My Brain Tumor
new developments and glints of hope
We got up at 3:30AM this morning in order to be at our appointment at the National Institutes of Health (NIH) in Bethesda, Maryland by 7. We were doing great until we hit the beltway - 10 miles left at about 6:15 and we parked at 7:30! Of course, that was only the beginning.
To be fair, Michelle and I left feeling great about every single staff person we met there - even the security guard who searched our car was courteous and helpful, giving us directions to the correct building on the unfamiliar campus. Although we were a little late, they got my vitals and I had the intake and physical with the RN and we were ready to meet the doctor in the examination room by 9:15AM.
Three hours later, Michelle and I had explored almost every means of entertainment available in the 10x10 room, including dizzying each other on the spinning stool, blowing up rubber gloves to use in improvised puppet theater from either side of the dividing curtain, and creating new tango steps. After exhausting our options, Michelle fell asleep on the exam table and, eventually, I ventured out to find out if we could go get lunch or if we were to continue to be confined to our room. About 15 minutes after I asked to speak to someone, we met Dr. Howard Fine, Chief physician of the Neuro-Oncology Branch of the National Cancer Institute. He apologized for the delay and explained that he had been reviewing my case for 40 minutes already.
Dr. Fine is a wiry man with an intense light in his blue eyes and nervous jitters in his legs. We both found him charming and his theory on my case very interesting. His reading of the reports and scans and the available treatment options was that the IMRT radiation I received was more effective against the tumor than the Temodar. His reasoning is that IMRT radiation is designed to avoid certain critical structures, in my case, the optic nerve and the orbit. Temodar, supposedly, will attack glioma wherever its found. It looks liek my tumor has not grown in the areas that received radiation only in the one direction where radiation was limited or excluded.
Before we met, he had already contacted the office of my radiation oncologist at HUP, Dr. Lustig, to get the details on the map of my treatment. He'd also contacted his radiation specialist and an associate at Mass General in Boston who uses the proton beam for treatment there. His preferred path, which he admits is unlikely, is that the radiation exposure within the orbit has been low enough in previous treatments that we can blast the remaining tumor cells with either IMRT or, possibly, the less destructive proton beam.
We also spoke about chemotherapy where he gave us some new perspective as well. Considering his theory above, he wasn't a strong proponent of resuming Temodar even with a new protocol. He did say this was a reasonable choice but considering my history he had other ideas. He was even less a fan of Avastin for my case - this is the other option that Rosenfeld and MSKCC have offered me so far. He thinks (as done studies that support his ideas) that CPT-11 (Irinotecan) is irrelevant for brain tumors and is just a holdover from treatments for other cancers. The case against Avastin is a little more technical, this entry is already long, and I am tired.
His recommendation for chemo was to pursue the older regimen for glioma, 'PCV'. PCV stands for Procarbazine, CCNU (lomustine), vincristine. Once again, his opinion differs from the norm in that he thinks that vincristine (an old acquaintance of mine from leukemia ) is both the main cause of side effects and the least effective of this trio so it can be left out. The idea here is that this treatment has been effective with glioma in the past but has superceded by Temodar as the standard of care because it is 'better tolerated' by the majority of patients. Since Temodar, by his thinking, hasn't been very effective for me, this is another good option to pursue in hopes of finishing off the remaining cells while they are still undetectable. Another ray of sunshine here is that vincristine is the only intravenus agent in the mix so I'd be on another oral-only chemo regimen.
So this is really the best news we've had for a while on the health front. There were several loose ends and we made plans to tie them off: I got a CAT scan while I was there with 'bone windows' so he can look for the bone condition that Dr. Gausas reported from surgery; he's going to follow up with all of the radiation guys and figure out if and what type of radiation treatment I could receive at this time. We should know more next week.
Now it's time for some sleep.
To be fair, Michelle and I left feeling great about every single staff person we met there - even the security guard who searched our car was courteous and helpful, giving us directions to the correct building on the unfamiliar campus. Although we were a little late, they got my vitals and I had the intake and physical with the RN and we were ready to meet the doctor in the examination room by 9:15AM.
Three hours later, Michelle and I had explored almost every means of entertainment available in the 10x10 room, including dizzying each other on the spinning stool, blowing up rubber gloves to use in improvised puppet theater from either side of the dividing curtain, and creating new tango steps. After exhausting our options, Michelle fell asleep on the exam table and, eventually, I ventured out to find out if we could go get lunch or if we were to continue to be confined to our room. About 15 minutes after I asked to speak to someone, we met Dr. Howard Fine, Chief physician of the Neuro-Oncology Branch of the National Cancer Institute. He apologized for the delay and explained that he had been reviewing my case for 40 minutes already.
Dr. Fine is a wiry man with an intense light in his blue eyes and nervous jitters in his legs. We both found him charming and his theory on my case very interesting. His reading of the reports and scans and the available treatment options was that the IMRT radiation I received was more effective against the tumor than the Temodar. His reasoning is that IMRT radiation is designed to avoid certain critical structures, in my case, the optic nerve and the orbit. Temodar, supposedly, will attack glioma wherever its found. It looks liek my tumor has not grown in the areas that received radiation only in the one direction where radiation was limited or excluded.
Before we met, he had already contacted the office of my radiation oncologist at HUP, Dr. Lustig, to get the details on the map of my treatment. He'd also contacted his radiation specialist and an associate at Mass General in Boston who uses the proton beam for treatment there. His preferred path, which he admits is unlikely, is that the radiation exposure within the orbit has been low enough in previous treatments that we can blast the remaining tumor cells with either IMRT or, possibly, the less destructive proton beam.
We also spoke about chemotherapy where he gave us some new perspective as well. Considering his theory above, he wasn't a strong proponent of resuming Temodar even with a new protocol. He did say this was a reasonable choice but considering my history he had other ideas. He was even less a fan of Avastin for my case - this is the other option that Rosenfeld and MSKCC have offered me so far. He thinks (as done studies that support his ideas) that CPT-11 (Irinotecan) is irrelevant for brain tumors and is just a holdover from treatments for other cancers. The case against Avastin is a little more technical, this entry is already long, and I am tired.
His recommendation for chemo was to pursue the older regimen for glioma, 'PCV'. PCV stands for Procarbazine, CCNU (lomustine), vincristine. Once again, his opinion differs from the norm in that he thinks that vincristine (an old acquaintance of mine from leukemia ) is both the main cause of side effects and the least effective of this trio so it can be left out. The idea here is that this treatment has been effective with glioma in the past but has superceded by Temodar as the standard of care because it is 'better tolerated' by the majority of patients. Since Temodar, by his thinking, hasn't been very effective for me, this is another good option to pursue in hopes of finishing off the remaining cells while they are still undetectable. Another ray of sunshine here is that vincristine is the only intravenus agent in the mix so I'd be on another oral-only chemo regimen.
So this is really the best news we've had for a while on the health front. There were several loose ends and we made plans to tie them off: I got a CAT scan while I was there with 'bone windows' so he can look for the bone condition that Dr. Gausas reported from surgery; he's going to follow up with all of the radiation guys and figure out if and what type of radiation treatment I could receive at this time. We should know more next week.
Now it's time for some sleep.
Labels: chemotherapy, Dr. Fine, NIH, radiation, Temodar
posted by fraczard at 7:22 PM
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