Tag Archive | CDX-110

April 2013 MRI Results

Recently, I’ve had more frequent headaches in the morning & other symptoms, so we moved my MRI from mid-May to yesterday.

Results are in:

There is no new swelling of the brain. The tumor has increased slightly in size — nothing unexpected or concerning, really. In a way, not bad news. We will likely discontinue chemotherapy. We are going to move forward with the Ketogenic diet hoping that it will help reduce tumor size. My oncologists don’t expect this to happen, but we are encouraged by studies and  testimonials we have investigated. Here’s a video for anyone interested in more info:

Ken Lynne and Sandy

Ken, Lynne and Sandy

Dining with Chefs, Loosening Restrictions

Over the last year or so, I have become friends with my local butcher/fish monger, Lynne Sawicki, owner of Sawicki’s Meat Seafood and More in Decatur, GA, when I redesigned her website (http://sawickisfoods.com/). She offered to cook for Tina and I in our home and we took advantage of that offer last week. We decided that we could loosen the self-imposed ban on meat and we ate lamb and some yummy desserts, not worrying about sugar. I’m back to avoiding sugar, but the ketogenic diet will recommend that I do eat meat and fats and oils. Lynne has worked in some of the best kitchens in Atlanta, including Partner’s, Indigo, Alon’s, The Flying Biscuit, Nava,  Floataway, and Bacchanalia. It was a fantastic meal and evening.

Meal Train

The Meal Train has been a very helpful resource for us. Since I’m the family cook, when friends and neighbors sign up to bring us meals, it takes a lot of pressure off Tina and I worrying about what’s for dinner. Since I am Sawicki’s web developer, I have to take this opportuniy to promote them and their excllent Prepared Meals To Go. More information here on her site: http://sawickisfoods.com/prepared-foods/http://sawickisfoods.com/prepared-foods/.

Too Much Information / Full Disclosure/Too much information / No Time for Embarrassment

Since I’m sharing my story, I may as well share it all without reservations in case it’s helpful information to others. Rushing to make it to the toilet last week,  I was unable to make it and crapped my pants. Not a pleasant story to share and we don’t think it was specifically related to my tumor but I suppose these things can happen. The MRI revealed mild ventriculomegaly, slightly increased from the prior scan. This can cause incontinence, abnormal gait and dementia. This pesky tumor is becoming a nuisance.

Almost daily I have bouts of weakness and shaking where I need to sit or lie down to avoid falling. The steroids make my muscles weak. These are quite scary for Tina. It is difficult and tiring for her to move me to a safe place to land. I had an episode tonight which she thinks was a seizure, which maybe it was, because I was unresponsive and shaking while lying down after trying to go for a walk,  but  I tend to not want to admit that I may be having seizures.

The Foulness

“The Foulness is what I have termed an unpleasant taste/smell sensation that I experience daily. It’s an unpleasant, metallic taste/smell. When taking chemo, a common side-effect is that taste may be affected. This Foulness of which I speak is not when I eat something. It appears almost anytime. It could be triggered during a walk or anytime. It’s very unpleasant.

My blood counts are good. My spirits are high. My support network is incredibly helpful and uplifting. I can’t complain too much.

Next Steps

I will begin the ketogenic diet soon. I may have the option to receive compassionate use of CDX-110, which is a drug in clinical trials. I would not be part of the clinical trial, but may be approved for compassionate use. This is a drug that we have had our eye on for quite a while.