curlysue50 Posted June 5, 2012 Share Posted June 5, 2012 I have a 3 month follow CT scan on Monday the 11th. Friday the 15th I get results. I am on Xalkori the genetically targeted drug for ALK (anaplastic lymphoma kinase) translocation. A mutation found in my tumor cells. At 2 week of beginning treatment a stopped daily vomiting and went off all pain meds. At 8 weeks my left lung, collapsed with tumor, was open and functioning. Tumor was gone off left adrenal gland and all "nodes" forming in right lung were gone. They called it"significant" response. I am anxious to hear if this response will continue. I am stage 4 and surgery was never option. I did have 4 rounds of chemo (taxol and carboplatin) which only gave me brief stabilty. I don't know anyone else on Xalkori (crizotinib). I know it is used on a small, specific population with the ALK translocation. I wondered if anyone else is on this drug, either now or were part of the clinical trials and what their experiences have been like? I will come back with an update when I get results. I good and hope results reflect that. Susan Quote Link to comment Share on other sites More sharing options...
ginnyde Posted June 5, 2012 Share Posted June 5, 2012 Significant, I would say is an understatement. All things crossed for the 15th. Quote Link to comment Share on other sites More sharing options...
eric byrne Posted June 5, 2012 Share Posted June 5, 2012 Hi Susan, I would say you are making remarkable progress with your treatments.I do know that Senator Andy Hill has made a wonderful reponse in receiving Xalkori.Best wishes. Quote Link to comment Share on other sites More sharing options...
Alan Posted June 5, 2012 Share Posted June 5, 2012 I talked to a chap at the summitt who started xalcori(sp)) when it came out 2 years ago and said it was his miracle. Hopefully it will do as well for you. Quote Link to comment Share on other sites More sharing options...
curlysue50 Posted June 5, 2012 Author Share Posted June 5, 2012 Thank you Eric and Alan for the positive results updates on Xalkori. My oncologist seemed to think since my response was so fast that it would be very effective for me. I am only his second patient to actually use the treatment, but I am sure he has read cases on it. I was just wondering if there were other good results out there and it sounds like there are. I had not actually talked to anyone else who had used it yet. It sounds encouraging to hear of others success and hopefully my good results will be with me for awhile! Susan. Quote Link to comment Share on other sites More sharing options...
RandyW Posted June 5, 2012 Share Posted June 5, 2012 Thank you for Being a pioneer in Lung cancer research!! Quote Link to comment Share on other sites More sharing options...
dianew Posted June 5, 2012 Share Posted June 5, 2012 Susan - will be thinking positive thoughts for GREAT results for your scan and it sure sounds extremely good. I have also heard great results about this drug for the small group it targets - and it certainly sounds as though you are one of the fortunate ones. All of these new treatments are so exciting and as Randy said - thanks for contributing to LC research. Diane Quote Link to comment Share on other sites More sharing options...
beatlemike Posted June 6, 2012 Share Posted June 6, 2012 Sounds like you have been getting great results Susan. I pray they continue. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted June 8, 2012 Share Posted June 8, 2012 Susan, I don't know anything about the chemo drug you are on, but it sounds like you have really had a remarkable response. Just want you to know that you can count on my prayers for great results from the upcoming scan. Will be checking back. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Joppette Posted June 8, 2012 Share Posted June 8, 2012 Hi Susan, Since reading this, you've been on my mind. I keep you in my prayers each day, and know that the 11th must be on your mind a lot. You are a hero for allowing this kind of research to be done. Many lives will be saved because of this, and that is awesome! Praying for the best results! Judy in MI Quote Link to comment Share on other sites More sharing options...
Janet B Posted June 9, 2012 Share Posted June 9, 2012 Sue I was just trying to get caught up on the site after having a busy week and I saw this. At least one member of my in-person support group is on Crizotnib and she has been doing very well. I think she has been on it for quite a while now. We have support group on Monday so I will check, but it seems like it has been a year or more. I am sure she would be happy to chat with you if you want to talk to someone else who is using it. you are in my prayers, always Peace Quote Link to comment Share on other sites More sharing options...
carolhg Posted June 10, 2012 Share Posted June 10, 2012 I certainly hope and pray that this treatment continues to be successful for you as well as for so many others. Keeping you in my prayers. Carol Quote Link to comment Share on other sites More sharing options...
curlysue50 Posted June 11, 2012 Author Share Posted June 11, 2012 The Ct scan went well today. Now to just stay busy with other things so I don't worry about what my results will be this Friday morning. It is hard not to think about it, but I keep remembering what my oncologist told me," I put a lot of weight on how the patient is feeling, not just test results, to make decisions." I have been feeling good. With the one exception of a little incident involving an abcessed tooth last Thursday and Friday. Ended up at an emergency room getting it lanced and drained. My biggest relief was hearing my oncologist tell me, it is not cancer related, just a dental issue. I had googled severe jaw pain and lung cancer together and got a lot of hits and panicked. Never thought I would be relieved to have JUST an abcessed tooth. Cancer trumps almost everything, so this seemed minor once antibiotic kicked in. I may feel different after I consult the oral surgeon about getting the tooth removed. Will post an update on results after I get them. Thanks for all the encouragement and prayers! Susan Quote Link to comment Share on other sites More sharing options...
RandyW Posted June 11, 2012 Share Posted June 11, 2012 always run medical questions past Dr West at CancerGrace.org... he is great about getting responses back asap!! and You will not scare yourself as bad!!! Quote Link to comment Share on other sites More sharing options...
shineladysue Posted June 12, 2012 Share Posted June 12, 2012 Been thinking about you today. Glad your scan is behind you, but sorry about the long wait til Friday for results. I'm also sorry you had to go through the pain of an abcessed tooth, but am glad it is a dental issue.. sometimes Google is NOT your friend.. lol Hope things go well with the oral surgeon and you get that bad boy outta your mouth soon. Keep us updated. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
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