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stage5guy

ALK Gene Rearrangement

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Steve:

I am sorry to hear of your diagnosis, but so happy to hear you are getting a good response to the Xalkori. I am also stage 4 NSCLC adenocarcinoma with mets to brain, bones, liver and adrenal gland. I was diagnosed August 9th 2011. I did traditional chemo fall 2011 and when we only got stability and no shrinkage of tumors my oncologist did the genetic testing for ALK translocation. He called me at home and I was really anxious to hear what he had to say. Two of my sisters have worked for Pfizer and knew how successful Xalkori had been in clinical trials for ALK patients. My oncologist said, "Mrs Gamble, I have some very good news for you, your test came back positive for the ALK mutation." It was the first good news I had had in awhile, because I was very, very sick before I was finally diagnosed. That also meant the spread of the cancer was very extensive.

Since I started on Xalkori mid January 2012, my collapsed left lung has reinflated and is functioning except for a small area of scar tissue in lower left lobe, nodes in right lung are gone, many areas of lymph node involvement have cleared, adrenal tumor is gone, liver tumors are stable and some of my bone mets are trying to fill in and heal. I still have a small amount of pleural effusion in lower left lung, but it has been greatly reduced. I have stopped vomiting multiple times daily. That was such a relief that I marked it on my calendar for 2 weeks before I realized that this was an improvement that was going to stick!

I also had problems with blood clots. I had 9 in my left leg alone the day I went for my first chemo infusion. The tech stopped counting at 9 and I now take daily Luvenox injections which is a blood thinner. So far I have not had any complications with that or any more blood clots. I have been very blessed.

I found this site after I had been through some of the worse physical effects of my cancer, but there have been many emotional and practical aspects of dealing with stage 4 cancer from dealing with specific symptoms to wondering where I fit into the world now...I had worked full time for years and am now home and not able to work. There are many great people here. Their lives have all been touched by lung cancer. They get it. They understand. They do not judge. We are all here to listen, to support and help in any way we can. You are in the right place.

You sound like you have a great attitude. I try to keep positive too. But I do have days that seem like they are more than I can handle sometimes. This is the place I express my fears, my small (and large) victories, my questions and ask for advice. To be reminded I am not alone in this. Welcome.

Susan

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