Gary update 7/30/10 - Good news? Bad news? Who knows?

I had my appointment today at Moffitt for a triple phase CT scan of my liver. The results came back negative. I would be excited about that except that this disagrees strongly with the PET scan I had earlier and I am continuing to have pain in the liver area, nausea, vomiting, and other digestive problems. The doctor is dumbfounded over it.

He says he sees nothing on the CT which would indicate any cancer growth. He can't explain the nausea/vomiting or why I'm continuing to be heavily fatigued. He said that, although all scans indicate that I have the slow-growing type of neuroendocrine cancer, that many of the manifestations of the disease are expressing themselves like the more aggressive forms. He said he could tell that I had noticeably deteriorated, but is at a loss to explain why since he says nothing has changed that he can see with regard to the tumors.

My radiation oncologist's office was to have sent the PET scan images to the doctor here at Moffitt, but that didn't happen for some reason. The doctor has agreed to review the PET scan images. He feels that, even if something shows in the liver, that he would not take a single-organ approach to this. He says that since this cancer is systemic in nature, that any regimen would need to also be systemic in nature. We had some shall we say "firm" words about that point, mainly that if the liver is what is causing all of these digestive issues, that wouldn't it make sense to tackle that. He has agreed to review all the results and see what else can be done.

Since this is manifesting itself as aggressive, he has decided to start me on Sandostatin. This is a drug with few side effects that has shown more promise with the more aggressive form, so he hopes this will make a difference. This is a monthly injection that can be administered by my general oncologist in Jacksonville, so I can start receiving that injection at the same I go in for my monthly Zometa infusion.

Also for the first time, chemotherapy was discussed. He said that chemo again doesn't seem to work well for the slower-growing cancers, but since mine is manifesting as the more aggressive, he may try it at some point.

He also mentioned the other two treatment drugs that have been discussed before. Both have shown promise in clinical studies, but both have horrible side effects unlike Sandostatin. He wants to avoid those for now, especially because the worst of the side effects are severe nausea, vomiting, and fatigue (not including mouth sores and skin rashes). He wants to avoid these if we can, and I would agree, especially since I'm dealing with most of those already!

So as usual with my Moffitt reports, unfortunately, we haven't seemed to have learned much. I want to be excited that the CT showed no liver cancer, but why does that contradict the PET scan, and why am I continuing to have these other horrible symptoms? He just doesn't know. That's not very reassuring.

This is disappointing, but God is good and faithful. I know I am in His hands as always. He is my strength. I know I will get through this, so I am trying to keep my chin up. Some days are easier than others in that regard.

Thank you for your continued concern, thoughts, prayers, and support. Believe me when I say that that means more to me than I can ever express. I couldn't go through this alone, and I thank the Lord that He has put so many caring family, friends, and brothers and sisters in Christ in my path to help encourage me in this fight. God bless you all!