Early on the morning of 2/11/09, I got a ride into the city for a chest and abdomen CT scan (thanks John!), followed by a meeting with Dr. Minor. Michelle was able to participate in the doctor meeting by phone (with some difficulty). Dr. Minor was not able to stay around to answer all of my questions, and Jody Hauser, his assistant, is out on maternity leave. She is whom I would ask unanswered questions normally. In her place, I asked one of the nurses who has been VERY helpful with information in the past (thanks Fred!).

CT Scan Results

Dr. Minor did not have a final report for the scan, which is no surprise given his turnaround time (same morning). He was able to speak to someone and get the basic results, which showed that the lung mets had grown somewhat larger and there may also be more.

I finally received a copy of the report on Friday evening and it was not pretty! More in lungs, larger in the lungs. Moved to the liver (actually, there is some question of whether or not the liver already had mets in it, becuase the report described the mets as having grown as opposed to new). So growth in the liver and new ones in the liver. And moved to the adrenal glands and kidneys.



Clinical Trials

I had exchanged emails with Dr. O'Day's assistant (the people I went to see last June) last week, and she (Gina Deck) thought that I would qualify for one of the 3 new trials that Dr. O'Day had going. However, because of the growing lung mets, Dr. Minor stated that I would not be a candidate. Per a conversation that he had with Dr. O'Day, lung mets have to be the same or better for me to be considered.

I asked Ms. Deck about this and, after some digging, she determined that it was the growth in the brain that was holding me back from qualifying. This makes sense as no one likes brain mets for their studies, least of all me!

I also asked Dr. Minor whether these were all trials or protocols, the difference being that trials would have some people as a test group getting a placebo and not the real thing. Dr. Minor said that they were all trials, but that he thought that the all involved real drugs, no placebos. That is a good thing!

Dr. Minor also does not have any new trials that I qualify for.



Recommendation

Dr. Minor recommended that I try a heavier dosage of temodar. Temodar was 1 of the 3 chemo drugs I tried while on my biochemo, but only used it 3 days out of 21. He will bump me to 7 out of 14 days on temodar.

Temodar is an oral chemo drug. I will take 3 pills prior to bed for 7 straight days, then 7 days off. I am supposed to start by taking a zofran for nausea 30 minutes beforehand, then take the 3 chemo pills on an empty stomach before bed. If I feel sick after taking the meds, I can take another zofran. On day 7, instead of taking 3 pills, I will take 2 pills.

I will see Dr. Minor every 14 days, assuming no other major complications. He will check blood counts to make sure that I am ready to begin the process again. Dr. Minor did not think that this would be a problem as I did not have blood count issues last time.

FYI, I have now taken the chemo drug Wed-Fri without any problem. I am still having difficulty sleeping, so I have been taking a sleeping pill as well, which has helped.

Next Steps

I am calling in the calvary. Michelle has been doing a very good job in taking care of me, but my folks want to visit and I could use the help. My sister and mom are coming out on Thursday, 2/19, and later my sister will go home and my dad will come.

I am also trying to get hold of a local social worker who has been through this before. In the meantime, I am trying to stay positive and hoping for the best. I'm sure more on that later. All I know is that, of late, it has been more difficult, yet net impossible, to do so.

I do read the emails and the posts that are put on the site. While I don't reply to the posts (many do not have email addresses) I have been replying to all emails. For both posts snd emails, much thanks. They are uplifting and very helpful.