hi guys

[Joy]

I hope you are all hanging in there okay. I, myself am frustrated as my Tykerb rash seems to be worsening. I've been on it since May or June and thought it would have stabilized, but my face is so broken out with what even looks like cystic acne and it is so depressing. I'm wonderin what you guys think? Should I look into clindamycin? Put a bag over my head and never leave the house?

I hope it means that it is working really well on the cancer and have scans on the 21st to see.

For those of you on Tykerb and avastin what has been your results? That was a conversation we had for the future.

I'm just feeling low again because, like all of us I want a normal life and feel like so many pieces of that will never be available. SO I'm feeling sorry for myself.

Any tips from anyone. You are all so wise.

Thank you!!!

[Joannie]

Joy:
I too am experiencing the Tykerb acne woes. I'm on the teach trial since middle of May. I look like a 14 year old with whiteheads all over my face and neck! It has been frustrating, but I'm willing to tolerate it. I will tell you I had to go on Prednisone/antibiotics last week for some health issues and my face has really cleared up. I am assuming it's the Prednisone?! It's the best my face has looked in 2 1/2 months. It's probably only short lived, but I'll take it!

Is there anything that can be prescribed to at least calm the acne down? I will address the next time I'm in with my dr.
Joannie

[Joe]

Funny You Should Ask !!

We met Dr. Martin Murphy Jr. , publisher of the Oncologist and a member of our Board of Directors last weekend at the ASCO breast cancer Symposium. He gave us the following information to pass along:

http://theoncologist.alphamedpress.org/misc/EGFR_Splash.shtml

Regards
Joe

[Lolly]

Joy, I have Rosacea and Tykerb really seemed to aggravate it. I see a dermatologist twice a year, and he had me step up my program to keep things under control. It did seem to help, but my face didn't really clear up again until I stopped Tykerb. However, it's worth seeing a dermatologist and take a print out of the information Joe provided.

In the meantime, try a sunblock. I use Neutrogena Sensitive Skin Sunblock Lotion. It has titanium dioxide in it, which actually BLOCKS the sun. Leaves a slightly whitish film on the skin, but I would then cover it with makeup. Worked great as the sun really seemed to aggravate the rash, and it's something I have to use to keep the rosacea under control anyway, 'cause it is also aggravated by the sun.

Hope this helps, I know that rash is no fun.

<3 Lolly

<3 Lolly

[hutchibk]

that is great info, Joe. I sent the link to my onc for him to have the info too.

[hutchibk]

Joy - the link that Joe posted mentions clindamycin as a treatment. I say go for it!

[hutchibk]

Here's some of the info from a patient pamphlet on Joe's link:


If a rash appears before your next appointment,
call your doctor or nurse immediately.

Your doctor may prescribe topical or oral
medicines, which are usually effective, so start
using them immediately.

Do not stop taking an EGFR targeted therapy
unless your doctor tells you to.

If you are taking the drug Tarceva®, always take the
pill on an empty stomach (at least 1 hour before or
2 hours after eating).
Notify your doctor if there is no improvement
after 2 weeks of treating the rash as your doctor
recommended.

For dry skin, use moisturizers (Vanicream™, Eucerin®,
Aquaphor®).

For itchy skin, inform your doctor. You may also
obtain relief with over-the-counter products
(Sarna® ultra cream, Regenecare® gel).
For dryness or flaking in the palms and soles or
paper-cuts in fi ngertips, use skin softening creams
(AmLactin®, Carmol® 10) or what is prescribed by
your doctor.

For inflammation around your fingernails, inform
your doctor and use topical antibiotics (Polysporin
ointment) or soak your fi ngertips in a solution of white
vinegar diluted 1:10 in tap water for 5 minutes a day.

[Joy]

Thank you for all the good advice I have a call into my NP about clindamycin, we just didn't connect. But I'll keep all of this info together-thank you for all of your empathy. Just having a low day.

[Joanne S]

Wow Joe! You are great!!!

