Although in general I feel better on Taxol than on Adriamycin, it is still taking its depressing toll with the 3-4 day period of myalgia (finally fading-thank-God) and numbness. My once beautiful nails have 2-3 sets of Mees' lines and half of them look like I have spilled coffee on them with the yellow-brown patches. The nail beds are numb and I am afraid they just might fall off at some point. I was trying to make myself look presentable for my big night out last night and noticed that at least half of my eyelashes are gone along with my eyebrows. I wanted to cry what did I deserve to have this all happen and still there is a chance that it will all be in vain. And where is my hair? Some people's hair grows back on Taxol but apparently not mine.
There have been some papers in the last few years, some published by my onc's partner, saying that Taxol is ineffective for estrogen positive, her2 neg ladies in preventing mets (the most common tumor type) However they still recommend it because if they are wrong, women could die. On the other hand, lots of ladies could be needlessly exposed to toxicities and permanent neuropathies. For estrogen negative ladies (me)there is supposed to be some benefit but I've yet to see it quantitized. Basically, there is just this narrow window of time that one has to stop mets. There will little to slow them down once they have a toe-hold.
"This is the first such observation that’s been made, and it was made retrospectively, meaning we looked backwards instead of forwards. We are not recommending at this time that women with positive lymph nodes, for whom we would currently recommend Taxol, but who are estrogen receptor positive and HER-2 negative not take the Taxol. We think the stakes are too high,” Hayes says.
One thing I still don't understand in the treatment of estrogen positive cancers is why the very last step seems to be cutting off the estrogen source. If I were queen, that would be the first thing I'd do is stop feeding those tumors. For my new friend the other day, they've had her go through 2 surgeries, 6 months of chemo, a bunch of radiation, and maybe now-almost a year later-they are going to deal with the fact that her ovaries are still producing boatloads of estrogen (which scares the life out of her). She will be on the Zometa study that I passed on (we have the same onc) but I was surprised that my onc didn't share with her how Zometa cuts down on mets in cases identical to hers. She was very happy to hear it.
It was a warm, sunny, almost spring day. Letting Sunny run around the tennis courts was out of the question as they were occupied. I did throw the ball from the top of the sledding hill until kids started to play on the nearby playground. A loose German Shepherd strikes fear in many people. Even one on the end of the leash causes many people to cross the street when they see us coming. Finally on a cul-de-sac about .7 miles from home, I encountered a group of neighbors with 4 lab mixes throwing balls around with ball flinging devices. I asked if Sunny could join the pack promising she was very well behaved with other dogs. So she had a good time out-running the lab mixes and the owners were very impressed on how well she responds to verbal commands. They said we could come over anytime as maybe Sunny's smartness might rub off on their dogs. But I am just a parttime big dog owner and can't join their little group.
I used to have a husky Bandit that was a pain to walk as he insisted on marking every tree. Spud loved to sniff every tree. Sunny's main interest in our walks is squirrels. Her eyes are constantly scanning the surroundings for them. I keep her out of the woods as she will jerk my arm every 2 seconds when she spots a squirrel. Every fifth house or so, she will spot one and go into stalking mode. We have a few obese squirrels on our property who don't give her the proper respect. Today will be our last day with Sunny as Josh and Julia come back very late tonight.
We had the Mom's group last night. I usually make dessert but lately due to lack of energy, I've just bought one holding my cancer card. I decided that for once I should make something nice using the raspberries from my patch that Steve picked while I was away in Italy. I made a raspberry, orange custard tart that tasted good (Naomi especially liked it) but it fell apart as I was trying to serve it as the crust was so delicate, which almost set me into another crying jag. I spent alot of time on it and now it was looking like a pile of red mush. We always have lots of wine but I have to pass on that given the beating Taxol and Vicodin does to my liver. I did have a small taste of my friend's cream rum liquor from her Jamaican trip. Another mom just returned from a rural village in Kenya where her church group were educating high school students so she had lots of interesting stories and pictures. She also went on a safari staying in a deluxe lodge.and saw lots of animals. Monkeys were constantly stealing her food. She enjoyed teaching the kids the most as they were very enthusiastic and thankful for anything they had. They were thrilled about Obama esp given his Kenyan connection. Someone had brought Obama pins for them, which they all wore proudly. One of them had asked a church lady whether she knew Obama and she replied no as she had never met him. The student then patiently told the church lady Obama's whole history and how he was elected to be president of the US. Good to know. As this is a 'moms' group formed shortly after our about to be thirty (!!!) babies were born, our kids are a focus. Kids moving to be closer to us and kids moving away from us as the economic conditions are so poor. I thought I was coming down with a throat infection while there and I couldn't get warm plus my legs ached so I had a hard time being cheerful. Despite taking drugs, when I returned home, I just could not get to sleep until 3 am or so. My mind would just not shut down.
Nice, semi-warm day today and my myalgia is almost gone. Wednesday we go to Seattle with Shanna and Oliver. I can't wait: my first trip out of cancerland. I've been snuck here so, so long.
There have been some papers in the last few years, some published by my onc's partner, saying that Taxol is ineffective for estrogen positive, her2 neg ladies in preventing mets (the most common tumor type) However they still recommend it because if they are wrong, women could die. On the other hand, lots of ladies could be needlessly exposed to toxicities and permanent neuropathies. For estrogen negative ladies (me)there is supposed to be some benefit but I've yet to see it quantitized. Basically, there is just this narrow window of time that one has to stop mets. There will little to slow them down once they have a toe-hold.
