This has been Chance's biggest challenge, it seems, so I wanted to ask for suggestions/support.
His resection was December 1, 2014, and he's been trying to divorce the decadron ever since. He is down to 1.75 mg per day: 1 mg at breakfast, .75 at lunch. It was suggested by Aunt Zelda's that he taper in quarters, instead of halves, and we liked the idea very much.
He's had a series of setbacks: a blood clot in his leg, bronchitis, his last round of chemo... He got very nauseated at the end of chemo and didn't eat for one full day, which means he didn't take his Decadron either, and he got a terrible, crippling headache. Yesterday, he ate a bit and he took the 1 mg Decadron and within a few hours he began to feel better. It gave us a peak into how much power the Decadron still holds.
His hematologist recently mentioned he has patients that are unable to get off Decadron, so they just continue indefinitely on the lowest possible dosage. Chance is 38 and his biggest complaint is insomnia, but of course he's gained weight and is discouraged every time he looks in the mirror. He has always been very physically active and worked out at least five days a week.
I recall Rich said he finally just bit the bullet and stopped, but I wondered what others had done. Chance is working, so a debilitating, endless headache is pretty much out of the question. Any ideas how long it may last?
BTW, Chance has just started Boswellia, which I know can help from an anti-inflammatory angle, but Dr. Lee (hematologist) said it will not help with the other symptoms.