous times in your life but your immune system was better at dealing with it than those of us that kept it around long enough to let it get us into trouble so you should slap your immune system on it's back and tell it "job well done munney!!" lol

I can relate to your situation. I was 57 at Dx, HPV + Herpes, Stage II, SCC BOT, no nodes, smoked 30 years ago, but not since, casual drinker, ex-Army NCO. They put me on Erbitux x 8 with concurrent IMRT x 43, no surgery, PEG Tube, Tx at Texas Oncology 12/09 - 01/10. Had PEG tube removed, abdominal abscess post PEG extraction required hospitalization and surgery to drain. Lost 114 LBS, regained 20 LBS once I got my taste back and could swallow, had severe dry mouth that was helped by meds. No sign of tumor on last CT scan. I am so grateful to have my life back.

I can relate somewhat to your situation. I was 57 at Dx, HPV + Herpes, Stage II, SCC BOT, no nodes, smoked 30 years ago, but not since, casual drinker, ex-Army NCO. They put me on Erbitux x 8 with concurrent IMRT x 43, no surgery, PEG Tube, Tx at Texas Oncology 12/09 - 01/10. The only reaction that I had to the Erbitux was acne all over my face and scalp and some rash on my chest, but no other reactions. I don't know if the Erbitux did any good, but psychologically it made me feel like I had a better chance of beating this thing and so far I am doing much better. No sign of the tumor on the last CT scan in May.

You have me laughing David. I threw my shoulder out trying to pat it on the back. I just did it using words and no pat. LOL

What happened Susan3175? is your sister still on the eribux?

I am schedule to have Cetuximab / Eribux prior to Radiation and wanted to know cancer survivors experience with it?

They stopped my sisters Erbitux after her 4th infusion. The acne like rash became really bad causing serious sores in her mouth. They gave her a week break from rads also but then continued rads till the 30 sessions.

Hi Susan,

How your sister doing now.
my mom is going to have Erbitux + Radia after surgery in NY city. how the surgery side looks with both treatments for you sister (such as neck)?

thanks,

Jennifer

Hi Jennifer,
What hospital in NYC? My sister was treated in Mt Sinai. My sister is doing ok. She is not healed yet but is slowly getting better..She stopped her Erbitux after 3 doses because her rash got really bad. We always get the side effects of meds though so i wouldnt panic.
She healed very well from surgery..What was your mom diagnosed with?

Hi Susan,
My mom has in NY prebyterian.
She has 4.5cm on her cheek and 4 of 50 of lymph nodes.
we decided to have Erbutax+ Radia instead of
the standard Cisplatin + Radia. Next monday will be her first
Erbitux, and Radiation a week after.
I saw so many creams sold on web., Jean's cream, Alra, Girl's cream, Elta, etc. Does anybody here has experience on any of those cream?

Thanks,

Jennifer

I will let you know the cream they gave my sister that really helped. I'll ask her.