tarceva

i have been on tarceva for 5 years, all of a sudden now i am having the tarceva rash  blisters all over eyes and inside my nose. i look like a little monster, i get antibiotics for it, which i have had several times this year. anyone else have side effects from tarceva ?  i may not be able to work today as i an a hair dresser,  people will think i am dressed for halloween. i am blessed to be alive i am not conplaining but just wondered who out there could give me some advice.    thanks friends and god bless you all who have been on this journey.

 

On 10/20/2009 jusykitty wrote:

i have been on tarceva for 5 years, all of a sudden now i am having the tarceva rash  blisters all over eyes and inside my nose. i look like a little monster, i get antibiotics for it, which i have had several times this year. anyone else have side effects from tarceva ?  i may not be able to work today as i an a hair dresser,  people will think i am dressed for halloween. i am blessed to be alive i am not conplaining but just wondered who out there could give me some advice.    thanks friends and god bless you all who have been on this journey.

Hi Jusykitty,

I had exactly what you described when I first started Tarceva. I also had the rash inside my private part which was so uncomfortable. Dr.  put me on Minocycline 100mg once a day, and clindamycin gel as topical treatment. After one week things started to clear up and I took antibiotic for 3 times a week because it upset my stomache.I was on antibiotics for 3 weeks. I experienced most of the side effects listed for Taceva plus something not listed as well. On my first visit with my oncologist after being on Tarceva for 2 weeks my face was like yours now. As soon as the oncologist saw me she was excited and said : "oh, you have response, Tarceva is working". She then explained to me Tarceva causes that.

There was a period of time my skin was so bad and my body was peeling off, that made me look and feel like a snake. The new skin was so sensitive that even the contacts with my nightgown hurted.

I got better when the dose was reduced and now I have white head like pimples and once a while some small blisters.

There is one side effect from Tarceva that favors me: My eye browns and lashes are thicker and longer now. I love my Oncologist for this :)

Hope things get better for you soon Jusykitty.

TL

thanks so much for the reply, i had to start slow on this drug, started at 75mg's i had all the side effects,   they passed and the dr upped the tarceva to 150mg's. i had the side affects again then they left all together for awhile. i always had low level sides but nothing to require medication until all of a sudden. yes the doctor was happy that the medication was working, i truely thought i was crazy...my private parts were so sensitive, and the skin flakes so much my black bra turns white. the taste buds on the tounge are so sensitive too, i get big cracks in my feet and hands. i asked for something to rub on and never was able to get that so i am going to request that. i go to the philly hospital and dr.willis is my guy there. may i ask what kind of make-up do you use? i am now using bare minerials, just wondering if this could be causing these out breaks, or just the stuff flying around the shop seems like ever since i returned to work this is worse. i use aveeno bath and body cream, once i had to used some ben-gay and that burned me so much. i had a rare cancer which tarceva works for i had a lung tumor but that was not the primary so he gives me tarceva to turn off that gene, i had merkles cell cancer which is very rare and misunderstood. leave to dr willis...he is wonderful as all the doc's at c.t.c.a. i am a 57 year old women they gave up for dead 5 years ago....and i am working and an cancer free now, thank god i for c.t.c.a. i do thank god for tarceva but it is a hard drug, so is erbutux. god bless

oh yes i got to cut the eyelashs and the brows grow like mad, although the last bout with tarceva i scratched all the eyebrows off...no need to wax those. ya just gotta have a sense of humor we are alive and well but it is a trade off.

