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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?

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Sending a tumor out to be tested isn't "normal" ...yet....but I'd love for it to be. Doctors and medical facilities who do the tumor tests are ahead of the game in my opinion.

Knowing whether or not you have a gene mutation can determine what kind of treatment will work effectively on you. There's controversy over the expense of such testing but if it saves lives, there's no debate with me. Testing to see if your cancer has a mutation and your treatments can be personalize to YOUR cancer is common sense to me.

I've read many stories on how well crizotinib works.

I hate that you have to battle the beast again, but I'm so optimistic reading that you will begin Crizotinib.

My prayers for your total success.

Please keep us posted.



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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.

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I'll find you a patient to talk to.

Having the ALK is like hitting the jackpot...that sounds insane, but it's a very good thing...(Like EGFR mutation for those taking Tarceva)

so good that the FDA approved it at the speed of light, Pfizer (the drug company that makes it) is putting out a huge campaign to let doctors know that testing tumors for gene mutations can save lives....

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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:


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!

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  • 1 month later...

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.

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  • 4 weeks later...

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.

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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

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