CancerCompass message board discussion started by Latina ne on 9/8/2005 http://www.cancercompass.com/message-board/message/all,2903,0.htm Fri, 21 Nov 2008 00:00:00 GMT Fri, 21 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello, I am new to this site so any information would greatly be apprciated. My mom is on traceva as well she started the end of July and the only thing we have noticed it seems that her cough is more presistant, her skin is dry and now we are seeing some breakage on her face like little pimples. Does anyone have any of the systoms above? Latina ne Thu, 08 Sep 2005 00:00:00 GMT Hello - My mother has been taking tarceva for 10 days. She does have a small rash on her nose. She is expiencing a lot of fagtue and hair lose. Has any one else expierencing these symptoms? Swt_mouse Fri, 09 Sep 2005 00:00:00 GMT I am so thankful that my mom hasn't experinced any of the rash that others talk about. But she is having a little breakage that looks like pimples. One thing that really bothers her is the cough it seems like some days are better than others. Thanks.. Keep in touch.. Latina ne Fri, 09 Sep 2005 00:00:00 GMT Oh! yes my mother is still having hair lost... and lately seems very fatigued Latina ne Fri, 09 Sep 2005 00:00:00 GMT Hello, My mum is also on Tarceva, and is experiencing major fatigue. Her skin is very dry all over her body. She is also experiencing a major loss of apetite. Is there a way to increase her apetite & are other patient also experiencing this? Denisev Sat, 10 Sep 2005 00:00:00 GMT I was on Tarceva for 2 months this summer until the CAT scan showed my lung cancer was progressing and I am now on Alimta (IV) instead. Four days after starting the Tarceva, I developed a fine case of facial acne which I was very happy to see - it seems as if Tarceva only works in those who develop a rash (but not everyone who gets the rash is benefited). I used the Brevoxyl-4 Creamy Wash (prescription) which really helped the face. I did get a staph infection of the scalp from the spreading rash which required IV antibiotics. For the dry skin, I took Aveeno oatmeal baths and used the Aveeno lotion. Tarceva also depressed my appetite - you have to work at this to keep that weight up. I keep little pudding cups and yogurt around, and add dry milk powder to milkshakes with ice cream. Some foods just don't taste right - you need to experiment - I have found the taste changes are unique to each type of chemotherapy I take. Didn't realize how fatigued the Tarceva made me until I went off it - but if the drug helps your cancer - it's just something you deal with. Take naps and take it easy. Some people also get diarrhea with Tarceva - mine was controlled okay with Immodium. My cough is better off the Tarceva also - but that's hard to evaluate. Maybe my new chemo is helping - but also I started using an albuterol and a steroid inhaler along with Tessalon Perle and Tussionex syrup for the cough. Hope this info is useful. Truckin Sat, 10 Sep 2005 00:00:00 GMT Also there are medications to improve appetite. I was prescribed Megace suspension but haven't taken it - preferring to work harder at eating then taking another medication. There are also others that your mother's doctor could prescribe. Truckin Sat, 10 Sep 2005 00:00:00 GMT If your mother's cough is getting worse or increasing tell your doctor right away. They might do a ct scan to make sure everything is okay. I do not think that is a side effect though it might be. diane Diane7 Sun, 11 Sep 2005 00:00:00 GMT Definitely agree. Always good advice to check in with the doctor if your symptoms get worse or are affecting your quality of life. Also, make sure you take your temperature daily - even if you don't think you have a fever. You want to catch any infections (pneumonia, etc.) early. I haven't read anywhere that cough is a side effect of Tarceva - although interesting that several people on the list serve have mentioned it. Definitely a side effect of lung cancer. Ha! Truckin Sun, 11 Sep 2005 00:00:00 GMT Here is an interesting article on the Tarceva "rash": http://theoncologist.alphamedpress.org/cgi/content/full/10/5/345 I was diagnosed with Stage IV NSCLC on 5/19/05 - I also have the EGFR mutation. I have been on Tarceva for 4 months - I have had 2 scans to check the result - the first scan showed my lung tumor shrank by 15%; the last scan showed that the lung tumor (as well as mets to my rib, spine and brain) stabilized. I have an acne-like rash that migrates - one week it will be really intense on my face, then it will move to my arms and upper chest, then it will move to my lower legs and toes.... and then back again. My skin is very dry as well. I have tried over 15 different moisturizers and found that Aveeno Daily Moisturizer is the BEST! I also use Aquafor for my nose when it is really dry and flaky, but Aquafor is very greasy... I use Ocean Spray for my nose because my nasal passages are also dried out - so much so that I am getting bloody scabs (yuck!). I am also experiencing hair loss - not in