Tarceva and its side effects

[cat127]

OK folks, I'm turning to you as you are far more the experts than I. Two issues Kelly is having that are problematic. One the Dr. has not seen before - wait, no, she said he hadn't had either issue with his patients.

First, I know I've read about here. I think NED, you might be the one that had this. Her rash on her hands and feet have now turned into "a thousand little paper cuts". I told her I had seen that here, though it was not something I would have predicted. Did you say you used some sort of tape NED? Can you elaborate for me so I can pass it along?

The other is pain in her mouth. At first I thought it was thrush, which her GP agreed with and then so did the oncologist's PA, though she did so over the phone. The GP prescribed a rinse and the PA a pill, and there has been no change. In medicine, if the cure doesn't fix it, then that ain't what it is. So to speak. She'll finish out the pills, just to be a good compliant patient, but the Dr is sort of stumped. At this point, this could be what leads to a dose reduction or a two days on one day off schedule. But we are hoping that either she adapts and the pain goes away, or someone here, clearly a bigger patient pool than her Dr alone has, has also had the problem and has an answer for us.

As Kelly told her Dr today - "I have a cellar full of really GOOD red wines, and with this pain, I can't drink them. I refuse to accept that I can never drink this wine!" He asked her would they 'go bad'. She said not these wines, but whether I can ever drink them is an issue.

Plain and simple, it is impacting QOL for her. She can't eat things because of the pain, and lost 9 lbs in one month. She also had bad diarrhea now sort of under control and then vomitted for several days due to an antibiotic and becoming, as I teased her, Pavlov's dog. She saw a pill, she threw up.

I don't think the weight loss will continue at that rate given the end to the vomitting and the diarrhea under fair control. But she needs to be able to enjoy her food (and her wine).

So - any input on the cuts or the mouth? All advice greatly appreciated!

[recce101]

About the "paper cuts" -- I've only had them on the fingertips, and that was bad enough, combined with very sore inflammation in all the skin folds around the nails. The single most effective thing has been flurandrenolide tape (brand name Cordran Tape), which does a very nice job removing the soreness and irritation. The only problem is, the medicated tape also makes the skin rather thin, fragile, and susceptible to further damage when the tape is off. My dermatologist recommended an OTC shielding lotion called Gloves In A Bottle for use when the tape is not applied -- this binds with the upper layer of skin and prevents the lower layers from drying out, gradually making the skin more resistant to damage. It's a real battle, but as of this week (I've been on Tarceva for over 6 months) my fingers are ALMOST okay. I'm keeping my toes (in fact, everything) well lubricated with Cetaphil lotion, which helps quite a bit. The general rash is no longer much of a problem.

About the mouth problems, there was a period about a month into my Tarceva experience when I felt the rash was not only on my skin, but also on the roof of the mouth and tongue. It wasn't quite the same as the irritated mouth and GI tract caused by the taxol/carbo, it was more of a reaction to certain substances rather than texture. That's steadily improved, and now I can eat things that are mildly spicy. There are still some toothpastes that I can't handle and occasionally a sausage that doesn't bother anyone else goes into my napkin very fast. Back in my taxol days I drank 3 cans of 350-calorie Ensure to keep up my weight, also lots of ice cream and milkshakes.

For the rash, look at this program which was mentioned on OncTalk. The tape was recommended by the dermatologist on the panel:

http://www.cmediscovery.com/EGFR/index.html

Best wishes to your sister with my Aloha,

Ned

[cat127]

Thanks so much Ned. That was all very helpful. I think Kelly's Dr, and Kelly, are hoping the mouth issue sort of resolves over time. She said she can't taste salt, doesn't like coffee anymore, and finds things too spicy (words we have never uttered in our family) So I do hope the mouth issue resolves.

I will forward the details about the skin on to her, and check out the link. I was thinking that maybe it was time for her to go see her dermatologist anyway. She sees one regularly due to some basal cell carcinoma issues. She is a wonderful dr that we adore and Kelly finds it very comforting just to talk to her. It might do her some good to go see her overall, but I bet she may have some ideas about the skin and paper cuts.

Thanks again!!!

[JB]

Cat, Colleen has the same paper cut effect all over her fingers and toes...Hopefully she sees your post and let's you know exactly what she's been using. For the most part it's rubber gloves when she's doing stuff. She's never mentioned anything with her mouth though.

[recce101]

"cat127" ...She said she can't taste salt, doesn't like coffee anymore, and finds things too spicy (words we have never uttered in our family)

That rings some more bells! Though my taste buds have mostly recovered from the ravages of last year's taxol/carboplatin, and the Tarceva rash-like feeling in my mouth has almost disappeared, for the first time in at least 20 years I find myself reaching for the salt shaker! The whole family looks at me sort of funny, as we all long ago became acclimated to much less salt in our cooking, but I counter that I will not be deterred as long as I have the best blood pressure readings in the household.

Also, the heartburn/acid reflux that started last year became worse on Tarceva, and in searching for things to eliminate I decided coffee was a good target, since from a previous effort I was already down to just one cup a day (in the morning) and I wasn't really enjoying it much anymore. I expected bad withdrawal headaches like I had during the previous attempt to completely eliminate caffeine, but I substituted water or juice and was surprised that I had no ill effects from cutting out that last cup of coffee. In fact, and this was a REAL surprise, since doing that (2 or 3 months ago) I have had ZERO headaches -- and for the previous 50-plus years I'd awakened with at least a mild headache a couple of days a week. The bad news is, quitting coffee didn't completely eliminate the heartburn, and I had to cut out tomatoes too. Aloha,

Ned

[Janet B]

Once again I have to say I love this forum!! Last week all of a sudden I had all these little paper cuts and I couldn't figure out where they came from!! Chalk another one up to the Tarceva! As long as it keeps me NED I'll take it! (I also crave salt and have horrible heartburn!)

I think a trip to the dermatologist for Tarceva issues would be a great idea. I see my dermatologist now more than my oncologist! She has had experience with Tarceva side effects - and has been very helpful.

It is just a funny drug - what will bother your sister one week won't be a problem the next - but then a new side effect might start up - it is just trying to keep us on our toes!