← Return to Palliative Care: What is it? How do I get it?

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@seaspray

@merpreb -To answer your questions, my scan last week was all stable! I am thrilled as this shows that the Tecentriq that I started months ago is working although many had doubts switching from 3 1/2 years of Opdivo to another immunotherapy would help. I do have a Rhuematologist appt coming up in 2 weeks to see if all my pain is from one of the "itis" family. Inflammation is my worst complaint along with extremely tight muscles. Just went through a few days of prepping for this Hurricane, which will be on our coast in a few hours. Now I can actually have a day off.
BTW, I never had problems with Mayo for trials.....they had no trials back in 2014. I went to Tampa, Florida to Moffitt for the trials that I flunked out of!
Even after my husband died at Mayo, there was no offerings of any type of service. I have to be my own advocate on everything. I only see the oncologist once every 3 months for 15 minutes. They are understaffed and have grown to so much in the 5 years I have been going there.
Hopefully I will still have power at my house tomorrow morning to take a shower....have my labs and infusion at 8:45!!

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Replies to "@merpreb -To answer your questions, my scan last week was all stable! I am thrilled as..."

@seaspray- Oh no, you were in Dorian's path? Do you have anyone down there that can check?
Hip hip hooray! Such excellent news about Tecentriq. What is your status now?
I have never tried to get into any trials as SBRT has worked beautifully for me. Also my oncologist thinks that for me, any infusions would make my quality of life pretty miserable without knowing if it will do anything. My doctors have given me 22+ years so far so I'm not arguing!
Good idea seeing rheumatologist. They have so many extra blood tests that they can do to limit the focus and see what they can find.
Let me know about your home, will you?