Life on aromasin
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I hear you seabeal and I too have had that sense of doom, in spite of all of the good reports.
What is BFE? Why can't you have choices? The Cancer society and the hospitals work together to get you whatever you need and want. I had free flights to New York for my infusions. They would have given me free hotel rooms too.
I hope you don't settle, where there's a will there's a way.
But yeah, in the end it's all a crap shoot.
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Quality of life - you said it!!
still have some residual joint pain in my wrists of all the weird places, but its working it self out. Now when my muscles ache from yoga the next day, i have a bit of panic, thinking the SEs are back......but then realize its just the unfamiliar muscle ache of a good work out.
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The study for staying on for 10 years is not for AI's, but for tamoxifen. Here is the link. It was presented at San Antonio and many docs are embracing it. By the way, AI's are still not the "standard of care" for DCIS. Only tamoxifen is approved. AI's are prescribed "off label" but for IDC, AI's are approved for post meno women.
Link > http://www.cancer.org/cancer/news/news/study-ten-years-of-tamoxifen-better-than-five
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BFE = Bum F__K Egypt Probably Texas slang, heard it all my life. As far as persuing additional medical opinions regarding the chemo, I'm just tired of it all. I feel like ca has stolen so much time from life in more ways than 1 and I refuse to give it anymore. I'm also under treatment for chronic back pain which has gotten worse since my dx and all I want is to get back to some kind of normal so that I can live the rest of my life doing what I enjoy. I guess all of this sounds whiney and pathetic if I'm not willing to do anything more about it.
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OH no! It doesn't sound whiny at all. We've all been there. I feel the same way. You just burn out at a certain point.
I think we all understand on this board.
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Hi Ladies and rant all u want--All these side effects are crap---and I know and zi like to hear that the SE's are minimals so u know some are doing OK--but some of us are GRRRRRR and that's how i feel OH well not much at this pint I can do--if this is one of the easier ones--maybe I shouldn't change.
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I've been off aromasin for about 10 days and tried to take a long walk today. I am in such pain!
I looked up Aromasin to see if this kind of pain could be from it.
Turned out that I was on a weight lifters site! Weight lifters use aromasin to build muscle.
Don't know what to make of that. It really is a steroid. But aren't steroids bad for you?
It did say that it cut recurrence by 65%. That's the highest I've heard.
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Tim, I don't know what to say. Als cut our recurrence rates by a lot and are truly life savers. That's why I religiously take my little white pill every morning. BUT, I have never experienced the horrible SEs you and others report. I hope you can find peace with your decision about continuing, or not, the treatment. Nobody can be expected to live in a state of excruciating pain for five years. God bless you whatever you do. (((Timbuktu)))
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Thanks so much Yorkie, I'm a mess tonight but I'm sure tomorrow will be better.
You're right, suffering like this is hard to imagine for 5 years. But the alternative...
I guess I'll wait to see what the onco says on April 19. But I know what he'll say,
keep taking it. Pain is a funny thing. No one else can feel it or see it so it's not at all real to them.
It's totally subjective and something I have to decide whether or not I can tolerate it.
A woman i know, a psychologist, saw me suffering whe we went out to lunch with a group of friends.
She told me to go off of it! I couldn't believe it. What a thing to say! But she said "I was suffering too much."
How much is too much? that's the question and no one can answer it but me. I guess my big hope is that this is just side effect pain!!!
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Too much is when you cant enjoy your life bc of pain.....too much is when you cant exercise anymore.....too much is too much - only you can answer that one. In some ways, my severe SEs made if very very easy for me to go off of them and stay off. No point living if Im going to be in pain and miserable, not enjoying life or being able to take care of my family. Youll know the answer when the time comes...... not sure where that stat comes from, but there are no guarantees that AIs will prevent a recurrence. Lots of women get dx while taking it. Have yet to read anything that says it absolutely prevents recurrences
I am not a doctor, scientist or expert. My comments are based on my own experience with my own individual diagnosis. Do your own research, get a second opinion, choose the best professionals/specialists and be your own health care advocate!
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Yes, Shayne, you've been there. I just took two aleve and it's starting to feel better.
