dfourer Posted July 14, 2010 Share Posted July 14, 2010 I want to hear your experiences with Crizotinib (PF-02341066) I started Crizotinib on June 9, 2010. I had an immediate response, very dramatic, but after 26 days (July 6), I started sliding backwards. It was worth it for the very brief recovery. I have not had my first CT on treatment yet. Next week. There is a thread on this at the Inspire web site here: https://www.inspire.com/groups/lung-cancer-survivors/discussion/any-one-on-pf-02341066-crizotinib/ Ned, It is good to see your posts here. My sig is kinda long, but I'll leave it in since I have not posted in a while. David, Chicago Quote Link to comment Share on other sites More sharing options...
ts Posted July 14, 2010 Share Posted July 14, 2010 Not me, but this is one of the pioneers and an amazing story: http://lifeandbreath.wordpress.com/ and this is pretty remarkable as well: http://www.andyhillforsenate.com/abouta ... ith-cancer (He's even running for office!) Quote Link to comment Share on other sites More sharing options...
dfourer Posted July 15, 2010 Author Share Posted July 15, 2010 ts, thanks for the note. I learned from the first link that there are drugs in development for people who are ALK pos but develop resistance to Crizotinib (AP26113, AP24534, ARIAD Pharmaceutical). It's always good to have something to hope for. David Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 15, 2010 Share Posted July 15, 2010 Hi, David, thanks for the update. My onc thinks that Crizotinib will be available in Hawaii perhaps later this year. But for now, I'm still doing well on Navelbine, with the tumors somewhat smaller for the first time since 2007. Will have another scan probably in late August. Take care, Ned Quote Link to comment Share on other sites More sharing options...
dfourer Posted July 15, 2010 Author Share Posted July 15, 2010 Ned, Thanks for mentioning that you are doing well on Navelbine, since I have never taken it, and will be seeing the doctor tomorrow. Stay well, enjoy life. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 15, 2010 Share Posted July 15, 2010 Hi David, can't help but good to see you here. I wanted to duck in and say your sign can be as long as it needs to be. I noted the date of your dx and did the math--over six years. Awesome! Judy in KW Quote Link to comment Share on other sites More sharing options...
dfourer Posted July 15, 2010 Author Share Posted July 15, 2010 Hi, Judy. So where are the people taking Crizotinib? I hope you are feeling as well as you sound. I got in to see the doctor tomorrow. All concerns aside, I am feeling better than I was. Little pain, and I sleep all night. Today I fell asleep in the hammock. I am actually working some. Really very little, but it's nice. Sunday lots of company here. Quote Link to comment Share on other sites More sharing options...
dfourer Posted July 22, 2010 Author Share Posted July 22, 2010 Got results of study tests today (Crizotinib). Blood tests good all around. CT and MRI imaging of head, chest, abdomen, are mixed with small changes in either direction. Doctor says he's encouraged and pleased with the results, so I guess I should be also. My complaints about my health seem stable. I am taking life easy, but I do get out and do things. Lots of company Sunday. About 30 people for a pot-luck back yard event for the gardening club and other friends. I spent a few days getting the garden in shape, cooking, whatever. It was a big success. People helped clean up and I had little to do. In fact, I fell asleep as soon as the guests left. I usually take an afternoon nap. It's a sign that I am not as strong as I once was, but things could improve. David / Chicago Quote Link to comment Share on other sites More sharing options...
ts Posted July 22, 2010 Share Posted July 22, 2010 Fingers remain crossed for you. There is someone in my circle of acquaintances on the trial (neither he nor his wife are likely to join an on-line site). He just started a few weeks ago. Last week he mentioned he is very tired, but overall feeling better - and the household is hopeful. He did not even know the drug existed before June! And this is after 6 or 7 lines of chemo in two years. Quote Link to comment Share on other sites More sharing options...
KatieB Posted July 22, 2010 Share Posted July 22, 2010 david it sounds like encouraging news all around and what I love most is the supportive people you have around you. sounds like you had a wonderful time. rest is good for your body. Prayers that your strength returns and for things to improve for you. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 24, 2010 Share Posted July 24, 2010 Hey David, it all sounds good to me! Potlucks are the best. People always try to shine with their best dishes. Been traveling with Stan while he works. Mostly in the boondocks with no internet service or even phone half the time. Am feeling well. Doing the traveling easily. I'm a happy camper. Well, you wouldn't call traveling in my RV camping lol. Judy in KW Quote Link to comment Share on other sites More sharing options...
redcat Posted July 30, 2010 Share Posted July 30, 2010 Hi David and everyone else too, My husband has been on Crizotinib since the beginning of April, he's doing really well on it so far. Both of his lungs were totally cloudy in the scan he had before starting the trial, and now they are both almost cleared out. Its been a real miracle for us so far. Hope it continues, but I know there are other drugs in the works that should address the resistance issue. He is like a different person since he started the drug. He was diagnosed in Dec 2008 with stage iv, and it had spread to his brain, and we believe to one of the vertebrae in his neck. The only side effects with the drug so far is some diarrhea and vomiting, but that's only occasional, and not very bad when it does happen. We're up in Michigan, going to Karmano's, we started out in Boston and transfered back to Michigan when the study started here. Hope all goes well for you and everyone. Quote Link to comment Share on other sites More sharing options...
dfourer Posted July 30, 2010 Author Share Posted July 30, 2010 Hi David and everyone else too,My husband has been on Crizotinib since the beginning of April, he's doing really well on it so far. That's wonderful that he is doing so well. I want to know, did he have to get radiation treatment for the brain mets before doing Crizotinib? If so, how did that go? I am doing OK. I still need a nap every afternoon, and some of my symptoms still bother me. Most of the pain is gone and I am enjoying myself a lot more. David Quote Link to comment Share on other sites More sharing options...
ts Posted July 30, 2010 Share Posted July 30, 2010 David, That's a pretty good report for you! And Redcat. I saw my group ALK yesterday - he looks pretty good, was more coherent than he was prior to starting this treatment. He's got a daughter, her husband, and the grandkids staying with him and his wife for August and he is still smiling (they arrived last weekend.) FYI - he was dx two years ago with many mets to bones. Quote Link to comment Share on other sites More sharing options...
fillise Posted July 30, 2010 Share Posted July 30, 2010 David--I think you are one of the first around here on Crizotinib. Thanks for letting us know how you are doing. Naps every afternoon are a good thing! Susan Quote Link to comment Share on other sites More sharing options...
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