clumps, just lots of strands at a time. I have noticed that the hair falls out easily from those areas with the rash outbreak - such as my temple area. I have diarreha on occasion - but it usually comes and goes quickly (no pun intended!), so I do not use Immodium. I am experiencing fatigue - I initially reduced my work schedule to 6 hours a day, 5 days a week. When I was completely exhausted by Thursday and had difficulty staying at work the entire day, I further reduced my work schedule by taking Wednesdays off. The extra rest in the middle of the week helps keep me going.... I did experience a period of loss of appetite, especially at dinner time, for a couple of weeks. I tried to make up the calories at breakfast and lunch. My appetite seems to be back to normal now. I hope this information helps. Take care! - Kim Kimflorida Mon, 12 Sep 2005 00:00:00 GMT I have NSCLC. I was on tarceva for 2 weeks and developed a resperatory problem that put me in the hospital for 2 weeks. I was on a ventolator for 1 week. They thought I would not come out of it. I am home now and doing ok but on O2 and hope to recover from the taxceva problem. The MD's tell me I should recover - I am getting better slowly. The literature on tarceva claims this is a side effect that effects a small amount of people. Well it effected me. Robert j Mon, 12 Sep 2005 00:00:00 GMT Kim, You sound like you have experienced some of the "side effects" of Tarceva. I am into my 3rd month taking Tarceva and I have seen the lovely "rash" and dry skin. I now have a new question....has anyone had probems with your toenails? I thought my big toe got infected from working in the flower beds, but now, 2 weeks later my other big toe is starting to get an "ingrown toenail" look. It is the same as the other toe. I went to my internist and she gave me an anitbotic. I go to my oncologist next week (2 month intervals), and I will ask him. But, I just wanted to see if this is me or the tarceva. Blessings to all!! Lana Sparky Sat, 17 Sep 2005 00:00:00 GMT Sorry about that, my computer did not show that the message went through!! So Sorry, if I could erase them I would. Sparky Sat, 17 Sep 2005 00:00:00 GMT kim, with stg 4 disease do you find it is worth feeling so lousy? my mom has stg 4 with mets to brain but she doesnt have enough energy to leave the house more than her chemo day. would it be better to just live out lifr as is, does your family push you, are you waiting for them to say enough or is it what you want. Daughter#2 Sun, 18 Sep 2005 00:00:00 GMT Oh my goodness! I've got it too! I'm so glad you wrote about it.... This confirms for me that it must be a reaction to Tarceva - especially when I got another sensitive swollen spot on my second toe on my other foot! The first spot was on the big toe of my right foot - it is very red and has some swelling - it also looks like the skin is peeling away from the sore spot. I have a scab closest to the nail and thought it would heal on its own. Finally, my husband suggested that I clean out from under my toe nail and when I did, puss came out. I wonder if I had a Tarceva "pimple" underneath my nail? Anyways, this thing has taken FOREVER to heal... I don't want to mess with it too much because it hurts a lot and I don't want to cause an infection. But, I find that after it is moistened by a hot bath or foot soak, it is easier to touch and clean - I have been taking off the excessive scabbing and then putting antibiotic cream on top. It is finally going away! What did you do? - Kim Kimflorida Sun, 18 Sep 2005 00:00:00 GMT Dear Daughter #2: I'm sorry to hear that your mother is so fatigued. I am not taking "traditional" IV chemo yet and have not experienced all of those dreadful side effects. My doctor prescribed Tarceva from the time of diagnosis (5/19/05) and I have been taking one pill every night to this very day. I also did not have any symptoms of lung cancer - such as a cough - before diagnosis. So, other than fatigue, I am doing great! I do feel that it is worth my efforts to fight this disease as I have a 1 year old son - he is my first, and now, will be my only child. And, even if I did not have him to live for, I would want my family's support and encouragement to fight this disease. Both my grandfather and grandmother on my mother's side died of lung cancer - so I know exactly how it's going to be at the end and, I'd be lying if I said that I was not afraid and apprehensive. I just cherish each day that I have on this earth to be with my loved ones and hope that I can make a difference before my time is up... It is very important for the people around to be as positive as possible - it has helped me to not dwell on my situation and get out there and live life. I know that your mother is very fatigued, but I'm sure she is enjoying spending extra time together with you, her daughter. This could be a very special bonding period for the two of you... Take care - Kim Kimflorida Sun, 18 Sep 2005 00:00:00 GMT Kim, I am so glad and so sorry to hear that someone else is having