Tarceva Info - side effects vs. effectiveness

[Patti B]

I started Tarceva two weeks ago and I have to tell you, the idea of these side effects have me really freaked out. Also, I have to get out of this mind set that the only way I am fighting cancer is with a needle in my arm every three weeks. For some reason, I have a hard time comprehending that a little pill can do the same, and hopefully more, than IV chemo did. But then I have had 31 cycles of chemo so I know that is just what I consider the norm to do. I also am stressing over why no side effects yet and if it means it is working or not, but then I tell myself that if they had switched me to another IV chemo, I wouldn't know yet if it was working or not, either.

I read somewhere that if you get the side effects, it doesn't necessarily mean that its working but that if you get NO side effects at all, it for sure isn't. So I am asking if anyone who has EVER been on Tarceva could answer these questions:

How long did it take for your side effects to start.

Which side effects did you have and how severe.

Did the Tarceva work for you??

If you were a smoker, how long had it been since you had quit (I have heard several different timeframes on this).

Thanks so much. Me and Patty Gottlieb are both waiting for the rash so I am sure this info will help her, too.

Hugs - Patti B.

[dadstimeon]

Hi Patti,

How long did it take for your side effects to start.

I think it started about 10 to 14 days, somewhere around there.

Which side effects did you have and how severe.

I had the rash and diarrhea. The rash (which was not bad at all) lasted only about 2 or 3 months and went away on it's own. The diarrhea no matter what we tried did not go away until we lowered the dosage from 150MG to 100MG and that took care of that. No other side effects after that.

Did the Tarceva work for you??

Yes had very good results for about 16 months.

PS: I had chemo and had no side effects what so ever and still had good results, had chemo with side effects and it did not work. My understanding side effects does not mean the chemo is working and vice versa, no side effects does not mean it is not working. Would take a pill over IV Chemo any day, so much easier. Only way your going to know if it works or not is a CT Scan etc. Don't think your doctor would recommend it if he did not think it would work, of course everyone is different and reacts differently.

Hang in there prayers for the best.

Rich

[CLB]

Hi Patti -

I believe it also took about 10 - 14 days for me to see side effects. The Tarceva side effects that I have had are the rash and diarreha. I have been on Tarceva since 3/07 and so far, I would say that the benefits are definitely out weighing the side effects. All of my scans so far have been either stable or improved.

I totally understand what you mean about not being sure if you feel like you are comfortable with just taking a pill vs. chemo infusions. I was so nervous that the pill wouldn't be as aggressive as chemo was.

Hang in there!!

Col

[Ry]

Patti-

John loved the Iressa and Tarceva. Both drugs held him stable for a long long time. His worst side effect in the beginning was coughing up blood. Tarceva is a blood thinner and since he was already on a blood thinner it compounded the problem and he had bleeding. Once he topped the blood thinner all was well. The rash was doable. I hope it works for you.

[recce101]

I read somewhere that if you get the side effects, it doesn't necessarily mean that its working but that if you get NO side effects at all, it for sure isn't.

Patti, I don't think the last part of your statement is necessarily true. I'm sure Dr. West has said that some people have good results from Tarceva with few if any side effects. Here's a very useful collection of links to Tarceva articles and posts on his website (I may have sent you this already):

http://cancergrace.org/forums/index.php?topic=618

My side effects started after about 5 or 6 days, and after I got the rash under control things have been very tolerable. I had quit smoking 43 years before my diagnosis. The Tarceva has kept me stable so far, and I feel better than I did when I started it, though there has been very little tumor shrinkage -- certainly not enough to be called a "response" (the criteria for that is 50% shrinkage).

Aloha,

Ned

[jaminkw]

Patti, I tried to post my thoughts on this several days ago but it's didn't go through on my mobile internet. That's why I've stopped posting much.

I suspect that idea of Tarceva not working if you don't get the rash and other side effects is kin to an old wives tale. I would wonder if anyone has ever seen any scientific evidence to confirm it. Sad thing is, we believe these things and you could be enjoying this "absence of side-effects" time. Instead, it's got you worrying your way through it.

No, I don't think you're crazy running to the mirror every morning looking for the rash. It would scare me to. I'd want it if I thought I had to have it to work but wouldn't want it where it's very visible.

Good luck. I'm thinking of you and checking on you when I do get on the site.

Judy in Key West

[Janet B]

Patti - We have talked about this - but I will repeat myself for others who may be looking for the same info -

I have used Tarceva for 17 months.

I developed the rash after about 3 weeks.

Other side effects: diarrhea, sores on scalp, inflammation of nail beds, eye irritation, hair loss

None of the side effects have ever been severe enough to consider lowering the dosage of or stopping Tarceva.

I get an MRI and PET every 4 months (well - that is the plan - my insurance company has other ideas - but that is for another post!)

I am NED - God is good!

Patti - my doctor also said that the whole rash/no rash thing was not necessarily true.

I know what you mean about wondering how one little pill can do anything. It IS pretty amazing! Every night before I take it I stare at it and marvel - but it is one pretty powerful pill!

You are in my prayers.