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Another newbie


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Hi, I'm Janet, age 55. Never smoked anything except a salmon. Diagnosed in May 2011 with stage IIIa adenocarcinoma, I had a large tumor in my lower left lobe, two hot hilar nodes in the left lung, and one hot subcarinal node, all poorly differentiated. The mediastinoscopy showed heavy vascularization between my lungs. I was unable to have surgery due to severe pneumonia at diagnosis -- I would have required a pneumonectomy, and the surgeon thought I wouldn't heal properly.

After 10 days in the hospital and weeks of IV antibiotics, I recovered enough from pneumonia to get 33 radiation treatments with 6 weekly concurrent carboplatin/paclitaxel doses, and one full dose of carbo/paclitaxel. Treatment finished in early August 2011. My first post-treatment CAT scan in late September showed the lymph nodes were almost completely resolved, and the tumor had shrunk by over 90%! I was feeling good, the CAT scan was good ... I thought I had a great chance at a cure.

In the following two weeks, I underwent several tests to determine if I was healthy enough to have the pneumonectomy after chemo and radiation. One of the tests was a PET scan, which found a hot spot on my right clavicle. A few days later two lymph nodes were removed and found to be more of the same cancer. So now I'm stage IV. Fortunately the brain scan was clear.

I may be getting radiation to the area near my clavicle where the lymph nodes were removed. I'm on a chemo vacation until January to recover from first-line therapy, unless I have symptoms before then.

Looking forward to getting to know folks here. I'm an engineer by training and a writer by avocation, so I hope to contribute something useful to the board.

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Hi Janet,

Smoked a salmon - are you in the PNW too?

I'm an architect by training and, verbose by avocation. You'll fit in great here. Hate to welcome anyone to this place, but we're a great group of people to have around, if I say so myself.

Stephanie

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  • 1 month later...

Thanks for the welcome posts!

The radiation oncologist and medical oncologist decided NOT to radiate my collarbone area, because the radiation field would include the top of my good right lung (and possibly the top of my left lung too). My left lung has already had a lot of volume irradiated, and I currently have radiation pneumonitis from that. They don't want to make it harder for me to breathe if it won't cure me.

I have a CT with contrast scheduled for the day after Christmas, and will be starting on Alimta (or possibly Alimta plus carboplatin) after the first of the year. Still taking antibiotics to keep the pneumonia at bay.

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Don't know how I missed welcoming you after your first post but WELCOME. You do help just by posting as Randy said and as Stephanie says, we are a great group of people. I was never a candidate for surgery or radiation so chemo has been my thing for 4+ years. I did Alimta well so good luck. Will look forward to your posts.

Judy in KW

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sucks that you are here. There is an ask the expert forum so there is an Oncologist here if you have questions.

Make sure you find the best drs available. The NIH/NCI has a list of comprehensive cancer centers and also clinicaltrials.gov have a list of clinical trials.

It is definitely like drinking from a firehose when trying to do research especially when you need the info yesterday.

Good to hear there is no brain mets. Have you had other scans for mets?

Take care

John

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