CancerCompass message board discussion started by Macdog on 12/10/2005 http://www.cancercompass.com/message-board/message/all,3713,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have been on 150 mg of Tarceva daily for almost 11 months now. Have had all the typical side effects including bleeding sores inside my nose and sores on my head. About a month ago the head sores got so bad I had thick scabs all over my scalp and it burned, itched and I couldn't sleep. My oncologist reduced my dosage to 100 mg and gave me Bactran cream to use. The sores cleared up in a little over a week and I put myself back on the 150 mg dosage because I'm scared the 100 mg is not going to keep the tumors away. I have been back on the 150 mg dosage for about 2 weeks and all the side effects have returned and I'm feeling some spots on my scalp again, nothing like before though. Has anyone else been on less than 150 mg and how did it work with the tumors? My tumors were gone in about 3 months after starting the Tarceva and I want them to stay away as long as possible. I'm really scared to reduce the dosage. I think I'm fine on the 150 mg dosage, I work full time daily and feel good. The side effects have been bearable (except when the head sores got so bad). Has anyone else had their dosage reduced? I go to see the oncologist and have a scan in a week. Macdog Sat, 10 Dec 2005 00:00:00 GMT MacDog: I have not had my dosage decrease, but I'm wondering if I should go up to 200 mg. I know that I will have an increase in the side-effects, but for some reason, my rash is not that bad anymore. I'm getting worried that it might not be working anymore - especially when everyone tells me: "Your face has cleared up!" The rash used to migrate - it would be really intense on my face, then move to my upper chest & arms, then legs and feet. Now, I have very few pimples.... Please let me know how your check-up goes. Kimflorida Fri, 16 Dec 2005 00:00:00 GMT The oncology nurse called today and said the Dr wanted me to add a perscription for Celebrex (an arthritis drug)to my daily regimine of Tarceva. He says some studies have shown it improves the effectiveness of the Tarceva. I will find out more on Monday at my appointment. My rash is much better than when I first started, most people say they don't even notice it. But it moves around like you say. A few weeks ago I had a lot of pimples on my hands and arms. When I was on the reduced dosage, all of the side effects cleared. Now the sores in the nose and the diahrrea and cracked skin on my fingertips are bad again since I started the 150 mg. again. Almost like starting all over again. I would be afraid to go higher than 150 though. My Dr said the side effects would diminish in time, but not as an indicator of the effectiveness of the drug. Will let you know the outcome Monday. Macdog Fri, 16 Dec 2005 00:00:00 GMT MacDog: How's it going with the Tarceva and Celebrex? Any problems with toxicity and/or side effects? Please update.... Kimflorida Mon, 09 Jan 2006 00:00:00 GMT I had the rash pretty noticable when I first started the Tarceva (150mg)but over time the rash on the face has pretty much gone away. I use a moisturizer with no additives called Vanicream. It is great for all the dry areas of the body. DOn't know if that has helped the rash or not. I have gotten pimples pretty bad on my forearms and hands, but right now that is gone also. I had a reoccurrance of blisters on my toes and my nails split and are ugly. Right now the worst thing is the splits and cracks on the ends of my fingers, they are so sore and last a long time. They even bleed. My oncologist said the skin problems would come and go and yes, if you get the rash they think it is working better. I don't think you have to have the rash all the time for it to work. 200mg sounds pretty strong to me, the norm seems to be 150mg. Right now I'm having bouts of diarrhea and am not sure if it comes from adding the Celebrex or not. I had bouts just on the Tarceva too. I have to watch what I eat as it seems to act up if I eat food high in fat or if I drink pop. Probably isn't good for me anyhow so it is a good reason to avoid it. Had a CT scan in the middle of Dec and it was clear like the one 4 months ago. The tumors are not visible. I'll take the side effects if I can keep those results for a long time. Are your tumors not visible also? Is your cancer just in the lungs, mine is for now. Has not gone anywhere else yet. Macdog Tue, 10 Jan 2006 00:00:00 GMT MacDog: Thanks for the update. I'm so glad to hear that your lung tumor is still not visible on the CAT scan - that's great news! Unfortunately, I have Stage IV NSCLC - I have a 2.5 cm mass in my left lung, a met on my left 6th rib, 4 mets on my spine and 1 met on my brain. I just got back from MD Anderson last week and got the good news that my brain met has not increased in size (as once feared) and, in actuallity, it has a black circular center indicating necrosis - HOORAY! When I initially began