Life on aromasin
Comments
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I hope you do well Lily! I've been on Aromasin and my SE are very minimal.
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Hi all---my thinking (don't laugh) I had a hysterectomy years ago with (my explanation) a splinter of cancer, but everything was taken out so I need nothing at that time but no one gave me estrogen cuz my Dr. at the time said it might be detrimental to me--so my body doesn't produce estrogen right? Then I have BMX and all the bells and whistles with it--ok now I'm taking an estrogen sucking drug cuz I had loads of nodes involved too. right. So in my mind I feel that that's why my bones and SE have been so severe it sucked out lots of stuff for healthier bones--I don't know the comparison to have a hystere. and these meds or not I do know alot of women had overies out around this time because of the estrogen factor, but u body would hold estrogen for a while mine didn't really have any to hold--so my thinking is I needed the drug but what's it sucking out. Does anyone understand me---cuz u know I have a hard time with questions.
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Yorkie,
I do understand your thoughts on this...;) I just want to question Standard of Care per recommendation to me (my case to only "consider" Tamoxifen, which I did even though I choose not to use it), certainly not encourage anyone to ignore SOC. or dismiss the evidential findings.
I read this thread because I'm well aware I might need to consider the Al's at some future point...if I get a recurrence. I learn a lot from you all going through the experience...
And I think you all are brave to do & follow through with what you feel/your docs feel needs to be done.
My concern though is for newbies to realize/know they have OPTIONS...sometimes options that the docs fail to properly inform them about. That's why 2nd opinions are so very important. Each person's case is unique.
Violet0 -
I understand where you're coming from violet. We do need to question treatments we are uncertain about. Second opinions can be valuable. I got one when my original team was recommending a surgery I seriously questioned. Went with the second surgeon's opinion, and used her to do my lumpectomy.
I do want to clarify something though. I, for one, am not being brave to take my prescribed medicine. I am grateful to have a life saving treatment available. Every morning when I swallow my pill I feel so happy that I am protecting myself against the horror of recurrence, especially a metastasis.
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Yorkie,
I getcha...;)
I guess I just think we are ALL BRAVE & strong in moving forward despite our BC...instead of wallowing in Self-Pity. Maybe more matter of-fact/ no nonsense brave...not that we're extra special just because we're dealing w this disease.
Violet0 -
Lily, I hope you have more luck with Aromasin. I'm another one who has minimal se's. I was on Arimidex for 14 months and was in hell. It's nice to know that for me Aromasin is very gentle. I'm hoping it's as gentle for you :-)
Trish0 -
Violet, you are so correct about being brave! I misinterpreted, which is NOT unusual for me. Hugs sister!
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Thank you, apparently aromasin (exemestane) works differently to letrozole so my fingers are crossed as was full house er and pr positive......not sure i am convinced blocking all oestrogen is the way to go but with my stats i need a solid alternative and not found it yet......
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Camillegal after our ovaries stop making estrogen, our adrenal gland and fat continue to supply estrogen to the body. The AI's stop that process of making estrogen from the adrenals and fat. Make sense?
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Linda yes it makes sense just didn't know where it was coming from--thank u so for answering my question, That was in my mind and it all didn't make sense to me--now it does,
Have a great day.
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I have a question for those of you who have had chemo administered through a port. How many days after the insertion of the port should the chemo begin?
Look forward to all replies and many thanks.
Marianne
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I had a port put in one day and chemo the next. My chemo nurse was not happy. Originally I was supposed to have it put in at least several days before chemo. She preferred it be a week. My Oncotype results were delayed for three weeks, taking five to get them. Therefore the rush when it was clear I had to have chemo.
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I'm sure it's all different, my port was put in and my surgeon called my Dr. to send me right over, but the insureance didn't OK it yet so 7 days later (I think) I started, cuz I remember goin back to work for a few days.
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I appreciate your replies. I am concerned because I read on here you should wait 5 to 7 days before chemo begins but the oncologist insists on starting the following day. Just one more thing where he and I don't agree.
Marianne
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I think that is preferable, but it depends on how urgent it is that you have chemo. I would have preferred chemo the same day when I was still numb and out of it, because the next day accessing the port was much more painful than later sessions. The nurse had to take extra care to make me comfortable and how can anyone really be comfortable with the first chemo infusion.
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I had my port put in on a Friday and first chemo the following Wednesday.
There's a great creme you can get called Emla Creme. It's an anaesthetic for your skin. You put it on at least 3 hours prior to chemo and need to cover it with a plastic bandage (sorry I can't remember the name).
I almost never felt the needle go in. It's fantastic stuff. Mine lasted through 14 months of treatment and I still have some left.
