Keytruda, radiation, and a puppy

Two weeks ago I flew up to NYC for the day to Weill Cornell Medicine to talk with them about clinical trials, as my oncologist here said there isn’t much more he can do for me.  I went with one clinical trial in mind, a PSMA-based targeted radiation trial, but came away with the recommendation of a Keytruda-based trial. Keytruda is an immunotherapy drug that basically rips the invisibility cloak off of the cancer cells so that my own immune system can recognize and kill them. It is FDA-approved for other cancers but not yet for prostate cancers of my type.

The trial would require traveling to NYC every three weeks for the duration of the trial. My doctor here said he’s used Keytruda with other cancers here for three years and it seemed silly for me to have to travel to NYC that much, so he is asking Merck, the maker of Keytruda, to see if they will pay for an off-label use of the drug for me so I don’t have to travel that much. We should hear this week. Your prayers are appreciated, or a call to the Merck CEO, Ken Frazier, if you happen to know him. He should have more time on his hands now that he’s quit his manufacturing council role.

Of course there is no guarantee I will have a response to Keytruda–but it’s worth trying because a response can be a “home run” as the doctor terms it, actual remission, which is practically unheard of with advanced prostate cancer. I should know after 3 or 4 months on Keytruda whether I’m having that response or not. If I’m not, I can quit and switch to a PSMA-based trial.

The other thing I’m doing is getting some external-beam radiation on my lumbar spine and iliac (part of the pelvis) to reduce pain. I’ve had 4 of 10 daily treatments. It’s pretty quick and easy with no side effects expected. I wanted to do it before Liz’s and my two-week bucket-list trip to Scotland, Wales and England! We depart September 9th and return on the 25th. It is an escorted tour so we just have to do as we’re told rather than make a lot of decisions. We are very excited to see Edinburgh, Wales, the Lake District, the Cotswolds, Oxford, Bath and London. Liz has never been to Britain, and I’ve only visited London and Bath on business.

When we return, we are acquiring a … puppy! Can you believe it? Us? He is a Cavalier King Charles Spaniel.

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King Charles Cavalier Spaniel Puppy

 

Liz and Mark’s first dog ever.

Since my last email, I turned 60. Liz gave me a really wonderful birthday weekend/party up in Townsend, which is near the Great Smoky Mountains National Park. Some pictures from the event are up, with more to come. It was great having so many friends and family members there.

Pictures: https://marknotess.smugmug.com/Events/Marks-60th-Birthday-Party/

Thank you for your prayers and thoughts.

The Beach

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Opa, Awaiting Conversation

Today we enjoy our last full day at Holden Beach. For as long as I’ve known them, my in-laws have been going to Holden Beach in North Carolina every couple of years. It’s a practice begun when Liz was a child. I and our family first went in 1987. After that we lived in Colorado and rarely if ever went. In recent years we’ve gone quite regularly. Now I wouldn’t miss it. It’s a practice that grows on you like an incoming tide. Objections like sandcastles are overwhelmed and disappear. Continue reading “The Beach”

Disabled? Me?

cognitive-impairmentWow. You know that thing that happens not very many times in your life when you suddenly realize you were looking at a major situation all cockeyed, off by a 90-degree angle? That thing happened to me today.

It started out like a normal day, with an early oncologist’s appointment and then heading into work. In that appointment, Dr. Monco and I talked about what happened on my recent Nashville trip to investigate clinical trials. He agreed with starting radium-223 treatments by the end of the summer and waiting on clinical trials until my PSA doubling time shortens. We talked about the impact on my job of cognitive and emotional side effects, from treatments and meds. He doubled my antidepressant. A normal doctor-patient discussion.

But then the following conversation happened. Continue reading “Disabled? Me?”