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Erbitux Acne - Ready to Scream

Phil64's picture
Phil64
Posts: 443
Joined: Apr 2012

I just started Folfiri and Erbitux on 1/31.  Treatement 2 is scheduled for this Thursday 2/14. The Erbitux achne has set in. It is on my cheeks, nose, forehead, back, and chest. I read an older post that suggested using head and shoulders to help.  I am taking ibpropen to help with the pain. I didn't start an antibiotic yet.  I suppose there is not much more to do except grin and bare it? 

I look at myself in the mirror and it looks horible. And it hurts. This is frustrating!

 

 

sdp's picture
sdp
Posts: 146
Joined: Jan 2012

I am on my 35 th dose of weekly erbitux in the past one year since January 2012.

Am Now on erbitux solo weekly as maintenance and earlier it was with FOLFOX as neoadjuvant and adjuvant chemo.

At present I have acne all over, including face and scalp etc now with pistoles or White heads, and bleeding such that the linens and pillows have drops of blood all over. It stings especially in the scalp area.

Taking doxycycline 100 mg twice a day helps a bit. I put almond oil and then some cream atleast twice a day. On the face atleast several times a day. According to my oncologist taking doxy regularly makes it ineffective . Hence, after starting me on doxy due to bad acne several weeks ago , he then took me off it for a week. Lo and behold, just a week of no doxycycline and I have had the worst acne and White postules ever . The acne is bad on the forehead and face and really hurts. I restarted the doxycycline and I hope this helps. After seeing the pictures of my face etc with the recent acne the incologist says he may delay the next infusion. I had already delayed thhe previous infusion by two days and earlier I had taken a week off the infusion so that the side effects are reduced.

For your information I had 24 infusions of erbitux weekly with the FOLFOX , 20 infusions before my resction, nd 4 after as adjuvant chemo. I had a break of 4 months of NO chemo for the surgery ( before and after ). After that the adjuvant chemo of balance folfox and after that the oncologist has me on 12 weekly infusions of erbitux solo as a maintenance chemo. My dose is 500 mg per week. Out of the 12 maintenance infusions I have completed 11 so far and have one more to go. Till date I could tolerate it with some difficulty but this last one is the most severe. I guess the last one will have to be delayed looking at the effects at present.

Apart from doxycycline or minocycline and various creams etc , I have not come across any suggestion as to how to deal with the acne and rash. Believe me, the doxy and creams etc are not as effective as I would wish for. I hope someone finds a better solution to handle this rash and acne.

I hope you don't get as bad a rash and acne as It also depends on person to person. Sometimes there is dryness to face etc and you need to moisturise every few minutes or atleast several times in an hour to keep it manageable.

I would recommend moisturising with almond oil or clarified butter ( ghee - which you may find in a Indian grocery store). The clarified butter/ ghee may have a bit of a smell but it is most effective in case you have extreme dryness and need to moisturise several times an hour.

I hope my experiences help you in dealing with the erbitux rash.

Sdp

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Maybe I'm lucky that I have a KRAS mutation and Erbitux won't work for me.....

Tedd

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

Phil,

I remember seeing this on the H&N board as Erbitux is used for this cancer also.

One person suggested using Silver-Sulfadine Cream. Another suggested using Bag Balm.

My hubby will start his infusions on Feb. 28. Erbitux will be in the mix. One of these may help.

Phillieg is on Erbitux, I believe. Maybe he'll have some suggestions.

Luv,

Wolfen

Chelsea71
Posts: 1170
Joined: Sep 2012

Sorry that you are dealing with this problem.  Joe Metzger stated in one of his posts that the rash is a good sign.  Means the medication is doing it's job.  I think he said his onc told him this fact.  Hope it gets better soon.

 

chelsea

sdp's picture
sdp
Posts: 146
Joined: Jan 2012

I also read that quite a lot and keep believing the same.

However, recently I read somewhere that this need not be true and the severity of the acne and rash doesn't indicate that it is working.

It did shatter my belief and believe me the fact that I believed that more severe the rash the more effective erbitux was on the tumors had me tolerate the rash and acne more. Once I read that this was not necessarily true it has been an effort for me to tolerate the acne and rash.

Sdp

Phil64's picture
Phil64
Posts: 443
Joined: Apr 2012

At one time the doctors did believe that the sign of the rash meant that the erbitux was also working against the cancer.  This has since been proven to be incorrect according to my oncologist. No worries though, this is just another part of the cancer battle and I'll endure this rash in hopes that this drug is killing the cancer.

