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New Member - Waiting and Hoping

mexloc
Posts: 10
Joined: May 2012

Hello my name is Marty. I am new to this board. I have Stage IV NSCLC-Adenocarcinoma. I was diagnosed in November 2011. Finished 6 rounds of chemo March 2, 2012. I was taking Cisplatin and Alimta. The tumor shrunk 25% after the second treatment. Oncologist wanted to keep me on maintenance Alimta but I really needed a break from chemo. I took the watch and wait route. I got my strenght back and had been feeling really good. 3 weeks ago I started coughing again. My last CT scan showed the tumor was back to the original size and new activity. I recently had a biopsy to test for the gene in hopes that I can qualify for the 2 new approved drugs EGFR and ALK. If not its back to chemo as I have been told I cannot have surgery or radiation. I had Pericardial Effusion at the time of my diagnosis. Has anyone else been told that chemo is the only treatment?

z's picture
z
Posts: 1250
Joined: May 2009

Hello, Sorry you had to find us. I was a stage 1a, so I'm not much help to you. I visit the Inspire web site. There are many Stage IV survivors there that have a lot of information about mutations and targeted drugs. I hope you will get a response here and then also visit the Inspire web site. I wish you well. Lori

mexloc
Posts: 10
Joined: May 2012

Z - Thank you so much for your response. I will look up the suggested web site. I wish you all the best on your journey. My prayers are with you.

MissNYC
Posts: 7
Joined: May 2012

Hi Marty, I am new to the site also. I have Adenocarcinoma in my right lung and squamous cell in my right. I was on the 2 chemo's you mentioned and 2 additional after that. My body couldn't handle certain chemo's. But, I get knocked down and get back up again as I guess, everyone on this site does. It is definitely a horrible roller coaster ride. So far, I have only been offered chemo. If they shrink the tumor's enough so I can have surgery in at least one of the cancer's, then possibly radiation. Please try and keep up your hope. I'm finding this is all trial and error as the treatments affect everyone differently. I'm sure there are other member's who can give you info on what you're asking.

mexloc
Posts: 10
Joined: May 2012

Miss,

Thank you so much for replying. I was wondering how long you were on the Cysplatin and Alimta? Also, what are the names of the other 2 chemo's you were on? Did you have improvement with them? I hope that your next report shows significant shrinkage of the tumor. :) Hope you keep me posted. Marty

MissNYC
Posts: 7
Joined: May 2012

Hi Marty.
when I wrote last time made a mistake, the Adencarcinoma is on the right and squamous cell is on left lung. When I first started treatment in Nov 2011 I had 2 rounds of Alimta and carboplatin (this put me in the hospital due to all blood/platelet's dropping and it did not shrink either tumor. They took me off that.
Gemzar & carboplatin in February which somewhat did shrink a bit on the left, tumor on the right stayed stable. When I went for my next treatment in March, again put in hospital for approx. 4 days as my body went haywire again. This time with having probs breathing and put on oxygen. Now on Avastin & Taxol (2 treatments so far and they cut the chemo by 50% in case I couldn't handle it.) and am due back 2nd wk in June for scan and if there is shrinkage will continue on this treatment. will keep you posted and I hope you will as well.All the best, Patti

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