katelynandtyler

Thanks so much kst. Sorry for the late response it had been a busy weekend for us.  Plan for now is to meet with a GI specialist/Oncologist for the liver mesentery who Dr. Marr Oncologist (melanoma specialist) referred, then we are meeting with the head neck and throat surgeon and Dr. Marr (University of Nebraska Medical Center) to talk about the parotid and surgery there.  They said parotid plus 15-20 nodes.  We are waiting on the results to come back on the parotid biopsy to see if there’s a BRAF mutation as well

Thanks so much Bubbles. Sorry for the late response it had been a busy weekend for us.  Plan for now is to meet with a GI specialist/Oncologist for the liver mesentery who Dr. Marr Oncologist (melanoma specialist) referred, then we are meeting with the head neck and throat surgeon and Dr. Marr (University of Nebraska Medical Center) to talk about the parotid and surgery there.  They said parotid plus 15-20 nodes.  We are waiting on the results to come back on the parotid biopsy to see if there’s a BRAF mutation as well

Hi Bubbles, quick update.  Katelyn's biopsy came back from her liver and they said it was not melanoma, but that it was neuroendocrine.  They never said whether it was cancerous or not and they said we just needed to see a GI specialist.

We are so confused and haven't been given any direction.  They said they would be surgically removing her parotid gland and lymph nodes now.  We are uncertain if this is what we should be doing as we have no idea what these lesions are in her liver and mesentery.  All we know is that they said it isn't melanoma but never said it was cancerous.

Any advice would help.  Thanks!

Ok great! It seems we may have alot in common in terms of lifestyle so that's good to hear it from you!  One thing I'm learning is no matter how healthy anyone is this nasty disease can affect anyone.    

That is great news! Fingers crossed and until then we will make sure we fight hard and follow treatment religiously.  I will make updates on this post as things move forward.  You have been so much help and give us hope.  One last question for you…we are very health consious and believe that eating well can help fight this thing as well.  Or, if anything, help Katelyn's immune system to stayy strong.  Have you done anything personally with your nutrition?  Any blog reccomendations?  

Thanks so much for this information as well!  I will be looking at all of these in between work.  Another question I have as it seems like you have gone through this whole process in detail is…

…with all of this new and improved treatment how is the outlook for treatments or drugs in trials ahead of us?

You were extremely lucky to have had the opportunity to be in a trial for Optivo and, like you said, none of the tretments were yet approved by the FDA, but now they are.

From what you have heard and learned are the next wave of FDA approved drugs going to take even another big step?

Thanks so much Bubbles.  Your encouragement and help is grateful appreciated. We just got done with another appointment (oncologist/melanoma specialist) and she said we will be going with yervoy coupled with optivo for 3-4 months then do a PET scan.  This will start after the liver biopsy comes back just to make sure…planning not to biopsy the mesentery due to it being surrounded by bowels.  They are also looking into a mutation (BRAF and not sure what the other one was called) to see if that will alter what she takes.  

Did you experience any side effects while on optivo?

Thanks so much Linda!