Looks like I'm going to have to stop Therapy.---UPDATE

jcortney
jcortney Member Posts: 503
edited September 2014 in Head and Neck Cancer #1

The Eributux is just kicking my butt.  I'm pretty sure that I'd now be rated as class 3 on the 1-4 rash scale.  No matter what we try (lotions, coconut oil-actually works better than any lotion, antibiotics and even prednisone) the spread continues and the itching is driving me to distraction.  We actually did't infuse this last week but that has not changed my skin condition at all, if anything I'm still spreading.

Add to this a couple of weird systems that the doc's can't figure out.  First, I'm always cold.  In an 80 degree room, I'm wearing two long sleeve shirts and jeans.  Second, I have an underlying infection somewhere that, usually late in the afternoon, I develop a low grade fever (99-99.6) that comes and goes for the rest of the night.

Anyway, everything I read seems to suggest that I need a four week break to get my skin back under control.  If the rash returns to the same level after we restart, well let's just say I might be in trouble.

Hope you folks are all well and have a safe holiday weekend.

Joe

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Comments

  • josh r.
    josh r. Member Posts: 264 Member
    change in plan

    Hi Joe,

     I am sorry for the difficulties that you are presently facing and pray that the new approach helps and relieves you of the pain and discomfort you are experiencing. josh r.

  • donfoo
    donfoo Member Posts: 1,771 Member
    one day at a time..

    So sorty to hear Joe about the reaction to Erbitux. The rash is common but seems you are more senstive than usual. If the rash and itching is anything like a severe case of poison oak then I can surely feel your pain.

    Many of us experienced always feeling cold. I sure did for some time, maybe it was just the weight loss that shed the permament coat. Having gained back half of what I lost seems to have cured the chills. LOL

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Joe, so sorry to hear this. 

    Joe, so sorry to hear this.  crossing my fingers that the rash goes away and the itching stops. 

    sending positive thots and good mojo your way, friend.

    dj

  • jcortney
    jcortney Member Posts: 503
    josh r. said:

    change in plan

    Hi Joe,

     I am sorry for the difficulties that you are presently facing and pray that the new approach helps and relieves you of the pain and discomfort you are experiencing. josh r.

    Second Time Thru

    I didn't have nearly this reaction during the first chemo.  Initially, everyone was really happy I was reacting, as it's supposed to be an indicator of how well it's working.  

    And Don, this make poison Ivy (never had oak or sumach) look like a bug bite.

    I guess we'll see what the next few weeks bring.

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    look

    Joe,

    Sorry about the severe Erbitux reaction.  Tim6003 was the worst Erbitux reaction I have ever seen, it looked like third degree burns (Tim’s expression page).  I hope the break is just what you need, with good results ahead.

    I wish I were an expert diagnostician, I would jump the next flight to help.

    H&N brothers,

    Matt

  • Jeff2159
    Jeff2159 Member Posts: 108
    That Sucks Joe

    I've been doing  erbitux weekly since the beginning of Feb and yes I have the acne/ rash too. Ruined many a pillow, pillow case and sheets due to bleeding of some of the sores. Stopped wearing light colored shirts too as they easily get ruined from the blood spots. The rash attacks hairy areas and yes I'm hairy but not like I use to be as the radiation treatment wiped out most facial hair at my chin, neck and upper chest. My acne pops up everywhere at chest, stomach,shoulders, back, ears, face and top of head. Seems I get attacked at different areas every 3-4 days and there is no pattern. My checks may have whiteheads for a few days and then it may go to my head and then maybe to shoulders then maybe to forehead and then to ears etc. Anyhow it is livable for me and I have heard its working if the rash is present--- who knows. hard to say if I get tired from Erbitux. As for the chills, I have had that but it is due to weight loss and thyroid You might have your thyroid checked

    good luck

    Jeff

  • Kritter
    Kritter Member Posts: 147
    Hi Joe

    I'm new to the board and Doctor told me about the rash. If it is similar to poison ivy.. an old trick I use from my family is oatmeal.. what I do is get old fashioned oats, wrap them in a piece of panty hose and get it dripping wet and apply. It coats the itch and calms it some. Not sure if that is possible for that rash, but going to ask my Doctor if I start to get it when my treatment starts if it will work. I am all for natural when can be used. 

    I do hope y'all can figure it out so you can resume treatments. Really hope things improve for you. 

