Arimidex - Coping with the SE's
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Wow, Sandy. Suicide certainly would defeat the purpose of the AI! Sounds like a good choice for you not to continue. As I have mentioned in previous posts, 5 years ago I chose not to take AI due to concerns about SE. But since my recent reoccurance I am giving it a try and sincerely hope it doesn't seriously effect my QOL. I am really trying hard to stay positive about this whole thing but like (I suspect) all of us here, I really hate that I have to make these choices. Glad you are feeling better and wish you continued DFS.
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Since I am just a couple months into this part of the journey, I am hoping in 5 years they will have better answers to the question of how long we need to take this drug. Maybe they will even have a better drug, with less SE, that helps you lose weight and makes our wrinkles go away. Hey, a girl can dream, can't she?
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one can only hope..............
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Losing weight and losing wrinkles? Yes baby! I'll take that one - and if it makes hair grow back after chemo faster - that would really excite me
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Dobie-I'm willing to be in the test group for that one!
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Definitly count me in on that one! MamaV I see your hair was only 5" after one year. Did you wear a hat/scarf? If so can I ask how long? I am trying to decide if I am ready to go commando. Hair is fuzzy white about a 1/4 to 1/2" long. So tired of hat/scarf. I don't wear anything at home but I get enough looks with the hat/scarf don't know about going bare.
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Tskaiser75,
If you decide to do without the scarf, watch out for sunburn.
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Thanks for the reminder. Hadn't thought of that- my white fuzz would be pink!
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Just wondering if anyone is really affected by the heat. I've been on Arimidex for about 6 months and have 4 1/2 years left. It makes me a little tired, but no aches. The only thing is I can't tolerate the heat at all!!! It's not a hot flash it's a constant feeling of being too hot, even when blasting the air in the car and going into buildings that are "relatively or really air conditioned" I can still tell it's hot outside.I feel nauseous at the end of the day. Just going in and out of the 90 degree heat makes me sick. I visit different places for work. I am less productive because of this. I was planning on going kayaking and to a fiddle fest this weekend, but I can't go out in this 90 degree heat for more than 10 minutes without feeling nauseous and feeling like I'm going to scream. I don't want to hide in the house all weekend, but how else do you cope? (PS, my "house" really a cabin is tiny and just one room) I may go bonkers. My daughter said it's freezing in here, I said, feel my arm I'm hot and sweating in a tank top. She said, Yup and turned the a/c back on and put on a sweater. Thank you.
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Tskaiser75: I hear ya as far as the commando look. So tired to hats/scarves. I go "topless to the gym. I don't care.
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bedo: I am definitely hot all the time. Not hot flashes, but just an overall amped-up body temp. I wear light sleeveless shirts and have had to learn new ways to dress at work -- haven't put a sweater on in ages! I'm in the bay area where it is cold and foggy in the summer, but I walk in the morning in 55 degrees with a sleeveless shirt and no jacket.
Susan
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DOSAGE?
Has anyone ever taken a smaller dose of the arimidex ?
I have seen studies showing a half dose of tamoxifen could be just as effective , w/out so many SEs ... ????
Just a thought.0 -
I've been gone so long I'm sure no one remembers me. I went on a 9-week motorcycle trip, riding my own BMW, camping, hiking, carving corners and had the time of my life. I loved Colorado!
I went off my Arimidex before I left and promised my oncologist I'd go back on it when I got back. Been back on it for 3 days and my hips ache like crazy. Still sleeping OK, probably trying to catch up on all the sleep I lost while out carousing! Before I left I had achy hips, fatique and had trouble sleeping, oh yeah, and my night sweats came back. I think I was just about over them from menopause when I went on Arimedex and now they're back!
It was a wonderful vacation and a wonderful med vacation though I'd only been on Arimidex since Feb and went off at the end of May so maybe I wasn't even on it long enough to have all the SEs show up. I'll keep pluggin away. I'm glad you're still all here for me, but can honestly say that 9 weeks of barely thinking about cancer was wonderful!!!
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Welcome back! I remember you. Glad you had a great time but so sorry your SEs are back
Hang in there...hopefully it's just your body trying to adjust again. Many say after being off the Arimidex for a while, the SEs get better. Hope that is the case for you.0 -
purple...I have often wondered about a smaller dosage myself, especially seeing as my ER+ is 1% if I read my path report correctly. I think my MO said 1.5% positive. That seems to be a small chance for such a dose. I asked my pharmacist and she said it was the smallest dose.
Might be iffy to half it especially since it's such a small pill (with such nasty SEs). I will discuss this at length with him in October when I see him again.
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Discuss if you like scahatzi, but my guess is if that is the recommened doage (and it is ) no DR will say to cut it in half. I would be shocked anyway if your DR did say so.
Good luck !
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Actually, I've been wondering if the dosage should be regulated not on the % positive we are (like being a "little bit" pregnant), but rather the size of the individual. I'm a tall, fairly large woman and wondered vaguely if I should have a larger dosage. But I've decided that with estrogen production, it seems to be that no matter the size of the person, it just plain takes 1mg to stop the production of it.
I also vaguely wonder if the severity of the SE's might have something to do with the size of the woman....smaller you are, worse the SEs are sort of thing. I've never seen anything in that and think it might be of interest.
I also think I should just get my mind to quit dwelling on all these questions! Lol.0 -
Nancy: Glad you were able to have such a wonderful vacation! I can't wait to travel again, but it will have to be after the first of the year. I have two co-workers that are headed to Sturgis tomorrow!
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I dunno' Mostlysew
If I take a half percoset for pain, I am LOOPY ( and I am tall and now also overweight by 20 lbs or so) .