taking Tarceva, I experienced a shrinkage of my lung tumor by 10%. Everything else stabilized. From other postings on this web-site, other patients have experienced significant shrinkage from Tarceva. Since my side-effects have all but gone away, my thinking is that I can handle a higher dose and maybe have some more shrinkage of the tumor. I figure it is worth a try.... Kimflorida Thu, 12 Jan 2006 00:00:00 GMT Kim, Did you discuss the increase in dosage with your Dr's? I guess, after what you told me, it might be worth a try. After reading all the postings here, even though my cancer is considered stage IV, the only mets since the first tumor was removed have been a return in the one lung and mets to the other lung. I consider myself fortunate. My Dr keeps saying how lycky I am because the Tarceva does not have a high success rate for tumor shrinkage in most people. I will keep you in my prayers, stay in touch. Macdog Thu, 12 Jan 2006 00:00:00 GMT Absolutely! I did my research first, then presented the information to my doctor. She agreed to up my dosage to 200 mg, but wanted to see me for a follow-up visit much sooner than normal to check for toxicity and see if I receive any benefit from the increased dosage. If not, then I will go back to 150 mg - why have increased side-effects if you receive no further shrinkage, right?!?!? I posted on here several weeks ago that my side-effects seem to have subsided. And wouldn't you know it, when I go to the doctor's office, the rash is back on my face! My doctor did tell me, as well, that a reduction in side-effects does not mean that Tarceva is no longer working - she said that it is just my body getting accustom to the drug in my system, but it is still working. Anywho, stay strong and put up a good fight! Kimflorida Fri, 13 Jan 2006 00:00:00 GMT Hi MacDog- My dad started Tarceva 150mg in mid-Dec 2005. About a week after he broke out in a huge rash all over his chest and on his face (nose and cheeks, as well as behind his ears and back of his neck.) It all turned into one large scab pretty much on his face. He was extrememly uncomfortable so his dosage was cut in half as he was put on an antibiotic (not sure which one, i'm sorry!). His rash began to go away, once it cleared up and we had our followup appointment with his oncologist jan 9, he was told to hop right back on 150mg a day and has had very very slight signs of it on his skin, but nothing like the first time. I read a lot that when first on Tarceva oftentimes the skin will break out like it did the first time, but only once and once your body is used to the Tarceva it calms down greatly. He has been back on the 150mg dose for over 2 weeks now and his skin is really fine and he is more comfortable. We still need to wait till Mid-march to see how he is responsding to Tarceva since he was only diagnosed with stage iv nsclc in late november. Hope this helps you and I wish you well. Nyyankeechickee Tue, 24 Jan 2006 00:00:00 GMT SueL- One more thing- I hear the rash is more common in those who are responding well to the drug Nyyankeechickee Tue, 24 Jan 2006 00:00:00 GMT I have been on the 150 mg of Tarceva since Feb. 05. Rash on the face at the beginning and then it pretty much went away. Blisters on the toes and slight rash on my hands and other areas of the body. Splits and cracks in the skin on the fingertips. Then the rash got real bad on my scalp and turned into that big scab you described. Going down to 100 mg, using an antibiotic pill and cream...I don't know what made the scalp scab go away. Went back up to the 150 dose and the scab is back on the scalp. Not as bad as it was...yet! Sores inside the nose too which have been there on and off for months. I will live with them...there is no other choice, the pill has shrunk the tumors to nothing. I'm happy even if there are side effects. Hope it is working for your father. Macdog Tue, 24 Jan 2006 00:00:00 GMT I'm so happy it is working for you and shrinking your tumors.. How long after you went back on the 150 mg dosage did the rash come back? Wondering if my dad may not be out of the woods with the rash yet? It's been two weeks he is back on 150mg... Nyyankeechickee Tue, 24 Jan 2006 00:00:00 GMT It has been about 5-6 weeks since I went back to the 150 mg from the 100 mg. I was on an antibiotic right around Christmas for a sinus infection and I think it made the small amount of rash that had begun to appear on my head again, disappear. Now that I'm done with the antibiotic, it is coming back pretty bad again. My Dr said it is OK to skip a day or 2 of the Tarceva, but I have done that and it didn't seem to help much. Macdog Tue, 24 Jan 2006 00:00:00 GMT Hi I just read your message about splits on your fingers and toes. I have been using liquid bandaid. You will find it in the first aid section of the drug store. You apply it like nail polish. You have to keep reapplying, but it does work. I am on 150 mg of tarceva Hang in there Vette Vette Sat, 18 Mar 2006 00:00:00 GMT