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Hi Everyone, Got a new Dr and went yesterday, much more of an understanding of what is going on with my cancer treatment and durvalumab as far as moving forward. Dr asked me, " are you the type that wants and explanation of what is going on?" sure, I said, I want to be my own advocate.so then I was told ( which I wasn't told from other Dr) my PDL 1 is negative, and that means very rarely will Durvalumab have any significant cure for NSCC, so Dr said he will, "dismiss" that and want to continue with treatments. Hmm? Sounds like they need a certain amount in the "study" that have PDL 1 negative to see what happens, so with that, I am not a mouse that they are experimenting with. So with that knowledge I said no to Durval, And for the main reason the very harsh and adverse effects it has caused on my health, to me quality is certainly better than quanity. Going for another CT 10/31 because there are these teeny tiny nodules, so small the radiologist says, "inconclusive" needless to say being told my CT scan was "good" on 9/17 and then this, well which is it? I will know more on the 4th of November, so glad I feel 85 % better now, the swelling has gone down in my legs, face, and arms. And I can actually breathe while I walk again. Pullmanry Dr says these teeny tiny nods usually fall off in 6 months. I am carrying on now, I had my med records sent to MD ANDERSON, waiting to see if they can offer me a hope that I can cling too. Thanks to all of you! Wishing all a beautiful day!

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Kate,

Sounds like this doc is gonna be more on top of it! Hopefully, he'll help find a better treatment plan for you. I quit the Durva too...bad side effects for me- metasticized- and also no PDL1.

Those little nodules show up a lot I think. I had one show up during my Durva...even glowed some on the PET...like a 3 or 4 I think. They (Pulp-Fictioned me) biopsied it...and it was just inflammation.

Keep us updated! ☺️

 

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