Life on aromasin
Comments
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April call u'r Dr. I know someone who was on Tamy and lost her hearing, it's rare but it does happen-it's low % on SE level but it still happens.
Talk about aging, well I am older but I did have really good skin (inherited LOL) and now my skin is almost leatherly and I have never been a sun person--I use good lotions and stuff but I'm still as dry as dirt. And I believe chemo doesn't help ny part of u'r body bit I know if the Dr. gave me a chice I wouldn't have had it, but no choices really and it's played havoc with me and Aromasin too--it's like a continuation.
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Well, best to check it out. At 64 I've had a few issues before and after Aromasin that I believe are really just age related, but the med can definitely make stuff worse.
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I have heard about Tamoxafin causing hearing loss, but not the AI's. I think you should check with your doc as Yorkiemom suggested.
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Deb, I can honestly tell you that I have noticed NO skin problems from Aromasin. I already had very good skin for my age, 62 at dx, when I started taking it, and nothing has changed. I also have experienced only mild SEs to joints and muscles, which are pretty much resolved, or I'm just used to them now, lol.
I am married, so I can't relate to getting out into the single scene after all this. I also had a lumpectomy, which is another beast altogether. I do know that many who have had mastectomies and reconstruction say their boobs are better than ever!
So, this "journey" isn't all bad, just mostly,
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Anyone taking bone stregtheners for combat the horone blockers? Which do you receommend?
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DebDylan,
I did chemo with a 30 Oncotype because I was concerned about tolerating or being allergic to AIs. I too wanted at least some protection. I had an allergic reaction during chemo, but ok so far with AIs.
I too am divorced and single and only now looking to date. I was about ready before the cancer diagnosis. I had to get my nipple reconstructed and healed before dipping my toe into this water after over 26 years of marriage. I divorced him, but he is already in a serious relationship.
It's not vanity to fear looking older and to get reconstructive surgery. I took a 2 mo break between arimidex and aromasin and a glow returned to my skin. But overall the difference was small. I doubt that anyone but me notices.
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Update on my deafness. I can hear! The doctor flushed out my ears a chunk of wax the size of a large raisin came popping out. It had lodged in the ear canal and was blocking it off very effectively. My hunch is they should make ear plugs out of that stuff..LOL...hey, maybe I can get rich off this idea...HA! Have a great day ladies. Soon my MO will tell me whether she wants to switch me or wants me to give this more time. I feel so lousy, my hunch is she will make a switch or at least give me a script for AROMASIN instead of the generic to see if overiding the insurance on the generic works better. So many have said that the generic fillers are what caused the issues cause they use different binders in each brand as they can by law so, cheap binders may be the culprit. Who knows? I just know the joint pain, runny nose, and all of the other nasty side effects are awful for me.
I know some of you did settle in after a while and have no bad issues now. That is what I want for me cause I hate starting over. I want this to work or I would have stopped it already. I am too afraid to not take anything and leave myself to chance. But, QOL counts too!
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CT,
So glad to hear it was something rather minor. It's a lesson for all of us to not always put the blame on AIs.
Now 16 mo after starting AIs and 9 months on aromasin, my aches and pains are diminishing. I'm always a little stiff, especially at the beginning of exercise and when getting up after sitting for a while. It goes away. I think adding yoga this winter will help.
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April, so good to know the deafness was only ear wax! and that all is out now. I use ear plugs when swinming that are like a wax so the idea may be taken! Hoping your aromasin thing gets resolved.
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April what a relief to know why and to be able to hear again.
Deb I do know older women that when this is over they seem to find a relationship that makes them very happy. I'm not saying u'r old, I mean if older women can do it then u might be luckier than u think. So don't let that stop u when u'r ready.
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I'm wondering if anyone has had her face break out on Aomasin. I'm 58 and haven't had this happen for a long time. I've been on it for almost a month. Just curious.
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I haven't but I have heard of this and they went to a dermatologist. So it can happen.
