Justakid Posted January 9, 2005 Share Posted January 9, 2005 Here we go.....I feel the roller coaster climbing the really big hill. Time to hold on tight. Started 100mg of Tarceva this past monday, woke up Friday with two puss bumps. This morning I woke up and my upper lip was raw and so were my gums. This is exactly what happened on the 150mg, only this does seem to be moving a little slower. I started taking my antibiotics so hopefully the rash won't be as bad as last time. Another thing I have noticed is severe, (I mean severe) dry skin, when I take my shirt and pants off it's like there was a snow shower in my clothes. Very interesting medicine! It better work! Just thought I would share with everyone and compare notes with other Tarceva users! Quote Link to comment Share on other sites More sharing options...
Andrea Posted January 9, 2005 Share Posted January 9, 2005 Oy vey Beth, that does not sound like fun! Hopefully your body is just getting used to the drug and the effects will lessen. I remember hearing that it takes some time for the toxicity levels to even out. I guess you are using lots and lots and lots of lotion I dont know if it will help, but Kiehls has an intensive moisturizing lotion, like heavy duty moisture, it feels greasy for a long while after you put it on, but it helped my mom when she had the dryness. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted January 9, 2005 Share Posted January 9, 2005 Beth, I'm using Aveeno Baby wash and Shampoo with no perfumes/additives. Also I make certain the lotions I use contain no perfumes. Easier on the skin this way. Immodium for the tummy trouble. Rinse your mouth with warm water and baking soday to help keep your mouth from developing sores. I know it sounds like an old wives tale, but it works. Ask your doc for a prescription for either Bactroban ointment, or Clindomycin ointment. I prefer the Bactroban as that has worked better for me. Ask your Physician about this before trying it, but if you are prone to developing fungal infections of the skin (athlete's foot/ringworm) you may want to try to wash the affected areas with over the counter strength Nizoral Shampoo. It's possible that this product could be absorbed through the skin, and interact badly/dangerously with other medications you may be on-both prescription and over the counter-so DO check with your doctor before trying the topical shampoo, Nizoral. Do what you can to protect yourself from infections. I'm wearing a mask when I go out because there is a very nasty flu type virus going around in my community. I look ridiculous. But better to look funny than to catch a bug we can't easily overcome. And my latest labs show my white counts are dropping, so I have to be extra careful to avoid bugs. Period. I really do know what you're dealing with, Beth. My entire scalp is terribly inflamed, and all those large areas on my face are beginning to merge. It's all over my ears both inside and out, my lips, my back, my neck, a few places on my legs and arms, a nice patch has cropped up right where my port is implanted under the skin. So far my eyelids and eyes are clear, and I'll keep my fingers crossed that they remain clear, but with Iressa 500mg the rash did hit both my lower and upper eyelids. If that happens it will be very uncomfortable. And I keep reminding myself that I want to live so badly I will put up with an awful lot to be able to do so. I will do what I can to mitigate that which is painful and makes me ill, but the bottom line is I will put up with a great deal to be able to stay alive. It's absolutely worth it to me. Quote Link to comment Share on other sites More sharing options...
CharlieD Posted January 9, 2005 Share Posted January 9, 2005 Beth - So, so sorry to hear the 100 mg is reacting similiar to the 150. It doesn't sound too bad yet. Let's hope and pray to God that it levels out and begins to lighten up a bit. I've been off it for a week now and my rash is clearing up nicely using clindamycin phosphate Gel which the ONC prescribed. It really works well. The sores inside the mouth are also healing rapidly. For that I was prescribed mylanta/benedryl/lidocane mouth wash. It numbs the inside of the mouth and gives immediate relief. The stomach thing is gone and the terrible cough is just about gone also. I should be in good shape to try it again after my angioplasty next Friday. Like Fay I'm ready to withstand a lot of misery if it is trashing the cancer. I know you have been through a lot so far and hopefully you can hang in there to see how this is going to play out. We are all praying and pulling for you. Keep us posted and God Bless. CharlieD Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted January 9, 2005 Share Posted January 9, 2005 Hang in there Beth. I will be talking to the doc this month about getting on that same medication. Don't know though if I could tolerate all the side effects. I have become quite whimpy through the years. I do admire your tenacity and courage. You are an inspiration to many. Cindi o'h Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted January 10, 2005 Share Posted January 10, 2005 Hey Beth, Sorry you are having a bad time again. You may want to try (well get ready for the name)- Udder Butter- Walmart carries it and it is very reasonable. It was originally made for cows. My husband swears by it. He has very,very dry skin. Hope this helps. Best wishes, Dee Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 10, 2005 Share Posted January 10, 2005 I also used Udder Cream and it was by far better than anything else I tried for dry skin. jim Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted January 10, 2005 Share Posted January 10, 2005 I got a prescription for Ammonium Lactate Cream 12%. It has been the only thing that has worked for me. From the dermatologist. Cindi o'h Quote Link to comment Share on other sites More sharing options...
