donaght Posted October 24, 2007 Share Posted October 24, 2007 Hello all, This is a general enquiry about the rash that Tarceva causes. I have been taking 150 mg a day for 3 weeks now and have had a very bad rash since the outset. The rash on my chest, back and arms is tolerable but my the rash on my face includes a whole array of pimples that remind me of my glorious days as a teenage pimplehead (I had very bad acne.) I would like to hear from anybody who can help me put this experience into perspective. I don't want to give up on this drug but so far it has been an incredibly disheartening experience. I've have eliminated anything from my diet that I know causes me to have acne (sugars, chocolate, etc...) Any other suggestions about dealing with the rash are welcome and appreciated. Tom Quote Link to comment Share on other sites More sharing options...
trish2418 Posted October 24, 2007 Share Posted October 24, 2007 Many of us Tarceva users take Minocycline and/or Clindamycin for the rash. I also find that keeping my skin super moisturized helps a lot. Good luck and I hope you have lots of success with Tarceva. Trish Quote Link to comment Share on other sites More sharing options...
Adrian Posted October 24, 2007 Share Posted October 24, 2007 for what its worth, there's a correlation between the rash and positive tarceva response. My dad is 1 week into treatment and no rash---we are praying that it shows up soon. If the rash is too bad, the dose can be reduced to 75 mg. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted October 24, 2007 Share Posted October 24, 2007 Tom, Make sure your doctor is aware of the severity of the rash you have. There are prescription ointments for it, like Clindamycin and the doctor may also reccommend lowering the dosage of your Tarceva. Each case is different and the way each doctor handles it is different, but in all cases it should be reported and managed under a doctors supervision. Sue Quote Link to comment Share on other sites More sharing options...
wendyr Posted October 24, 2007 Share Posted October 24, 2007 Hi Tom: Although I doubt diet can affect the rash, the good news is Tarceva is probably working. Talk to your dr about medications for the rash. Good luck with Tarceva, it has worked miracles for some. wendyr Quote Link to comment Share on other sites More sharing options...
Ry Posted October 24, 2007 Share Posted October 24, 2007 One thing that has worked for others is to stop for a few days, let it clear up then re-start the medication (of course at the recommendation of the oncologist). For some reason that has helped. Another is to lower the dose. John used a good moisturizer on his and it helped. I know it looks like acne but you treat it differently by moisturizing it rather than using a drying agent. Make sure to use a sunblock when you go out-- Tarceva makes you burn easily. Good luck! Rochelle Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 24, 2007 Share Posted October 24, 2007 Hi, Tom: Well, as of now I don't have any answers for you, just questions of my own. I started Tarceva Oct 10, I guess a little after you. Rash (about average), diarrhea (not too bad), and fatigue (unexpected) all came on within a week. For the alligator rash (mainly forehead, face, behind ears), I've been using OTC Hydrocortisone 1% cream with moisturizers, which has been working pretty well. For areas on the face, neck, arms, etc. that don't have a rash but do feel sun-sensitive and itchy, I've been using Vaseline Intensive Care lotion (got that idea from onctalk.com). Neither of these did anything for my appearance, but I was comfortable, and that's what mattered to me. Then yesterday I saw my onc for the first time since starting Tarceva, and he gave me a prescription for Clindamycin 1% gel which he believed would be better than the hydrocortisone. So after a shower with Dove sensitive skin body wash (been using that since doing the Taxol scene a year ago) I put some of the new gel on my face and got ready for bed. It felt pretty good going on, then started to get a little itchy, but I was tired and fell asleep reading. A few hours later I awoke with a raging itch and very tight skin everywhere I'd applied the gel. I quickly washed all that stuff off my face and forehead, which I have to admit did look a lot smoother, and smeared the Vaseline lotion on everywhere that was dry and itching. Quick relief. As an interesting aside, the main side effects listed on my info sheet for the clindamycin are "burning, itching, dryness, redness..." Isn't that what I'm trying to avoid? Go figure!! I wonder if it comes down to a choice between looking halfway decent and feeling comfortable. You already know my preference on that. Let's keep this thread going. Since Tarceva has been so great for so many, let's make it tolerable too! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
fight Posted October 24, 2007 Share Posted October 24, 2007 Tom, I also had what my doctor considered a moderate to severe rash and while he told me that he smiled. He said that's a good that and that it probably means that the Tarceva is working. He then told me to stop taking it for about a week to calm down the rash. I had it all over my back, chest, face and head. The back and head were painful. It was uncomfortable to lay on my back and my hair hurt. Anyway I stopped taking it for 7 days and started taking Minocycline and Clindamycin. All the above seemed to help. The rash went away and I haven't had as severe of a rash since. The rash does seem to come and go though. I've had spots showing up on my legs and arms as well. My doc also mentioned that if the rash contintued to come moderate then he would lower my dosage. I'm taking the 150mg. I also found comfort in taking a nice hot shower a couple of times a day and then applying vaseline to the trouble spots. Straight vaseline and not the lotion seem to provide the most relief. As Ned said it not about the way you look but about feeling good. I hope you get some relief from the rash and hang in there. Take Care, Rachel Quote Link to comment Share on other sites More sharing options...
