Well I had my appointment at Moffitt today. Overall the news is very good. The latest contrast CT scan I had today showed no difference from the scan done in January. No new lesions have formed and it does not appear that the existing lesions have grown. The doctor admitted that it is difficult to tell with bone lesions whether they have truly grown or not, but there has been no spreading. Praise God!
The main point of our discussions centered around my latest pain developments. I have been having increasing pain in both shoulders which radiates down my arms and up into my neck, making it difficult to turn my head and giving me chronic headaches as well. The pain is worse on the right side, but it is present on both sides to some degree. The doctor said that, although the CT scan showed no new lesions, that does not mean that the existing ones may not have increased in intensity or depth, so he is certain that the cause of the shoulder and neck pain is due to the cancer. More radiation is going to be necessary, but the exact type needs to be determined.
For certain types of bone cancers, a radioactive drug called Samarium may be used. The doctor sent us to meet with a radiation oncologist that specializes in this type of treatment. He said that this is a one-time injection that goes throughout the body and attaches itself only to the bone lesions. It then irradiates the lesions over a period of 7-8 weeks. The main side effect besides fatigue is a temporary effect on the bone marrow. Specifically, there is not a significant reduction in red blood cells or white blood cells (the doctor said about 10% but not enough to compromise the immune system). The biggest hit is in the platelets. At about week 3, they hit their nadir at about 50% reduction and build back up so that, by about week 7, they are back to normal. The doctor said this is not a cause for concern of spontaneous bleeding. He said the platelets have to be reduced by 80% for there to be a concern.
The main factor in determining whether I am a candidate for the Samarium injection depends on the type of lesions I have. There are two types -- I don't recall the medical terms now. The lesions can either cause deterioration of bone or they can cause thickening of the bone. The main way to tell this is by doing yet another scan -- a bone scan. I have had a bone scan before, but he said we need a recent one. I can get the bone scan in Jacksonville and they will send the results to him for study. If the bone scan shows that my lesions are of the deteriorating type, the Samarium will not help these. If, however, they are of the thickening type, I would be a good candidate.
The doctor reminded me that this will not get rid of all the lesions, but will shrink many of them, reducing overall pain. He said there has been no study for neuroendocrine cancer and this drug as far as how long the pain relief lasts. For breast or prostate cancers that have spread to the bone, the effect usually lasts 4-6 months. He suspects with neuroendocrine being such a relatively slow growing type, the effect should last much longer. He's not sure if there is anyone in Jacksonville who can administer this drug, so I may have to go to Mofffitt to receive it, but since it is a one-time injection, that shouldn't be a problem either way.
If I turn out not to be a candidate for this, we will need to return to traditional external radiation to treat both shoulders.
The GI oncologist wants to wait until we deal with the radiation issues to address any other treatment options. He believes that the one drug we had discussed previously, Afenitor, which has horrible side effects, would not work well for me since the cancer is growing so slowly. He wants to go ahead after radiation and start me on the other drug, Sandostatin. He's not sure how effective it will be, but it has no real side effects, so he wants to give it a try.
I already have an appointment Friday with my radiation oncologist in Jacksonville, so I intend to discuss with him what the radiation oncologist in Tampa said and see if he can do the bone scan and, especially, whether he can administer the Samarium if I prove to be a candidate.
So I would say overall today it was a long day but very positive and encouraging. We are pressing ahead in this fight as long as we must. I truly appreciate your continued prayers, thoughts, support, and encouragement through this ordeal. I thank God for my family and so many wonderful supportive friends and an awesome church!
Wednesday, May 26, 2010
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