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The Scan Results- good news


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Hi All,

I had the brain MRI and CT scan yesterday afternoon and met with the oncologist this morning.  Less than 24 hours to wait for results, love that my KU crew now understands scanxiety! 
 

The brain MRI was clear (whew) and the CT scan looked great. Doc says the scar tissue is improving and my lungs look pretty normal.  So I mustered up the courage to ask at this point what’s the difference between a stable scan and no evidence of disease.   He said he considers me in remission, NED.   He’s very pleased with the results as they are atypical.  (Hmmmm is the hippie protocol working???? Who knows....)

So we know with ALK this is not a victory lap and to continue on a battle footing as it’s not a matter of if the targeted therapy stops working but when.

We did attend the virtual ALK conference this weekend, there’s some new thinking about monitoring guidelines as patients hit the two year mark on meds.  There are three ALK variants, 1,2 & 3.   Variant 3 is associated with worse outcomes and warrants closer monitoring      
 

We asked the doc if we know which variant I have.  Seems the science is so new that “way back” in 2018 variants weren’t tested.  I love that my oncologist seems to be a real partner here and he’s willing to see if we can rest my tissue to find out so we’re prepared in the future.

Labs will be at the end of September and next scans will be either in October or November.

For now we carry on!  Thanks guys for all the continued prayers and support! 
 

Michelle

 


 

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Hi Michelle ... Hearing the word "crew" does take me back to rowing. I probably will never do it again with all that is going on.

Ditto with LexieCat, Lin and Tom.

I think I'll start a thread so that someone can explain NED, stable and other things. I have some idea of the things but "sho nuff" explanations are great.

Steve

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Michelle,

If you could see me you would see a huge smile....lots of teeth showing.  I'm so glad for your scan results and always in admiration of the bravery and mindset you bring to your recovery and this forum.  I'm in with the crowd on this;  GO AND PARTY!!! You deserve it.

I get my scan tomorrow and results on Monday, so fingers crossed.

Lou

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8 hours ago, Rower Michelle said:

I’m out of reactions for the day, thank you so much.  Don’t know how I would cope if I didn’t have you guys!  

Well I asked the same question about you. You were very instrumental in lifting my spirit and raising my hope. Your good results are especially important to me.

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