    Kritter

  • jcortney
    jcortney Member Posts: 503
    Kritter said:

    Hi Joe

    I'm new to the board and Doctor told me about the rash. If it is similar to poison ivy.. an old trick I use from my family is oatmeal.. what I do is get old fashioned oats, wrap them in a piece of panty hose and get it dripping wet and apply. It coats the itch and calms it some. Not sure if that is possible for that rash, but going to ask my Doctor if I start to get it when my treatment starts if it will work. I am all for natural when can be used. 

    I do hope y'all can figure it out so you can resume treatments. Really hope things improve for you. 

    Kritter

    Hi Kritter

    Sorry you have to be here, but this is the place to get the most help on the planet.

    NO, you cannot treat Eributux rash like poison ivy, or acne or any other common skin conditions.  Anti-bacterial or harsh soaps, remedies  for acne, or a host of other things will only make the rash so much worse.  The only real treatment is to keep the skin well moisturized, stay out of the sun and then drugs if it gets more severe.  I most cases it's a nuisance at worst (my first time through) and the lotions will take care of it.

    Good luck with your treatment and be sure to ask lots of questions.  There are NO STUPID QUESTIONS.

    Joe

  • hwt
    hwt Member Posts: 2,328 Member
    jcortney said:

    Hi Kritter

    Sorry you have to be here, but this is the place to get the most help on the planet.

    NO, you cannot treat Eributux rash like poison ivy, or acne or any other common skin conditions.  Anti-bacterial or harsh soaps, remedies  for acne, or a host of other things will only make the rash so much worse.  The only real treatment is to keep the skin well moisturized, stay out of the sun and then drugs if it gets more severe.  I most cases it's a nuisance at worst (my first time through) and the lotions will take care of it.

    Good luck with your treatment and be sure to ask lots of questions.  There are NO STUPID QUESTIONS.

    Joe

    Joe

    So sorry to hear that you are experiencing such a bad rash. Mine was mild.  I was also told the worse the rash the better the result. Hopefully the break in tx will help. During my tx, the benedryl bag would make me shiver violently 5-10 minutes and always required five blankets out of the warmer to calm me down.  To this day, I get cold when I don't expect it. I attribute it to weight loss. 

    Continued prayers

    Candi

  • Kritter
    Kritter Member Posts: 147
    jcortney said:

    Hi Kritter

    Sorry you have to be here, but this is the place to get the most help on the planet.

    NO, you cannot treat Eributux rash like poison ivy, or acne or any other common skin conditions.  Anti-bacterial or harsh soaps, remedies  for acne, or a host of other things will only make the rash so much worse.  The only real treatment is to keep the skin well moisturized, stay out of the sun and then drugs if it gets more severe.  I most cases it's a nuisance at worst (my first time through) and the lotions will take care of it.

    Good luck with your treatment and be sure to ask lots of questions.  There are NO STUPID QUESTIONS.

    Joe

    Hi Joe

    Thanks for letting me know about the rash and treatment they recommend. I hope the lotions and creams work for me as I am allergic to quite a few meds I have found out. In fact Benedryl gives me the hives and makes my itches worse. So that's out. 

    Hoping things get better for you soon.

    Kritter

  • jcortney
    jcortney Member Posts: 503
    Kritter said:

    Hi Joe

    Thanks for letting me know about the rash and treatment they recommend. I hope the lotions and creams work for me as I am allergic to quite a few meds I have found out. In fact Benedryl gives me the hives and makes my itches worse. So that's out. 

    Hoping things get better for you soon.

    Kritter

    Predisone worked well for me

    Predisone worked well for me but it's a drug you can't keep taking, beside playing havoc on my blood sugar.  But, for short term, itch and rash was under control.

    Good luck on your treatment Kritter.

    Joe

  • jim and i
    jim and i Member Posts: 1,788 Member
    jcortney said:

    Predisone worked well for me

    Predisone worked well for me but it's a drug you can't keep taking, beside playing havoc on my blood sugar.  But, for short term, itch and rash was under control.

    Good luck on your treatment Kritter.

    Joe

    So sorry to hear about the

    So sorry to hear about the escess rash. I pray the break in treatment works and you are able to continue with no more problems.

