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Heidi O

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Hi Everyone!

I was diagnosed with unresectable nsclc stage 3A adenocarcinoma in Oct. of 2018.  I first learned of Lungevity very recently and am happy to find and give support.  The diagnosis was a complete shock as I am a fitness enthusiast/professional fitness trainer for over 16 years.  I have never smoked, have lived a very clean life, and exercise daily.  I had no symptoms at all and this was an incidental finding through a CT scan when my doctor ordered one to evaluate an ovarian cyst.  Being 55 years old at the time and having a CA-125 tumor marker result of 36 (1 point above what is considered normal) my doctor ordered the scan to cover chest, abdomen, and pelvis.  The ovary looked fine, but a 2.5cm mass was found in my upper left lobe with 2  "plump" lymph nodes in my mediastinum.  Long story short, I have been responding well to treatment.  Chemo-radiation seemed to have been very effective and I will have my 19th immunotherapy infusion (Durvalumab) this week.  I am close to completing immunotherapy, if all goes well in early Jan.  I am curious if anyone has completed all 26 Durvalumab infusions and how they are doing post therapy.  I am terrified to stop treatment and "wait and watch" as the treatments seem to be helping, but who knows...

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Hi Heidi!

Welcome to the family!! It’s so nice to meet you. Unfortunately your story sounds very familiar (I was a 51 yo competitive rower).  You’re “lucky” to have been diagnosed at Stage IIIa, it’s fairly rare.  Best wishes for reaching the one year mark!  It’s great you’ve been able to manage nearly the entire course of Durva!  

As you will learn, there is a wonderful set of friends in “The Durva Club” under the Immunotherapy section of this forum. They are having “fun” going through the uncharted waters together. 

I’m so glad you found us, this is the place where the Beatles had it right.... with a little (sometimes a lot) of help from your friends. 

Another Durvy! Rock n Roll! 

Michelle

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By all means go to the Durvalumab section under Immunotherapy. That is where most the current and former Durvalumab users share our information and experiences. Sounds like you are doing well with getting  to #19. I was heading to number 19 myself last month until the last CT and PET scan indicated a recurrence in one nodule, and a possible but very small indication on a new lymph node, at which time my Med Onc suspended my infusions. 🤬 Recurrence confirmed by needle biopsy on the nodule two weeks ago, and I am now scheduled for an EBUS Needle Biopsy of the lymph node this Thursday. If the biopsy is clear on the lymph node, we're going to try stereotactic radiation on the one recurrent nodule. The Rad Onc is being cautious as I've already went through the Concurrent ChemoRadiation and that same spot had already been hit with radiation. Although I won't get the 26 infusions, I do believe the Durvalumab very likely delayed any progression. Plus my brain MRI came back clear as well. There are several people that completed all 26 infusions I believe and a few that are closing in on it.  Best wishes.

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Thank you Michelle and Ron for your warm welcome.  Ron, I am thinking of you and hoping for a clear biopsy on the lymph node.  I'm happy to learn your brain MRI was clear.  That is great news!  I'll head over to the Durvalumab section.  Thanks for the guidance....see you there!

Sending healing and cancer crushing thoughts to all!

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