Hi -
Dad has declined. Last week we had lots of activities, and I think it was too much for him. Tuesday was our 3rd dose of Nivolumab, Wednesday was a visit with the NO (a 5-6 hour ordeal roundtrip), and Thursday we had our Optune hat arrive. Dad removed it 6 or so times that night before Mom gave up for the time being. Dad has been sweating much more than ever before and had difficulty holding his head upright at the NO's office, Mom had to cradle his head.
Just this week his breathing is laborious and he had a bit of a rattle, but the rattle seems to have gone away. He is now sleeping and has been all day. His blood oxygen is only 85% - which is a drop from our usual 97-98%. Otherwise his vitals seem good.
Our background: Dad had 1 round of Temodar last Sept/Oct during radiation, became impaired (couldn't walk, speech worsened), local Oncologist assumed the Temodar wasn't working and switched us to Avastin. In hindsight, his tumor did not progress and the radiation was hitting the motion strip of his brain - it is entirely possible that he DID respond to the Temodar, and that the symptoms were due to the radiation. NO at UCLA said that as the tumor did not progress this is likely.
Late May, after 6-7 months of Avastin as a monotherapy, (+ cocktail including DCA, etc) Dad's tumor had it's first increase. Another local Oncologist said we could revisit Temodar since we never tried the maintenance dose. Dad received 1 round of the 5 day Temodar - it was well tolerated. While this was going on our application for Nivolumab was approved. The Onc then said to stop Temodar and just do the Nivolumab (this was not a NO, just a regular Onc).
We then saw our NO and started the process of getting an Optune hat. The NO weighed in and said that we could try Temodar + Optune, in addition to the Nivolumab, but wanted to wait a month until Dad's had time with the Optune so as not to change too much at once and have so much toxicity in Dad's system.
Dad won't wear his Optune. I am thinking of maybe trying the Temodar on a metronomic dose schedule, as we happen to have some from a friend. The NO didn't give us any yet.
You are all as aggressive as me, and I value your collective opinions. Would you go ahead and give the Temodar on a metronomic dose? I honestly believe if we don't he will not make it til next week. If we do, he might still perish but will I be harming him? Is there any chance it can help him? I have verapamil, celebrex, disulfiram, copper, everything to make the Temodar more powerful. I don't want to have regrets about 'not trying' but I also don't want to regret making him sick (if it will) or making his last days horrible.
What would you do... Dad was on board with absolutely everything early on. Now he can't communicate so we can't ask him. Is metronomic Temodar unbearable? Does anyone have personal experience with it? Are we too far gone?
Love to all.
Annie