this side effect. With cooler weather coming on I was starting to wonder what socks look good with flip flops!!! But, I think I have found something that is helping. When I started getting the "rash" on my face (7-05) my Dr. prescribed clindamycin phosphate gel. I had forgotten about it since my face is doing a little better. Thought about it yesterday and put it on both toes and they feel and look so much better. I hope this gel is the answer. Thanks for the response, and I hope yours is getting better! Blessings to All! Lana Sparky Tue, 20 Sep 2005 00:00:00 GMT Great advice - I too had forgotten about the gel... I will give it a try tonight. Thanks! Kimflorida Tue, 20 Sep 2005 00:00:00 GMT It was soo nice reading that you are working in the 'garden'. I wish I could do that. I have Stage 4 Lung Cancer - non small and can hardly manage just the bare essentials. Shower, dressing, walking a short distance, etc. I am on Tarceva and have been for 2 1/2 months now. I go for my first CT Scan in a couple of weeks since taking Tarceva. I'm hoping for a good review. My question is: I've read all the symptoms that everyone has listed. The rash, the dry skin, bowel problems, and extreme fatigue. For the past month or so, I've been having a weird symptom that has left me 'freezing' most of the time. During the hot weather - I was bundled up in a jacket and sometimes hat and socks, plus having a small portable heater at my feet. I am always soooo cold. MY blood test showed a low thyroid but my primary doctor has ordered a different blood test and doesn't think it has anything to do with Thyroid. Has anyone else had this problem? I'll find out more when my test comes back. Would appreciate an answer ASAP. Thank you. Jeanne Jelly Bean Tue, 20 Sep 2005 00:00:00 GMT I have NSLC, specified as BAC = Bronchiolo alveolear carcinome. I used Tarceva for 14 months and got all side effects. Rash-nose bleeding - new skin on hands and feet - nausea - diarrhoea, etc,etc. Besides of this I had a good time. As soon the side effects stopped it turned out that I got resistent for Tarceva. So be pleased to get side effects. It is a sign that it works. Sloens. Sloens Sun, 25 Sep 2005 00:00:00 GMT Aside from all these other side effects of Tarceva I've had 'freezing'. See Message #19. Now it looks like I'm having something that would compare with the 'ingrown toenail' effect. Except mine is on my hands. So far I have these sores on four of my fingers - and one on my toe. It looks like ingrown toenail, but it's not. Nothing is ingrown. First the finger splits and then it becomes 'red'. And then it looks like there is some liquid coming out of it, but hurts too much to really go further. Has another else had this problem? I have been putting some Neosporin on them and wrapping them in bandaids - that helps some. Jeanne Jelly Bean Sun, 25 Sep 2005 00:00:00 GMT Jeanne O. After almost 3 weeks of the "TOE" problem I started putting clindamycin phosphate gel on my toe and it feels and looks so much better. Went to the Onc yesterday and the remaining spots on my lungs are the same as 2 months ago. I am starting my 4th month of Tarceva. The biggest difference came after the 1st month and the spots had gotten smaller. But as long as they are not growing I'm happy. Dr also wrote a Rx for minocycline when he saw my toes. I hope that this will take it away for good. He also said if my skin was getting to be to much he would give me a break from the Tarceva for a month. I haven't had the freezing, but I have noticed I am not as hot natured as I use to be. I am meeting my husband in Anchorage tomorrow, for a week, so I guess I'll find out what my winter will be like. I use to love the cold weather, but I have a feeling this year will be different. Good luck with the toe and finger gunk!! Blessings to all, Lana Sparky Tue, 27 Sep 2005 00:00:00 GMT You mentioned that you had 2 scans done after taking tarceva and positive results were noted. How long did you take this medication before seeing those results? My father-in-law has just started the medication and is dealing with all the side effects that have been mentioned in the other messages. The most upsetting one seems to be the coughing and loss of breath with the severe coughing. His doctor mentioned staying on this medication for a year but that may change with the frequent visits. I can not imagine a year of this after seeing how difficult it is for him to breath. Kathy2 Sat, 06 May 2006 00:00:00 GMT i have the rash and dry skin and i had the pimples.. somewhat tired my dry skin is on my sides and back and face. also i have skin breakdowns in the moist areas like in the panty line under breast and underarm areas and when it happens it happens fast! does anyone else have this problem Sweetenuff58 Tue, 16 May 2006 00:00:00 GMT  On 9/9/2005 Swt_mouse wrote:Hello - My mother has been taking tarceva for 10 days. She does have a small rash on her nose. She is expiencing a lot of fagtue and hair lose. Has any one else expierencing these symptoms?I am participating in a study with Tarceva for squamous cell cancer of the tongue. I started taking either a placebo or the 150mg pill on Thursday. I didn't realize hair loss was one of the side effects. As I read these E-mails, I am getting a little worried about side effects. I undertood the side effects to watch for were a rash and/or acne and diahrrea. I realize the list of side effects includes much more. I just understood they were not very likely. Seems like I may experience much more!.  