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Interesting.
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I think that is one of things that happen with estrogen loss. When I went into menopause 17 years ago my face broke out. So it would make sense that it could happen when on any of the IAs I think.
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My face didnt break out - but the melasma on my cheeks came back, due to the lack of estrogen. Now that Im off it, im treating it......but its a long road.......
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Thanks for the info. Because I quit using HRT this past June I'm finding all sorts of things that relate to lack of estrogen, and it seems they all worsen with Aromasin! I've just found out my eye pressure is too high and I'm having to use medicine for that. I suspect that was triggered by not have the HRT anymore; also my eyes have really dried out too. (it seems everything has dried out!) Anyway, thanks for the input!
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Yes CB EVERYTHING dries out and as u go on find more LOL
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I think more of our problems are simply do to the very low estrogen levels we now live with. Our bodies produce estrogen because it is an necessary hormone. Unfotunately it fuels most BC. When any of the AIs stop estrogen production it is an intense shock to the body and the SEs begin. My body has been 16 month on AIs and has mostly adjusted with reduced pain in joints and muscles. I'm creaky if I sit long and in a cold room.
CBrown107, I've struggled with the eye SEs for over a year. I'm seeing ophthalmologists at a teaching hospital, so have had several tests and half a dozen or so residents and attendings puzzle over my eye SEs. Two things are happening. The sudden loss of estrogen that happens when you go off HRT, through menopause, and/or start AIs can quickly trigger age related eye problems that you may or may not have had later in life. PVDs or posterior vitreous detachment, which is more common in post meno women, is a normal aging process of the vitreous detaching. This alone is not harmful unless it pulls the retina with it causing the retina to detach. This is an emergency. That's why drs are concerned with PVD symptoms. I'm on PVD watch with one eye, the other safely detached last spring.
Dry eye is also really common. My temporary decreases in vision are due to severe dry. I use a warm compress on my eyes for 5 min in the morning to open oil glands on my lids. I also use preservative free eye drops throughout the day and eye lubricant before sleeping. This routine has pretty much minimized the problem, but I it won't go away until I'm off AIs.
Any other eye disease related to aging that you might have or now have may be due to the accelerated and continued low estrogen environment. Eyes need estrogen for their health and the eye doctors know little about how low estrogen from AIs effect eyes.
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Thanks for the eye info, doxie. I've been watching for the joint issues to begin (possibly, but hopefully not!), but hadn't even thought about eye issues. It's always something with all of these drugs, isn't it?
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It's incredible how important estrogen is for systems in the body that you don't think are related. I told my daughter and her friends the other day to enjoy their estrogen while they have it! The main thing I thought about was hot flashes. And I certainly have them all day long and all night! But I wasn't expecting some of the other issues. It's great to find people here who have similar things to deal with! Doxie, your particular eye issues seem pretty scary. Glad you are being followed closely. I may try the warm compress in the morning. . . I'm using Restasis, and gel drops and eye gel to combat the dryness. It is all helping some.
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When i was taking aromasin - i had severe eye issues...... The other thing people dont realize is how lack of estrogen effects the heart. Please pay attention to your bodies. Taking more drugs to counter-act the drug is a slippery slope!
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Been on Aromasin for 27 months. Was the 3rd of meds in this class I had tried. The previous 2 caused such joint pain, only high doses of Percs would relieve the agony. Thus Aromasin.
Joint pain was manageable sign Advil, so stuck with it.
Dryness yes.Feel like a dried out prune.
At last year's bone density,my Oncologist Said my bones were great.
Got a msg yesterday from nurse, saying my Oncologist was concerned about bone loss in my spine.
She said Dr wanted to confirm I was still taking calcium (I am, 2, 600 mg tabs, with vit D3, 1X daily), wanted me to start taking vit D, 2000, to be taken at the same time as the calcium. But is also prescribing Flosamax, which I am to take 1X a week.
