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Evangeline

Odd Case ... Or So I'm Told

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Dear Fellow Members:

I recently joined seeking your opinions and wisdom on how I might proceed in the future.   My story began in late 2015 when I was diagnosed with a brain tumor after suffering a mild seizure which was  manifested by involuntary movement of my arm & leg.  The MRI image of the brain tumor indicated a metastatic cancer rather than a primary brain cancer yet subsequent PET and CT body scans did not reveal cancer any where else in my body.  The brain tumor was removed & its pathology was "suggestive of a pulmonary origin" (i.e., Stage IV NSCLC).  Craniotomy was followed by stereotactic radiation treatment (SRS) in Dec 2015.

Since 2015, both my brain and body are scanned every 3 months.  To date, small (< 1 cm) cancerous lesions have returned to the brain on two occasions - July 2016 and August 2017.  Both cases were successfully treated with SRS.  Of particular interest, however, is that all PET and CT body scans performed to date remain NEGATIVE for the occurrence of cancer anywhere else in my body.  Additionally, I am and always have been non-sytematic with the exception of the initial seizure. 

My doctor has told me that my case is 1: 2,000,000 and no one is quite sure how to treat me.  Chemotherapy was not suggested until the start of 2018 in an attempt to fight the "apparent systemic" disease so as to stop the cancer from returning to the brain.  Despite my hesitation, I agreed to 4 sessions of a three drug regimen, which subsequently turned into an additional 4 sessions of a two drug regimen, which has now turned into indefinite sessions of a one drug regimen!  Needless to say, I no longer feel as good as I did before the chemo.   

Despite all of the above, I know that I am very, very lucky to be alive and in relatively good shape.  I think my biggest frustration is that I cannot find anyone to talk to who has a case similar to mine.

Any thoughts or suggestions? 

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Hi Evangeline and welcome!

Yours is a very strange case! Maybe someone else on these forums will know of something similar. I have a couple of questions..Was biomarker (tumor genetics) testing done on your tumor that was removed?   I wonder if you'd be a candidate for immunotherapy or targeted therapy. Second, I wonder if you're being treated at a major cancer center or a community treatment center. Since yours is such an unusual case, if you haven't been seen at one of the big places, I wonder whether a second opinion from one of them would be possible. 

I'm glad you found us! Hang in there and keep us up to date.

Bridget O

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Evangeline,

Oh my! I don't have a clue on treatment.  NSCLC was the determination?  My reading suggests that non-small cell does not often spread to the brain but small cell does.  

I hope your treatment team comes up with ideas, soon....

Stay the course.

Tom

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Bridget:

Thanks so very much for taking the time to read my post. 

1. Yes, the tumor was "genetically tested" and resultant Diagnostic Molecular Pathology Report indicates the tumor was negative for germ line or somatic mutations associated with NSCLC with the exception of KRAS and FGFR1.  

2. I am being treated at Memorial Sloan Kettering Cancer Center in NYC. 

3. Another odd fact about my case ....  instead of losing weight, I gained 30 lbs in the the 3 months immediately following craniotomy & radiation treatment.  No one could explain why. Although I have lost ~15 lbs, I cannot seem to lose anymore no matter what I eat or doo not eat.  Again, no one can explain why.  Go figure!

 

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Tom:

Yes, sir .... NSCLC was the diagnosis!  To date, the only place that cancer has ever been detected is in my brain.

One of my doctors once said to me ..... "you got jipped" .... because there was no way to detect lung cancer in me at an early stage as it is still not present / visible in my lungs.  Had it not been for one mild seizure, it would not have been detected in the brain.  After all, no one does an MRI scan of the brain as part of your annual physical.

All of my friends and family are now going in to their doctors and telling them ... "I want to have my head examined!" 

Thanks for your input

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Hi again Evangeline,

Sounds like you're with one of the best and they're doing all the right things. If there's any new treatment MSK would undoubtedly know about it. Your cancer is indeed very odd!

Bridget O

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Hi, Evangeline,

Welcome to LCSC. This is a great site to ask questions and share experiences. I will encourage our members to respond in this thread. Hopefully you'll be able to make more connections!

We are here for you,

Lauren
--
Digital Community Manager
LUNGevity Foundation 

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Thanks, Lauren:

I am feeling a bit lost and alone as I cannot find anyone with a similar case no matter what website I search.  I should clarify and say that I cannot find anyone "currently" sharing a similar case as I did find two posts on the American Cancer Society network that were nearly identical to mine but each was written in 2002 and/or 2003.  Thinking positively, I reached out to both authors believing they have remained well and are living wonderful lives !!  

Regards,

E

 

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