I am grateful to have y'all to learn from. Thanks. Mdmrrt Sat, 02 Jun 2007 00:00:00 GMT  I read changes in the fingernails or toenails were side effects. Nails may become darker and may develop white streaks or ridges. They may become brittle and dry and lift up from the nail bed. It is recommended to wear gloves while working with your hands (gardening and dishes).  Your chance of developing infections may increase and you might lose a nail. Hope this helps. Mdmrrt Sat, 02 Jun 2007 00:00:00 GMT  On 9/12/2005 Kimflorida wrote:Here is an interesting article on the Tarceva "rash": http://theoncologist.alphamedpress.org/cgi/content/full/10/5 I was diagnosed with Stage IV NSCLC on 5/19/05 - I also have the EGFR mutation. I have been on Tarceva for 4 months - I have had 2 scans to check the result - the first scan showed my lung tumor shrank by 15%; the last scan showed that the lung tumor (as well as mets to my rib, spine and brain) stabilized. I have an acne-like rash that migrates - one week it will be really intense on my face, then it will move to my arms and upper chest, then it will move to my lower legs and toes.... and then back again. My skin is very dry as well. I have tried over 15 different moisturizers and found that Aveeno Daily Moisturizer is the BEST! I also use Aquafor for my nose when it is really dry and flaky, but Aquafor is very greasy... I use Ocean Spray for my nose because my nasal passages are also dried out - so much so that I am getting bloody scabs (yuck!). I am also experiencing hair loss - not in clumps, just lots of strands at a time. I have noticed that the hair falls out easily from those areas with the rash outbreak - such as my temple area. I have diarreha on occasion - but it usually comes and goes quickly (no pun intended!), so I do not use Immodium. I am experiencing fatigue - I initially reduced my work schedule to 6 hours a day, 5 days a week. When I was completely exhausted by Thursday and had difficulty staying at work the entire day, I further reduced my work schedule by taking Wednesdays off. The extra rest in the middle of the week helps keep me going.... I did experience a period of loss of appetite, especially at dinner time, for a couple of weeks. I tried to make up the calories at breakfast and lunch. My appetite seems to be back to normal now. I hope this information helps. Take care! - KimI am curious what kind of job you have. When I agreed to participate in a study with Tarceva I didn't realize it might affect my job. Mdmrrt Sat, 02 Jun 2007 00:00:00 GMT  On 9/12/2005 Kimflorida wrote:Here is an interesting article on the Tarceva "rash": http://theoncologist.alphamedpress.org/cgi/content/full/10/5 I was diagnosed with Stage IV NSCLC on 5/19/05 - I also have the EGFR mutation. I have been on Tarceva for 4 months - I have had 2 scans to check the result - the first scan showed my lung tumor shrank by 15%; the last scan showed that the lung tumor (as well as mets to my rib, spine and brain) stabilized. I have an acne-like rash that migrates - one week it will be really intense on my face, then it will move to my arms and upper chest, then it will move to my lower legs and toes.... and then back again. My skin is very dry as well. I have tried over 15 different moisturizers and found that Aveeno Daily Moisturizer is the BEST! I also use Aquafor for my nose when it is really dry and flaky, but Aquafor is very greasy... I use Ocean Spray for my nose because my nasal passages are also dried out - so much so that I am getting bloody scabs (yuck!). I am also experiencing hair loss - not in clumps, just lots of strands at a time. I have noticed that the hair falls out easily from those areas with the rash outbreak - such as my temple area. I have diarreha on occasion - but it usually comes and goes quickly (no pun intended!), so I do not use Immodium. I am experiencing fatigue - I initially reduced my work schedule to 6 hours a day, 5 days a week. When I was completely exhausted by Thursday and had difficulty staying at work the entire day, I further reduced my work schedule by taking Wednesdays off. The extra rest in the middle of the week helps keep me going.... I did experience a period of loss of appetite, especially at dinner time, for a couple of weeks. I tried to make up the calories at breakfast and lunch. My appetite seems to be back to normal now. I hope this information helps. Take care! - KimI am curious what kind of job you have. When I agreed to participate in a study with Tarceva I didn't realize it might affect my job. Mdmrrt Sat, 02 Jun 2007 00:00:00 GMT