CancerCompass message board discussion started by Annied on 8/26/2005 http://www.cancercompass.com/message-board/message/all,2826,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi: Has anyone experienced shedding hair, using Tarceva? I have been on Tarceva for 2 1/2 months and I am shedding every day. Not in clumps, just strands. Any advise out there for this problem?? My small mass in my upper left lung has gotten smaller since taking Tarceva. I have gotten over most of the terrible rash (as a last resort I tried bacitracin) and for me it has helped. I feel very lucky that so far the Tarceva is working and shedding hair is a small price to pay. I just hope it keeps working. AnnieD Annied Fri, 26 Aug 2005 00:00:00 GMT Annie - I was on Tarceva for 3 1/2 months and did not have any problem with falling hair but it was not working for me either. I never developed the rash either. The first time I had chemo, my hair grew back in completely, just like it would normally. After my second round of chemo (first Gemsar and Taxotere which didn't work and second Carboplatin and Taxol) my hair has hardly grown at all. It has been 11 months since I completed those therapies and my hair is still only about 1 inch long. I hate it! dotdot Dotdot Fri, 26 Aug 2005 00:00:00 GMT DotDot: Sorry to hear that it didn't work for you. Every one has such a different make up, it works for some and not for others. I have not had chemo or radiation. It was my decision not to have it and try Tarceva. I was not a smoker and most likely a victim of second hand smoke (I am sure among many others). Thanks for taking the time to get back to me. As I said, shedding is a small price to pay if this works. I lost my son to Lung cancer two years ago. He was a smoker for many years and gave it up 7 years ago. He was only 49. Hang in there and never give up. I know I won't. AnnieD Annied Fri, 26 Aug 2005 00:00:00 GMT Me too! I have been on Tarceva for 3.5 months and my hair is falling out - not in clumps, but strands, like you. I am amazed at how much hair is left in the shower or on the floor after blowing my hair dry. I checked the Tarceva web-site and it only states that Tarceva will not cause "complete" hair loss! I discussed this side-effect with my doctor last week - she informed me that hair loss is a common side-effect along with brittle hair. She did not have any advice for stopping the hair loss. I'm going to my hair stylist tonight to get a haircut that might suit my thinning hair. I agree, it's a small price for having it shrink my lung tumor! Kimflorida Tue, 30 Aug 2005 00:00:00 GMT Thank God! (not that you are loosing your hair) I was beginning to think I was the only one. I don't have an answer either. I am very careful and don't use any commercial shampoo. Sent to Vermont Soap works for their Shampoo bar. No chemicals. And also I put olive oil in my hair about an hour before I wash it and rub it (gently into my scalp) it seems to slow it down. My next step is that I am considering a wig if it gets much worse. I have very fine hair. Use warm water to wash. Also when you rinse, do it with cold water, it constricts the blood vessels in you head. Not the answer but a little bit of help. Again a small price to pay. Hang in, this too shall pass! AnnieD Annied Tue, 30 Aug 2005 00:00:00 GMT I also had hair loss on Tarceva. A few months into it, I lost about half my hair,strands at a time. I had thick hair. I got a wig and prepared for baldness. Then my daughter, who is a hairdresser, said to try Alterna Life products (they have a web site). She got me the shampoo, conditioner, and liquid to rub on after. My hair has not fallen out since. The products are very expensive, but she gets her discount. Perhaps the hair was ready to stop falling out anyhow. Since then, it has started to grow back. When I had thinning hair, I changed to style. People could not notice. I also had trouble with other hair falling out including eyelashes. Everything has grown back even tho the dosage has increased. I go to a large cancer center and they said I was the only person losing their hair on Tarceva. Since then, one other person has hair loss and I am hearing of it on discussion boards. I am doing beautifully on Tarceva for 9 months. Breathe much better. I was not a smoker. I am interested in hearing from anyone with inner eye problems or toe problems on Tarceva. Thanks. Bikerchick Mon, 19 Sep 2005 00:00:00 GMT I've been on Tarcevia since 4/1/05 and doing great. My lungs for the first time in nearly 5 years are clear. Tumor markers are less than 1.7. What a miracle. I lost my hair on gezmzar and naveline before tarcevia and it is just not growing back. I had a bad break-out on the body and face. I'm dropping to a lower dose (100 mg) per md's instructions. You should see my eye lashes, they are long...and thick. Having some trouble