The Cabozantinib summation

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:

Blood Pressure

117/75

Heart Rate

119

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.

Pain/Pain management.

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:

Fatigue

Diarrhea....the #1 side effect.

Skin changes.... my skin may lighten.

Hair changes.... my hair may turn white which is irreversible.

Taste changes.

Possible blistering on hands and feet.

Cabo may increase protein levels in urine. Just what I need!

Carpe Diem.

The latest test results

I had just emailed the doctor's office with the following:

"Hi Andres,

Please could you check with Dr. Drilon about today's 24hour protein urine test. If my numbers are once again too high I would like to go back to Baltimore. Maybe we could reschedule for next week if there is any point!

Thanks,

Adrian.”

The reason was I had seen my results on the web site!

Then Dr. Drilon called me shortly afterwards. Basically we discussed that the 24hour protein check was again too high but the spot check (small sample) was now well within range.

So what does this all mean? Simply put, I am going in tomorrow morning to start the trial. The only downside is that if the 24hour test reaches 2000mg/TV I have to stop taking Cabozantinib.

Normally, once starting the Cabozantinib I would need to return to MSKCC here in New York once a month. But for the first month I will have to have my urine monitored every week. The good thing is that I can do the tests in Baltimore.

Carpe Diem.