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Hi all,

I'm Mary, 61 years of experience, I live in southern NH, and I was diagnosed in September 2011 with ALK+ stage IV adenocarcinoma of the lung. I started on a protocol of carboplatin and pemetrexed (Alimta), then pemetrexed only. Unfortunately, by January 2012, we confirmed disease progression and I have been switched to the new targeted therapy, crizotinib (Xalkori). Crizotinib was receiving final FDA approval at the same time I was being diagnosed, so I'm heading down  somewhat unchartered territory. I'm a "no risk factor/life-long never smoker", so a mutation was suspected from the beginning. The ALK mutation is pretty rare (lucky me), but the results on crizotinib in trials have been good. There aren't a lot of other options, so this better work! I'm managing the side effects fairly well. It's hard being on a protocol from which there isn't a break, so there aren't too many "good" days.

I look forward to sharing and caring with all of you!

 

Mary

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Hi Mary, welcome to LLL. There are lots of people on here with lots of different experiences. It sounds like you are getting good treatment but sometimes it takes awhile before we see the light at the end of the tunnel. Having the ALK mutation is actually a good thing in a way, there have been some good responses to the treatments. It's a hard road. Hang in there. Good luck, God bless and keep the faith...

David

Hi Mary!

Welcome! It will be great to hear more about your experience with Xalkori. What side effects are you experiencing so far? Just curious. 

Amy

Hi Mary.................you find this to be a wonderful support system.  I sure did.  Just to know that there are others who can relate to what you are going through helps so much!!  I will keep you in my prayers.  You sound like you have a good attitude, that is very important.  I try to keep it, but do have my meltdowns.  I think we are entitled now and then.  I had lung surgery in Nov. 2011 and have been home recovering.  I just got released from the hospital again due to having 5 compression fractures in my spine.  More painful than my lung cancer surgery.  I am 54 and have had Osteoporosis since I was 41.  Luckily that is what caused the fractures.  They thought the cancer got in to my bones but thank God that was not the case.  Please take care of yourself and keep us updated on your condition.

Hi Mary - Welcome aboard to a wonderful place.  I have heard many good things about Crizotinib.  Mutuation is a good thing (who knew one day that would be a happy thing)!  I didn't have it so I wasn't able to go on that drug.  Hang in there as this is a rollercoaster ride and there are some calm periods.   I am almost five years in and I can tell you today I still have the good days and not so good days.  Of course I think any day above the daisies has to be better than the alternative! 

Hang in there and may you be blessed with excellent results from the medicine.

Maribeth

Hang in there Mary. Sounds like you are in good hands. LLL is a great place for support that is needed on this journey. I had my left lung removed in 2007 and just celebrated my 5 year mark. I live everyday as a gift from God.

 

Prayers coming your way,


Sue J.

Hi Mary, glad to see you posted. I'm really glad to see you are handling this really well. Nothing worse than feeling out in the cold not knowing where to turn or who to ask. I know we will benefit from you being here as much as you will from us. 
Have a great day,
John

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