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StrahDawg

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Well it's been awhile since I've been on here and not sure if that's a good or bad thing. Today was my 90 day check up and I just wanted to say NED! I've been on the crizotinib now going on a little over a year and a half. The drug for me has been very tolerable other than mild fatigue and the swelling mainly in my feet and hands. My Onc prescribed lasix and that controls it pretty good. The other reason I'm posting is that in 90 day's at my next scan he want's to add a brain mri to my list of scan's. He mentioned that it's only precautionary and that there has been some evidence that the crizotinib doesn't prevent spread to the brain and that there's some new and better drug's that might help me. I know it's a good thing that he's pro-active but I've been feeling so well and active that it freaked me out a little. I trust my Onc but today I kind of went in with the attitude of trying to get the dose lowered and instead got more test's and the feeling of uncertainty/confidence that the crizotinib is going to continue to work.

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Steve, it has been a long time since we have seen you here , but I'm so glad you posted. NED is the best reason I know of to come here and post. I can understand how you must feel about your doctor ordering more tests and talking about changing meds, right when you are doing pretty good, it seems. You say you have confidence in him and that's the key. Guess it's good to have the scan and hear him out on the possibility of changing medicines. It has been so long since I was in the loop as far as chemo drugs, but I do know from experience with my husband and from what I have read from others that sometimes doctors change drugs because the same one will sometimes stop working if used too long. I will be sure to keep you in my prayers and I hope you will check back in and keep us informed.

Hugs,

Sue

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NED is wonderful news. I certainly know the feeling of wanting to feel confident, but it seems that uncertainty and cancer seem to go together. I think your doctor is just being proactive, and that is a good thing.

Enjoy NED and keep us posted.

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  • 2 months later...

Hello everyone it's 90 day's and check up time again. Last time I posted they wanted to do a brain mri and well not good news. I have about 4 or 5 lesions on the brain and going back tomorrow for gamma knife. Everything else chest, abdomen and pelvis still NED. Also Last time I posted I did not mention that my Doc. said he thought it was ok to take a break from the xalkori which I did and now this. He doesn't believe that stopping had anything to do with the met's because supposedly there's no evidence that xalkori can prevent spread through the blood brain barrier? Anyone else have this happen with xalkori or have the gamma knife done? He is still very optimistic about my treatment but it's so frustrating sometimes that when you start feeling good and normal again that we have to have these set backs. Anyway that's my little sob story and I guess it's back to work in kicking this monsters you know what!!!

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Hi StrahDawg,

It is good to hear from ya! I'm sorry about your latest dx. It sounds like you have a great doc though. I just wanted to pop in and say that you are in my positive thoughts and prayers. Keep on kickin that monsters tail!

Cindy A.

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I'm sorry the MRI results weren't the best, but the scan results are definitely good news. I hope the gamma knife does its job on the lesions. Battling this monster is not for the faint of heart, but it is clear you have a good fighting attitude. Thank you for the update and please keep us posted.

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Hi Steve,

I'm sorry about the brain mets. Do you know Matt Ellefson? He has been on Xalkori/Crizotinib for a couple of year and also developed a couple of brain mets which were removed. He continues to do well on the Crizotinib. Here's his video in case you haven't seen it.

If you want me to connect you to him, let me know.

Please keep us posted on you. My prayers for you continue!

Katie

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Hi Steve,

Just wanted to let you know that I will keep you in my prayers as you go through your treatments for the brain mets. Wonderful news that you are NED for everything else and hopefully we can add the brain to that list in the very near future. Sounds like you have a great doctor . Keep up the positive attitude and keep us updated.

Hugs,

Sue

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