Mark - North Calif Posted March 2, 2007 Share Posted March 2, 2007 Hi All, I haven't written for quite some time but thought my current status would help all with their battle. My condition has been 'stable' now for almost 4 years thanks to excellent medical care and Iressa. Started taking Iressa in 2003. Aside from the 'normal' side-effects, I've been able to stay on my daily dose without too much difficulty. Wondered if anyone else has been taking Iressa this long and what has been thier overall experience. Regards, Mark Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 2, 2007 Share Posted March 2, 2007 Congratulations on your 4 years. Awesome! Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 2, 2007 Share Posted March 2, 2007 My late wife tried it for a month and it was pulled basically so..... Anyway CONGRATULATIONS and many more 4 year posts to come!! Quote Link to comment Share on other sites More sharing options...
Kaffie Posted March 2, 2007 Share Posted March 2, 2007 Fantastic news, Mark Thanks for posting, I think it will give hope to many here who need it about now Quote Link to comment Share on other sites More sharing options...
Mark - North Calif Posted March 2, 2007 Author Share Posted March 2, 2007 Hi Everyone, Thanks for the posts. I guess 'going strong' is a bit of a misnomer. A better way of stating my situation is to say I'm still happy to be functioning.....there are many side-effects and they are getting more severe & annoying with time. I'll keep taking Iressa as long as it works. BTW, I was lucky enough to be placed in the Astra Zenica 'compassionate drug program' so continue to have access to this drug. I realize Iressa is off the market now and has been replaced by Tarceva. I'm still interested to hear from any long term Iressa users. My message to everyone is never give up! Regards, Mark Quote Link to comment Share on other sites More sharing options...
Ry Posted March 2, 2007 Share Posted March 2, 2007 Mark- Lisa O has been on Iressa a long time also. You may want to PM her in case she doesn't see this post. My husband had great success with Iressa for some time (see profile) then they talked us into switching to Tarceva. I often wonder if we would have stayed with the Iressa if it would still be working. Congratulations on doing so well. Quote Link to comment Share on other sites More sharing options...
ernrol Posted March 2, 2007 Share Posted March 2, 2007 Mark, That's great. Keep it up. I have been on Tarceva for 20 months, so far so good. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
trish2418 Posted March 2, 2007 Share Posted March 2, 2007 Congratulations on 4 years, Mark! So glad Iressa is working for you. Trish Quote Link to comment Share on other sites More sharing options...
ACP Posted March 2, 2007 Share Posted March 2, 2007 My Mom has been on Iressa for 3 years now as a part of the compassionate drug program as well. She has done great until the past month and we are now starting to see some signs that indicate the cancer is growing. CT/PET on Monday to know for sure. I have been searching high and low for someone still on Iressa and you are the only other person - congrats!!!! Quote Link to comment Share on other sites More sharing options...
Mark - North Calif Posted March 2, 2007 Author Share Posted March 2, 2007 Hi All, I do appreciate all the posts. I have a couple of replies to specific individuals which may interest the group. RY: I'll wait a bit before PM'ing Lisa O. ACP: Sorry to hear that Iressa may be failing your Mom. My Onc and I are watching for the signs also but so far no change. My Onc told me that he knows of very few who have managed to stay on Iressa this long. That's quite a statement coming from a clinical professor at Stanford Med school. Hope your Mom can move to Tarceva which works in a similiar fashion. Ernie: I noticed you're located near Naples, FL. I recently moved to Cape Coral a few miles up the coast of FL from you. Looks like I have to update my profile again. BTW, I still go back to CA to see Onc and for testing (CT Scan, etc). It's a bit of a pain and expensive but I can't argue with the success so far - maybe I'm a bit superstitious . Also, trips give me a chance to see & stay with ex son-in-law (an ENT Doc). Regards, Mark Quote Link to comment Share on other sites More sharing options...
Wendy Posted March 2, 2007 Share Posted March 2, 2007 Mark, I am so happy to hear how Iressa has helped you. I was on it originally through a maintenance trial but eventually the side effects got too bad. I am now on Tarceva and have been stable for 13 months. Please check in when you have a minute - Your story gives so many hope! Keep on fighting, Wendy Quote Link to comment Share on other sites More sharing options...
teresag Posted March 2, 2007 Share Posted March 2, 2007 Wow! That is fabulous news, Mark! With wishes for many, many more milestones passed, Teresa Quote Link to comment Share on other sites More sharing options...
alexan Posted March 3, 2007 Share Posted March 3, 2007 Mark, Congratulations!!!!! 4 years !!!!!! and wish you many, many,many more. bucky Quote Link to comment Share on other sites More sharing options...