Wendy Posted October 25, 2007 Share Posted October 25, 2007 Tom, The clindamyacin gel mentioned above will help. I only use the gel when I have major breakouts and always put lotion on over it about 10 minutes after it is applied. I have been on Tarceva for about 20 months and was on a similar drug Iressa for 9 months - needless to say, I have had alot of skin issues. Some other products I have used: Skin: Cetaphil soap and lotions (they are really mild), acquaphor lotion for when the skin is super dry and irritated, aveeno lotion with menthol when the skin is itchy, ....... Scalp: Aveeno dry scalp shampoo, nioxin shampoo and conditioner, johnson baby shampoo, I wish you luck in finding the products that work well for you and that the Tarceva is working its magic. Wendy Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted October 25, 2007 Share Posted October 25, 2007 I had the rash but it went away. Also had a bad case of Diarrhea. Had the dosage lowered from 150MG to 100MG and that took care of that. Still had very good results with it at the lower dose. Might want to ask your doctor just a thought. Rich Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 25, 2007 Share Posted October 25, 2007 Update from previous post above. After a shower last night I used only the Vaseline Intensive Care on my face, neck, etc. Very comfortable sleep. Still have alligator skin, but it's a happy, calm alligator. Rachel, about the straight Vaseline, I also use that on my legs, but for another condition, stasis dermatitis -- which flared up severely when I was on Taxol but is now back to the way it was for years prior to cancer or chemo. Seems to be the best thing for long-term, daily use. Now, about eating. That was becoming very difficult the past few days and my weight was starting to drop. It actually felt like the Tarceva rash was on all the surfaces inside my mouth and covering the tongue. Everything I ate burned if it had the slightest bit of texture to irritate the mouth and tongue. I had plenty of Ensure Plus on hand, which felt good going down, and my wife and son had a simultaneous brainstorm -- put the Ensure in a bowl and mix with a large glob of poi! Now if you've ever tried poi, especially if it hasn't been jazzed up with sugar and other stuff, you probably thought it had the taste and consistency of wallpaper paste. But it's a treasured staple of ethnic Hawaiians and other Polynesian groups (made from the tuber of the taro plant) and it's said to be one of the few foods that could be lived on indefinitely. It mixes easily with anything, and with Ensure tastes really good. Feels soothing, too. So if I'm unable to eat "regular" food, poi and Ensure will see me through! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
donaght Posted October 25, 2007 Author Share Posted October 25, 2007 I hope this reaches everyone who responded to my first post. I saw my oncologist today who agreed that I had a pretty severe rash. I got a prescription for Minocycline. She thought that might be enough but I'll be back in two weeks if things have not improved significantly. I was reluctant to use any lotions because of my history of skin problems, but after reading some replies, I started lathering on lotion, which has rally helped. I'm using a water based Vitamin E lotion which I apply after hydrocortisone. My doctor told me that the rash is a positive sign as well, so on we go. Thanks again, Tom Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 27, 2007 Share Posted October 27, 2007 "Wendy" ...I only use the [clindamycin] gel when I have major breakouts and always put lotion on over it about 10 minutes after it is applied. Thanks for the tip, Wendy. I've done that on small areas as a test, and it does seem to prevent the burning-itching I had with the clindamycin alone. So now I put the gel on the worst areas, then put the Vaseline Intensive Care lotion on the other semi-affected or sensitive areas, and finally go back to the worst areas and apply lotion as a second coat. At least I now have a plan. Thanks again! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
RandyW Posted October 27, 2007 Share Posted October 27, 2007 From the resident researcher, Yes the rash does mean that the tarceva is working. This has been scientifically pproven and documented. I have posted in the new treatment forum about this. Deb used to use Nivea in the blue bottle with the white cap for her dry skin and loved the results. ME TOO Best of luck to all of you in your dealings with this Problem all be it a good problem to have!!!! Quote Link to comment Share on other sites More sharing options...
kathyjj Posted October 27, 2007 Share Posted October 27, 2007 I took 150 mg of Tarceva for 7 days and could hardly stand the side effects. My face felt more like I had a severe sunburn rather than an itchy rash. I was perscribed Elidel cream and an antibiotic. The Elidel wasn't soothing at all and the warning on the paperwork that came with it said that it could cause skin cancer and/or lymphoma with long term use. I used it for a couple of days and then switched to an aloe gel that worked much better. It cooled my face and helped a lot with the dry skin. I have stopped taking the Tarceva for now. I have a CT scan on 11/2 and I see my oncologist on the 5th. I'm not sure what to do about the Tarceva. I was miserable while I was taking it. I've been off of it for about 10 days now and my face still looks blotchy. Kathy Quote Link to comment Share on other sites More sharing options...
Shar Posted October 30, 2007 Share Posted October 30, 2007 Hi, In the 2 and a half years I have been on Tarceva the rash has been quite severe. I was on Minocycline for a year, that stopped working and now I am on Doxycycline. Hopefully that will at least take the edge off. As painful as the rash can be, I celebrate it. This drug has been a miracle for me, I don't even want to think what might have been without it. All the best with it, Sharon Quote Link to comment Share on other sites More sharing options...
neilb Posted October 30, 2007 Share Posted October 30, 2007 The rash does NOT mean that Tarceva is working. It means it's more likely that it's working than if you don't have the rash (i.e., it's a good sign). It's important to note that not everyone who gets the rash gets clinical benefit from Tarceva. Even more importantly, it should also be noted that some people who don't get the rash do get a response from Tarceva. It's certainly a sign either way (and severe rashes are associated with even better chances of Tarceva response), but it's not an absolute.--Neilb Quote Link to comment Share on other sites More sharing options...
neilb Posted October 30, 2007 Share Posted October 30, 2007 Let me just add a link to Dr. West's excellent post on Onctalk that summarizes the research on the relationship between Tarceva rash and effectiveness. http://onctalk.com/2006/11/25/is-rash-a ... nhibitors/ Quote Link to comment Share on other sites More sharing options...
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