An Octreoscan and a Visit with the Doctor

We spent the past two days at Intermountain Medical Center while Mer had an octreoscan. He was injected with a radioactive substance (indium-111) mixed with octreotide (the drug used to slow the tumor growth and ease the symptoms; the brand name is Sandostatin.) As the mixture went through Merlynn's system, it "lit up" his organs as it traveled throughout his body. Pictures were taken for about a half hour starting at noon on Monday, then for a couple of hours on Tuesday, followed by a CT scan. Most of the concoction eventually left his system, but it stayed and "stuck to" the tumors, making them "glow". By looking at the images, doctors were able to see where the tumors are located.

 

The biggest reasons we decided to have this scan done were to try to find the "primary" or original tumor, which is suspected to be somewhere else in Mer's body, and because the specialist we want to meet with in New Orleans said he wouldn't even see Merlynn unless he could see the results of this scan.

 

Okay, the results: Although the primary tumor site was not found during the octreoscan, and the scan does show 8 large tumors in his liver, we were happy to learn that the tumors do not appear to be in any other major organs. (The radiologist wasn't able to see a difference in the size of the tumors when he compared the CT scan results with the first one.)

 

The above picture shows the results of the octreoscan. You can see the tumors glowing in Merlynn's liver. I can only count 6, but the radiologist could see 8. (Tumors smaller that 2 cm don't show up on the scan.) The reason Merlynn's kidneys are aglow in the image is because some residual radioactive material was still there. There are no tumors in his kidneys.

 

Seeing Mer's liver lit up like a Christmas tree and knowing there are eight big tumors totally freaks me out and makes me cry. (Merlynn continues to remain calm and always dwells on the positive side of things.) We feel very blessed that the results were not worse and no tumors were found in his pancreas, kidneys, bowel, lungs, or spleen. Dr. Nibley also told us Mer's liver is still functioning normally, and that's good!

 

The doctor doesn't feel we need to go to more drastic measures at the present time to try to reduce or remove the tumors, but we'd still like to see what other options are out there and consult with doctors who are specialists in this field. There are only 10 specialists in the United States and none are in Utah, so we'll plan some fun trips and go see them!

An Update From Merlynn

Merlynn sent the following info in an email, and I thought he explained what's going on much better than I can. He told me I could include this update on my blog.

"Once a month Laurie and I go to the Utah Cancer Specialists Clinic (UCS) at the Intermountain Medical Center. Depending on whether we have to wait to see the oncologist, we're normally there for less than an hour. I get a shot in my behind from a nurse, which takes about 10 minutes, and occasionally we get to see the oncologist for another 10 minutes. Most of the time we spend in the clinic we are just waiting for things to happen. 

The shots I am taking, 30 mg Sandostatin LAR, are quite expensive but are very effective in controlling the very undesirable symptoms of carcinoid cancer and are also supposed to slow the growth of the tumors. The needle is the size of a small harpoon but needs to be that big and long because the injection has to go into the muscle and consists of a time-release powdered drug which is dissolved in the liquid phase just prior to the nurse doing her thing. All this being said, we were still surprised at the amount that UCS billed for only my Dec 14, 2011 office visit. Please see the attached graphic. (If you click on it, you'll be able to see it better.) All we can say is: Thank Heavens for good health insurance!!!

 

I had some blood work done last week and had the first CT scan done since Sept. 28, 2011 when I was diagnosed. The scan indicated that the tumors in my liver are "stable", although some of them are quite large, 3" x 1 1/2" x 1", and that there appeared to be no cancer tumors outside of my liver. We are quite anxious to get the "no cancer tumors outside of my liver" confirmed by a more specialized scan called an "octreoscan" that is designed just for detecting carcinoid tumors. That scan is scheduled over a 3 day period next week.

 

The Chromogranin-A (CgA) cancer marker in my blood work was down to 66, which is by far the lowest it has been since I started the shots when it was 1,900+.

 

All in all I feel really great, we feel very blessed that things are going well, and the bills are being paid! Thank you for your faith and prayers in our behalf. "

 

(This is Laurie again.) I just thought I'd mention that the shots Mer's been getting have gotten easier to take. There have been fewer side effects and less pain at the injection site. As Merlynn has said, "All's well that goes in the end well!"