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MIBG scan results

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Jimi went to MGH on Thursday, September 22nd  to get injected with the iodine treatment, then back that Friday for the MIBG actual scan. The scanning was rather arduous and took about 45+ minutes per scan, of which there were 3. He wasn’t able to get up between scans or move around to allow him to get more comfortable and the result of laying there for about 3 hours was a great deal of pain. Jimi went home wiped out. The results were available in an hour, but he chose to go home and sleep instead of waiting. Unfortunately, that night his blood pressure spiked up to 160/110.

A call was made to Dr. Yu, his attending endocrinologist regarding the spike. She recommended adding more of his phenoxybenzamine, his main alpha and beta blocker.

Phenoxybenzamine is a specialized drug created just for pheochromocytoma and the resulting high blood pressure the hormones cause. Jimi had been taking 1 pill a day, and is now up to 4 pills a day. Although, he has jumped up to 4 pills a day, it appears his body is responding to the medication and his blood pressure is back around 120/80

Cost of Phenoxybenzamine (Dibenzyline)

14 pills = $30, 7 days x 4 pills per day = 28 pills per week = $60 per week  just for one medication

Dr. Yu was also able to put his mind at ease with the result of the MIBG scan. The MIBG scan DID show the tumor (there was a chance it might not show anything), and that is actually GOOD news as it means there is a chance in the future for the MIBG treatment to be a possible option. It ONLY showed the spots on his LUNGS, so all those crossed fingers and prayers worked. We are hopeful that no new locations appear.

~ Kate

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