    Blessings

    Debbie

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Joe

    I had some of the same problems except the rash. I can’t stand cold, as you said even 80 degree with a wind blowing I was cold. At night I developed a low grade fever and sometimes woke up soaking wet and cold, doctors never did figure it out just called it radiation side effects. It did all go away in time only thing I was not on any treatment at the time. As you said take a break it will all be there when you are ready to go back on it again. For now will just keep you in prayer

     

    Tim Hondo         

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Hey Joe

    There are a few of us in the same boat.  I took erbitux with my treatments two years ago, but after doseage reductions, a number of treatment postponements, and high dose steroids, we finally gave up.  It was just tearing my face up.   I didn't get the typical acneiform rash.  Mine looked like a perpetual sunburn with fissuring and bleeding.  My face was so swollen  I could barely be recognized.  So when I had my final relapse, they decided to try erbitux again, at a three week interval.  I had the same reaction.  Now I am officially listed as "allergic" and will not be put back on this drug.  Not a good thing for me, because so many of the protocals for advanced SCC palliative treatment use erbitux.   But I just can't take the drug.

     

    best to you

     

    pat

  • Goyca
    Goyca Member Posts: 220
    so sorry about those side

    so sorry about those side effects. Especially the rash, I know its annoying. I pray u will get better soon.

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    natural antiagenics

    Awhile ago there was a post somewhere, maybe here about eating foods that behave much like Erbitux. It was pretty interesting but certainly not in the mainstream standard of care publications. For those who have hit the wall with Erbitux, looking at this alternative might be worthwhile. 

    From Ted Talks

    William Li presents a new way to think about treating cancer and other diseases: anti-angiogenesis, preventing the growth of blood vessels that feed a tumor. The crucial first (and best) step: Eating cancer-fighting foods that cut off the supply lines and beat cancer at its own game.

    anti-angiogenesis talk

    anti-angiogenetic drugs

  • jcortney
    jcortney Member Posts: 503
    donfoo said:

    natural antiagenics

    Awhile ago there was a post somewhere, maybe here about eating foods that behave much like Erbitux. It was pretty interesting but certainly not in the mainstream standard of care publications. For those who have hit the wall with Erbitux, looking at this alternative might be worthwhile. 

    From Ted Talks

    William Li presents a new way to think about treating cancer and other diseases: anti-angiogenesis, preventing the growth of blood vessels that feed a tumor. The crucial first (and best) step: Eating cancer-fighting foods that cut off the supply lines and beat cancer at its own game.

    anti-angiogenesis talk

    anti-angiogenetic drugs

    Don, Thanks

    I saw this some months ago and my wife has been feeding me, in food and smoothies the ingredients ever since; whether I want them or not :)

  • jcortney
    jcortney Member Posts: 503
    i'm officially Stopped

    Turns out that what I thought was Eributux rash on my lower leg was Statis Dermatitis.  Not a good thing.  Anyway, we're workig on that but the Dermatologist that my medonc sent me to said no more till the Eributux rash and this dermatitis improves.  The bad news is the Dermatitis never really is completely gone... think all the old people you see wearing support hose.

     

    On another note, I've also learned the real danger of stopping treatment mid-course.  You feel so damn good so fast, you don't want to go back; but you know you have to.

    Joe

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    jcortney said:

    i'm officially Stopped

    Turns out that what I thought was Eributux rash on my lower leg was Statis Dermatitis.  Not a good thing.  Anyway, we're workig on that but the Dermatologist that my medonc sent me to said no more till the Eributux rash and this dermatitis improves.  The bad news is the Dermatitis never really is completely gone... think all the old people you see wearing support hose.

     

    On another note, I've also learned the real danger of stopping treatment mid-course.  You feel so damn good so fast, you don't want to go back; but you know you have to.

    Joe

    stopped

    Joe,

    So damn good is how I feel about you.

    Matt

  • jcortney
    jcortney Member Posts: 503
    jcortney said:

    i'm officially Stopped

    Turns out that what I thought was Eributux rash on my lower leg was Statis Dermatitis.  Not a good thing.  Anyway, we're workig on that but the Dermatologist that my medonc sent me to said no more till the Eributux rash and this dermatitis improves.  The bad news is the Dermatitis never really is completely gone... think all the old people you see wearing support hose.

     

    On another note, I've also learned the real danger of stopping treatment mid-course.  You feel so damn good so fast, you don't want to go back; but you know you have to.

    Joe

    Update of Update

    Dermatologist just gave me the same advice we give to newbies here all the time - "STOP READING THE INTERNET".  My dermatitis is not permanent, it is improving nicely.

    We fall into our own traps.

    J.