My husband, who is by no means ,a heavy guy can easily take 2 ( I'd be OUT like a light ) @ 6 hrs. after a surgery with no issues. We are all very different. I don't believe for a second there is a one size fits all with he dosing.
Your own post mentioned the possibility that the severity of the SEs could have something to do with the size of the woman. IF that theory is true ( maybe ) then I would think the same might be true for dosage.
For my own theory ( which btw is worth 2 cents or " a penny for your thoughts") , I don't necessarily think that dosage of drugs is just to do with size but also how one metabolizes the drug, sensitivity , hormone levels etc etc ... I am sure it is more complex that meets the eye. My guess is that when conducting studies, the 1 mg was determined to be the effective dose.
I do know people on this forum who have decided on their own to cut their tamoxifen in half and seem to have less SEs. Of course, who's to say it is equally effective ?
I would just love to see some good PubMed studies on this .Just pondering ~
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As for AI dosing, check these out. www.breastcancer.org/treatment/hormonal/new_research/20120720.jsp and http://jco.ascopubs.org/content/28/21/3411.full There is more info if you google estrogen levels aromatase inhibitors bmi
As far as I'm concerned, I think they need to rethink the AI one size fits all dose because it apparently does not. I'm 5'3" and a healthy BMI of 24. My MO is emphatic that I don't gain weight. I was thinking of dropping to a 22 or 23 BMI. But now, after SE of mild neuropathy in my hands and feet, I'm wondering if I really want to reduce the estrogen in my body more than it already is. I guess I need my estrogen level tested and have a conversation about this with my MO.
Chemo is, I believe I read, dosed based on body surface, apparently decided by weight and I suppose height, also. Other drugs were not, at least for me, ie the steroids and Neulasta. I've read here of a small woman fighting for a reduction in amount of Neulasta given to her. Perhaps I should have because I became allergic to it, or perhaps it wouldn't have made a difference.
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Mostly sew- the questions you are asking is how a scientist thinks and decides how to set up a study. Perhaps you are a researcher in your heart.
Purple- I agree that the whole issue of SEs, drug effectiveness, dosage is likely very complex as are all things human. It is frustrating not to have the answers but you have to admit that it keeps life interesting as well!0 -
Nancy - welcome back - so happy to hear you got to live and not have the BC monkey on your back.
Tskaiser - I was not as brave as most. I took the wig and scarves off at 5 months. My hair was 1 1/2" when I went topless. Here are some pics ...
5 months PFC (hair 1 1/2")
7 months PFC (hair 2 1/2")
10 months PFC (hair 4")
1 year PFC (5") - kind of looks like a style - but still nothing like I'm used to or like!
Now it's long enough for an updo in the back! Which is good b/c I was starting to look like I had a mullet!
Not fishing for compliments here, just encouraging you Teresa! Like I said, I waited until my hair was 1 1/2" long -I was a BIG CHICKEN!
Vicky
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The hair looks great, mamav!0
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Vicky thanks for posting those piks and your hair length. Im going to compare it with mine as I reckoned it was sooooo slow growing. Im about 1yr 8mths out from last CHemo and it is about 13" now. I had long hair beofre Chemo, about 2 ft from the crown. I see yours has come in quite straight. Mines naturally straight but boy it sure came back curly. I still have Chemo curls as I grow hair back.
Ladies, VERY interesting and legitimate thoughts on dosage/body size/height/metabolism etc. Right now Im trying to figure out WHY Im told in NZ that your % of being ER + doesnt matter. To me that doesnt make sense unless theres something I dont understand.
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MamaV: Your hair looks great AND you look beautiful. As someone who is just 5 weeks PFC, the pics are really encouraging. I can't believe how much my hair has grown in the past week. You can actually tell I am not completely bald anymore. It's coming in dark, which I was afraid it would be mostly gray. I have a little white on top. Did you dye your hair? If so, at what point and what did you use? A rinse? Something permanent?
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Cute hair, Vicky!
I had a hair dresser from my wig place dye my hair before I went wigless (way too gray!). She was experienced with dyeing 'virgin hair', so I felt more comfortable with her doing it. She did an all over permanent rinse because it was too short to do highlights. That was 6 months after my last chemo, so it was a long haul. My chemo curls lasted for a year and then, BAM, they were gone.
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I have been off for a couple days and just went back and read all the stuff I missed. I just want to say that I don't know about being a 'cheerleader', but I am certainly an 'encourager' of trying to stick to an Al if possible. I came to them with perhaps a different outlook because I was originally mis-diagnosed as triple negative (a long story of its own). When I found out I was estrogen positive, I was thrilled. Being able to take an Al cut the amount of chemo I had to do in half, and gave me a 40% recurrence risk reduction (as opposed to the 20% that chemo gave me). It may be a crap shoot in the sense that there are no absolute guarantees no matter what we do. But Als can help us load the dice in our favor and really do improve our odds.
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As far as the percentage of ER+ and relationship to med dosage, this is how I understand it. If there is a drought in a forest it doesn't matter if it's a small little spark or a bonfire the result is the same- a forest fire. The aromatase inhibitor is the rain to reduce the risk of the forest fire. Whether your cancer was 1% + or 100%+ any amount of estrogen could touch off that cancer fire so the goal is to eliminate the threat as completely as possible and research has shown that 1 mg is the lowest most effective dose for anastrozole. Does that make any sense?
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Does that make any sense?
Maybe, Dobie.
But there are always more than one way to look at things. Here's my view - if there's a spark in a forest, you can put it out with 6 firemen and three trucks that come careening in , or you can dump a bucket of water on it.
I'd choose the bucket, if I knew the hoses could be dangerous.
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If I look at it generally, yes it makes sense dobie. Purple, it largely depends on what sort of info you have on whether a bucket will do the job effectively.....well, that coupled with how much risk a persons willing to factor in.
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