CharlieD Posted January 11, 2005 Share Posted January 11, 2005 I have also used that Udder Cream for dry skin and it worked real well. It was called Bag Balm and it was developed to clear infections and sores on cows udders. Quote Link to comment Share on other sites More sharing options...
Justakid Posted January 11, 2005 Author Share Posted January 11, 2005 Guess I'll just start moo-ing! Gonna pick some up this weekend! My face is starting to change.....here comes the alien! Quote Link to comment Share on other sites More sharing options...
Haylee_38 Posted January 11, 2005 Share Posted January 11, 2005 Beth, Sorry to hear you are having more problems. You never seem to catch a break. Wishing you lots of luck the udder cream will work. My thoughts are with you. Haylee Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted January 12, 2005 Share Posted January 12, 2005 Hey Beth, Doubled check the name of that cream and it is called Udder cream. I don't know why my hubby calls it Udder Butter. Dee Quote Link to comment Share on other sites More sharing options...
CharlieD Posted January 12, 2005 Share Posted January 12, 2005 Beth - About the moo-ing. Please don't moo too loud as there are a lot of big ol Bulls out there just waiting CharlieD Quote Link to comment Share on other sites More sharing options...
Justakid Posted January 17, 2005 Author Share Posted January 17, 2005 Tarceva update for thos who are interested - Rash has spread to breasts and down the center of my back, it's like a stripe. Mouth no longer hurts and isn't red. Hand are starting to peel again...never got the rash on them like last time, but they are starting to peel. Rash on scalp...I think - I have some much hair now it's hard to tell ). Scalp hurts, feels like needles stabbing me (same as last time). Body becoming increasingly dry, elbows cracking. Forgot the udder buddy cream this weekend, need to go get some. Will keep you posted................... Quote Link to comment Share on other sites More sharing options...
TAnn Posted January 17, 2005 Share Posted January 17, 2005 Beth, It sounds like the 100mg is treating you a little better. I'm on 150mg and it looks like I have the measles. My chest has tiny little bumps, my belly(from one side to the other) has large bumps and I also have quite a few on my arms and some on my legs. Small ones on my upper back and none on my lower back. (yet-I'm guessin!) My face has a sunburn type rash on my cheeks and over my nose. Skin is really dry all over. Little bumps like my lips and chin too. I don't even recognize myself in the mirror anymore, add to that a bald head (will my hair EVER come back?) and I'm quite a sight! I, for one, am just hoping that the rash calms down by Spring, or I'll never get to wear short sleeves again! Hang in there, I'm on this ride with ya! TAnn Quote Link to comment Share on other sites More sharing options...
Justakid Posted January 17, 2005 Author Share Posted January 17, 2005 TAnn- You are stronger then me, you get the crown! You deserve it! I know what you mean about the hair, fortuneatly mine has come in a lot since last time. My Oco told me that those patients he has perscibed this for since my last break out, he has started them at 100mg because of my reaction. He said no one else has reacted as bad as me but he thought it would be a good idea after my experience. They're all whimps! Let's ride this wave out! 10yrs from now we'll still me here saying remember when the Tarceva made us look like aliens? And laugh about it. Quote Link to comment Share on other sites More sharing options...
CharlieD Posted January 17, 2005 Share Posted January 17, 2005 Beth and TAnn - I have been anxiously awaiting your updates and was hoping for better news, but I guess it's not all that bad. Both of your symptoms sound familiar. I pray that they will lighten up. You are two brave chicks putting up with it, but if it works and results in stable or shrinkage it will be worth it. I'm past my angioplasty and scheduled for a CAT scan Thursday and off to Roswell Park next week to see where I stand. Don't know if I'm stable or what. Feelin great so can't and won't complain. You both are in my thoughts and prayers. Stay tough and keep us posted. CharlieD Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.