November 03, 2011

Where are you going?

On my way to Boston, I obviously had a lot on my mind. This is what I wrote on the plane yesterday morning:
When traveling and someone asks, "Where are you going?", I simply want to reply, "Nowhere, I'm here for quite some time, if I have anything to say about it.". These last seven years have included so many ups and downs, twists and turns, I have become somewhat immune to emotions, the negativity, and times immune to the seriousness of the ramifications.

I just carry on until the next set back. Bad news? I just regroup, lay out a new plan or adjust the current one. The point is, I move forward at a slow steady pace. I'm not 100 percent sure what actually will happen three hours from now. My instincts tell me that today my medication will be increased, but who actually knows.

A day later, today I have a bit more to be optimistic about. Yes the dosage of Cabozantinib (XL-184) was increased (from 25 mg to 125 mg). I took my first dose of the increased quantity yesterday afternoon and my second this morning. Last night I slept better than I had in weeks. It might have been exhaustion, it might have been psychological based on a feeling of relief, having hope that the new dosage will be effective and I will be able to resume to a better quality of life with less pain and less fatigue.  Whatever it was, it was great. I woke up this morning and realized I hadn't had in pain medication in twelve hours. That too was a first in several several weeks.

The doctor appointment fell right in the middle of my schedule for pain medications and I needed to have an empty stomach so I could take the first dose of the XL-184 while at the doctors office. Additionally, I had to wait nearly two hours for the new trial drugs to be delivered from the pharmacy. Consequently, I was four hours late taking the pain pills. I swear I could feel them working within 10 minutes as I rode the subway back to the airport. My flight back to Kansas City was direct but better than that, Mary and Brad were waiting to drive me home! That was the perfect way to finish a very long day.

The side effects that are most concerning are excessive exhaustion and complete loss of appetite. These are supposed to surface within 24 to 72 hours, if at all.  I remain optimistic, as patients in previous phases of the trial have found it to be generally very well tolerated.
My next trip to Boston is not for three weeks, in the mean time..... I'm not going anywhere!


Anonymous said...

Thinking of you today. Lots of love to you, Mary, and Brad. Hope the increase in meds provides relief. - Paige

Kathy Meade said...

I am thinking positive thoughts and that you will see a very positive response soon. I hate that you have to deal with all this.

Dan said...

Hoping for the best for you. 125 mg is a strong dose and I hope you'll tolerate it well. The pain relief will be worth it, whatever your experience. You're an inspiration, David!

Rose said...

I like that. I can only imagine how hard it would be to have a different attitude, but I like the "not going anywhere" response.

Anonymous said...

Hi David,

You may try Chinese medicine and taichi for therapy. Wish you speedy recovery.

Anonymous said...

Thanks for sharing your story on this blog. mdv3100 should be approved in the next few months based on positive data that was released this week. Alpharadin, which targets bone mets like cabo, is also on the horizon after positive data was released recently. God bless.

Anonymous said...


you're finding it tough - sometimes it's hard to smile through the down times. You are human and allowed to get negative -all of us on this journey do!!

So many of us are praying for you - remember The Lord IS your shepherd even if sometimes it doesn't seem like it.

There is so much love coming your way - Bless

Melvyn 'from across the Pond'