Gary update - 1/22/10 - only a week late!

Thank you everyone for your prayers for Annie. She is out of the hospital and doing better. I think she has more energy than she’s had in a long time! Now we have to figure out how to address all of her underlying health issues. After all the craziness, I’m finally able to write my status from my 1/14 and 1/15 Moffitt trip.

January 14 was just basic blood work and a repeat of the contrast CT scan I had back in August to see if the cancer had spread. It was fairly uneventful.

My January 15 appointment with the neuroendocrine oncologist was at best ambiguous. The radiologist reviewed the biopsy results from Shands, but they were inconclusive, he said due to “demineralization”. The doctor rendered a diagnosis based solely on the comparison between the two CT scans. He said he was “fairly certain” that I do not have the aggressive form of neuroendocrine cancer. That’s great news! The “fairly certain” part was a bit disturbing. I would love something more definite.

The doctor said that he would like to repeat the octreatide scan that I had at Shands. He said that with neuroendocrine cancer being so rare, many hospitals that don’t run octreatide scans often may have missed something. Evidently they received the scan report from Shands but not the images. He would like it run again in four (now down to three) weeks. This is a two-day scan. He would then like to follow up on the scan a week later. We discussed treatment drugs. The main drug we discussed is most effective on liver neuroendocrine cancer, but has shown promise with bone. The other two drugs discussed are experimental, likely not covered by insurance, and, in the doctor’s words, “extremely expensive”. Both drugs also have horrible side effects, which almost sounded worse than the disease! I’m not sure where things are headed in that direction.

We discussed the pain I’ve been having in my hip/pelvis. The best way to treat this is with radiation. We consulted with a radiation specialist at Moffitt. She went over my scans and was able to map the CT scan of the tumors to the probable locations causing pain. I had seen the images before, but never had them explained. It was pretty scary to see all of the tumors. They seemed to be everywhere. The doctor explained that often these tumors grow for years in the bone with no obvious problem, then one will grow and press on a nerve or muscle, causing pain. The radiation treatment is to bombard the probable areas with radiation in the hopes of eliminating or reducing the tumors in that area and easing the pain. That should mean hopefully that I can go off of the pain pills which keep me fatigued and unable to concentrate. Considering the relatively large area, I will need small spot treatments over several weeks. She said that if it’s a small area that doesn’t stand the risk of other organs being hit, they can be dealt with with one or just a few treatments, but in this case, I will need to have many smaller treatments. I will be working with a local radiation doctor to receive the radiation. I have a consultation with him this Tuesday (1/26). I haven’t been scheduled yet for the octreatide scan and follow up. I’ll let you know when those will be.

Overall I was disappointed. I had hoped for a more definitive answer this time. The oncologist said that they know the type, but they’re still trying to figure out the “grade” of my cancer. Yet more hurry up and wait! I am to continue the Zometa treatments in addition to the radiation. Hopefully the new octreatide scan will give us a better picture of what other treatments are available. That would be great!

Between this and Annie’s hospital stay and the new revelations of her health problems, this has been a tiring week to say the least. Through it all, God has been faithful and continues to be so, as He always is. What is impossible with man is possible with God. We hold onto the hope of healing that lies in the Blood of Jesus. Thank you for your continued thoughts and prayers.