[Joanne S]

Brenda, That sounds like a great idea! I am going to do the same. Thanks!

[Esther]

I got the prescription lotion from my onc and he mentioned that if that was not sufficient he would presecribe an antibiotic for the facial rash and break-outs.

I'm with you...the facial break-outs are the worst because they are so visible. I've used Neutrogena sunblock with spf 50 and it has really helped as well.

Hope you find some relief soon.

[Carolyns]

Hi Joy,

I am thinking of you and sorry to hear that you are suffering. I know of a girl at my center that had a terrible rash on her face and she found something that she thought worked. I will ask her what it is and report back to you.

We all have our ups and downs...even you. Typically you are so UP and you raise all of us up with you. Now it is your turn to sit back and let us lift you.

Love, Hope, and Peace,

Carolyns

[chrisy]

I find it impossible to believe that you could look any thing but beautiful! And I know that your scans will be great.

Seems like you have gotten a lot of great advice, and hopefully you will get back control of your beautiful complexion soon - and reclaim that wonderful smile.

I don't have anything further to offer on that - I never really had acne growing up and had only a little rash with the tykerb - although it continues to flare up after 4 months! Right now it is active on my nose and the back of my neck.

The only thing I can say is if you decide to do the bag over your head, make sure it's not plastic and that you have lots of openings so you can see. And don't forget, with Halloween right around the corner, there should be lots more fun options.

I know this is very distressing - so I'm not trying to make light of it! Canser does steal normalcy from us in so many ways, it gets really old. But I know you have the same sort of twisted sense of humor and spirit as me and that you won't let it keep you down for very long.

I'll be thinking of you on the 21st and praying for good news for you. I'll be scanned on Oct 8 - so I hope we both get good news!

Hang in there, gorgeous!
Chris

[tousled1]

Chrisy,

I must say I love your sense of humor. Yes cancer takes the normalcy out of our lives but it's great when I read your posts -- you always manage to put a smile on my face. I too get scanned the beginning of October. So here's hoping that you, Joy and I all get good results.

[Sandy in Silicon Valley]

Hi, Joy -

I've had a mild case of facial "rash" (more like pimples - red bumps & whiteheads) - mostly on my chin, around my mouth, and now on my temples and forehead. It comes and goes, but so far (I've started my 3rd month straight of 1250mg/day) it has stayed pretty mild.

Here's what I've found effective for me - of course, your mileage may vary!

Regenecare is a topical gel prescription - it is normally used for "wound care". It comes in 3oz tubes, and my onc gave me a prescription for 9oz, so I got 3 tubes for my drug copay, instead of the $25/tube plus shipping that it costs to buy it online.

It contains pure aloe vera, lidocaine and collagen. Basically, it seems to me to "seal" the area of blotches from infection or outside dirt, without drying them out (which, in the case of Tykerb rash, is reported to make the rash worse). It feels like a facial mask, and when I put it on thickly (sometimes, during an especially bad break-out, at night) it sort of flakes & leaves a dried-glue kind of residue that I wash off in the morning, before applying a thinner new coat.

Here's one of many links about the topical gel's effect on EGFR-inhibiting drugs' side effect of rash:
<http://www.lifesystemsonline.com/products/wound_care/mpm_regenecare_wound_gel.php>

Once the blotches are "sealed", I can put concealer cosmetic over them, blend it in, without rupturing or irritating the bumps. That helps me feel less pizza- faced when I go out.

I, too, am awaiting quarterly brain scans the end of this month - an MRI and MRS, which, when compared, will hopefully let the docs know if the "spot" in my right caudate, that has been slowly growing since Oct 06, is indicative of radiation injury (I had CyberKnife tx in that exact spot in July 05) or re-growing bcmets.

I'm not on Avastin - due to the brain mets hx and high bp. My tx consists of a Herceptin infusion every 3 weeks, and Tykerb daily.

