J is still having lots of problems with his skin since receiving Erbitux. He had two infusions: one at the end of February and one at the beginning of March and then treatment was suspended. Any ideas about how long it will take to be out of his system or for the side-effects to go away?

Thanks,

Sandy

Has he tried benadryl - someone said they are taking that to offset the Erbitux rash. It's a long time to still have issues - I would talk to an MO about it... Usually chemo has dissipated by the 4 week mark- as far as I know. It could be he's had trouble clearing it - rt the organ it passes through (liver/kidney?) sorry not terribly fluent in Erbitux. Hope you guys get some answers soon!! Hugs!!

Please do talk to your MO - the Erbitux rash should fully clear within a few weeks. Mine did - a chemo-mate of mine had trouble similar sounding to J's - she was referred to a dermatologist.

Something is wrong here. I had the full eight doses of Erbitux and even though it prevented my skin from healing and gave me classic second degree burn requiring Vigilon dressing, once I stopped, the skin grew back in less than a month. My CCC MO said I had the worst side effects he had ever seen or read about but I recovered regular skin by the end of the second month.
Unfortunately IMO the Erbitux was much better at blocking the growth factor of my facial skin than it was on starving the tumor which is why I switched to carboplatin the next time around. My sympathy to J, the side effects are nasty and painful.
Charm

Thank you, everyone, for weighing in. He is still breaking out and is still having problems with his skin splitting.

@ Cheryl: He hasn't tried Benadryl. That would be a good idea. He did try it for the amoxicillin rash he got when he had the throat infection (it was a newly acquired allergy.) It didn't do too much. It probably needed to go away on its own. He's been meaning to call his old MO (doesn't have a new one, just an ENT). The MO is a good man, I'm sure he'd help and understand why J's being seen by new doctors. Hugs back at ya!

@ Jennifer: I think seeing a dermatologist would be a good idea. Starting with the MO should help give him some direction in the meantime.

@ Charm: I think your opinion nailed it about Erbitux slowing your skin's recovery. I was thinking the same thing--it's a EGFR inhibitor. So, with the 'E' standing for epidermal, it completely makes sense. I'm glad that you recovered quickly. Second degree burns?!? Yikes! It sure would be amazing if there was any way to tell if someone would get the desired result before they went through the 8 weeks of Erbitorture. HPV positive status is kind of the whole target. But, there's got to be a bull's eye that makes targeted therapy a little more accurate. I'm sorry you went through all that for very little or no benefit. It really is awful.

For J, it really was a nasty and painful treatment that he says he won't repeat if/when he has a DX for SCC. We were thinking that the side effects would not start for a couple of weeks. He broke out in the rash within the first week. The worst part was that it was all over his tongue and other places in his mouth. So, again, it was painful to eat and drink. That part has gone away.

Thank you for the input. I'm glad this isn't the normal pattern. I'd feel really sorry for anyone who has Erbitux. I'm hoping that there's something we can do so he can get rid of it. He only had two radiation treatments, so I'm sure it isn't caused by radiation. We're hoping that those two treatments didn't do damage of which we aren't aware.

Wishing all of you the very best of life and survivorship,

Sandy

Sandy

Thanks for the kind words of sympathy. I really like your turn of the phrase: "Erbitorture". My MO is exploring with some others a study on whether Erbitux for head and neck cancer patients needs the same type of genetic screening that is now mandatory before colon cancer since Erbitux simply does not work at all for mutated KRAS gene patients. Originally, researchers thought that by testing for EGFR, they could predict which patients would benefit from the targeted drug. That didn't pan out in studies of colon cancer. Instead, they found that KRAS -- which regulates other proteins downstream in the EGFR signaling pathway -- is a much better predictor of outcome. Some doctors now believe that there is a similar mechanism at work for head and neck cancer patients. My MO thinks I may be one of them and I was selected for the Rare Cancer Genetics registry and haven given a DNA sample to them. But for the majority of patients for whom Erbitux does work, let's not scare them. If your genetics are right, it is really a miracle drug. The platinum based poison chemo is really hard also. The Carboplatin infusions every week did a number on me the second time around but at least my face did not fall off so it seemed better.
I think a Dermatologist may be best for J at this point.
Keep the Faith
Charm.

hello, my father developed a nasty rash too on the back of his neck and it ended up being shingles.. eek.. just something to think about... best of luck!
nicki

@ Charm: Thank you for the information about new studies going on regarding targeted therapies! I asked J's MO if he could be screened to see if Erbitux would work for him before he went through 8 weeks of it. But, his MO said screening eliminated too many patients on whom it would end up working. Better to use a shotgun approach until the more focused methods are available, I suppose. Please keep us posted on new developments with the study. I'm fascinated by these things. And, it gives hope.

I'm glad there are doctors out there who are forward-thinking and interested in innovation and practical applications. Bless you and your DNA for being part of that study. It could make a gigantic difference in the treatment of oral cancer. Wow!

You are right about Erbitux. I was a little too flippant about it. It really is an effective treatment if it jibes with a patient's genetic makeup. J's reaction is uncharacteristic of what a patient can confidently expect. It's a shame he had such a bad experience. Since it's so hard to tell if those little cells have already gone to distant places, it wouldn't give J a better chance of survival. But, his MO said that it could help prevent a recurrence in the same area. That is a huge benefit! I'm hoping he will reconsider it if he ever needs treatment.

Thanks, again!

@ Nicki: I hadn't thought of shingles! I guess a trip to the derm will tell us more if the MO can't figure it out. Thank you for your input!


Sandy

Manuka honey has very positive stories about skin healing

Thanks! He went to a derm who prescribed tetracycline for rosacea...he felt like the doctor didn't even listen to him.
He's trying the honey.

I think it flares up after he's been in the sun. It's been since March. We're wondering if the sun sensitivity is permanent.