Wednesday, February 29, 2012

PETs and Gorillas

Dave’s Great Adventure
Book 5, Chapter 1, Verse 4
February 29, 2012

Hello again. Today was a much better day.

We started out with me getting my PET scan (Positron Emission Tomography, if I'm correct). It's a scan which combines a CT scan with a nuclear medicine scan using some sort of radioactive isotope of iodine. Apparently malignant cells are aberrantly hyperactive metabolically and gobble the stuff up faster than normal when the radioactive iodine is attached to a molecule of sugar. So they do a CT scan of my body, and then overlay that scan with a scan of the overly active parts of my innards. Sounds easy, and actually it is, but the prep for the study...well, I wasn't ready for it.

I had been told I couldn't eat anything for six hours before the study, so I expected that I couldn't eat or drink anything after midnight, as with many tests and surgeries and such. So, we bought some carrot cake for me to have as a midnight snack and I ate it about 9PM. Only then did I find (on-line) the M. D. Anderson instructions for the scan, which included recommending a high protein meal the evening before and avoiding carbs. Oh well.... Turns out I could drink as much plain water as I wanted, too, even up to test time. I really should read the instructions to these things, but I suppose I think I know too much to be concerned with such details.

Anyway, we went up to the med-cen again today and found our way, with the help of a golf cart shuttle system, through the mazes of buildings and skyways. M. D. Anderson is a small city, self-contained with villages, parks, paths, hotels and restaurants. It would take a while to find your way completely around the place. But we're learning. We found our way, with the shuttle help, to the Mays Clinic where the PET scans are done. It's in a completely separate building from the main CT scanners, curiously, perhaps a quarter of a mile away. I had, according to my schedule, three appointments there. The first was "prep," followed by "injection and localization" and then "lymphoma restage." I checked in and sat down. A short time later my name was called, and I went to the back. Turns out all my appointments all ran together and I didn’t see Kathy again for several hours.

The "prep" involved getting out of all my clothes which had metal, like my jeans, and getting into scrubs. Then I had an IV put in my hand. Then, I was told, I would "rest." "Can I read the paper?" "Can I get my cell phone?" The answers were "No, you will rest. And uncross your legs." I was commanded to "rest." I joked, "Well, can you give me a Valium or something so I'll rest?" But they took me too seriously, so I told them that, no, I really didn't need a pill. Then they turned down the lights and left on a backlit picture of a park, with a pond and daffodils in the foreground with red and purple tulips in the distance, in front of me. I rested. ZZZZZ

About 30 minutes later a tech came in with a syringe encased in a heavy metal case. It was the radioactive iodine, with which I was going to be injected. He told me what it was and what he was going to do, he did it, and told me, again, to rest. For an hour. So I rested. With my legs uncrossed. ZZZZZ An hour later, another tech came in, and told me we were going to get my scan but first I was going to be given the opportunity to go to the bathroom, which I did. I came back out and sat in the chair where I had been told to wait. A tech walked by, looked at me and said, "Uncross your legs." I'm unclear, still, about the prohibition on crossing one's legs. Soon I was taken to the next room where the scanner was and was placed on the machine, which was, generally, like an MRI machine with a large tubular structure, which I was moved into and out of sequentially. It took, maybe, 30 minutes and it was all over. I guess the results will be available in a day or so.

Meanwhile I still wondered what my longer term plan was to be. After my PET scan, I had no further appointments at all. When I last saw Dr. Keating, the plan was to get on the new PCI 32765 protocol, but when that plan fell through, I was left with no follow-up appointments or scheduled tests. Before I left his clinic, Dr. Keating's nurse had told me that he didn't like to be told "No," and might argue with the protocol managers. But, after Gracie came back yesterday and told me that no exceptions could be made after having called them, I gave up.

But, Dr. Michael Keating is an 800 pound gorilla within the CLL community. If you Google his name and CLL, you will find probably hundreds of references and scientific articles by him. Plus, he runs his own CLL research organization, the CLL Global Research Foundation, which sponsors research all over the word. He lectures every month in locations around the world. Just this week he has returned from lectures in Hong Kong. So when I went back to the clinic this afternoon to see his nurse, she told me that HE WANTS ME to get on the PCI 32765 protocol and was still "in discussions" with the protocol manager. She told me to check back tomorrow by mid-morning to see if there had been any change. By now it was mid-afternoon so, we went back to our motel to get some rest.

Soon the cell phone rang. It was Gracie, the research nurse. She said that the protocol managers, after "further consideration," had allowed me to get into the protocol. Amazing, just amazing. The logic they used to make this exception seems to be that they decided the Rituxan which I had been given in connection with a stem cell collection in 2004 didn't count as "treatment." It was just used to mobilize my stem cells for the collection we did back then. I don't really know what difference that should make, but I'm happy it happened. Rollercoaster starting up, safety bars engaged, clank, clank, clank, clank....

But I'm not totally out of the woods with this study, yet. My understanding is that yet another exclusion from the protocol is the presence of Richter's Transformation, and we still don't know if I have this or not. My labs and exams are suspicious for it. The PET scan from today and the biopsy soon to be done will sort this out. Tomorrow will bring more information and hopefully no bad surprises.

And, as always, more later.