The Story So Far….

My name is Diane and I was diagnosed with stage IIIB lung cancer (which has since progressed to stage IV) April 11, 2014 at the age of 30. I have gone back and forth on whether or not to blog my journey and have decided to give it a try. All opinions and grammar errors are my own 🙂

A little bit about me. I am from Illinois and am currently being treated at Northwestern Memorial Hospital under the care of Dr. Jyoti Patel. I have a wonderful support team that is behind me 100% from my medical team, friends, family and co-workers. I have a twin sister that is a nurse who helps me with all the medical jargon and day to day things that involve this LC. I work for a Ford dealership in the internet department. I have been able to keep going to work at least on a part time basis. I have two of the best parents, a wonderful boyfriend and a yorkie named Deejay that gives me cuddles all the time!

My treatment so far has been I think extensive. There is a mass on my left lung and I had a few blood clots in my right lung. I was started out on afatnib which is a pill chemo. This sounded great! Until my first scan showed that the blood clots were worse and the tumor grew. I was quickly taken off the xarelto blood thinner and the pill chemo. I was then switched over to twice a day lovenox injections and a 4 regime alimta/ cisplatin chemo.

That proved to be a success! My tumor shrunk by 70%! We are on the right track. We did two more rounds of only alimta and moved straight into RADIATION!

I was slotted to do 25 rounds of radiation to the main tumor and my back. It went by fast! With only a week or so left of radiation I developed a swollen lymph node on my neck. Oh Boy. They did a biopsy. Cancer.

I started taking Tarceva at this point and it didnt work. Or at least it didnt shrink the lymph node..

That set us back a little. My onc sent my cells out to Foundation One to see if there was any other possible mutation other than being EGFR+.

The results came back that my tumor is rare and is not only EGFR+ but also has a MET amplified. This is where is gets a little confusing for me. With this new information I have been in contact with a Dr. from the Dana Farber Cancer Institute to start a clinical trial in Boston.

So as of right now (12/2014) I completed 10 rounds of radiation on the lymph node and it shrunk! I also had ten rounds of radiation to my back. We are waiting to have a lung biopsy on some spots that appeared after radiation. After that I should start the clinical trial!

I am still on the lovenox injections twice a day even though the blood clots are resolved. My main tumor is pretty much dead and has shrunk with every scan so far. The lymph nodes involvement is resolved as well.

This has been my life for the past 8 months. I hope to be able to bring awareness to Lung Cancer. That is is not a smokers disease. (Psst,.. I never smoked!) Or that its an old mans disease. Because, well, Im not an old man!

Thank you for reading!


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