Johnna and i met with a new oncologist in Santa Rosa, CA and he was INCREDIBLE! Dr. Keiser is the guy we have been looking for. the other oncologists have left me with a sense that my diagnosis is just hopeless, this guy is looking for possibilities. He was hopeful, and even encouraged us to pursue the alternative/crazy treatments, he is going to look for some of them himself!
I'll get a new ct scan early next week, and this time we're doing a full body. I have some strange headaches and some numbness around my forehead so we are also checking the brain. Pray for us for hope, i have only received horrible news following all my scans so we get a little anxious.
We are also ready to head to mexico finally! once we have gotten our scan results i'll be heading out to a clinic in Acuna MX. Dr. Keiser informed us that the cancer is advancing in my liver, and it will pick up momentum as it advances. The clinic in Acuna is doing treatments specializing in liver tumors in addition to systemic treatments. Johnna and I are really excited to be able to move in this direction, and it is all thanks to the generosity and outpouring of care from all you wonderful friends!
Saturday, October 20, 2007
Monday, October 15, 2007
getting harder!
things are starting to get a little bit rougher, painful nights are a little more frequent, medication side effects a little more intense, i am a little less patient with my precious family ...
One big new detail, the oncologist in texas failed to ever mention an additional bone legion i have located in my hip. I was looking through all my medical records and read one little line on a ct scan that clearly states "legion present within the left ilium." It is located in the ball and socket part of the hip, and has been painful for several months. I am not sure how my oncologist could have failed to communicate that little tid bit! It also appears that there are more new tumors, and possibly one now in my pancreas, and the previous ones are growing, but not too quickly.
On a brighter note, we are finding a number of new treatment possibilities that are available to us that we are exploring. It is all a little overwhelming as there are quite a few new/experimental routes in addition to all the other treatments we have been considering. Pray for wisdom! MPNST cancer is such a rare cancer that very little is known about it, and there is not a lot of research being done. There is one clinical trial going on right now in Germany with a drug that has been successful on other types of sarcoma cancers, so i am hoping that i will be able to participate in that somehow. We also found several sarcoma centers that are pursuing new treatments as well so maybe they are on to something that will work!
as always, thank you all for the support and love, i am continually blessed by the outpouring of generosity and care.
One big new detail, the oncologist in texas failed to ever mention an additional bone legion i have located in my hip. I was looking through all my medical records and read one little line on a ct scan that clearly states "legion present within the left ilium." It is located in the ball and socket part of the hip, and has been painful for several months. I am not sure how my oncologist could have failed to communicate that little tid bit! It also appears that there are more new tumors, and possibly one now in my pancreas, and the previous ones are growing, but not too quickly.
On a brighter note, we are finding a number of new treatment possibilities that are available to us that we are exploring. It is all a little overwhelming as there are quite a few new/experimental routes in addition to all the other treatments we have been considering. Pray for wisdom! MPNST cancer is such a rare cancer that very little is known about it, and there is not a lot of research being done. There is one clinical trial going on right now in Germany with a drug that has been successful on other types of sarcoma cancers, so i am hoping that i will be able to participate in that somehow. We also found several sarcoma centers that are pursuing new treatments as well so maybe they are on to something that will work!
as always, thank you all for the support and love, i am continually blessed by the outpouring of generosity and care.
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