Update.. Bad Trip

Kritter
Kritter Member Posts: 147
in Head and Neck Cancer #1

Talked with ONC Doc yesterday, he was speechless when he first walked into the room, and sat and looked at me for a few minutes. Said I am not the only most complicated case he has dealt with, but also the erbitux rash, one of the worst he has seen. 

He was grumpy about my weight, but I told him my * jeans* were happy, and he smiled and said he is so happy to see I haven't lost my sense of humor. I asked for a week off and he told me NO, he examined my face, scoped my nose and said we are winning!. So not to stop and just take more pain meds if I need to. 12 more Rads to go after today. 

Trying a light gauze under the mask, so it won't peel the skin off my face, where it is oozing some. Did help!. Last night I took a double dose of pain meds and cleaned all the ( gunk) off my face, the aquaphor, the radiation cream, etc. To get it clear so skin can breathe. I am not using any of that anymore, just builds up and holds in heat in my opinion. Face dry, but misting it often with distilled water only. Tonight it feels cooler. Got some lubricating drops for eyes to see if that helps keep them open and not dry and burning so much. 

Best news he gave me is if I keep fighting, I may not have to have such drastic re-construction surgery. Only a mild clean up inside with minimal repair. So that gave me reason to fight harder. Not sure about last two chemo sessions, he will talk with Chemo Doc and let me know their decision. And give me a few weeks to heal before doing scans to see just how much of tumor was destroyed. Then monitored for at least the next five years if not more. 

Thank you all for the positive comments and faith in me that I can do this. And hope each and everyone one of you have a Blessed Holiday season. Prayers and Hugs.. Kritter

Comments

  • wmc
    wmc Member Posts: 1,804
    #2
    Bad trip.....But very good news!

    Again sorry for the bad trip and what a rough time, but, the news from the ONC Dr was really great. You're winning!!! Also able to still laugh, that does really help. Just take the pain meds you need and the rest will fall into place. Just one day at a time, and only today really matters. May each of your tomorrows be better than today. Hang in there.

    Bill

  • katenorwood
    katenorwood Member Posts: 1,912
    #3
    wonderful update

    I'm glad to see the words "we are winning".  Please keep up the wonderful attitude, and humor.  You are amazing, and a light for other's.  Continued prayers, and positives sent your direction !  Hugs,  Katie 

  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Hi Kritter

     

    Bad trips do turn out good sometimes and glad to hear you are finial getting some good news. It is good when you can laugh and joke no matter what bad or good comes your way, just something that helps the healing process in our bodies.

     

    Keeping you in prayer

    Tim Hondo

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    Glad to hear that fighting spirit

    is getting a second breath!  I think there comes a time in nearly everybody's treatment that we have to put our heads down and push through it, sometimes one day at a time, but also one hour at a time....knowing the end of the tunnel is just around the next corner.  The best part about this forum is that if one idea doesn't work, people have tried other ideas that do work.  Aquafor is like vasoline, so yeah....damn little in the way of air gets to your skin.  Seems most of us had to tweek things to fit our needs.  I'm wondering if you added some pure Aloe to the distilled water, shake it up and spray, if that might get you a little moisture that will stay on your skin, yet let it breathe. 

    You're almost done.....one foot in front of the other....every step brings you closer to the end of treatment. 

    p

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    I had looked at the picture you posted

    of your face a few days back, and thought to myself, "well, that looks about how I looked on erbitux", ot reallizing you were on erbitux.  Not all of us get the typical acneiform rash on that drug.  Some of us get this more allergic type reaction.  Mine was worse than this, not that I wish that on you.    I survived by going on steroids, like dexamethasone 4mg bid, which took a lot of the swelling out.  My skin fissured and actually bled quite a bit.  They finally stopped my erbitux two doses ahead of schedule.  The skin healed just fine, but it sure was a difficult part of my treatment.

     

    Pat

  • josh r.
    josh r. Member Posts: 264 Member
    #7
    We're with you

    Hi Kritter,

    Yes you can do this and please be aware that you have so many pulling for you. Hang on to the good stuff and fight through the rest knowing that you teamates are hanging with you. God Bless, josh r.

  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
    When I read you were going to

    When I read you were going to take a week off I thought to myself, probably not. They don't usually like to stop for even a day. Jim missed two days because he had an infection in his jaw that swelled it so bad they couldn't get the mask on. The radiologist was not happy. I don't know if that made a difference in the outcome. I know you can do this, Keep trudging on. I am rooting and praying for you.

    Debbie

  • MrsBD
    MrsBD Member Posts: 617 Member
    #9
    Erbitux rash

    Did your onc. tell you the rash is a sign that the Erbitux is working? My team actually cheered when they saw me after the 3rd session! And now you have confirmation from the scope. That's great! I tried Aquaphor, silver gel, and everything they gave me. What worked best and helped dry up the oozing was something I saw online. I put regular oatmeal in warm water, mashed it around a bit,  and used a washcloth to pat just the liquid on my face and head. What was nice is it didn't leave greasy goo anywhere, especially in my hair. I did it several times a day or when it really itched. Hang in there. The pimples clear up quickly when the treatment is over.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #10
    Kritter, you are so close to

    Kritter, you are so close to being all done!  praying for all to finish up well and for no more side affects.  Here's to a Happy and Healthier New Year.

    God bless you,

    dj

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