with the eyes but I know it is a small price to pay to still be alive after almost 5 years. Mattie Tue, 01 Nov 2005 00:00:00 GMT My mother is a lung cancer patient. She has been on Tarceva for about 2 1/2 months. She too has recently noticed some hair loss. We are interested in knowing what specific hair care products you are purchasing from Alterna. Are they able to be ordered online? Thanks Dianp Mon, 07 Nov 2005 00:00:00 GMT Another request for which shampoo, conditioner and liquid of the many Alterna Life Products that was helpful in hair loss in patients taking Tarceva. Corny Sun, 19 Feb 2006 00:00:00 GMT i am of course very interested in knowing what shoampoo and so forth you have been using that helped. the tarceva is working but for the pimples on my face and the newly falling out hair. i would sure like to help the hair from falling out if i can. thanks for your tip. --kati Katikan Fri, 11 Aug 2006 00:00:00 GMT this is my second attempt. i don't know if the first one went thru. i'm new to this site and have experienced "techniichal difficulties" :-) please excuse me if you already got the previous attempt. i was asking for the name of the shampoo etc. your daughter got for you. the company makes many different types. which one are you using? thanks for the info. --kati Katikan Fri, 11 Aug 2006 00:00:00 GMT Hey Bikerchick - What kind of toe problems? My mother's big toe has started to hurt and bleed. After 4 1/2 months on Tarceva, her hair is just beginning to fall out. Also, her fingernails have all split in the middle (the part of the nail that extends beyond the finger). Thanks for the tip on Alterna Life products. We'll try that. Sds0613 Wed, 18 Oct 2006 00:00:00 GMT How are all of you affording the cost of Tarceva? My mother was just prescribed Tarceva. She is 89 years old and on a limited income. After the insurance pays 1/3 the cost of Tarceva, she will have to pay $2,400.00 out of pocket for a 30 day supply. She can't afford this. Msedsel Fri, 17 Nov 2006 00:00:00 GMT My mother is on Medicare, so that pays for it. Otherwise, we would never be able to afford it. Sds0613 Mon, 27 Nov 2006 00:00:00 GMT  On 11/27/2006 Sds0613 wrote:My mother is on Medicare, so that pays for it. Otherwise, we would never be able to afford it.I am just wondering how you were able to get all of the cost of Terceva paid for by Medicare. My 88 year old mother-in-law can only get a portion paid for and still has about $1700 short for a 30-day supply.  I would certainly appreciate a response.  Thank you so much. Rdy2ret60 Sun, 07 Jan 2007 00:00:00 GMT Hi, I've been on Tarceva about 3 months and I'm going through all the side effects, too, but I am grateful to say that the tumors were small and are no longer visible. My hair is falling out -- I vacuum twice a day so I don't get depressed looking at it on the floor. I will try that shampoo that stopped hair loss! Once the worst part of the rash disappeared, I found I was mostly still troubled by the blisters on my eyelids. The doctor gave me clindamycin phosphate topical lotion 1% and twice a day, after I was my face, I dab some on the affected area gently with a Qtip. This has greatly reduced the inflammation. I also use a bit around my nose and chin, the main places on my face that I am still getting the pimples. I preferred doing this to taking antibiotics orally every day. I have a rash all over my back, but I am not concerning myself with it right now. Has anyone found that Tarceva affects their thinking? I find that I make mistakes I wouldn't ordinarily and that I can't keep all the balls I ordinarily juggle in the air. Sometimes I mispronounce words. I have had to let a lot of things go and keep things fairly simple. I'm a working mom, so that's a challenge. Sometimes I have these dreams that I've made a huge Tarceva-inspired mistake and I'm trying to fix it. I know it sounds odd, but I'm curious if anyone feels like their brain function has been affected. And also the fatigue--is anyone else struggling with fatigue? Regarding the cost, I know Genentech has a program to help some people get the medication for free or at a better cost. You need to contact them and see if you qualify. There's contact information on their web site. Chirpyone Thu, 01 Feb 2007 00:00:00 GMT I'm taking Tarceva for my glioblastoma and had only lost single strands (many single strands) until recently.  Yesterday I started gently pulling my hair and it came out (painlessly) in small clumps.  Now I have a bald spot over my surgical spot!  Could Tarceva shrink the hair follicles?  Well, good luck! Nickio Sat, 01 Sep 2007 00:00:00 GMT I'm sorry to hear that you are having trouble with Medicare paying.  Go to Genetech's website or spoconline.com.  They have information about programs that can help pay.  Good luck and god bless! Nickio Thu, 13 Sep 2007 00:00:00 GMT