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Palliative Care: What is it? How do I get it?

Cancer: Managing Symptoms | Last Active: Dec 29, 2023 | Replies (44)
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@merpreb

@seaspray- Palliative care is all care, from t he beginning of your illness to it's end. I don't think that a doctor would normally say this. My oncologist did because she was explaining something to me that I did not understand. Also palliative care is a rather new concept in treating everyone, although it shouldn't be. And it's far from complete unless it involves all qualities of life, including spiritual or religious. I know from your posts that you have had problems with Mayo in FL getting into trials and testings. But remember that palliative care also takes care of all basic care too. it's an all encompassing care regime that is slowly improving and evolving. It's far from perfect or finished. How are your scans now? How are you feeling?

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Replies to "@seaspray- Palliative care is all care, from t he beginning of your illness to it's end...."
seaspray | @seaspray | Sep 4, 2019

@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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