joy
09-18-2005, 07:30 AM
Thank you for all of the love and support regarding my new bone involvement. I have spent the week in a very pissy mood and I couldn't even look at the posts because everything made me cry, especially really nice people and their wishes. But today i was ready and what a difference your wishes, advice and thoughts make. Al is right when he/you says some of these events show us how much people care. And when it is all said and done that is truly all that matters-how much we care.
As for the docs. I had been on a protocol of allowing my own estrogen to flood the cells and trick their newly adapted small receptors from being used to tiny amounts of estrogen to lots and lots and basically drowning them. i have had good stabilization and even some improvement on this plan for 6 months. Now we are attempting to try something pretty crazy. I have started back on zolodex to become menopausal (my mom says i'm her hero cause i have been in and out of menopause approximately 6 times in 5 years-she said most women would kill themselves if they had to do that-ironic, isn't it). Then we are going to go back to the first aromatase inhibitor i was on, Femara, and see if we can take the cells on a rollercoaster ride, drive them crazy and re-use these drugs. my docs are excited because they think it will work and it may open up new protocols for others. If it doesn't then we will look at Megace for a while.
My specialist in Denver is always very positive and encouraging. He even wanted me to have a mammo which i haven't had in 3 years since it all hit the fan. he said, "you're going to be here a long time so let's treat you like a normal person, make sure you don't have a new primary that isn't her2 positive and keep you around." I had that on Friday. I have an echo and a bone scan on Tuesday in order to see any other bone mets that didn't appear on the CT cause we just did chest, abdomen, pelvis.
My local onc, who is brilliant, but with less experience and sometimes refered to by me as "Dr. Downer" was actually very encouraging. I saw a whole different side of her this week and that has been another gift from this (personally i could be done with gifts for a while, unless they are from a travel agent).
The words, prayers and gifts from this group, though, mean more to me than anybody else's. Thank you and know i always, everyday, twice a day at least, say a prayer and express gratitude to the higher power for all of you!
I have so much to be grateful for and thanks to all of you i'm feeling that again.
love, joy
As for the docs. I had been on a protocol of allowing my own estrogen to flood the cells and trick their newly adapted small receptors from being used to tiny amounts of estrogen to lots and lots and basically drowning them. i have had good stabilization and even some improvement on this plan for 6 months. Now we are attempting to try something pretty crazy. I have started back on zolodex to become menopausal (my mom says i'm her hero cause i have been in and out of menopause approximately 6 times in 5 years-she said most women would kill themselves if they had to do that-ironic, isn't it). Then we are going to go back to the first aromatase inhibitor i was on, Femara, and see if we can take the cells on a rollercoaster ride, drive them crazy and re-use these drugs. my docs are excited because they think it will work and it may open up new protocols for others. If it doesn't then we will look at Megace for a while.
My specialist in Denver is always very positive and encouraging. He even wanted me to have a mammo which i haven't had in 3 years since it all hit the fan. he said, "you're going to be here a long time so let's treat you like a normal person, make sure you don't have a new primary that isn't her2 positive and keep you around." I had that on Friday. I have an echo and a bone scan on Tuesday in order to see any other bone mets that didn't appear on the CT cause we just did chest, abdomen, pelvis.
My local onc, who is brilliant, but with less experience and sometimes refered to by me as "Dr. Downer" was actually very encouraging. I saw a whole different side of her this week and that has been another gift from this (personally i could be done with gifts for a while, unless they are from a travel agent).
The words, prayers and gifts from this group, though, mean more to me than anybody else's. Thank you and know i always, everyday, twice a day at least, say a prayer and express gratitude to the higher power for all of you!
I have so much to be grateful for and thanks to all of you i'm feeling that again.
love, joy