Fay A. Posted March 4, 2005 Share Posted March 4, 2005 Sometimes when we post we are very graphic in our descriptions of what is happening to either ourselves or our loved ones. I can speak only for myself, and I want to explain my reasons for going into so much detail and being as specific as I can when I relate what is occurring. I do so because I know that someone else may be experiencing something very similar, and maybe what helps me may help them. It's also why I am so completely grateful to others who share their experiences in fine detail....because what helped you may help me. I know we are all different, that's why I used the words "...may help...". Because what might help is a heck of a lot better than having no help at all. I am back on Tarceva. And last night it produced a new problem. My right knee has been excrutiatingly painful off and on for a few days. Last night as I was getting ready for bed I glanced at the back of my leg and there was (is) an angry red rash that is raised like a weal. Last night it was just behind the knee to just below the knee. Today is is from the thigh to the ankle. There is a small tumor just behind the knee that about the size of a quarter. The whole area is so swollen that the tumor is being pushed out from inside the knee towards the skin. I think that the swelling and rash from Tarceva would not be so painful if the tumor were not there. The rash is down the entire left leg today, too, but no horrific pain from inside that knee. Same strange rash is on my left elbow, too. Still waiting to see the doc about the tummy trouble. Has anyone else on Tarceva had a very strange rash? This isn't like the rash that is on my face and scalp. Quote Link to comment Share on other sites More sharing options...
mayos Posted March 4, 2005 Share Posted March 4, 2005 Details are good for me Fay. I agree we can share our experiences on this board and help each other to cope with the fear of the "unknown". Cancer treatments can scare the wits out of the best of us. Thanks for your thoughtfulness. I hope someone chimes in with some help with those awful Tarceva side effects....you sure are suffering. I'm so sorry I can't help. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted March 4, 2005 Author Share Posted March 4, 2005 The side effects have been rough, but I'm doing my best to live around them. Some days are easier than others. But every day has something precious in it, and so far I've been lucky enough to find it. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted March 4, 2005 Share Posted March 4, 2005 I appreciated details when I was up in the air and wondering. I believe it is best to give the warning, so those who don't want to know can stop reading, then allow info to those who do want it. Fay, I so much want this problem to pass for you. Prayers and good wishes to you. I am sending you a PM. Love, Margaret Quote Link to comment Share on other sites More sharing options...
Justakid Posted March 4, 2005 Share Posted March 4, 2005 Fay, I so hope that the Tarceva works for you! I also had a horrible nasty red bumpy rash behind my knees that went sown to my ankles. Was actually quite painful as well. Also appeared on my elbows. And mouth, groin...(sorry) all the "hot spots". Once the doseage was decreased to 100mg I did a little better. ANd the doctor did tell me it could take up to 6+ months to get adjusted to it. My rash did not itch but at times was so painful I would take a pain pill. It has been several weeks (can't remember the date) when I stopped taking it and my skin is still so dry it's nasty. Keep moist, it helps. Praying that it works for you! Graphic is best.........it helps everyone! Quote Link to comment Share on other sites More sharing options...
Ann Posted March 4, 2005 Share Posted March 4, 2005 Fay, I'm so very sorry you are having this terrible reaction. Hope it's something that the doc can make go away quickly! I am so glad you gave your opinion in your post about detailed information. Sometimes, there are questions asked that I had to deal with but I worry about going into detail for fear it might upset someone. I really hope your rash goes away really soon! Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted March 4, 2005 Share Posted March 4, 2005 Fay, I really hope the Tarceva works and I hope you get rid of these side affects soon. Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted March 4, 2005 Share Posted March 4, 2005 Fay, Sorry that you are having problems with that nasty old rash. Hopefully it will improve soon. Best Wishes, Dee Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted March 4, 2005 Share Posted March 4, 2005 Prayers that Tarceva does it's thing for you Fay, sorry to hear your having a hard time of it. Rich Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted March 4, 2005 Share Posted March 4, 2005 I agree, Fay, about the detail thing. I've always been that way - very open about things - for the same reason - maybe something from your detailed experience can help another person. plus I'm just an open person. OK, the rash I can understand, but please get that tumor thing checked out, I don't like the sounds of that thing. please keep us posted. We love you, Karen Quote Link to comment Share on other sites More sharing options...
