Expert Medical Opinion

In the last post I clumsily referred to a "Critical Case Advanced Medical program" at David's work. Well, David found the brochure and it's actually called "Expert Medical Opinion".  I could paraphrase what it's all about but then decided it's easier to scan it and share it with you as images. Click on them to make them easier to read.

I see where I got the "Advanced Medical" from - it's administered by Advance Medical.

David posted a comment (below) to this but I wanted to add it to the body of the post:

"The basic idea is that they are off gathering all of Laurie's medical history related to Colon Cancer. After gathering the scans, treatment, surgical and other information the Doctor will assemble it into a report that goes to a panel of experts. Those experts then provide us with ideas, contacts and assist us with moving on to meet with people that might be able to assist us. A lot of it is what we've been doing on our own or with Dr Dormady, but I hope has a lot broader insight and vision into what is going on around the US and the world. It can take a month to get a preliminary report from them. I was pretty psyched when the doctor called me less than 24 hours after I contacted Advanced Medical." -David

The Waiting Game

I am following my oncologist's suggestion to take a tour of the academic facilities in order to get some treatment ideas and to see if there might be a good clinical trial that would be right for me. So, I have plans to go see people at Stanford, UCSF, UC Davis, and MD Anderson in Houston. I have an appointment with Dr. Fisher at Stanford next week. The other three facilities won't even let me schedule an appointment until they get all of my records. Hopefully they are getting what they need. I actually have copies of all of my surgical notes, pathology reports, scan reports, scan images (CDs), and blood work. I don't have copies of recent clinical notes from my oncologist and chemotherapy flow sheets. In the case of MD Anderson, I have had to call or fax each facility and request records to be sent to them. The other facilities are making their own requests.

Next week we will see what Stanford has to say. I hope it won't take too long to get into the other places. My oncologist is prepared to try a lung cancer drug on me (suggested by the Target Now assay done a couple of years ago) but that will depend on insurance approval. Also I may not want to start a new treatment just yet in case a clinical trial needs me to be currently treatment-free in order to enroll. I'll let him make that call. My appointment with him is next week too.

David's work also has a Critical Case Advanced Medical program where someone collects all of my medical data and finds expert medical opinions from across the country. So, we will also have some input from that soon.

So, that's what's going on. Not much of anything, really. This kind of thing takes time and the upcoming holidays aren't going to help matters much.

My CEA has been bouncing around a bit. It was 10.2 on October 11, 67.9 on October 28, 39.3 on November 13, and 45.6 on November 18.

I'm still feeling fine. My energy is good, my hair is growing, my cheeks are still rosy. :-)

PET and MRI Results November 2013

Well, the new news isn't so good.

I'll start with the CEA. Previously, the highest my CEA has ever been was 21.7. On Monday October 28th my CEA was 67.9. So we knew something was going on. I didn't want to put it out there until I had my scans done, which are now complete. The scans were a PET scan and an MRI. The PET scan looks all over for suspicious tumor activity. The MRI provides a more detailed look at the liver since that's where we've been seeing all of the activity lately.

Originally the PET scan said that there were three or two or three spots in the liver. Once the MRI was done they were able to see that there are four spots in the liver and one spot outside of the liver in muscle near the left kidney.

That last one means that a liver transplant is clearly off the table, if it ever was on the table at all.

My last chemotherapy infusion was September 30th. These 5 spots did not all grow within the last three weeks so it's clear that they started to pop up even while on chemotherapy, meaning they have developed a resistance to the drugs I was taking.

Dr. Dormady has decided that I should go on a tour of Stanford and UCSF (and maybe even MD Anderson in Texas and Sloan-Kettering in New York) to see if there are any clinical trials that I might take part in, or to get treatment ideas. My appointment with the oncologist at Stanford is November 25. I don't know when I'll see the doctor at UCSF. These two teams may rub elbows with the people in New York or Texas and may know of trials that are going on there. We have been advised that in order to find out, we may have to fly there and meet with the teams in person.

Here are the reports if you would like to read the medical jargon:

MRI Page 1

MRI Page 2

PET Page 1

PET Page 2

PET Page 3

PET Page 4

You may wonder how I'm doing. Well, I'm doing as well as I always do. I feel fine. I have no pain, my energy is high, my cheeks are rosy. I don't want to go on chemo again but maybe I can squeeze some more time out of life by doing so. I will see the doctors and do what they recommend, as always. So far they have managed to keep me kicking. So, while I'm disappointed, I'm not sad; I'm determined.

 I will keep going and enjoy David and the dogs. :-)