H given loading dose of Erbitux on Wednesday - by Thursday or Friday it looked like he had reaction to the tape used to hold the filter in place. Tried some calidryl on those spots - nothing. Tried some Benadryl ointment thinking it may be a reaction to the tape. Now H's arm has slight rash from wrist to elbow - light pink. Nothing to panic about. Anyone have early reaction to Erbitux - I'm having a hard time believing this is the tape now. Also having "windburn" feeling across nose and cheeks. Hasn't been outside so that's not possible. Normal, abnormal? Worry, don't worry? We'll see docs late tomorrow afternoon but wondering if this is the norm. Thanks.

Hi Cheryl,

I had a reaction to the Erbitux pretty quickly too - mostly dry, irritated skin around my mouth after just a few days. The good news is, this means the stuff is working. (Or at least that's my understanding of it.) Couldn't tell you if this is 'normal' but its not unheard of.

- Margaret

Thanks Margaret - Always makes one feel better to know they aren't the only one

Hi Cheryl, I'm in a trial with several men. It was my understanding that most of the men broke out in the "acne-like" rash right away. I was feeling pretty darn smug about it not happening to me. Then it hit me at the worse possible time. The rash came after my last of the 35 radiation tx when I was severely burned. I was a real mess. I oozed for weeks. So much for Karma and being smug, eh? Anyway, this side effect is so common, I think it's rarer not to break out. Just my opinion. Best of luck to you both, Carol

Cheryl

I had the rash on my face from the first treatment and always had more after each treatment. My Oncologist also said that the people with more rash seem to have more success with the treatment. I vote for as much success as we can get.

Patty

so...off we go to the hospital today...stopped in chemo first to check on the rash as now it doesn't look like just where the tape was for filter. Now it's from wrist to elbow and hot. And today the "normal" rash started on face and neck. Seems the arm looks like cellulitis and the rest is just normal rash so H has a week of Cipro and balance of Erbitux he takes doxycycline 2 x daily. Also had first RT today...he hasn't made friends with the mask yet. H is still debating on asking for something to lessen anxiety or seeing if this just kinda grows on him. He says there's a red light of some kind on the ceiling so he looks at it and sings Highway to Hell in his head..........so much for visualization....

I got the ctscan results today for Jim. Some nodules have increased slightly, but no new masses, thank god.....But, there is a new mild left hilar lymphadenopathy with lymph notes measuring 1cm.. I suppose I should google this, but I'm so stressed right now that I don't need another thing to worry about. I didn't mention anything to him yet. No use having both of us worrying. I'll tell him before our next drs. appointment. As I said before, I always ask for a typed copy of the report before we go to the doctor as I would rather digest everything before we go . Oh, one more thing naturally. We own a beautiful secluded cabin which sits on the Allegheny River and every bit of construction was built by Jim. We find out that the pipes froze and we had water damage all over the place--and he is unable to attend to anything (so sad)...he spent most of his days there after retiring. Sorry for all the chirping, but you folks seem to be my dearest friends. Love to all. Claudia

Claudia

The scan was good news that there arent any new masses. Sorry to hear the scans werent clear and had some small increases. Very sad news about the cabin your husband built. Such a shame when something happens like that. It sounds like its a beautiful place to go for relaxation. Its been so cold this winter alot of people are dealing with frozen pipes. Hope you can get someone to fix it for you.

Im on my second round of frozen pipes myself this winter. The heating registers have frozen, at least they are plastic so they wont burst. Just an inconvenience having no heat upstairs.

Hang in there, we are here for you. Caregivers are very special people who have a very difficult job.

Cheryl,

Don't they play music in there for him. I was allowed (encouraged) to bring my own CD's and I wanted it played as loud as they could stand it. I immersed myself in loud music which really took my mind to different places and memories.

Hmmm...hadn't thought of that but will grab a cd before we leave today and ask about it. Thanks for the tip! The tooth fairy (after full extractions done) brought him a Zen so he has 4 gb of music or pics/videos he can plug into while in chemo. That has helped some and of course there's a tv but he's more into the music anyhow and can fade in and out since they give him Benadryl with the chemo.

I've been on Erbitux for some time (about 12 weeks now). My rash seems to 'move' every couple of weeks. I'll have it on the face, then my chest, then my legs, then my scalp, etc.
My doctor had me try T-GEL shampoo and it has worked remarkably well. You have to keep it moist though as the T-GEL and similar products will dry you out if you let them.
-steve

Steve I had the rash on different parts of my body also. The doctor prescribed an acne medication for it and it seemed to help. Mine never itched or anything, just got little white heads on it like a pimple. I just told myself that at least it was working.

