question on Tarceva

I'm a 31 yr old female that was diagnosed Jan 09 with Stage 4 NSCLC with mets to the ribs, long bones, vertebrae, and pelvis. I had 3 rounds of chemo (cisplstin/ulimpta) as well as 9 rounds of radiation to my t8 vertebrae and 10 rounds to my femur. The second petscan showed decreased activity in two areas and increased activity in two areas, so the doctor put me on Tarceva. I did get tested for the EGFR mutatation, which came back negative, but we decided to try anyway.It has now been about 10 days since I started taking this and I still have not seen any rash. I am concerned because I have had two doctors confirm that the worse the rash is, the better the Tarceva is working. they also said that the rash should show up within a week.

Should I be concerned that I have not even started seeing signs of any rash? what if I do not even get the rash? I also have not started having the other side effect of diaharrea.

Any comments would be appreciated!
Melissa

31 it strikes at all ages, My heart goes out to you, Listen the Tarceva is a really good Chemo drug, I don't know why a doctor would tell you the more the rash the better it is working,(Maybe to try to keep you on it longer) The rash is what could happen as a side effect to the drug, does not mean you would get the side effect, that's a maybe everyones body is different,Let's hope you don't get the side effects to these drugs, Let's pray you can take these drugs and live a normal lifestyle without being sick and to tried to do anything. Take your Tarceva the same time everyday, My Mother sets the Alarm for 6AM, takes her pill and goes back to sleep because you cant eat for a few hours after taking the pill, this is working out great for her.It took a while before she came up with a few ant looking bites on her face. They come and go, but hers is not a bad rash and we have been taking Tarceva now for 4 months, Their is people on this site that can not take Tarceva the rash was just to bad for them and they changed their medicine to something they could take that their body could handle, so you see it's not about you getting the side effects it's about not getting them and having the drugs work. You be sure to drink plenty of water, get those drugs going all over the body and stay off caffeine. caffeine causes indigestion. Stay out of the sun.Morning walks help build energy for the day. I hope this helps.. This has been our experience with Tarceva, God be with us all.

I've been on tarceva for over 2 years now.   And the rash is a very good sign that the drug is working.  The other two main side effects are nausea and diarrhea.  Even if you get all 3 side effects, they diminish the longer you stay on the drug. 

Just because you haven't gotten the rash yet doesn't mean the drug is not working.  Some people never get the rash.  And some people take up to 2 weeks before it shows up.  So give it time. 

Try and eat a lot of vegetables, avoid direct sunlight, avoid grapefruit/juice completely, avoid refined sugar as much as possible, and be sure to take it the same time every day, either one hour before a meal or 2 hours after a meal.

It is truly a wonder drug if it works for you.  But don't give up too soon.  Also, you didn't mention what dose you are on.  The standard is 150 mg, so if your dose is less than that, the side effects may not appear as quickly.

Good luck and God Bless

Thanks for your response to my question. You mentioned in your response to stay out of direct sunlight. Why is this? I live in Arizona, where the temps are getting to be around 110 degrees and its impossible to stay out of the sun. We spend alot of time at the pool to keep cool.

 

On 6/29/2009 melissa w wrote:

Thanks for your response to my question. You mentioned in your response to stay out of direct sunlight. Why is this? I live in Arizona, where the temps are getting to be around 110 degrees and its impossible to stay out of the sun. We spend alot of time at the pool to keep cool.

 

Hi Melissa,

I know what you mean.  I live in Florida and it is hot. 

The tarceva literature advises that direct sunlight can intensify the rash.    And for me the rash got  bad on its own without being in the sun.  And it doesn't take much for the rash to become infected requiring antibiotics.

When I have to be in the sun I wear a safari hat and sometimes carry a small umbrella just to shield the sun.  If the rash isn't active, I don't worry about it too much. 

I'd just be more careful when the rash is present. 

Good luck and God Bless

Hi How bad does the rash get? what are the durations and for how long? I have yet to see any kind of rash. I was at the doctor today and he said it could take 20 days or so. What is the worst part about the rash? Have you experienced any other side effects? I believe the other main side effect is diaherrah. I have noticed that I have been nauceous over the past few weeks....

 

On 6/29/2009 melissa w wrote:

I'm a 31 yr old female that was diagnosed Jan 09 with Stage 4 NSCLC with mets to the ribs, long bones, vertebrae, and pelvis. I had 3 rounds of chemo (cisplstin/ulimpta) as well as 9 rounds of radiation to my t8 vertebrae and 10 rounds to my femur. The second petscan showed decreased activity in two areas and increased activity in two areas, so the doctor put me on Tarceva. I did get tested for the EGFR mutatation, which came back negative, but we decided to try anyway.It has now been about 10 days since I started taking this and I still have not seen any rash. I am concerned because I have had two doctors confirm that the worse the rash is, the better the Tarceva is working. they also said that the rash should show up within a week.

Should I be concerned that I have not even started seeing signs of any rash? what if I do not even get the rash? I also have not started having the other side effect of diaharrea.

Any comments would be appreciated!
Melissa

Hi Melissa,    You'll be fine.    Everyone responds differently to the Tarceva.   I got a bit of a rash.  I got a bit of hair thinning in front.   Both have about gone away after 9 months.   My lung and backbone tumors went down to nothing within 4 weeks.  I want to stay on Tarceva as long as possible.     The important thing is that it works to manage the tumors and that your quality of life isn't too diminshed.   The doctors can give some palliative care.   My skin is very dry and I keep Alleeno lotion at hand.    Daughter gave me 4 bottles.  They now carry it at Costco.    We live in WA state where the biggest problem is rain, but when in the sun I've been using a 50 sunblocker.   The Tarceva works on many kinds of cells, one of them being the skin.    Eat a good diet, no grapefruit, get some exercise and do things you enjoy.  All our good for feeling well.   Isn't it great that we have this chatroom to learn from others.    Welcome.

I've been in 150mg of Tarceva for about 3 months and still don't have a rash, but, boy, do I have the nausea and diarrhea.  I don't know if the Tarceva is working but I think it is since I went to the emergency room a couple of weeks ago and the doc said my chest x-ray was the same as it was several months ago.  Nausea is really debilitating for me so they gave me Zofran (ondansestron) and it really works.  It's expensive, but the other stuff wasn't working at all.  This doesn't really answer your question, but I thought others might like to know about the Zofran.

Hi Thanks for your reply. The Tarceva definitely seems to make me nauseous. The past few weeks I have had a constant feeling of my stomach churning and my head spinning...almost like the worst hangover Ive ever had. I'm at CTCA right now trying to figure out a resolution. I have tried Zofran , decadron, Phergen and nothing seems to work.