"This is the first such observation that’s been made, and it was made retrospectively, meaning we looked backwards instead of forwards. We are not recommending at this time that women with positive lymph nodes, for whom we would currently recommend Taxol, but who are estrogen receptor positive and HER-2 negative not take the Taxol. We think the stakes are too high,” Hayes says.
One thing I still don't understand in the treatment of estrogen positive cancers is why the very last step seems to be cutting off the estrogen source. If I were queen, that would be the first thing I'd do is stop feeding those tumors. For my new friend the other day, they've had her go through 2 surgeries, 6 months of chemo, a bunch of radiation, and maybe now-almost a year later-they are going to deal with the fact that her ovaries are still producing boatloads of estrogen (which scares the life out of her). She will be on the Zometa study that I passed on (we have the same onc) but I was surprised that my onc didn't share with her how Zometa cuts down on mets in cases identical to hers. She was very happy to hear it.
It was a warm, sunny, almost spring day. Letting Sunny run around the tennis courts was out of the question as they were occupied. I did throw the ball from the top of the sledding hill until kids started to play on the nearby playground. A loose German Shepherd strikes fear in many people. Even one on the end of the leash causes many people to cross the street when they see us coming. Finally on a cul-de-sac about .7 miles from home, I encountered a group of neighbors with 4 lab mixes throwing balls around with ball flinging devices. I asked if Sunny could join the pack promising she was very well behaved with other dogs. So she had a good time out-running the lab mixes and the owners were very impressed on how well she responds to verbal commands. They said we could come over anytime as maybe Sunny's smartness might rub off on their dogs. But I am just a parttime big dog owner and can't join their little group.
I used to have a husky Bandit that was a pain to walk as he insisted on marking every tree. Spud loved to sniff every tree. Sunny's main interest in our walks is squirrels. Her eyes are constantly scanning the surroundings for them. I keep her out of the woods as she will jerk my arm every 2 seconds when she spots a squirrel. Every fifth house or so, she will spot one and go into stalking mode. We have a few obese squirrels on our property who don't give her the proper respect. Today will be our last day with Sunny as Josh and Julia come back very late tonight.
We had the Mom's group last night. I usually make dessert but lately due to lack of energy, I've just bought one holding my cancer card. I decided that for once I should make something nice using the raspberries from my patch that Steve picked while I was away in Italy. I made a raspberry, orange custard tart that tasted good (Naomi especially liked it) but it fell apart as I was trying to serve it as the crust was so delicate, which almost set me into another crying jag. I spent alot of time on it and now it was looking like a pile of red mush. We always have lots of wine but I have to pass on that given the beating Taxol and Vicodin does to my liver. I did have a small taste of my friend's cream rum liquor from her Jamaican trip. Another mom just returned from a rural village in Kenya where her church group were educating high school students so she had lots of interesting stories and pictures. She also went on a safari staying in a deluxe lodge.and saw lots of animals. Monkeys were constantly stealing her food. She enjoyed teaching the kids the most as they were very enthusiastic and thankful for anything they had. They were thrilled about Obama esp given his Kenyan connection. Someone had brought Obama pins for them, which they all wore proudly. One of them had asked a church lady whether she knew Obama and she replied no as she had never met him. The student then patiently told the church lady Obama's whole history and how he was elected to be president of the US. Good to know. As this is a 'moms' group formed shortly after our about to be thirty (!!!) babies were born, our kids are a focus. Kids moving to be closer to us and kids moving away from us as the economic conditions are so poor. I thought I was coming down with a throat infection while there and I couldn't get warm plus my legs ached so I had a hard time being cheerful. Despite taking drugs, when I returned home, I just could not get to sleep until 3 am or so. My mind would just not shut down.
Nice, semi-warm day today and my myalgia is almost gone. Wednesday we go to Seattle with Shanna and Oliver. I can't wait: my first trip out of cancerland. I've been snuck here so, so long.
3 comments:
Sue, where did Sunny come from? She sounds wonderful.
I will confess that having had an estrogen positive tumor removed does concern me when I have the rest of my plumbing.
Sunny is my 'granddog'. Her owners are my son and his wife, who have been in Jamaica this week, hopefully on a last vacation before they get pregnant (I never miss a chance for some more grandkids.) Right now she is panting away as we had her run up and down the sledding hill 20x. In a few hours she will be ready for more action.
Yes I am surprised that dealing with estrogen isn't the first thing the oncs do. I guess they think chemo will put one into menopause but with this lady (age 42), she had a period on the last day of Taxol and has had two a month ever since. But one has to assume that they know what they are doing even if it doesn't make any sense.
I had two at the start of chemo, right on schedule. It's since stopped. My onc said we'll wait and see if it comes back. Tamoxifen is the drug for premenopausal women, I guess. This part is a mystery to me. I do know that I will be going for sterility testing sometime in the future.
I trust this guy though. He took exceptional care of my mom with her BC and he's doing the same now. I guess I prefer to be in the dark about some things.
You've been a wealth of information though and for that, I thank you :0)
Post a Comment