CancerCompass message board discussion started by Everose on 12/10/2005 http://www.cancercompass.com/message-board/message/all,3714,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband was diagnosed with nsclc in January 2004. It was in his right lung with no spread anywhere else. He had chemo, surgery and radiation as some cells were left behind after the middle lobe was removed. He was fine till a few months ago when the cancer came back. He had one chemo but couldn't tolerate any more so was put on Tarceva 3 weeks ago. He can't have any more surgery or radiation. He has a rash, the shakes and an overall nervous feeling with depression. He's on steroids too to ease his breathing. Still no spread that we know about. What side effects are to be expected from tarceva other than rash? Eve Everose Sat, 10 Dec 2005 00:00:00 GMT Eve: I have been on 150 mg of Tarceva since May of 2005. Here are some side-effects that I have experienced: (1) rash - which is like little pimples or roseasia (2) diarreha - it comes and goes (ha!) (3) hair thinning - my doctor even told me that one patient lost all of her hair! (4) little paper-like cuts on the tips of your fingers --> treat with liquid band-aid (5) excessive dryness - for the skin, I use Aveeno Daily Moisturizer; for the nasal passages, I use Ocean; for my feet, I use Epsom salt and then a foot moisturizer (6) red sores by the side of your toenail - feels like an ingrown toe nail; I use the face ointment prescribed by my doctor (7) fatigue - I've reduced my work week to 24 hours; this affects each person differently... I hope this helps! Take care - Kim Kimflorida Fri, 16 Dec 2005 00:00:00 GMT Hi Everose, my wife has been on tarceva for 10 months now. She has been extremely lucky in that she's not had hardly any facial skin rash that all our Dr's and nurses said was the most often seen symptom. She is very tired and get's fatigued quite easily. She also has the spells of on/off diarreah too. One of our biggest problems is keeping her weight up. She was a small framed - 102 lbs woman at the beginning of our fight and many many times I can't get her to eat "enough", so her weight fluctuates between 90 and 96 lbs. We use Ensure and she tries to eat a little, 4 - 5 times a day. She also has the "shakes" at time - - - not all day long, just when she goes overboard and get's extremely fatigued, after a bad coughing spell or even when she yawns or sneeze's too much ! She does have the painful skin problem on her toes (like Kimflordia had) and that's a big problem as she's got a toe fungus also ! Using a scrip. med for that but it's not helping too much. Many day's I have to push and shove her to get her going ! Don't let your husband get too depressed - - if he does let your Doctor's know !!!! Her cancer is inoperable too and has spread to the bone and liver. They gave her 2 yrs. in Feb ....... so I told them we'd come back in 5 yrs. just to prove them wrong ! ha! You hang in there, enjoy the Holiday's and if you agree - - keep praying ! We've got 10 grandkids all up in Indy and my wife use's that as her motivation to keep fighting -(maybe a little "me" too). We'll keep you and your husband in our prayer's ! Fighters Sat, 17 Dec 2005 00:00:00 GMT Kim - Thanks for your answer to my question about the side effects of Tarceva. My husband hasn't been on it long enough for all those things to appear. Is your tumor shrinking? How soon did you know and how did you know? He is now experiencing a feeling as if he is very, very cold and noone seems to know what to do other than telling him to dress warmly and put on blankets. I'm wondering if this is another side effect or maybe from his depression? Who knows? It is a daily battle, isn't it? Eve Everose Sat, 17 Dec 2005 00:00:00 GMT Fighters (and what a great name) Thanks for your answer to my question about the side effects of Tarceva. My husband is having the weight problem also. He started at 165 and is now down to 130. He is very cold all the time and the doctor thinks it is because of the weight loss. Do you think the Tarceva is helping shrink your wife's tumor? That is certainly the result we are hoping for. We have 6 grandchildren and they are also an inspiration for us. I - like you - would never accept anyone telling me the amount of time I have to live. Just keep fighting and keep a positive attitude. The role of caretaker is not an easy one. We have been together 50 years. I'm not giving up!!!! Eve Everose Sat, 17 Dec 2005 00:00:00 GMT Eve: I am always cold as well - but I have been cold-adverse most of my life. Just like the "Fighters" message, I get the chills when I push myself too hard - I will usually get a low grade fever (100 - 101) and the chills. I bundle up and go straight to bed. The next day, I am back to "normal". With regard to tumor shrinkage on Tarceva, mine has been slower than most... My lung tumor initially shrunk 15% while my other mets (rib, 4 on spine and 1 on brain) stabilized. Since then, everything has continued to stabilize. Everyone seems to react differently to the drug - I've read some postings on here where the patient can no longer even see the tumors on the CAT scans! What a blessing! I will pray that your husband experiences significant shrinkage of his tumor.... - Kim Kimflorida Mon, 19 Dec 2005 00:00:00 GMT Kim - Thanks for your input. My daughter and I have been talking at great length to my husband and doing all kinds of research on the Internet. We have finally figured out that when he says chills, he is talking about an inner shaking that has nothing to do with the temperature. His body temp is always normal. His hands, feet, etc are warm. We think this has to do with the severe depression he has been in since his tumor came back. We are going to see a psychologist and try to get him some relief. The shaking is an intense inner tension I think. Eve Everose Mon, 19 Dec 2005 00:00:00 GMT Has anyone experienced shortness of breath or wheezing on Tarceva? My husband has been on it about three weeks. He has a terrible, terrible, rash on his face and upper body. He feels though that the wheezing and shortness of breath is worse. He is very tired and has no appetite since starting the Tarceva. Are these symptoms that will be less severe as the Tarceva gets in his system. His cough is just about gone. Bettylou Sat, 31 Dec 2005 00:00:00 GMT Hi Bettylou, I have been on tarceva since Nov. I also have had rash ect. Have not had shortness of breath. I am working with a dermatologist to treat the rash. Like your husband, it drives me crazy. They have taken cutures off my back and sent them to the lab so they can determend what course of action to take. I will know something more next week. So far this is what I'm doing. They have put me on SalAc(Salicylic Acid UPS,2%)It is made by Medcis. I wash with it 2 times a day and then use Klaron (Sodium Sulfacetamidelotion,10%) after I wash. Made by Aventis. I wait 10 min then rub myself with cream. This will help alot. When I find out more I will pass it on. God Bless Jim Jim Hoff Thu, 19 Jan 2006 00:00:00 GMT Jim - My father has just started tarceva and is experiencing the rash. I was wondering if you have learned anything more about how to treat this side effect. Thanks for your help. Erin Erin97 Wed, 15 Feb 2006 00:00:00 GMT