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Report from my last scan MPDL3280a + Avastin trial

Posts: 52
Joined: Sep 2014

I was scanned Wednesday and had a meeting with the trial doctor on Thursday. Scan showed some minor shrinkage and mostly stability. There was no progression or new mets observed. I am experiencing some pretty bad pain in my left shoulder that I am scheduling for an MRI. Whatever is going on in my shoulder has caused weakness in my arm and hand. I am no longer able to operate the clutch on my Harley. That's pretty sad.  The doctor wants to rule out a new met which might mean I would have to leave the trial. I also have to do a 24 hr urine test because the protein in my urine was high. Also he is starting me on the bone agent xgeva. I would be interested to hear others experiences with this med. Side effects etc.

Best wishes to all

Jojo61's picture
Posts: 1310
Joined: Oct 2013

Hi Firedude,

The news about minor shrinkage and stability is good news. I am sorry to hear your shoulder pain is so bad that you can't drive your Harley - very sad, indeed. When the protein is high in urine what can that indicate? I am hoping that your shoulder pain is something else less serious with a simple solution :(

Sorry I have no other information to share....just hoping all works out the best for you!



foxhd's picture
Posts: 3183
Joined: Oct 2011

this is what happened to me over this last year. It was my right shoulder and the pain was incredible. Nothing could be found. Then the weakness developed. Finally the mri showed the tumor(s) in my spinal canal and brachial plexus. I had radiation and am on votrient now. Recovery is progressing but really slow. I haven't ridden since maybe sept. I'm weak but pain free.

Positive_Mental_Attitude's picture
Posts: 454
Joined: Jul 2014

firedude, it's good to hear your tumors shrank and you have no new mets.  Hope things work out with the shoulder pain.

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