The Erbitux rash is pretty much under control as long as he takes an antibiotic. But, he's been having a lot of problems with concentration, memory, and attitude. I could only find a little bit of information about Erbitux and brain toxicity on the internet and the OCF website. Technically, it isn't chemotherapy...so, is it Erbifog?

For those of you who have had Erbitux, have you developed chemo fog or chemo brain? If so, how long did it last?

Thanks,

Sandy

Your post was looking lonely so I thought I'd reply - not that I have one iota of advice to give - however - I think with the fallout your ex has had - anything is possible! It may not be par for the course with Erbitux, but nothing really about his reaction to it has been standard! hugs girl! It's been a long road for both of you!

Sandy

In my case, Erbitux did not cause "erbifog" (nice neologism) but perhaps that's because it also did not work on my cancer tumor.
Nor did Erbitux cause an acne rash instead it just exacerbated my radiation dermatitis and prevented new skin from healing my face.
Interesting question as to the effects of Erbitux when given to a non cancer patient. Sorry I could not be of more help but I did want to respond having taken Erbitux
Charm

My husband was fortunate - no Erbifog.

Is the rash still a problem from March?

Hi Sandy,

Si definitely suffered some sort of chemobrain. He talked of not having the mental capacity during and post rads to do much of anything. He was on Erbitux throughout, so this may well have been why, although I think the ongoing stress of diagnosis and treatment could have played a part. If it had been me, I'd have hardly been able to spell my name correctly - Erbitux or not.

The Erbitux rash was a fright, but cleared up fairly quickly after the last dose. Hope things improve.

Thanks, family, for weighing in with your thoughts! I greatly appreciate it.

J got SLAMMED HARD by the Erbitux rash. His skin and scalp were an icky, nasty mess. His mouth was full of painful sores. It started before day 5 and the acne lasted for months after his infusions were stopped. He had the large dose--2 hour infusion--the first day. He ran a high fever and had a flu-like reaction with the nausea, etc. But, he seemed fine the next day. I think he'd throw up on the way home from work and a couple of other times.

The second infusion didn't cause such a bad reaction...but, then again, it was nearly half the amount of the first one. He was in the infusion chair when I was talking to City of Hope getting word about the misdiagnosis. I called him immediately after and told him, "Don't rip out your I.V. But...."

HI Sandy

Yes, Erbitux can cause "Erbifog". It is cited regularly in the literature and mentioned in the patient brochure. The quote below is taken from
"Understanding Erbitux� (cetuximab) Therapy: what Patients and Caregivers Should Know About Head and Neck Cancer Therapy"
which is written and produced by the makers of Erbitux (quote below from page 17).

[quote]Weakness or Loss of Strength
During treatment, many people feel weak or feel as if they have lost their
physical strength. This is called asthenia. You may feel tired. You may notice
that you tire quickly from the things you are used to doing. You may have
trouble thinking or concentrating. [/quote]

I was told by a breast cancer survivor, that she went onto antidepressants which "detangled" her thoughts. She had to switch and change a couple of times before they found an antidepressant to suit her.

As a consequence, we tried it with Alex who was also suffering concentration and memory issues (as well as depression). He was still suffering approximately 12 months after chemo and chemoRAD treatment (July 2011)and the antidepressants worked really well. He is still on them and makes no noises about taking himself off which is unusual for him.

This isn't exactly the same as your husband as both my friend and Alex were suffering confusion from chemotherapy but it still might be worth a try...

The other issue you might consider is the destruction of you husband's thyroid. He had a small dose of radiation - yes? Couldn't hurt to get his TSH levels done to see if that is part of the problem?

Thank you, Karen! I appreciate the information. Good advice about the TSH levels, too.

He did have radiation--two trips to the table. Since there was no identifiable tumor (because he didn't actually have cancer) his RO was aggressively carpet bombing him with rads from tip of nose to spine down to collar bone.

It's hard to know what damage was done by rads. When he had his final MRI, his new ENT did say that there were tiny benign cysts on his thyroid gland. But, he added that those cysts are pretty common. I'm sure they have no bearing on the amount of thyroid hormones he produces or that it was damage caused by the rads. But, then...I'm not a doctor.

Hi Maria, Sorry about not answering your question.

Yes, but he just gets random break-outs. He finally went to a dermatologist who prescribed tetracycline. And, he gets refills of the topical rash medications that his MO prescribed. One of the side-effects of having the Erbitux rash is the potential for getting a skin infection. Perhaps, he caught something chronic or really stubborn to treat.

I hope things are going well with you!

Sandy
xoxox

If he is getting high strength topical corticosteroids they can cause a thinning of the skin and other issues as well. If you haven't already, be sure to inform the dermatologist of the topical meds. Stress can also impact the skin (the largest organ of the body). What other variables are in play since before Tx? Maybe he's having reactions to other creams and or lotions. Possibly the creams and/or lotions have gone bad and are causing skin reactions. It's a process of elimination.

I am unaware of anyone having this severe of a reaction to Erbitux, this long after treatment, particularly since Tx was cut short.

IMRT is typically programmed to avoid the thyroid. I had almost 70Gy of radiation and my thyroid is fine. They finally stopped giving me semiannual TSH tests.

It is odd that they would use IMRT for "carpet bombing" the "unidentifiable tumor" (aka "occult" tumor). Why wouldn't they use XRT for that since there should be an identifiable target for IMRT?