StrahDawg Posted November 29, 2011 Share Posted November 29, 2011 Well it's been a few years but unfortunately I am back and hoping to get a little feed back on my next step. Last month at my check up I found out that my met in my lower back was active again and we needed to do 10 days of radiation. I've since completed the radiation but the Doc. also wanted a PET scan done. Upon further review my other met in my pelvis also showed some uptake. His recommendation now is either trying the alimta again once every 3 weeks along with zometa every other treatment or a fairly new drug that I'm finding out is pretty incredible called crizotinib. What I want to know from you my fellow experts who have to go thru this hell is this crizotinib as effective and easy to handle as they say? Also and I thought this was kind of odd but my Doc. said he sent my tumor out almost a year ago and that the crizotinib worked on it. Do they normally do this? Quote Link to comment Share on other sites More sharing options...
ginnyde Posted November 29, 2011 Share Posted November 29, 2011 Strah, I really have no information only wanted to say I am sorry you have started on this journey again. Hope the treatment is successful this time too. Quote Link to comment Share on other sites More sharing options...
Joppette Posted November 29, 2011 Share Posted November 29, 2011 Sounds like a positive plan. I'm going to remember the name of the chemo since I'm possibly dealing with it again too. I just came in to say HI. I am relatively new here. I'm Judy in MI so that they don't confuse me with Judy in KW! Judy in MI Quote Link to comment Share on other sites More sharing options...
StrahDawg Posted November 29, 2011 Author Share Posted November 29, 2011 Thanks Katie and thanks again for your dedication and all that you do. As far as testing my tumor the reason my doctor gave me and hopefully I'm understanding it correctly was at the time they were getting ready to start a clinical trial at the Cleveland Clinic and this crizotinib only works with certain lung cancers (adenocarcinoma) and you have to have I believe it's called the ALK gene. Well anyway I had that and he said the crizotinib worked and I qualified for the trial. At the time I said I didn't want to participate because I wasn't having any problems and there was nothing for them to compare which he agreed. I think I'm leaning toward starting the crizotinib but I was hoping to get some opinions on how it's worked and the real side effects people are dealing with. Quote Link to comment Share on other sites More sharing options...
StrahDawg Posted November 29, 2011 Author Share Posted November 29, 2011 Thanks Katie and reading Kurt's story is so much what I needed to hear. Quote Link to comment Share on other sites More sharing options...
ts Posted December 2, 2011 Share Posted December 2, 2011 Crizotinib is now called Xalkori. It received FDA approval for patients with the ALK rearrangement this past September (I think that is right.) I think there is a LUNGevity video of State Senator Andy Hill from the August Seattle walk: He is a criz trialist and a super responder. He's also patient X in Dr. West's TedX video. http://tedxtalks.ted.com/video/TEDxOver ... k-West-Sel And my favorite - the woman who was the face of crizotinib, Linnea: http://lifeandbreath.wordpress.com/ She progressed just as the FDA approval came, but she is on a new trial for that and it sounds like she is doing very well, again. Here's to being a great responder! Quote Link to comment Share on other sites More sharing options...
StrahDawg Posted December 2, 2011 Author Share Posted December 2, 2011 Thank you for the info I called my Onc. today to get started. He said they mail the drug so i should get it sometime next week. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 3, 2011 Share Posted December 3, 2011 Sorry you have to be back. Wishing you the best of treatment luck. Now I have to remember to ask my onc about the ALK gene. Judy in KW Quote Link to comment Share on other sites More sharing options...
StrahDawg Posted January 24, 2012 Author Share Posted January 24, 2012 I just wanted to give an update on the xalkori. It's been almost one month and as far as side effects theres basically none. At night or in low light situations I get a little of the flashing light traces but during the day nothing. In the morning I make sure to eat a light breakfast about an hour before taking my first pill as it helps with the mild nautia. Other than that I can't complain about anything. My back pain has been slowly going away so I hope that this means the drug is working. I get scanned again in a few weeks and I will post the results. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted January 24, 2012 Share Posted January 24, 2012 Sounds good to me. Will be waiting for your scan results. Judy in KW Quote Link to comment Share on other sites More sharing options...
StrahDawg Posted February 28, 2012 Author Share Posted February 28, 2012 Finally some good news for a change the scans came back good. I'm not sure if NED is the proper term for this time but my Doc. said none of the spots on my back or pelvis lit up on the PET scan. He was very happy and said we would scan again in 90 days. The crizotinib has been great to be on other than I have to have a little breakfast before I take it. Quote Link to comment Share on other sites More sharing options...
dianew Posted February 28, 2012 Share Posted February 28, 2012 Great news - thanks for sharing! Quote Link to comment Share on other sites More sharing options...
jaminkw Posted February 29, 2012 Share Posted February 29, 2012 TERRIFIC! And thanks for reporting on a drug new to me. I may need it down the line. Unfortunately I can't be tested for the ALK. When I asked the radiologist who removed my fluid last week to be sure to keep enough for the ALK test, he said he understands they need a good chunk of tumor to test for it. Don't have one but am sure my onc would let me try the critoztinib anyway. Judy in KW Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted February 29, 2012 Share Posted February 29, 2012 Great news! Congrats on the good scans! Quote Link to comment Share on other sites More sharing options...
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