Gary update 4/9 - Day 3 - Another "big day" fizzles

We had our visit with the neuroendocrine doctor today to go over the octreatide scan results. Another disappointment: The results were "inconclusive". He mentioned the drug sandostatin again and said that "statin receptors" in the neuroendocrine cancer cells are what uptake the octreatide. In my case, they are not. He says this does happen in 1 of 10 neuroendocrine cancers.

We discussed my radiation. He was very surprised to hear that I had had so much nausea and vomitting during the treatment. He said he would not have thought that I would have had any!

The doctor would like to run another CT scan contrast in six weeks to gather more information since the octreatide scan is not providing us with what he needs. He said we need to find a scan that will work consistently to understand the extent of infiltration of the tumors and whether treatments are working. We discussed the CT/PET scan that my radiation oncologists wanted to due at the end of the month. The doctor said that he would prefer that this be done here. Also, he said that a PET scan may at some point be beneficial, but at this point, he just wants just the CT scan, not a PET scan or a CT/PET combination.

We discussed Sandostatin. This drug tends to work best in patients that uptake well on octreatide scans, which does not appear to be the case with me. There is another drug, the name escapes me now, that he has mentioned twice now. He feels it may work better, but it has bad side effects -- nausea, fatigue, and mouth sores. That sounds like fun! He said that since I'm still having some residual effects from the radiation, he wants to wait six weeks to start me on this if that proves to be an option (it may not be covered by my insurance and is expensive). He believes we can get the CT scan and the follow-up with him on the same day so we won't have a three-day process like we did this time.

I have been having off-and-on pain in my right shoulder and intermittent pain in my lower right rib cage. The radiation oncologist had spotted something in my right shoulder when he did the F-Dopa scan a few months ago, but didn't know what it was. We asked the doctor about this. He said that we couldn't tell from the octreatide scan, but that we do know that I have cancer in the bone with tumors "all over", so that it was certainly possible that both of these pain symptoms indicate that the cancer may have spread.

This is disconcerting to say the least. Every time we come, we keep hoping we'll have that "aha!" moment when we nail this down and have a definite course of treatment lined up, yet each time, we get pushed back six weeks or more back with yet more scans. I am definitely feeling discouraged tonight, especially with the notion that the cancer may have spread to my shoulder and rib cage.

I am discouraged, but not defeated. I have placed my faith not in doctors or medicine, but in the Lord God. I believe in medicine, but I don't believe it is the be all, end all of everything. My God is my Healer. I am trusting in Him that, no matter what happens, that He is the Master, and I believe I am healed. As my pastor says, "God is never late, but he misses a lot of opportunities to be early." Isn't that the truth!?! But God's timing will be perfect and our faith in Him remains strong. The enemy may seem to be winning the battle, but God will win the war!

Thank you for all of your prayers, thoughts, and support, and thank you to all of you who are in the foxholes and trenches with me as I fight this thing with the Lord's help. Knowing that I am not alone in my fight and that so many are standing with me is so encouraging to me and I can never express how much I appreciate it. God bless you all!

I'll let everyone know when I find something else out. The schedulers were at lunch today, so I haven't had my six week appointment scheduled yet. Six weeks puts this at 5/21 which is my 15th anniversary week so we'll have to work around that.

Thanks again for your prayers and support.