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Mar. 18th, 2011 02:42 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
stitchwhichI visited two doctors yesterday and was wiped out by dinnertime - couldn't sleep the night before and the news about Kiri just capped that. So this update is being posted at two in the morning because once I did fall asleep, I went down hard.
Surgical consult went as expected; yup, yup, everything's healed shut and see you in a month for a follow-up. (I was confused as to why he'd want me to come back when everything is closed and healed, but hey, I'm not a surgeon. Bossman says, "just because the outside is done, doesn't mean the inside is!" That's a point.)
He told me the size of my tumor (8.5cm - roughly 7 inches across) and my miotic rate (4/50) - both are important for determining what risk I'm at. The size was a bad thing, in that 5cm or larger seems to mean returning bouts of tumors, but the miotic rate was below 5/50, which means I'm on the 'safer' side of 'growing more of those cells'. So I guess that means I average out to 'sort of' at risk.
The FDA suggests a treatment of Gleevec for "a year or longer', that being what the latest published study showed was effective. My oncologist had GIST himself and was operated on in 2004. He did one year of Gleevek and then signed up for a three-year study, which will have its results published in June of this year. Hopefully. He seems fairly sure that the results of that study will indicate that a longer period of treatment increases the viability of the patient. He is involved in a five-year study that is ongoing, and has recommended me to take part in it. I go in tomorrow to begin the initial processing. There's a lot of tests involved, I can tell you! But it also means that I will be getting the GIST-wonder drug for four years longer than I would be getting if I were a 'regular' patient, as that stuff is darned expensive (over $100 a pill, at four pills a day) and insurance companies cut off their patients as fast as they can.
Right now, so far as I know, I am tumor-free. With the grace of the Almighty and the aid of the Gleevek, I may continue so right on into old age.
The only rub is - I cannot eat anything that contains "grapefruit, seville oranges, or pomogranates" while I'm on the drug. That's gonna be sad. But I think I can live with it. Especially since I just confirmed that 'seville oranges' ARE the bitter ones that we cook with, and not the nummy ones that we peel and eat. Hurrah!
Surgical consult went as expected; yup, yup, everything's healed shut and see you in a month for a follow-up. (I was confused as to why he'd want me to come back when everything is closed and healed, but hey, I'm not a surgeon. Bossman says, "just because the outside is done, doesn't mean the inside is!" That's a point.)
He told me the size of my tumor (8.5cm - roughly 7 inches across) and my miotic rate (4/50) - both are important for determining what risk I'm at. The size was a bad thing, in that 5cm or larger seems to mean returning bouts of tumors, but the miotic rate was below 5/50, which means I'm on the 'safer' side of 'growing more of those cells'. So I guess that means I average out to 'sort of' at risk.
The FDA suggests a treatment of Gleevec for "a year or longer', that being what the latest published study showed was effective. My oncologist had GIST himself and was operated on in 2004. He did one year of Gleevek and then signed up for a three-year study, which will have its results published in June of this year. Hopefully. He seems fairly sure that the results of that study will indicate that a longer period of treatment increases the viability of the patient. He is involved in a five-year study that is ongoing, and has recommended me to take part in it. I go in tomorrow to begin the initial processing. There's a lot of tests involved, I can tell you! But it also means that I will be getting the GIST-wonder drug for four years longer than I would be getting if I were a 'regular' patient, as that stuff is darned expensive (over $100 a pill, at four pills a day) and insurance companies cut off their patients as fast as they can.
Right now, so far as I know, I am tumor-free. With the grace of the Almighty and the aid of the Gleevek, I may continue so right on into old age.
The only rub is - I cannot eat anything that contains "grapefruit, seville oranges, or pomogranates" while I'm on the drug. That's gonna be sad. But I think I can live with it. Especially since I just confirmed that 'seville oranges' ARE the bitter ones that we cook with, and not the nummy ones that we peel and eat. Hurrah!
