Whew...it was an exhausting 2 days in Durham, NC at The Brain Tumor Center at Duke. It was a great experience to meet everyone there and learn about the center. I can’t say enough great things about all the wonderful people there, and how well organized everything was for us. The news about her MRI, however, is not as great. It appears that the tumor is larger and changing shape. It has grown despite the chemo and radiation. Although, it still may improve some in the next few weeks, as the full effects of radiation are not always seen until 6-8 weeks following the completion of radiation. None the less, the doctor at Duke feels we need to treat it as aggressively as possible.
Her medical oncologist there is Dr. James Vredenburgh, and we couldn't have asked for a better one. He is one of the top oncologists in the country, not to mention that he knows Mom's oncologist in Knoxville already! The normal course of treatment they recommend is a rotation of 4 different chemotherapy drugs: Temodar, CPT-11, CCNU, and BCNU….but since her tumor is progressing, they recommended a more aggressive method of treatment, which is a clinical trial with the drug O6-BG, and the chemotherapy drugs Temodar and CPT-11. So instead of just one chemo at a time, she will receive 2 plus the O6BG. O6-BG decreases the levels of an enzyme/protein in the body that protects tumor cells from Temodar. Basically, it reverses the resistance of the tumor cells to Temodar (the chemo). She will have to be at Duke for 3 days every 3 weeks for treatment, since it is a drug not approved by the FDA and cannot be administered at home. She will have to have a port-a-cath, or central line, implanted in her chest to receive the O6-BG and CPT-11 by infusion while she is there at Duke. It is a complicated treatment regimen, and it can be continued for a year as long as it’s working. They will keep her on the study as long as the tumor remains stable, or decreases. If at any time the tumor grows, they will take her off the study and decide on a different treatment to try at that time. We hope this doesn’t happen of course!!!
We thought it was best to err on the side of aggressiveness at this point, since this tumor doesn’t play around – we are not going to either! At Duke, we spoke about it like a war, and we need to hit it with all we can….guns (Temodar), rifles (O6BG), and bombs (CPT-11). We would have stayed in Durham for her to have her first treatment, but her white blood cell counts were too low, so she will have to get her blood checked again tomorrow, and again until it comes up before she can go for her first treatment.
Thank you so much everyone for your thoughts and prayers. We hope to have a good update soon!
Amy
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