Thanks for posting your concerns -

Sandy in Silicon Valley

[SoCalGal]

Hi Joy,
I had a mild rash when I was on the Tykerb and xeloda, but NOW every time I do my drip I break out in the worse red and ugly underground acne. It's definitely the Tykerb and my onc says bad skin is "favorable". Haha.

I don't know what to tell you. I feel so ugly every time it happens - who wouldn't? I use clinique's advanced concealer in a green tube. It's cheap - $13 and really works. It's a matte finish and the only thing I can think of trying next is some spackle. Or maybe that dermablend stuff for scars.

I did read Joe's posted brochure, it didn't really say what TO use, only what not to use (acne meds, which did make my face worse).

I figure that my main purpose to survive is to finish raising my kids, and since they don't look at me when they speak or when I speak, having pimples is something that doesn't keep me from being a good mom:).

Go easy on yourself. You are an attractive woman. No one else sees the ugly stuff...keep putting your energy out in front - it's what will be seen and remembered!

xo. Flori

[Joy]

I love you!!!! You always make me laugh. I'm sorry you are dealing with the skin junk too and glad you found something that works some. I'm sure you are still hot!

I didn't even think of going to Home Depot for remedies. Silly me I was at the drug store.

I've learned a lot in the last few days and am posting a seperate bit on that.

[hutchibk]

One of the brochures on Joe's link actually tells docs exactly what to do and when... (It shows pics that I don't know how to transfer over, but I have transcribed the info:)

*Employ a proactive approach in managing skin reactions.
*Suggest that patients use a thick, alcohol-free emollient cream.
*Suggest that patients use a sunscreen of SPF 25 or higher, preferably
containing zinc oxide or titanium dioxide
* If patient presents with rash, verify appropriate administration of drug and proceed with the following therapy algorithm:

Mild:
Minimally located
No impact on activities of daily life (ADL)
No sign of superinfection

(shows picture of mild rash occurrence across bridge of nose and cheeks)

Continue EGFR targeted treatment @current dose and monitor for change in severity.

***Use:
Topical hydrocortisone 1% or 2.5% cream and/or Clindamycin 1% gel

Reassess after 2 weeks, if reaction worsens or does not improve, proceed to next step.
_____________

Moderate:
Generalized
Mild Symptoms (e.g. pruritus, tenderness)
Minimal impact on ADL
No sign of superinfection

(shows picture of red worsened rash occurrence (pruritus) across nose, around nostrils, top lip, lower cheeks, and entire chin.)

Continue EGFR targeted treatment @current dose and monitor for change in severity. Continue treatment of the skin reaction with the following:

***Use:
Hydrocortisone 2.5% cream or Clindamycin 1% gel
or Pimecrolimus 1% cream
Plus Doxycycline 100mg BID or Monocycline 100mg BID

Reassess after 2 weeks, if reaction worsens or does not improve, proceed to next step.
________________

Severe:
Generalized
Severe symptoms (e.g. pruritus, tenderness)
Significant impact on ADL
Potential sign of superinfection

(shows picture of worsened rash occurrence similar to moderate with more facial coverage and continuation to shoulders and neck)

Reduce EGFR targeted therapy as per label and monitor for change in severity. Continue treatment of skin reaction with the following:

***Use:
Hydrocortisone 2.5% cream or Clindamycin 1% gel
or Pimecrolimus 1% cream
Plus Doxycycline 100mg BID or Monocycline 100mg BID
Plus Medrol dose pack

Reassess after 2 weeks, if reaction worsens, dose interruption or discontinuation may be necessary.

[SoCalGal]

I more carefully reviewed the info and those pictures scared the crap out of me. Maybe spackle wasn't such a bad idea. Seriously, I feel that trying to survive cancer and trying to keep one's dignity can be somewhat impossible with the severe and weird side effects. I especially like the strips across the eyes.

And just for the record (?whatever that means) I did pose "nude" from the neck down for all my doctors so other woman could see just what it means to have bi-lateral mastectomies with autonomous reconstruction using the TFL muscles.

If I had only had those blue eye strips, they could have used my whole body and not cut my head off for the shots:)