I haven't gone to pick it up and start because I'm hearing so many bad things about it.
My mom told me my great aunt was on it. She died at 88. My mom said she was told DR was internal bleeding.
Then I read about the side effects of irreversible jaw deterioration, and people losing teeth.
I'm scared to death if he's seeing this now, and I've still got to take Aromasin for close to 3 years left!
I'm such a mess already, diagnosed with duel Achilles tendonitis, (which is mostly seen in men in their 40s who push themselves athletically) and I am far from athletic!
I can't walk or be on my feet for long, plus the pain has become unbearable. It often wakes me, the pain is so severe. I'm experiencing quickly progressing right knee deterioration, and don't know what to do.
I'm terrified to keep taking the Aromasin mostly because I'm beginning to think another side effect might be that it's also is affecting my connective tissue!
Yeah, doing all of this might keep the cancer away but what about one's overall quality of life?0 -
Eve1956,
Some MOs are very agressive about treating bone loss, and others are not. Before starting meds it might be helpful to find out exactly how much your density has decreased and how close you actually are to osteoporosis in the spine. You might have had a high % of loss, but still be well within osteopenia depending on where you started. Are you getting your Vit D checked regularly? You want that to be near 70 or so. If it is really low, this might be the first thing you work on. Weight lifting, resistance work, and pounding exercise is also important. It is hard to do if you are aching, but for me has made the pain more manageable.
I've got a DEXA coming up soon. I've gotten my Vit D up and have been exercising a reasonable amount. Hoping I'm keeping the bone loss to the minimum. My MO insisted on a Zometa infusion at the beginning of AIs, but has stepped away since seeing how proactive I am about exercise. He never brought up Fosamax. My mom has taken about all that they give to women w/o cancer. In the end I think Vit D, moderate calcium, and exercise may be more important, or just as important. My thinking only, no proof.
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Yes, the heart issue is one of the reasons I stopped the drug. My afibs got much worse and more frequent.
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A little OT, but I had my last Zometa infusion 2 weeks ago. Yay, one less treatment to deal with! My bone health is good, but I do take Vit D and Calcium faithfully. I also exercise about one hour a day, usually on my stationery bike.
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Eve, exactly one of the reasons I have quite. It seemed to me I had 2 choices: 1. I could take the pill and if I didn't die of old age I would certain be wishing I was dead and maybe, maybe not have a reoccurance or 2. Don't take the pill and enjoy my life doing all the things I wish I had done but could never find the time to do with the possibility of a reoccurance which exist whether I take the pill or not. I choose living not dying inch by inch and then dying anyway.
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Seabeal: I have a lot of the same feelings that you do. Sometimes I feel I'm damned if I do and I'm damned if I don't. I had bad SEs from Arimidex and switched to Aromasin. So far it's been two weeks and no SEs noticed except I have a mouth sore and my tongue feels like I drank something hot and burned it.
I have been researching DIM which a natural estrogen blocker (see article below). Before you completely stop doing anything you may want to look at this. I have been seriously thinking about trying it if the Aromasin starts giving me problems. My "Quality Of Life" is more important than "Quantity of Life" to me.
http://www.healthyalterego.com/index.php/ask-dr-huber/q-a/q-for-fighting-breast-cancer-is-there-any-problem-taking-dim-along-with-arimidex-tami/0 -
I just posted a question on that link, asking about DIM and blood thinners. I had read elsewhere that you shouldn't take it if you are on a blood thinner and wanted to know his thoughts.
So if any of you are also on Warfarin or something like that, be sure to check with your doc before buying any DIM.
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If you are on a blood thinner I don't think you should take DIM because it is made from leafy vegetables like broccoli, cauliflour, and collard greens, etc. I don't think you are supposed to have too much of those type vegetables when taking Warfarin (blood thinners). Please make sure you check with your physician if you are taking a blood thinner before taking DIM.
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What about aspirin every day and DIM ?
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