My doctor prescribed doxycycline saying this was the safest of the antibiotics.  He also prescribed trimacinalone cream to help with the itching (although it doesn't itch right now). I hope this stuff helps.  I've also been using head and shoulders to wash my face with and that also seems to help (I read the head and shoulders recommendation on another posting, supposebly something with the zinc in the shampoo that helps to reduce the rash.)

 

 

smokeyjoe
Posts: 1428
Joined: Feb 2011

Here is a clinical trial I have seen listed (in Canada)  but maybe there is something similar in your area ......

Official Title

A Phase I, Multi-Centre, Randomized, Double-Blind, Parallel, Placebo Controlled Study of the Tolerability and Systemic Absorption of Topical Menadione Lotion as a Pre-Emergent and Emergent Treatment of Epidermal-Growth-Factor-Receptor (EGFR) Inhibitor-Associated Rash.

Summary:

This is a clinical research study of an experimental new medication, Menadione Topical Lotion (Menadione). The medication Menadione is experimental and has not been approved for public use. Hana Biosciences, Inc., the company that is developing Menadione, is the sponsor of this study. EGFR inhibitors are used to treat non-small cell lung cancer (NSCLC), pancreatic cancer, colorectal cancer and head and neck cancer. One of the side effects of EFGR inhibitors is skin rash.

Trial Description

Primary Outcome Measures:
  • Evaluate skin rash status and the systemic absorption of menadione as an emergent and pre-emergent treatment for EGFR inhibitor-associated rash
Secondary Outcome Measures:
  • Evaluate the safety of menadione as an emergent and pre-emergent treatment for EGFR inhibitor-associated rash
Goldie1's picture
Goldie1
Posts: 250
Joined: Sep 2011

That was me with the Head and Shoulders recommendation.  It did help my husband but he would have flare-ups and it felt like nothing would relieve the pain and itch.  Hope the antibiotic and cream give you some relief.  And be careful out in the sun...wear a hat!

Take care,

Ellen

 

 

Phil64's picture
Phil64
Posts: 443
Joined: Apr 2012

Ellen, Thanks for sharing the “head and shoulders” recommendation.  I have been washing three times a day, with head and shoulders and I have to admit it seems like I feel better after the washing and slowly my face seems to redden and starts hurting again (time for another wash).  And it seems like the rash on my face is lessening.  Maybe the cream is working? Maybe it’s totally from the head and shoulders. Or maybe it’s simple time passing since the initial treatment?  It’s hard to know?

Anyway, tomorrow is treatment 2 of FOLFIRI and Erbitux.  I want to focus on the drug killing the cancer cells and maintain a positive attitude about taking this treatment. But I'd be lying if I didn't admit to the anxiety about another flare-up, maybe an even worse flare-up than this one.  After all the first treatment was only a 75% dosage and this treatment is going to be a 100% dosage.

One of the things I didn't think about until the rash peaked at its worst (this past Monday) is how it might affect me psychologically.  Up until now I did pretty good working through eleven FOLFOX / Oxciliplatin treatments.  I managed to go to my 12 year old son’s sporting events (even with the chemo pump fanny pack hidden under a loose hoody). And I managed to go into the office and work. Even though I was sick I didn’t LOOK sick! As the saying goes, we take things for granted until we no longer have them.

As this rash has worsened I have found myself reclusive. I’ve been hiding out in my house, working from home instead of going into the office.  And I'm not sure about going to my son's basketball tournament this weekend. I now LOOK sick.  At least it is painfully obvious something is wrong. And that will surely bring on some staring and questioning.  Even though I've been very open / public about my battle (public blog) I am really feeling very reluctant to go out in the public looking like this.

And if I do simply hide out for a few weeks well, I'm simply going to miss out on LIFE!  I won't see my son play basketball.  I won't enjoy the chit/chat with colleagues at work.

What I hate MOST about cancer is how it seems to chip away at LIFE. I couldn't play golf last season (due to operations, recovery, and chemo).  Now I am not going into my office to work and thinking about not going to my son’s basketball tournaments. And our HOPE is that this chemo will work and make me a candidate for a liver resection surgery – timing of the surgery would be right at the beginning of this years’ golf league start.

