cathy Posted July 19, 2003 Share Posted July 19, 2003 Hi everyone, I really need your help desperately. Dad has been in the hospital for about 5 days now. His onc wants to start him 0n Iressa. Dad has been too weak for any other treatment. They gave him this sheet of paper with the side affects on it, and nothing else. I told him I would come to my internet friends and get their expierences for him. If anyone who is on Iressa could please tell him their experience, good or bad I think it would help him. I know its his decision, thats why I want him to know first hand, Please help remember GOOD OR BAD! Thank you Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted July 19, 2003 Share Posted July 19, 2003 Hi Cathy, Bill was on Iressa and physically felt just fine as opposed to being on chemo. His side effects were an itchy rash that looked like acne mostly on his back. He had a little on his nose as well. It seemed to go in cycles as to where it was. He was only on this medicine for 60 days and due to progression of disease he was taken off of it. I pray for better results for your dear dad. Blessings to you, Peg Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 19, 2003 Share Posted July 19, 2003 Kathy, Lucie just started on Iressa this week, so there is not much yet to tell. She did get a little nauseous last night and we always suspect the newest drug, but she had a lot of sinus congestion, too, not related to meds. Good luck. Don Quote Link to comment Share on other sites More sharing options...
Carolyn Flournoy Posted July 19, 2003 Share Posted July 19, 2003 My husband has only been on Iressa for 25 days after about 14 days broke out in a few places on chest and face. Used Fay A. posting and bought all the Aveeno products seems to help. Scalp is the most trouble very ichy. Onc. told him to get scalpicin for his hair only got that yesterday so will see if that helps. Don't know if this means anything but he had a mole on his collar bone and it became very red and was getting bigger. Of course we thought the the worst. But two nights ago it fell off with no bleeding or scar. The Iressa could be doing this to his tumor too. When health won't permit chemo why not try Iressa at least we feel better that something is being done. Carolyn Husband Dx. 12-13-02 3B Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 19, 2003 Share Posted July 19, 2003 Kathy, I was on Iressa for about almost 9 months. Within a matter of days I could tell that something was different. Within a week my breathing was easier. I had a lot of foamy white or clear fluid, and these secretions made me cough a lot. After being on Iressa for a week there was a noticable decrease in the amount of fluid I was coughing up. By the middle of the second week I could breathe pretty easily and the cough was all but gone. My cough and the fluid didn't return even after I went off Iressa in January when my tumors showed growth. (unless I came down with a bug like I did back in January and February, and then again in June) That's the good news. The bad news is that my Iressa Rash was pretty bad at first. It started on my scalp, then went to my face, neck, chest, back, etc. I picked up a secondary bacterial infection on the scalp that spread to the face, so I had to go off Iressa for a few weeks until the rash and the infection was under control. The good news is that once I went to a milder soap and shampoo the rash eased up, and when I was given a prescription for an antibiotic cream I was able to keep any future skin infections under immediate control. I found that unscented baby soap, lotion, and shampoo made by Aveeno worked best for me, as did the antibiotic cream Bactroban. Others I know used Clindomycin Cream, an another antibiotic preparation. The other bad side effect of Iressa is diarhea. Imodium A-D, an over the counter anti-diarrheal drug, is all I ever took. I didn't have much of a problem with this side effect. I have Crohn's Disease, and one of the very nice side effects for me was that there was a definite improvement in the Crohn's while I was on Iressa. It was a significant improvement. Iressa kept my tumors stable for between 5 and 7 months. There may have been some reduction in tumor size in the early months, but the CT reports aren't all that great so I wouldn't feel comfortable asserting that as a definite. I know that there have been others who had worse side effects who had to discontinue to the drug. I know others who have had the very best side effect... complete response with no evidence of tumor in the body. Mine, I think, was about average. But I can promise you that the improvement in my ability to breathe was pretty impressive to me. Kathy, Go to the ACOR site and do a search for the Lung-Iressa List. There is a wealth of information on Iressa, both being posted currently, and in their archives. That list has been in place since before Iressa received FDA approval. Lots of good, solid info there. I hope that Iressa proves to be the magic bullet for you Dad that it has been for others. Wishing you both only the best outcome, Fay A. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 19, 2003 Share Posted July 19, 2003 Hi, guys and gals! I decided to tag on this run instead of starting a new topic. Lucie started Iressa on Thursday. We have noticed two things since then: (1) she has become nauseated without warning and thrown up after eating a meal -- both Friday night, and again at lunch today. (2) she has been having sinus problems but the headaches have become more intense in the last few days. Do either of these sound like the Iressa could be the culprit? Thanks. Don Quote Link to comment Share on other sites More sharing options...
cathy Posted July 19, 2003 Author Share Posted July 19, 2003 Thank you Don, Peg, Carolyn and Fay I appreciate this sooo much. I am going to make copies for dad and bring them to him tomorrow. I dont mind if you keep responding the more responses the easier it will be for him to decide. This is a wonderful family we have started here, you come through when needed.... Quote Link to comment Share on other sites More sharing options...
