Wednesday, September 17, 2014

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.

Tuesday, September 16, 2014

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.

Friday, September 12, 2014

Blindsided again

After numerous (and I mean numerous) scans, blood tests, urine tests and EKG's my urine protein is too high.

For me to enter the trial my protein level needs to be 1.0 or below. Mine was 1.8! If you are on the trial and your level gets to 2.0 then you have to stop the Cabozantinib. The direct cause of the elevated protein level is from me getting Avastin all this time. While the drug had kept my cancer in check for the longest time it was also causing problems with my kidneys.

The only thing for me to do was obviously to not get the Avastin anymore. That is now the case. The next thing I have to do is drink copious amounts of water to essentially flush my kidneys and get rid of the lingering remnants of Avastin. Easier said than done.

So for the next few days I am trying to consume serious amounts of water and I will be going back to MSKCC in New York on Wednesday September 17th. Hopefully the protein will be at an acceptable level and I will be able to start the Cabozantinib.

I don't have to tell you that this was all hugely disappointing but I need to move and and hope for the best.

Carpe Diem.

Saturday, September 6, 2014

Onwards

I had my consult with the lead investigator of the MSKCC (Memorial Sloan Kettering Cancer Center)  trial yesterday. It was a really excellent and productive meeting.

In a nutshell, I will be starting the Cabozantinib treatment at MSKCC's Phase II trial this Friday September 12th. It's a one a day pill.

The doctor was really really nice. As was his oncology nurse. I am really excited to be a part of this trial and work with them.

What was gleaned from my liver biopsy a couple of months ago was that I had a RET rearrangement (mutation) in my cancer cells. Only 1% of the population tested ever has this mutation. So in a way, I'm very lucky indeed.

This is all bitter sweet as I will not be going back to UMD St. Joe's for the foreseeable future. I had spent 5 years there and made a lot of good friends. But time to move on to the next treatment regimen.

The one thing that the Doctor reiterated was that they are no longer looking to (or able to) cure my disease. It now has to be managed. Managed hopefully equals time and quality of life.

Now where did I put my suitcase?

Carpe Diem.



Wednesday, September 3, 2014

NY NY

Off to New York tomorrow (Thursday). I have an appointment with Dr. Drilon at Memorial Sloane Kettering Cancer Center (MSKCC) on Friday. This is all to do with the Cabozantinib trial.

Carpe Diem.

Saturday, August 30, 2014

Chemo ? (Round ?)

Ok, so here it is. Blood work was fine, urine protein was normal, weight was sort of stable at 146lbs and blood pressure was good. I did not get the Alimta or the Avastin but I did get the Zometa. It's a bone strengthening drug that I have been receiving for the past few months.

I had a good chat with Dr. Schraeder. The consensus is that I get into a phase II trial at Memorial Sloan Kettering in NY. It's too involved to explain so check out this link:

http://www.mskcc.org/cancer-care/trial/12-097

I will know more next week when I hopefully get in touch with the Doctors at MSKCC.

Carpe Diem.

Tuesday, August 26, 2014

And the results are.............

NOT what I wanted! The word progression usually means something good. But in my case it's not.

While the cancer in the lung appears stable there is progression in the liver and the bones. It will mean a change in the chemo protocol but at this stage I am not sure what plan B is yet. I will still go to the "spa" on Friday but will not get the Alimta and the Avastin. Only the Zometa which is a bone strengthening drug.

I am getting in touch with all my consultant doctors and I'm sure a plan B will be formulated. I'm feeling ok but obviously a bit disappointed. Also a bit afraid of the new unknown.

Carpe Diem.

Scan day

Oh joy. PET scan this morning and then hurry up and wait for the results.

Then off to the Spa (chemo) on Friday. What a lovely week.

Carpe Diem.

Saturday, August 23, 2014

One very content and happy man

At dinner with Diana, Rob and Mike. Yes, that is Tiramisu cake.


I want to thank each and everyone of you who wished me happy birthday. Screw you if you forgot or didn't care  I have tried to personally reply to all of you. If i missed you I am truly sorry. As I said before, I kind of like getting older because the alternative sucks. Thank you all from the bottom of my heart for your love and support these past few years. Need I say more?

Carpe Diem.

My birthday wish


OK, so you are not supposed to tell anyone about the wish you made or it won't come true but here goes anyway.

I ask everyone that wishes me a happy birthday today to please do a stranger a small favor. Or do something or anything good today. Not in my name or anyone's name.

I count my blessings every day and am happy to "age" and celebrate my birthdays for obvious reasons.

Carpe Diem.

P.S. The picture is my daily reminder.