It's such a balancing act. Trying to figure out just what you can do, how much you can handle, is it worth taking more drugs, etc. And you're right, there are no guarantees. My cancer was 90% estrogen positive. There's still 10% that won't be helped. One day at a time I guess thats the way to go. So glad to hear that you feel alive again. Sometimes it just feels like I'm marking time and that doesn't make much sense.
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Ya know, I was thinking about this from the point of view of lots of reading that I have been doing. A lot of the blame for the estrogen in our bodies is due to the food we eat and it pisses me off. Why did they do this to us? I mean not only do we have to take this drug that has so many side effects, but if we decide to try and do this naturally, by buying organic meat etc or becoming a vegetarian/vegan, it costs us a lot of money out of our pocket to buy food that they DON'T shoot up with hormones or in the case of the vegetables are not covered with pesticides (that you can't wash off)
Monsanto and these big companies are to blame for some of this crap. If I decide against taking an AH, I am going to try to lower my estrogen with diet and it is going to be really expensive but I have to cut the estrogen somehow. I am just angry that we don't have a voice/choice on this stuff except to pay top dollar. We do have a few farms around here I can buy veggies from that are pesticide free, but other than in the short summer season, I have to pay extra to go to Whole Foods for it. Ugh...just venting.
I don't want to put this stuff in my body when they don't even guarantee it works, just like Shayne points out above. I am so torn cause I am >95% ER+ and I don't want a recurrence but I do want to live the rest of my life not being in constant pain!
Ok, off my soapbox and rant over. Sorry, it just makes me angry that our own meat supply is partly responsible for this!
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Tim I'm sorry this is such a hassle even after stopping. And right u know how much pain is pain and I feel like who signing this quarantee, it's a hodge podge of crap as far as I'm concerned. So many think once u've stopped the active treatment and continuing on Als u are fine anf should feel good now. Crap a lot of us forgot how to feel good . So do what u think is best, that's all any of us can do.
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Well, the best thing we can do for ourselves, if we can do it, is to eat less. Our own fat is a source of estrogen. I struggle with my weight a lot so I'm not being preachy but it is one way to help ourselves and save money at the same time!
I was thinking about the "odds'. Statistics are tricky. I think the study said that say in one year there will be l.5 recurrences out of 100. The aromasin will cut that back to something like .6. So even though it's a 65% decrease it's not as extreme as it sounds. Still, if you're one of those people who could have avoided a recurrence, its a lot to you! oth, the odds are still very good that you wont get a recurrence, either way.
Hang in there everyone! I took two alleve last night and got a few pain free hours of sleep. Heaven sent!
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oh boy - body fat. I gained weight on Aromasin that I have not taken off. Its been really really hard. I havent been able to do my usual workout at the gym - so now Im doing yoga every day and hiking.....as well as watching what I eat. I have always bought organic produce and organic chicken.....but stepped it up to include dietary changes - more veggies, greens etc. Not quite sure what else to do with the weight. I dont have a scale, so just been going by how my clothes fit and what I look like. Harder to come off the older I get.
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I have recently lost a lot of weight on weight watchers (81 lbs! go me!!) but have put back a quick 8 since I have been stress eating like a crazy woman. Trying to back off but my well meaning hubby bought me like 5 bags (the big ones!!) of cadbury mini eggs cause he knows I love them and they only come out once a year. So, I have put them up high in the cupboard where I can't see them and have only been eating a couple here and there. They are so addicting..lol Also, I read how cancer LOVES sugar so that curbs my enthusiasm for them a bit.
Normally I am not a candy or sugar eater but these little buggers are so good..lol
I am thinking I might to entirely vegetarian (slowly) since my daughter has been one pretty much her whole life and keeps slim and trim (she goes to the gym, not just eats healthy) and she is relatively healthy. Anyway, all of this is a crapshoot since so many healthy people get BC!
Have a great day everyone. I have my CT scan/simulation for rads today...yup the fun never ends with BC!
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April over 80 lbs--wonderful--u'r in a good place. I give u so much credit it is so hard to not eat what u feel like eating sometimes. Tht what I need to loose and I'm so miserable about it--I always thought when u have big weight problems u should go straight to heaven cuz that's miserable to live with. All my life I did eat healthy and was in good shape went to the Y, played volleyball and then stopped and thought I want to eat what I want. and busted out into different sizes and as I'm older oh it's worse and my excercising is minimal cuz I'm always hurting with my back--which will end up being another Dr. involved with my life.
