Met with Dr. Alex Drilon and Nurse Practitioner Claire Moran from 9:45 to 11:30 Wednesday morning September 17th.
Thanks to my brother in law Howard for his amazing note taking and summation, here is a recap of what was discussed as well as the results of certain routine tests:
Dr. Drilon suggested it was due to anxiety about the appointment. We will monitor this going forward. I am also off Metoprolol which controlled the heart rate but I can't be on Metoprolol and Lisinopril (new drug that lowers protein in urine) at the same time.
When Nurse Moran asked about the level of my back pain on a level of 1 to 10 (the worst), my response was 4-5. For pain management, they want me on the Hydromophone. What's causing the pain? Who the hell knows.
Best quote of the day (from Nurse Moran): "You met the registration criteria (for the Cabozantinib trial) and you are eligible for the program."
Daily regimen for taking Cabozantinib (known informally as Cabo):
Take one 60 mg pill a day with quite a few other restrictions etc.
Other things to know about Cabo:
Stay away from herbal meds, Seville oranges and grapefruit.
According to Claire, Cabo helps shrink the cancers and that will make me feel physically better.
Cabo side effects:
Diarrhea....the #1 side effect.
Skin changes.... my skin may lighten.
Hair changes.... my hair may turn white which is irreversible.
Possible blistering on hands and feet.
Cabo may increase protein levels in urine. Just what I need!