Trish0 -
Hi everyone, I'm new to this topic. I was on Arimidex and had horrible SEs. I am now on my third day of Aromasin. I sure hope it will be better for me. I have been reading posts and finding that some are doing really well. Gives me some hope.
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Doxie, my oncotype was 30. My MO recommended Chemo, but I turned it down. She didn't try to talk me into it but stressed really hard that I needed to take the AI. I just felt in my gut that I just shouldn't do Chemo.
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Chinneymae,
Welcome to the Aromasin thread. I orignally started on Arimidex, then switched to aromasin. I switched because of severe eye SE. This didn't go away on aromasin because we discovered it is severe dry eye due to the low estrogen environment caused by the AIs. I'm managing the SE to minimize it. I had intense hand pain on Arimidex and larger joint pain, ankle and hip, on Aromasin. It's now 9 months on aromasin and the pain is rather minimal. I take a NSAID when either starts to hurt.
That's what you will find here. We all make different decisions, no right or wrong about them. Mine Oncotype was 30 too, but I did 4 x TC. I was diagnosed in my mid 50s and people live into their mid 90s in my family. I felt I had to consider that when chosing treatment options.
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Hi, just found this thread after participating on the Arimidex thread. Was on Armidex for more than a year, with increasing joint pain and stiffness. Could hardly get up after sitting and felt like an 80-year-0ld. My MO switched me to Aromasin 2 months ago and I am noticing a difference, with better mobility and less pain. Of course, I developed two trigger fingers, but overall, this is kinder to me.
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Doxie: My MO said that chemo would only give me 7% so I decided it wasn't worth it for me since Chemo isn't a guarantee. She said the AI would give me 10%. And you are absolutely right, there is no right or wrong decisions here. We have to do what we feel is best for ourselves. I have also decided that if the Aromasin makes my quality of life to the point I can't function, I will not take it either. I will probably try the all natural DIM. (It's what I really want to do anyway but I promised my MO I would give the AIs a try.) At 57, I don't want to give up any years of QOL. If I had had nodes involved I would have done it all.
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Welcome newbies I hope this drug is kind to u, it is to many people and I truly hope it will be for u.
And Doxie is so right there is no judging on any of this, we do what ever feels good for us, and that's how it should be.
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Maryanne: probably too late, but I had my port put in one day and started chemo the next. They accessed the port after it was placed and covered it with Tegaderm to keep it sterile. The we very happy when I went in for chemo and it was already accessed. 😍 The Emla cream is great. Didn't feel anything more than pressure the next time.
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Martie u have such a pretty smile.
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Does aromasin make you more prone to infection like after tooth removal?
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I doubt if it would, unless lack of estrogen makes us more prone to infection. Does it? I wonder --it is possible I guess, since lack of estrogen leaves us more prone to bone issues and heart problems; maybe lack of estrogen also weakens the immune system which would be ironic since a weak immune system makes you more susceptible to cancer.
Who knows?
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Have a brand new issue and not sure it is related to the Aromasin...my hearing in my left ear is going in and out and it came on suddenly. Right now, I can't hear out of my left ear more than just muffled sounds. WTF? Anyone else experience this? I googled and there were a few people that had the same thing happend. I am not sure if it is sinus related (have been stuffed up ever since starting this drug too) or Aromasin causing it. UGH! Joint pain etc I can almost deal with, but loss of hearing..not so much. HELP! Should I call MO early since I see her on the 17th anyway?
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Debdylan: There is an estrogen level test. I've seen several posts where women are taking the natural DIM and having their estrogen levels checked. They say that it is lowering their levels. My onco recommended Chemo for me too, but 7% decrease wasn't enough for me to go through all that, especially when she said they got it all and I was technically cancer free.
I'm really unsure about the AIs. There have been women that took it for 5 years and it still came back and some that took it and it didn't. Makes me wonder if it doesn't really matter if you take it or not. If you are gonna have a reccurrence you're gonna have it and it not then you won't. What I wonder is if the AIs are supposed to block the estrogen and you stop after 5 years then you will be producing estrogen again so will it come back then? I am taking it right now, but I'm still very sceptical. The Arimidex made me feel like a 90 year old woman. I could barely go up the steps at my house and I felt like I had no energy. So my MO changed me to Aromasin. I do believe that blocking estrogen does speed aging to some degree, because that is what menopause is. It's the aging process where we stop producing so much estrogen and our bones get weaker and our skin wrinkles. The AIs just speed up this process.0 -
April, why don't you call your GP. I've had hearing loss, which began a couple of years before starting Aromasin. Don't know how old you are, but many of we baby boomers spent far too much time in front of loud rock bands, back in the day.
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I am 58, but this was not gradual. It was VERY sudden which makes me suspicious. It most definitely has nothing to do with the front row seats I had for Led Zeppelin in 1970...LOL
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