Good Luck today and take care of u'rself.
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I was on WW when i got dx and had lost 12lbs. Thinking about going back to it. It really works
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I've gained 60 pounds in one year! I know I'm digging my own grave with my fork but that must end and now! Maybe being off of the pills will help. You go girl!
Wishing you good luck today April. I will say a little prayer for you.
You have done well which proves it can be done. It shall be done!
It's Monday morning, April 1! I'm gathering my determination!
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Does anyone know why this thread no longer appears on the Active page?
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Weight gain on effexor and all the other SSR's is very common.
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OK Yorkie mom I'm on it.
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Yorkie I just saw it on the active page cuz I immediately wrote and then checked it out. ?????
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Cami, I just looked and can't see it! Maybe it's my computer???
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Timbuktu, gaining 60 lbs in one year is not all YOU. Most likely it is partly stress (google cortisol a hormone in your body that responds to stress) from all this BC bullcrap and partly eating out of stress and of course treatment related as Hobbes said above. This cancer stuff is hard work! Appointment after appointment and exhaustion. Who feels like cooking/eating healthy? That is why I know I packed on a few of my hard fought loss in the last two months. But, it is so easy to gain all of my weight back. I am really nervous about an AI or Tamoxifen partly for this reason.
What I like about WW's is that you can eat anything and once I get in my good health guidelines for the day, the rest of my points are mine. I eat well and still lose.
Over the last 10 years, I went from 303 lbs to 144! I lost the last 81 of them on WW's. The rest I did lowcarbing. I lost 124 lbs in 2002 but never got to goal (my goal is 120) and got stuck at 179 for a few years. I then began gaining weight again and got back up to 225. I weighed 144 when I got diagnosed. Now I am 151.5 as of this morning...ummm, wrong direction!
I was morbidly obese for about 10 years. Once I left my ex husband and some of the stress from his drinking, I was able to lose. But, the last 15-20 have taken me a year and at this rate plus the gain, goal will take me forever! I am not quite 5 feet tall so I can't weigh more than 115-120 and not be overweight...ugh.
Anyway, just wanted to let you know how much I understand how hard it is to lose weight. It is incredibly hard.
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Thanks,April. You are really doing great and I hope you don't let a little fluctuation make you feel bad, I know how that goes! I've always struggled with my weight. When I was on chemo I couldn't believe how I started gaining and they told me that most people do. It's the chemicals. But of course I ate too much and excercized very little, or not at all.
So I couldn't wait to get off of the chemo and start dieting and excercizing. But then these pills, I can't understand how they work but i know what I could get away with before them and i can't get away with anything now.
So, I'm off them now. And I just took a long walk in the sun! The pain just isn't there! I keep trying to understand what is going on but it's impossible. Is it the weather? Is it what I ate? Is it the shoes I wear? I go round and round, decide it's one thing or another and then the next day I'm proven wrong.
So, today is April 1 AND a Monday so it's the perfect day to start a diet! ;-)
Good luck getting to goal. YOU CAN DO IT!!! AND SO CAN I!!!
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WW is more a lifestyle change than a diet. I think thats why it works, and most people keep the weight off. Now that Ive done it.....i know how to eat, even without really following it. But to see real results, I know I should go back to the meetings and paying the money.
I went hiking today too - a glorious day!! A little sore from doing so much Yoga....but a good kind of sore.
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Oh again I just wrote everyone on here ad lost it all in 1 second--my Comp kicks me out of here.
So I'll just say April WONDERFUL
Shayne I agree with u 100%
Yorkie maybe it could be u'r comp. IDK, mine is possessed so I can't help.
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May wind up joining you folks. Have tried Arimidex, non-stop headaches. Have tried Femara, horrible hand pain and swelling (currently on now). We'll see. I see a Dr about the hands tomorrow and Onc on Thurs. Fri is the second injection of Lupron for me. Busy week!
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Galsal I hope if can join, what;s the difference in what we take anymore they all scew us up. That's terrible to say some people do very well on these. So maybe u'll do better. Good Luck.
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