Patty

Went to the doctor today and they are not giving him anymore Taxol as it is not working. Next Wednesday dr is starting him on Erbitux...Has Erbitux helped anybody ? We are going to the ENT dr. in Pgh on Monday. The oncologiest here said that maybe the ENT dr. may consider the Cyber Knife since the tumor is growing in his mouth. (it got larger) that's what the drs. say -- I can't look in there. Shame on me. That's one thing I can't do. I get too nervous. Does anybody know anything about this Cyber Knife procedure. Of course, the dr. may not think that he is a candidate for it. I don't know. I've been very weepy today and I cried the whole time I was in the doctors office. I've been holding up quite well considering. I think I know what triggered my depression, not only hearing that the taxol wasn't working, but when I got home yesterday from work, there was a card addressed to me. Much to my surprise, I got a sympathy card from an acquaintance who i have'nt seen in quite sometime and in the card, she puts in a long letter about Jim. Where she got this wrong news, I have no idea. Can you imagine getting a sympathy card and a beautiful letter about your spouse..while he was sitting in the chair next to me...i, of course, said nothing.......I've chirped enough. I'd appreciate any input in re to Erbitux and the Cyber Knife. --claudia

Oh Claudia, how awful getting that card! No wonder you are upset, that is terrible. Sure hope you dont now get more as the incorrect news spreads.

Sorry I dont have info on what you asked, just wanted to say how sorry I was to hear things arent good right now. Being a caregiver is such a hard job, its ok to cry. Everybody needs to cry sometimes.

Claudia I am so sorry that you were hurt further by the card from someone that I am sure meant well but was misinformed.

I just finished my Erbitux treatments Jan 2 so I can only tell you that so far so good. There are several others that have had the treatment though and I am sure someone will be able to answer your questions.

I will be thinking of you both and keep you in my prayers.

Patty

Hi Claudia, I was given Erbitux in cunjunction with my chemo and radiation. It's worked great so far for me. It's getting rave reviews. When I get my check-ups, the Drs are always telling me more good news they've heard about it working so well. The FDA seems to love it. If I'm correct, it was first approved by the FDA for colorectal cancer, then H&N and now they are trying it on others. These anti-bodies are very promising. I'm sorry but I know nothing about the cyber knife. They used a real knife on me. I'm also sorry you got that card. My friend who's dealing with terminal cancer, she gets chemo one a week and so far it's keeping her alive, got a sympathy card in the mail for her. She just laughed but I think it hurt her, also. Take care and let us know how your hubby is doing. You caregivers have the toughest job of all, please take care of yourself. Hugs, Carol

I had 8 treatments of Erbitux. I had some pretty severe rash/acne reactions which the doctor said was good news. The more reaction the more effective it is in treating the cancer they tell me. I wound up with hundreds of pimples on my face, scalp,neck and upper back. Less so on my chest. It left a good deal of scarring, something like you'd expect to see with severe acne in a teenager. I can live with it. I am alive and doing well now, 6 months out of treatment.

Thank you all for your responses. The little bit of hope will get me through the day. One more thing that is bothering me. Help me out here someone please. I had 3 opinions from 3 drs.
Two said to try Taxol and one doctor said Erbitux . I chose the Taxol treatment which didn't work. Maybe if I would have started with the Erbitux Jim would be better off today. Now, I feel guilty !!!! He started out with Cisplatin while he was going thru radiation last year, then the taxol, now to start Erbitux. He is completely bald (i tell him he looks cute) anyway, will his hair start coming back soon ? It doesn't matter, but he was asking me......I told him that I would check with my friends on the board. I want everyone to know that I read everybodys posts and my heart goes out to everybody. I'm not very computer savvy and I can't keep everybody straight, but I want everyone to know that when i read a post and don't respond , I think and prayer for everybody every single day, so please don't think I'm ignoring anybody. What a group we have here....!!!!!!!! Noone else really knows what we are going through -----Love, Clod

Please don't feel guilty! My doctor has been really wonderful to say, here are your choices - here are the pros and cons, and there is NO wrong answer. Try not to spend any time regretting the steps you've taken so far. The 'what ifs' can really eat at you if you let them.

His hair should start coming back not too long after he's off the medication which makes it fall out. It takes time - in my case even when hair started to grow back, it was verrrrryyyyy sllllloooooowwwww.
Now I just shave it all off anyhow, I got used to the look! And I guess a bonus of being back on chemo again is I don't even have to do that but about every 5 days or so!
-Steve

Claudia You have no reason to feel guilty. My surgeon told me that everyone's cancer is different and that is why everyone responds to treatments differently. Won't it be grand when they can genetically map the cancer by patient and then treat it on an individual basis? There was a very positive article in Cure about the Erbitux and I am sure there is information here in the Cancer in the News section. What I liked about it was it did not make me sick or cause me to lose more weight.

My hair also started to return shortly after I stopped the chemo and was having the Erbitux with radiation. At first it was really nappy but it got softer. Now it is coal black and gray instead of dishwater blonde, but I truly could care less. I comb it straight up for now because that is the way is seems to be growing and I can.

Patty

Claudia

How could you possible keep everybody here straight? Unfortunately there are over 6000 members of this forum. Take that into consideration along with all the doctors, nurses, medications, appointments, etc you must remember. There isnt anybody who could keep everyone straight.

