Dreaded Erbitux

Hey Barb

You know what they say.  YOu can eat a whole elephant, one bite at a time.  I had a huge reaction to erbitux, not the standard acneiform rash at all.  My skin looked severely sunburned, cracking and bleeding.  Hurt like crazy.  Had to have high dose steroids, skipped doses, finally discontinued after i had just started my rads.   It took awhile to heal, but it did heal.  And I got a great response, not only to the erbitux, but to the rads as well.  Just take  it one step at a time.  That's the way to get through the rest of this.  BTW, I ended up on the steroids for about two months.  Got steroid euphoria. Couldn't sleep but about 2 hours a night.  So I posted away on this board at all hours, lol.

 

Keep the faith.  It will all work out.

 

Pat

tgcap said:

Thks for response, his is

Thks for response, his is very much like what you had. He is concerned about taking the methyprednisolone pack because of their side effects. Just seems like everyone is throwing meds around like candy. He has a problem with anxiety which can cause him not to sleep so just knowing the side effects is enough to push him over.

Did the pred help you?

What did you use on your skin. The scabs are horrible, At first look they thought staph but no fever and very dry no weeping. Like some threw acid onto his face. 

Did they hold erbitux  from your chemo combo?

how did you handle rash with simulation and rad tx?

Sorry so many questions. We sit in one of the largest cancer centers in the world and we hv yet to see some one that looks like they are taking erbitux so we can talk to them. So forgive my excitement and thks for your input. 

 

there's no such thing as too many questions

You guys will get through this.  I was put on Erbitux, Carboplatin and Taxotere 8 weeks before my radiation started.  I was already being doseage reduced by the time rads started.  My immediate preradiation PET scan showed complete resolution of the tumor, so the combination of drugs had given me a very favorable response.  I was on and off steroids during this time, but on them continuously after the first couple of weeks of rads.  I've never posted a picture here of what my face looked like, because it was really pretty gross.  And it hurt.  My erbitux was finally stopped three weeks before rads ended.  I had enough swelling that my mask  fit quite tightly toward the end, cutting a waffle pattern in my face each session.  They came close to having to rebuilt the mask, which they could have done, but I made it through without. 

 

The steroids really, really, really helped.  I could tell a remarkable reduction in swelling, redness and pain within a handful of hours of taking my first dose of steroids.  I had grade II steroid euphoria, which is manifested by incrreased energy, sleeplessness and increased apetite.  I wasn't tired so the lack of sleep  worried my wife, but not me.  Fishmanpa posts on this board too.  He had frank psychosis on steroids, which isn't very common,  but can occur. 

 

The good news for you is, the more sevvere the erbitux reaction, the better it is working on his cancer.  There are now a number of studies which show that.  He should take the steroids.  They will help him a bunch.  If problems arise, be smart, get ahold of the treatment team  ASAP.

 

Oh, on my skin I used any petroleum based gel.  The gooyer, the better.  You want to cover the offending skin with something that absolutely traps moisture.  Have you read the superthread?  There are many helpful hints there.

 

Pat

PS  Many here have been on erbitux.  Most had no problems at all.

Hi Barb, I wanted to first

Hi Barb, I wanted to first say how im sorry to hear your husband is experiencing the rashes.  I finished my rt treatments two weeks ago and developed the after burn this week.  Even though the culprit of the cause for the skin problems are differENT I wanted to share what has helped me.  When my symptoms began I was put on an antibiotic, oral steroid and  a cream for burns silver sulfadiazine.  this was last Tuesday.  On Friday my skin was showng some signs of improvement however, the itch and peeling were not.  I did see my dermatologist and she put me on a prescribed steroid ointment Synalar.  Overnight I had relief and the redness is gone now.  The itch is minimal and the peeling is almost non existant.  It helps with the redness and also a great moisturizer.  I know anything added to your regimen would need to be discussed with your husbands doctor.  It may not would even apply here in his circumstance, just wanted to share what has helped me in case it might also benefit him too.  

praying you do get some answers and he gets much needed relief.

Christie