Nushka Posted March 4, 2007 Share Posted March 4, 2007 Congratulations on 4 years. I am sorry about the side effects but wow! what results. Nina Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted March 4, 2007 Share Posted March 4, 2007 Mark, Thank you for sharing your story. It is very inspirational!! God Bless!! Jamie Quote Link to comment Share on other sites More sharing options...
Snowflake Posted March 4, 2007 Share Posted March 4, 2007 Mark, Congratulations on the four years of success! I took Iressa for all of two months in 2003 and was taken off it for side effects. I would LOVE to know what the long-term side effects are from taking the medication, as I believe I have some "conditions" only attributable to ingesting the pills. Have you ever checked into the Corporate Angel Network? They utilize donated seats on corporate jets and small private pilots to fly cancer patients free of charge to hospitals. http://www.corpangelnetwork.org/ Contact Us Corporate Angel Network, Inc. Westchester County Airport One Loop Road White Plains, NY 10604-1215 Phone 914-328-1313 Fax 914-328-3938 Toll-Free Patient Line 866-328-1313 Email info@corpangelnetwork.org Quote Link to comment Share on other sites More sharing options...
Mark - North Calif Posted March 4, 2007 Author Share Posted March 4, 2007 Hi All, I'm responding to Snowflake's question but thought this would be of general interest to everyone. In my case, the Iressa side effects consist of gastro-intestinal problems, primarily of daily and frequent diarrhea. Bleeding of the nose and gums also occurs at times. My skin turned dry and I have acne outbreaks on occasion. I now have dry eye syndrome which may be related to the drug. I take other drugs for a heart condition so there may be interactions as well. As an experiment, my Onc asked me to stop taking Iressa for a week to see if the side-effects were curtailed. The results were dramatic, all side-effects diminished within a few days. To be honest, given these results, I can't see how anyone who took the drug for 2 weeks could have lingering side-effects. I believe Iressa saved my life and am thankful I still have access to it. Quote Link to comment Share on other sites More sharing options...
Mark - North Calif Posted March 4, 2007 Author Share Posted March 4, 2007 Hi Folks, Sorry, I misread Snowflake's message. After two months of treatment (not 2 weeks as I stated), I believe bad side-effects can happen to those with sensitivities to a drug. I didn't mean to imply that some people who stop taking a drug don't continue to have issues. In my case, I've been very lucky. Hope this clarifies my note. Mark Quote Link to comment Share on other sites More sharing options...
Amy P Posted March 4, 2007 Share Posted March 4, 2007 Hi Mark - this is ACP - I forgot I had a different sign on that I used for my work laptop. Anyway, I think what is so amazing about my Mother's response is that she has been on a half dose for 2 of the past 3 years. She went down to the half dose for the some of the same reasons, primarily the GI symptoms. She also seems to suffer from an extreme lack of energy. All in all her oncolgosit has been more than pleased with her results. The new symptoms however are very concerning. She has a CT/PET on monday to check out the new symptoms and from a new plan from there if needed. She has always been a quality of life vs. quantity life and she is so tired right now. We have a pact to support her in whatever path she chooses. Thanks so much for your inspiration! Quote Link to comment Share on other sites More sharing options...
fight Posted March 6, 2007 Share Posted March 6, 2007 Mark, Wonderful to hear that you have been on Iressa for 4 years! I know of two people who have taken it for a substantial amount of time. My husbands uncle was on it for 2 1/2 years and recently had some progression so they are trying something new. A family friend of ours has been on Iressa for over 3 years now and is doing very well. In fact he just started a men's cancer support group in our area. He calls Iressa a miracle drug. When I start Tarceva I hope that I can have the same results! Take Care, Rachel Quote Link to comment Share on other sites More sharing options...
Maryanne Posted March 10, 2007 Share Posted March 10, 2007 Mark congrats on 4 years. Iam so glad the Iressa is working for you!! Maryanne Quote Link to comment Share on other sites More sharing options...
sophiesdaughter Posted March 13, 2007 Share Posted March 13, 2007 Mark, It's great to hear that Iressa has been working for you for so long. My Mom was on Iressa for 2 years, then she had some progression, so she was taken off, now she is on taxotere and is handling that well and had significant reduction in her tumors, I think Tarceva will be her next option. I wish you continued success on Iressa for many more years. Rana Quote Link to comment Share on other sites More sharing options...
Shar Posted March 14, 2007 Share Posted March 14, 2007 Thanks so much for posting what is for me, very inspiring to read. What hope you have given others, Sharon Quote Link to comment Share on other sites More sharing options...
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