Ongoing updates--back pain, MRI, and AMG 509

[Philly13]

I had MRIs done on the Lumbar, Thoracic, and Cervical spine. I ended up doing it at Jefferson Methodist Hospital. It took close to 4 hours and was an ordeal, but I managed to stay still and get very good images. The technician said he has never had anyone get through that long without moving or quitting. I told him it was my Navy Seal Training. He had a colleague who got excited because he was previously in the military and didn’t realize I was joking. The equipment there is 13 years old. The schedule at Penn is 35 minutes for each section of the vertebrae. I assume they have new equipment, and it works faster. I think I will ask more questions about that in the future.

Jefferson MO called last night to say that there are three places he sees where cancer is causing pressure on the spine. He is not a radiologist, so there may be more detailed information coming. Two in the cervical area (C6 and ??) and one in thoracic vertebrae (T12). He believes those things are causing pain.

First, Jefferson MO prescribed Thoracic and Lumbar only. Penn Med RO (my favorite Dr) had prescribed all three. Jefferson MO got it faster by saying tumors may be causing spinal compression. I asked about the third one to the Nurse Practitioner (my least favorite medical professional). She scheduled it for 8 AM, while the other two were for the afternoon. They called to say the MRI could not be that far apart. I canceled the cervical in the early morning. When I arrived, they “squeezed in” the cervical test. That is a good thing since there are problems in the cervical area.

Jefferson MO prescribed industrial strength steroids--Dexamethasone 4mg twice a day. First, I said I wanted to wait until I needed it. It made me crazy and emotional when I took it with the AMG 509. Then I said, let’s fill the prescription, and maybe I can get ahead of it. In a previous conversation, he told me that the steroids will counteract the immunological work we are doing with AMG 509. I don’t know what to make of that. I am not sure if I should start with the meds or revisit the subject next week.

Jefferson MO revisited the Foundation One Genetic testing. There is a mutation EP300/ Q767. In July of 2019, there were no targeted therapies, but now there are.

Jefferson MO said it would be no problem to get into the P300 program, but I needed to be ambulatory. I don’t understand the comment since I am ambulatory, and the pain meds have been helping since I began a program with Oxycontin 10mg ER every 8 hours and Oxycodone 5mg IR every 4 hours as needed. (I took an extra oxycodone at 2 hours while getting the MRI yesterday.) I suppose he is expecting this to progress rapidly and for it to get too painful to walk.

I have asked about chemotherapy, and he doesn’t engage on that topic other than to say we need to focus on getting the pain under control. He said some targeted RT and Dexamethasone can go a long way.

As expected it was an eventful week but I am not yet in a place comfortable enough to commit to a forward plan.

This is a tough note to write since there are so many thoughts going through my head at the moment.

I will be seeing the Penn RO this week and speaking to an MO there as well.

Philly

[Tall_Allen]

It sounds like you have several good doctors hard at work on your case. I hope you get into the P300 trial.

[Philly13 in reply to Tall_Allen]

Thanks.

Indeed I am fortunate to have a lot of top-notch doctors. I think it is cool that there was potentially actionable information in a report that was filed away more than 2 years ago with no therapies known at the time.

That is major take-home value, IMHO.

Philly