Simon has developed a very nasty sore on his tongue, and his lips are split and bleeding. His RO says the lips are due to Erbitux; not sure about the sore on the tongue. He tells me that when he wakes up in the morning mucous has thickened and causes a lot of discomfort in his very sore mouth. He has no appetite, although he is religiously forcing 3 litres of water each day down his throat or his PEG. His skin is very dry and quite sore.

It is at the beginning of week 4 of 7 weeks of radiotherapy. How did any of you get through that last 4 weeks. Are his SX comparatively severe or does this all sound very familiar to many of you.

I hope one day I can offer the sort of help and assistance I have been given on this forum to others in need of advice. Kind regards to you all.

J had two Erbitux infusions. Within the first week, he developed the rash. It caused a lot of sores on the inside of his mouth and tongue. In addition, his lips split...so did the tips of his fingers. His treatment was suspended after that. He only had two radiation visits before those treatments were stopped. So, it is unlikely that those side-effects were caused by radiation. He said that the Erbitux was so uncomfortable for him that he was already considering discontinuing it before everything was stopped.

He was particularly sensitive to Erbitux. He's still having problems with the rash on his body. However, his mouth is fine. Usually, Erbitux side-effects go away within a month of the end of treatment. Most patients don't have the problems that he had...but, then again, most patients actually have cancer.

Keep hanging in there. Your brother is just about at the half-way mark! Keep pushing forward. There is a light at the end of the tunnel!

The Erbitux rash can be pretty awful. Mine ended up cracking and oozing on my face. My RO gave me oral antibiotics and an antibiotic cream and I moisturizer like crazy. It did calm down eventually and now, at almost 4 weeks post treatment, it is almost gone.

For the mouth sores, I used a product called ulcer ease. I didn't like the lidocaine because it made me too numb and I bit my cheeks and tongue, causing more sores. Te ulcer ease made me just numb enough to quickly down some water or a shake. It wears off really quickly, though.

I hope your brothers symptoms subside soon. In the meantime, staying on top of pain meds so he stays ahead of the pain should help.

Hi there I'm sorry I ndo ot have a lot of experience with Erbitux, but he should use cream as much as possible on the cracked and burnt areas. The mouth is a little harder. Magic mouthwash should help him get his nutrition and fluid down it will help with pain. I used manuka honey, so I was blessed not to have a severe problem with blisters etc...until the last week. But it doesn't work for everyone and needs to be run by the dr. First. Pain meds should help as well. Good luck! And hugs!

Hi Sandy, I've read your story in amazement! I can't imagine the moment when you were both told there had been a mis-diagnosis. Thanks for responding. Linda

Hi Tracy,
I think he'll be relieved to know that the discomfort at this stage is a reaction to the Erbitux, rather than burning from the radiation, although I suppose that will come.

Thanks for letting me know your experiences. I'll pass this on to Simon and he may take some comfort from the fact that his side-effects are "normal".
Linda

Many thanks Cheryl. I'll pass on your luck and hugs. Keep well. Linda

Linda, I can't speak to the Erbitux but I do have firsthand knowledge of radiation damage. Mine was quite severe, my mouth and throat were full of sores and my skin quite burned around my neck as well.

For the former, my experience with viscous lidocaine was a positive one - insofar as it was about the only thing that would temporarily numb the pain enough (and it really didn't do a great job, just a passable job) for me to force down a couple of bottles of liquid nutrition. Not a ringing endorsement I know, but it might be something to ask about.

For skin burns I recommend silver sulfadiazine. I'm assuming it's called the same thing where you live but you can always check with a pharmacy. Great stuff for when the thinner topical creams don't do the job.

I hope your brother begins to feel better. He's going into the really tough time, the last weeks of radiation and then the few weeks afterward that are often just as bad, even a bit tougher unfortunately. But he will get it through it and it's wonderful that you're there to help him. I wish both of you the best, and please keep writing.

Hi there Linda - I felt like the Erbitux was nearly the death of me - severe rash, pain, redness, oozing, swelling, cracking etc. My MO didn't want to stop but after 5 infusions (and a Jay Leno chin) I told him I was done. I seriously felt like my chin might break off in one black chunk!! I think he could tell I was firm in my decision because he didn't try to change my mind like he had in the preceding weeks.
I am now left with what appears to be severe acne scars on my chin despite the fact that he promised me that there would be no long lasting effects! I felt like the Erbitux did the most harm and I'm not certain it did any good - mind you - I'm 8 months post treatment and I feel great without any significant complications! So if it worked - then God Bless Erbitux, if it didn't then it wasn't worth it - we just never know! Hang in there - if your brother feels like he reaches a limit - discuss with his doctor - there is only so much suffering that one can take in the interest of beating this damn disease!

Thanks for you post, Jennifer.

I discussed this option with my brother. He has two more infusions to go. One this Friday 14/10/11 and one 2 weeks later.

I suppose like everyone in treatment if he knew it was working and was going to do the job, then coping with the side effects would be a lot easier. He is determined to see the treatment through, although his RO said yesterday she was convinced about Erbitux.

Congratulations on going so well with your scans! Regards, Linda