AdaW Posted July 20, 2003 Share Posted July 20, 2003 Dear Cathy, My 2 cents about IRESSA. I was on it for a month and unfortunately it didn't work for me. My tumors grew. For those that it works for though, I would say it's a real miracle. Imagine swallowing a simple pill and having your tumors shrink!!!! That's about the size of it. I did have some minor side effects-fatigue, nausea but nothing compared to regular chemo and nothing that I couldn't manage. I did have the "runs" and had to watch what I ate, but I didn't have any embarassing moments. A simple pill is really the way to go. I definitely think it's worth the try. I'm anxious to hear your Dad's decision. Ada Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 20, 2003 Share Posted July 20, 2003 Don, I don't know about the nausea and vomitting. I don't recall experiencing that on Iressa. I know that some of us were told to take Iressa in the morning about an hour before breakfast, but some of us found that if we took it at night, before bed and with a few crackers, we could limit the diarrhea and when it occurred so that it didn't impact our day quite so much. It makes sense that if Iressa can irritate the small bowel and colon that it might also irritate the stomach. I did have drying of the mucous membranes in my nose, and I bought some over the counter nasal saline spray, which helped. And I did, on occasion, have a nosebleed. It didn't last long, and the truth is I was so tickled not to have to be spitting up so much of that foamy phlem, and not having to cough so hard it made me feel like my ribs were broken that I guess the nosebleed, rash and occasional tummy trouble just didn't seem like that big a deal. I can't remember who did it, but someone here posted a direct link to ACOR's Iressa Message Board. It's a wonderful place for info on Iressa. It's been in existance since before Iressa received FDA approval, so register with them (it's free) and go back to the archives to read what is there. In the early days we were on clinical trials and getting Iressa that way. You should all go there and read what has been written. Wishing you all well, and Don, I hope Lucie is feeling better very soon. Fay A. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 20, 2003 Share Posted July 20, 2003 Fay, thanks for the tip on ACOR website for Iressa. I went there and posted (you have to register first) and we will see what they have to say. Thanks again. Don Quote Link to comment Share on other sites More sharing options...
Debaroo Posted July 21, 2003 Share Posted July 21, 2003 Cathy, My father was on Iressa from January until June of this year. His side effects were so minimal-just dry skin, which mom got a great moisturizer for, and that was it. He was a bit tired, but there were really no side effects from the Iressa. In the beginning the Iressa worked, it shrunk in one lung two tumors and the other tiny tumor in his other lung remained small. Although the Iressa stopped working for my dad, it was sooo worth trying. The fact that it dosn't have too many awful side effects is a definate bonus. My dads onc. told us that the odds of the Iressa working were just the same as the odds of another type of chemo working= forty percent (I believe the breakdown was it gave a twenty five percent chance of it not allowing the cancer to advance any further (which is not bad) and a fifteen percent chance of it "melting the cancer away". I think that it is worth a try, especially if someone is in a weakened state. Don, as far as Lucies vomiting, I've never read anything about that being possible side effect, But I believe the headaches are a possible side effect. In my opinion, the vomiting could be a side effect, seeing as how everyone handles medications differently. I hope this was of some help to you guys. Cathy and Don, good luck...I think Iressa is something definatly worth giving a try!!! Take care, Deb Quote Link to comment Share on other sites More sharing options...
Guest Ry at work Posted July 21, 2003 Share Posted July 21, 2003 Sorry to be so late getting in on this but our home computer is in the shop with a virus so I can only check in at work. My husband John is doing well on Iressa, he feels great and it is shrinking his tumor. He does have the rash and gets diarhea. He had the diarhea before so who knows if it's due to Iressa. He has had virtually no problems with the Iressa and says it's wonderful to be able to take a pill rather than chemo. I think your dad should give it a whirl and see how he does. John has a much better quality of life right now, is able to do much more than he could before. Quote Link to comment Share on other sites More sharing options...
teetlee Posted July 21, 2003 Share Posted July 21, 2003 Hi Cathy, You did say good or bad, right? I almost hesitate to write this but remember we are all different and we all react differently to medications. I started iressa in Dec. 2001 as a clinical trial. I had some diarrhea but not bad. I really had a bad iressa rash. In fact, it was worse than a rash. I actually had blisters that oozed from my shoulders to my feet. The dr. said they had never seen a reaction like this and didn't know why it was so bad. I was seen by the dermatology dept. and they couldn't figure out what was going on. They even took biopsies of the blisters. There was no change in the cancer at all. It wasn't until much later I learned that I didn't have nsclc but a different kind of cancer altogether. so this may be why I reacted so badly to the iressa. I still think iressa is worth a try because I understand that others have had good results. Good luck, Teet Quote Link to comment Share on other sites More sharing options...
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