Hope you are feeling less overwhelmed. I always think of the OCF forum as kinda like a private club, telling private stories. Only the members get it. Others cant understand the ins and outs of cancer unless they have lived it or been a caregiver. Its especially true with oral cancer, its a truly nasty disease. People Ive known who had other types of cancer have been cured or at least gotten well much faster than OC patients. Its a rough road, we all understand each other here. You are doing a great job as a caregiver!!!!

Patty.... I love your line about combing your hair straight up cuz you can, very positive attitude

Hi, Well, we just returned from radiation and the RO wants to add Erbitux to Richard's chemo regime. She mentioned "a couple of shots" and is going to speak to our MO about it. Even though the node is smaller, she thinks it should have shrunk more by now. She also mentioned that it could be scar tissue. I thought everything was going great and then to get this news. Can anyone please give me some feedback about what "a couple of shots" might mean? We were both taken aback a bit because we thought everything was progressing on schedule. Richard is due for his 3rd chemo on the 17th. This whole ordeal is such a roller coaster ride that I'm not going to get my hopes up about anything until we get through this treatment. Thanks ahead of time for any feedback. Geri

Geri

One thing I wish that I had done and did not with Erbitux was to get my biopsy tested for the K-ras gene mutation. Long story short: 65% have normal or "wild-type" K-ras gene but 35% have a mutation that keeps the EFGR response going despite Erbitux. The definite studies are in colon and lung cancer but even Big Pharm is advocating testing now. It is not a blood test but tests the DNA from a paraffin slide. Of course, ask your Doctor but I can't help but think that with the recurrence, maybe I had mutant K-ras as it does not affect the skin rash or side effects, just blocks the Erbitux from working. Or so I have read, please never rely upon me for medical advice but I am great on doctor questions.
Good luck

Just as a quick followup on my original question about the Erbitux rash...H has now had 4 Erbitux treatments and 12 IMRT. Rash is nowhere as bad as it was after the first loading dose. A couple of things I (as an observer) attribute it to - first the antibiotic that he takes twice a day and second, the chemo department suggested a product called aquaphor for the rash - its OTC, its also greasy. Radiation nurses told us not to use that because it's not water soluble and can't be used within 2 hours of RT and to just use the RT stuff - Biafine. Stretching my memory way back to the teenage years....why would you put anything greasy on an acne like rash? Seems it would make it worse and it was. H is doing much better now and rash is there but much, much better.

Cheryl

The literature that I have read about Erbitux indicates that the rash normally gets better after the first couple of weeks. I'm sure that the antibiotics are helping also.

The Aquaphor was a product that my radiation nurse gave me to use on my radiation burns at first. I got some relief from it until the last 3 weeks when I got no relief from anything. Are you sure that they said to put it on the rash? I agree with you that it seems like the opposite of what you would want to put on it. The Biafine is wonderful and really helped to heal my burns quickly. I was quite a bit better about 2 weeks after my treatments ended.

Glad to here that H is doing better and I hope that it is all finished soon.

Patty

I'm convinced the Biafine is a wonder drug. I swear yesterday I was telling people Mike looked like he'd sent his head to the Bahamas for a day of sunburn and left his body behind. Today he's just light pink. We walk to the car and I slather that stuff all over his face and neck - then again at bedtime. He tells me I'm a pain in the posterior but as I tell him, he knew that when he married me We've got about 6 more treatments then go to the twice a day routine for 12 days. I hope this stuff keeps working as well as it has so far....the other stuff is bad enough I hope to at least keep the outside in as good as shape as possible.

[quote=CherylR]..the other stuff is bad enough I hope to at least keep the outside in as good as shape as possible. [/quote]

too funny Cheryl. There is a couple in my church and the husband is being treated for a brain tumor. She tells me that they are going to do another MRI to see if there is anything left in his head and laughs.

The Biafine is wonderful. My insurance is refusing to pay for it so I am currently doing the appeal letter trading with them. I thought that I should attach a photo of my fried, bleeding neck to the next letter so that they can see that it was medically necessary. Jerks!!

Patty

LOL! I think you should send them a picture!! Perfect! I went a round with Mike's insurance for medical pay while he's off work - First they said they didn't get the stuff they needed and closed the claim, then I sent them every scrap of paper I could get from RT and chemo from my office (I work for an attorney), then I called. They said it would take a week for a decision to be made. I told the rep I was talking to it really shouldn't take a rocket scientist to figure out if someone has stage IV cancer they probably can't work and hung up on her. (I'm sure the call was being taped) Three days later we got a call that the claim was approved and check in the mail - these are supposed to be weekly checks and these fools had to send a month's worth in one check. I vote for you to send them the picture!

This remined me of an article I read in the newspaper, in the business section a year or two ago. It was an AP article so some of you may have seen it, also. It was in essence speaking to employers that had employees diagnosed with cancer and what they could expect to happen. They discussed the different lengths of time the employees would be off work depending on what type of cancer they had. Some barely missed any work, most were back at work within three months. It stated if the employee had head and neck cancer, not to expect them back that very, very few were able to return to work after their treatments. I don't think this is neccesarily true anymore, do you? I haven't gone back to work but then I'm old, LOL