Wendy Posted March 5, 2005 Share Posted March 5, 2005 Fay, Boy the weird rash sure doesn't sound fun! I am sending you good wishes that a speedy recovery comes your way. Wendy PS - I don't mind the graphic's either, it really does help me know what others are experiencing - unfortunately it isn't a "pretty" little illness with sweet little side effects Hang in there! Quote Link to comment Share on other sites More sharing options...
Snowflake Posted March 5, 2005 Share Posted March 5, 2005 Fay, Not knowing any of the long-lasting side effects of any of the darn drugs out there is tough. I have rashes on both shins, itchy and nothing seems to make the itching stop...shins and around the sides of my legs and on my outer thighs, about where my hands hit. Lumpy, bumpy and itchy...I scratch until it's raw and it STILL itches. I am not on Tarceva, but you and I have compared Iressa issues before. I wonder if the skin problems are carry over, with yours being a bit more aggravated by the Tarceva? I hope it all clears up and that tumor thing ends entirely! xxoo, Becky Quote Link to comment Share on other sites More sharing options...
teresag Posted March 5, 2005 Share Posted March 5, 2005 Rashes behind the knees and in the groin sound like a problem aggravated by moisture in the skin folds. It could help to wash and dry those areas carefully several times a day with a soft cloth. Just my impression. Quote Link to comment Share on other sites More sharing options...
TAnn Posted March 5, 2005 Share Posted March 5, 2005 Fay, I completely agree that we should share the details. I always wonder if it's only me suffering from specific side effects. It can only help! I have not had a rash w/Tarceva that "hurt". Mine is really bad and when the bumps go through their cycle, they turn into a bruise before leaving and making way for new "bumps" The bruising doesn't hurt, though. I'd be concerned about the swelling. I have not had alot of swelling with the rash. I've been on Tarceva for 2 full months now and the good news is that my really DRY skin is much better now. I use Aveeno shower gel and it seems to be working quite well. Oil of Olay also has a skin conditioner that you put on in the shower and rinse off. It feels really good on the yucky skin! Good Luck Fay, hang in there! TAnn Quote Link to comment Share on other sites More sharing options...
TAnn Posted March 5, 2005 Share Posted March 5, 2005 Fay, I completely agree that we should share the details. I always wonder if it's only me suffering from specific side effects. It can only help! I have not had a rash w/Tarceva that "hurt". Mine is really bad and when the bumps go through their cycle, they turn into a bruise before leaving and making way for new "bumps" The bruising doesn't hurt, though. I'd be concerned about the swelling. I have not had alot of swelling with the rash. I've been on Tarceva for 2 full months now and the good news is that my really DRY skin is much better now. I use Aveeno shower gel and it seems to be working quite well. Oil of Olay also has a skin conditioner that you put on in the shower and rinse off. It feels really good on the yucky skin! My biggest complaint lately with the Tarceva is the bumps are in my nose and it is really drying out and bleeding. Last night could hardly breath! Good Luck Fay, hang in there! TAnn Quote Link to comment Share on other sites More sharing options...
Lisa O Posted March 5, 2005 Share Posted March 5, 2005 Fay, I am so sorry you are suffering so much. It sounds awful. I do appreciate when others share. Knowing the experiences of others has comforted me and probably saved me several times. Lisa Quote Link to comment Share on other sites More sharing options...
elnodel Posted March 5, 2005 Share Posted March 5, 2005 Please, please, please, everyone -- continue to share all the details, ugly and otherwise. It's one of the things that makes this site so invaluable -- you get to see what others are going through, you get to share what you're going through and you get to understand that you're not alone and sort out what is unique (very little), what is widely shared, what is ordinary and almost humdrum and what is crucial and demanding of immediate attention. Fay, I hope that your body begins to adjust to the tarceva soon; its sounds terrible. Let's hope that it's doing in the cancer as well as your skin. The experience that others have had sounds promising but I agree-- get that tumour checked out! Ellen Quote Link to comment Share on other sites More sharing options...
Fay A. Posted March 6, 2005 Author Share Posted March 6, 2005 I'm seeing the Orthopedist next week for the shoulder and the tumor behind the knee. And as long as Tarceva keeps the cancer at bay (and I get the tummy trouble under control) I'm going to stay on it. It is SO worth it. Quote Link to comment Share on other sites More sharing options...
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