 

On 10/20/2009 jusykitty wrote:

thanks so much for the reply, i had to start slow on this drug, started at 75mg's i had all the side effects,   they passed and the dr upped the tarceva to 150mg's. i had the side affects again then they left all together for awhile. i always had low level sides but nothing to require medication until all of a sudden. yes the doctor was happy that the medication was working, i truely thought i was crazy...my private parts were so sensitive, and the skin flakes so much my black bra turns white. the taste buds on the tounge are so sensitive too, i get big cracks in my feet and hands. i asked for something to rub on and never was able to get that so i am going to request that. i go to the philly hospital and dr.willis is my guy there. may i ask what kind of make-up do you use? i am now using bare minerials, just wondering if this could be causing these out breaks, or just the stuff flying around the shop seems like ever since i returned to work this is worse. i use aveeno bath and body cream, once i had to used some ben-gay and that burned me so much. i had a rare cancer which tarceva works for i had a lung tumor but that was not the primary so he gives me tarceva to turn off that gene, i had merkles cell cancer which is very rare and misunderstood. leave to dr willis...he is wonderful as all the doc's at c.t.c.a. i am a 57 year old women they gave up for dead 5 years ago....and i am working and an cancer free now, thank god i for c.t.c.a. i do thank god for tarceva but it is a hard drug, so is erbutux. god bless

Hi Jusykitty,

I only wear makeup on Sunday and Lancome seems to be ok for me. On the days that my face flares up so badly, I just put eye makeup and lipstick on. Dr. told me to apply cream with SPF 15 or higher when I am out in the sun but my face is so so so oily that I dont need moisturizer, I choose to wear a hat instead.

I had facial two weeks ago and it was a mistake. The girl took out lots of white heads and I was left with marks on my face. The white heads come back few days later.

One thing my physio-therapist tells me and I think it helps. I dont drink enough water so he encourages me to drink more. I notice that on the day I drink more fluid, I feel better, I make more trips to the kitchen for food and I am more lively. It makes sense though since more fluid in our bodies would help to clear out the toxicity from the drug faster.

Tarceva also makes me strongly sensitive to fragrance/smell and spices. I used to wear perfume, eat spicy food and smell the roses but have to stop :-(. I hope this side effect will eventualy go away and one day I will be able to enjoy a big plate of buffalo wings, and of course, put on a dap of Chanel #5 :)

TL

 

 

 

On 10/20/2009 jusykitty wrote:

i have been on tarceva for 5 years, all of a sudden now i am having the tarceva rash  blisters all over eyes and inside my nose. i look like a little monster, i get antibiotics for it, which i have had several times this year. anyone else have side effects from tarceva ?  i may not be able to work today as i an a hair dresser,  people will think i am dressed for halloween. i am blessed to be alive i am not conplaining but just wondered who out there could give me some advice.    thanks friends and god bless you all who have been on this journey.

Hi,

Five years is terrific.  I have been on it 3 years.  And also experienced the same issue from time to time, especially in the beginning. 

Ask your oncologist for a prescription of clobetasol propionate cream 0.0%.  It's usually prescribed for eczema but it works absolute wonders on the rash and cleared mine in about 2 days.  Just dab a bit on when it first starts.  I think you'll be amazed.

Good luck and God Bless.

 

 

oh god bless you thanks, i an calling him right now, i knew there had to be something to rub on, i have every cream known to man and nothing works, actually rubbing my face more than once over makes it hurt...thanks   patti  l

yes i have to put purfume on my clothes not the skin, the sented oils i can use,  oh how did you feel after someone rubbed you face that much? no i won't try that, it is not acne the doc says, i was on line and another fellow tarceva user said that propionate clobetasol woks loke a dream for rubbing on the skin. i am calling my dr right now.  i started back to my job in a hair salon, this i think has set it off. the smells there too i think make me worse, when i get a flair up...as i call them...even my taste buds are sensitive everything. but i am alive and well, 5 years cancer free.   patti  l

Hi

My dad has been taking tarceva for 2 weeks, very sick, not eating, v bad rash and shivers...

Did you experience any of these?, miserable but hopefully working.

Louise.

Hi Louise,

I went through exactly what he is experiencing. There were days I was so sick I vomited out blood too. In my first month on Tarceva I drank hot Ensure and Boost to keep me warm and to give myself some energy. If he could keep the food down, ask him to try small amount of food at a time.

I will say a prayer for your Dad with the hope that the drug works for him too, Louise.

TL