It must be March… Bad news

Discussion Board Forums General Discussion It must be March… Bad news

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    Oh, Cookie (Kris), imagine me at a loss for words. I can hardly believe what I am reading. The crazy thing about this is that we know a lot of patients do not even look ill. 2 Months ago at the conference, I could have sworn you beat this monster. I am also sending your post to Mel. He is so interested in everyone he met and especially YOU. Please keep in touch and I am crossing everything I own for your miracle to happen! I AM SENDING PRAYERS AND GIANT HUGS!


    Here’s the news from Monday’s appt… It’s not good. The few small areas I had eight weeks ago have doubled in size. I have one or two new tumors on the right side of my liver. I have another new note in the midst of all the previous ones. The area by my bile duct where the stent was has come back and is over two centimeters in 8 weeks. And scariest of all is it spread to my peritoneal cavity.
    As of right now there is no plan. Dr. Denlinger only had a few minutes to look at the scan and try to think about things. We spent a long time discussing options. One option is possibly trying interferon with keytruda, but that’s in Georgetown Maryland. And the trials not open yet. The interferon and obtivo trial is now closed to all but 2 types of cancer of which cc is not one of them. Dr. D and I are both going to reach out to University of San Diego Medical Center to see if they possibly have any ideas. They’ve opened up that Research Unit to study 60 different rare diseases and I believe that cc is one of them.
    We discussed the pros and cons of putting me on gemzar, oxaliplatin and 5-fu. Or gemzar cisplatin and 5-fu. I’m not looking forward to either of those choices. I told her that we already know I’m only going to get 3 or 4 Infusions before they’re too toxic.
    She will be having my latest brushing from April of last year tested for MSI High to see if I can get keytruda off label at Fox Chase. But thats a long shot since I haven’t been on the two previous biopsies.
    I have another appointment with her in two weeks. Hopefully there’s some semblance of a plan put in place by then.
    All in all I would say this day kind of sucks.

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