My brother jokingly told me to get a berka (an islamic face veil).  I wish I could pull it off but I don’t think it would work for me. 

Okay, I'm probably taking this TOO seriously.  Maybe I simply need to get over myself and walk around with a bigger smile (to hopefully compensate for the nasty ugly rash).

Or I may wait a bit and see if this thing clears up a little.

God Bless!

Phil

jen2012
Posts: 1198
Joined: Aug 2012

Sorry you are dealing with this Phil. Its got to be one of the worst side effects. Losing hair is something people are used to seeing with chemo. I bet you didnt know about this rash before you learned more than anyone should ever have to know about cancer.

I too hate how it robs us of life. I was just apologizing to my husbands onc and her nurse for being a pain with upcoming appts but cancer is really screwing up our schedules. We finally find a weekend to get away and they want to schedule a pet scan the day we leave. I was so frustrated and upset...but we worked it out.

If you can work from home ...great! But think about how you would feel if a co worker had this going on...you would think nothing of the fact that they were coming to work with a chemo induced rash. It will be uncomfortable for a few mins and then everyone will be used to it .. Try to drag yourself to the game. I think you will regret not going. You may get some looks but again everyone will be used to it in a few mins.

Havent had my coffee yet...my brain is fuzzy and i hope im getting across my point...dont let the damn rash ruin your fun! I hope it goes away soon!!

Goldie1's picture
Goldie1
Posts: 250
Joined: Sep 2011

My husband went to work and everywhere else while his rash was at its very worst.  I'll admit, he got some stares but he didn't let it get to him.  If it is helping you, that is all that matters, the h*ll with everyone else!  Go to your son's b-ball tournament, enjoy your time with colleagues at work, don't regret missing a single moment!

Pat's last treatment of Erbitux was 1/18/13 and the rash is slowly going away.  He started Folfiri and Avastin on 2/8/13 and is once again on the 5FU pump every other weekend.  We wish he had better results on the Erbitux but we still have high hopes for a possible liver resection or RFA therapy one day too.

Go get em Phil!

Ellen

Phil64's picture
Phil64
Posts: 443
Joined: Apr 2012

Yes, I have done a lot of thinking about this and you are both right!  I can't let cancer have the upper hand. 

I'm getting treatment 2 today, but without the erbitux.  It was not my decision - I said I can tough it out. But my doctor was concerned about possible infection and witheld the erbitux this round. 

If you want to see a picture I put one on my blog.

blog: http://pscamihorn.me

 

Thank you all for the encouragement!

And God Bless!!!

And Happy Valentine's Day to you All as well!

jen2012
Posts: 1198
Joined: Aug 2012

    GLAD you decided to not let cancer win!  Hope your son's team wins :)

Happy Valentine's Day!

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

Clydomicin lotion.. helped me with the Vectibix rash/acne.. need an rx for this..

I had on my scalp and chest and forearms..

Head and Shoulders helped control the itch ..

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Until sometime gets the Erbitux chemo it's hard to explain how acne can cause so much pain. I tried to keep lubricated. I was fortunate and stopped after about three or four treatment. It was so relieved. I feel for you and just say hang in there.  Jeff

ktlcs's picture
ktlcs
Posts: 360
Joined: Jan 2010

My husband had the rash so bad it was in his eyes.  The Onco put him on clindamycin(if I spelled it right) and it helped almost immediately, while the rash didn't disappear, his eyes cleared up, the pain and itch were greatly relieved.

 

K

herdizziness's picture
herdizziness
Posts: 3398
Joined: Apr 2010

I too am on Erbritux, and have joined you. With the rash, I've been lucky and have been corresponding with Joe Metzger, who has sent me pictures so I knew what to expect.

i'm in college full time in classes, so I just stood up and got personal and said, hey I apologize for any ugliness that you all have to face, I'm the lucky one because I don't have to look at myself, but I'm undergoing chemo in order to save my life, and this rash is an unpleasant side effect.  Fortunately they have all been understanding.  I can't hide under my pillow so I just have to face the world, glad you are joining me in that, now I don't have to feel alone.

we will get through this Phil! ;-)

Winter Marie

Phil64's picture
Phil64
Posts: 443
Joined: Apr 2012

And its wonderful to hear you are going to school. My wife is also going to school and I get to help her with homework. Lucky me :-)

Yes, we will face the world and keep on living and loving.

 

and I believe the world will be a better place as a result of facing and hearing us as well.

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