Life on aromasin
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Stomach was just funky for 2 days. Anyone have digestive issues? My appetite is Low and I'm back to mostly wanting bland stuff. Aches and pains. My Onc asked if it was worse with Arimedex and i can't really remember, I had nothing to compare it to at the time, i was just so stiff and achey .I think I have more arms, legs, feet and hands soreness with Aromasin. We decided to check in in 6 weeks. He said that sometime SEs stay the same, get better, or get worse as time goes on. I have the Lexapro but haven't taken it, afraid of more side effects. How is the Effexor for you?
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I think you have to take aromisin with a meal. I didn't a couple of times and paid for it!
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wrestling with Aromasin; realized that I had diarrhea/indigestion 3 separate times this week, extremely unusual for me- and suddenly went, oh, it could be Aromasin! Somewhere up above someone suggested taking it at night instead of morning and I will try that. However, she also said she'd tried mild diet, pepcid, lomatil, etc and it didn't help. Anyone have this? Sheesh. Good for watching the weight but man all three times around 4:00 I was... not so great to be around!!!
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I think the effexor helps a little bit, I do have less hot flashes, and my neuropathy was waking me every night, now it only does occasionally, and the side effects on effexor are much less than on nortryptiline or amytriptiline (sp?) I started taking a couple tablespoons a day of Braggs apple cider vinegar this week (about 5 days now) and I actually think that may be helping even more with the hot flashes - I read that on one of these forums.
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Thanks for the tip on the ACV! Still having hot flashed/cold chills - which was what i went thru at menopause 5yrs ago or so.
I had diarrahea the first few weeks, but attributed it to the huge diet changes I was making. IT went away on its own.0 -
Oh I like most of us thought OK everything is over and I'll start feeling good again--haha the joke's on me.. We all know about my battle with violent diarrhea alot of the time with no answers why--2 hospitals and at least 6 Drs. ??? and I'm in pain most of the time--so it hasn't stopped it just keeps on going--it all sucks. Another lump on my rib which needs more testing in January-I'm in no hurry and My electrolyes are all screwed up causing some minor heart problems- So how do I feel--I feel like it's all in my mind, until a Dr. put it in really happening mode- Sorry if I sound bitter, I'm not really just sometimes I can't do or o where zi want. Can't make plans--it goes day by day.
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Camilegal are you taking an Al?
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I had diarrhea the whole time I was on Aromasin. But not as bad as yours Camillegal - yours sounds really bad. Hope they can figure out what's wrong. I have a friend who gets it off and on - for days each time - she is not on any meds so the docs can't figure out what's wrong.
Could yours (and hers) be irritable bowel syndrome. We think that is what one of my dogs has, but waiting for pathology to look at his intestinal biopsies.
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I'm on Letrozole, and although I don't have diarrhea all the time, my stools are extremely loose and have two-three bowel movements everyday. I did suffer a lot from diarrhea when I was first put on L. I'm also one of the few, I guess, who have actually lost weight
taking an Al. With all my bowel movements, I want to ask my MO if this is affecting
my nutritional health???0 -
I felt nauseous for a couple of weeks when I first started taking Aromasin, nothing too bad and only lasted an hour or two. It's now stopped. I also have D fair bit, not every day or even every week, but every now and then I have a day where I have a bad day. Like Scottiee I have two-three bowel movements a day normally - have been like that all my life. I had a colonoscopy last week - had a positive FOBT which was a shock, but all ok, they found 5 benign polyps which were removed - everything else was normal.
I still have an occassional hot flush, but not bad, my biggest problem is the cold flushes. It's summer here in Australia and while most people are walking around in short sleeves and shorts, I'm rugged up with a jumper on usually - so unlike me. But I'm not complaining, I hate being hot! lol
The prep for the colonoscopy had me laughing a bit - one powder I had to take said "expect bowel movement within 3 hours" I lasted exactly 5 minutes before everything erupted lol sorry if that's TMI.
A stage IV friend of mine takes Boswellia and Curcumin and says it helps her with muscle and joint pain. We get it from a health food shop here - it may be worth trying to see if it helps any of you.
Trish
xoxo
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Ive got to sign up for a colonoscopy in the next few months as well........not looking forward to that.
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Shayne the procedure itself is a non event :-) the prep is "difficult". I found it hard as the D was bad (it's meant to be) and I really missed my milky cup of tea! lol
Trish
xoxo
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Trisha Anne, love your style.Plus it reminded me that with only 4 weeks, Aromasin may settle in, who knows. @ days of taking it at night seems better so far. AND- reminded me to be grateful that at least I DON"T have hot flashes or cold flashes! One thing I seem to be skipping, thank god!!
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Oh I'm far behind again---Scottie I'm on Aromasin and had had D for 5 yrs now been in the hospital a couple of times for a week at a time and it's stkll a mystery--so I see a new gastro--in Jan and we'll start all over again, I uess-that's what plays havoc with my electrolytes again outting me in the hospital with critical points--and that's why i get blood panels all the time and I'm again low on a few things and now another bladder infection so they hike up my meds and anew antibiotic.
And shayne a colonoscopy is no ig deal, just bring something to read and the ohone in the bathroom and just sit. I was awake for mine and watched the whole (get it) rhing and we had a lot of laughs--it was an easy test.
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I was up half the night last night. Aromasin? I had horrible pain in my legs. Aromasin? I'm horribly depressed. Aromasin? I can't lose weight. Aromasin? I'm nauseous. Aromasin? I can't walk as my ankles ache so badly! Aromasin? My heart feels like it's racing. Aromasin? The one thing I don't have is hot flashes. I think I'd mind them a lot less than these other things.
I'm not taking it today.
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Timbuktu - Oh, so many Aromasin ?????
You would think the SEs from AIs would be the same because of the low estrogen environment they put us into, it isn't the case for me except for vision problems. Anastrozole caused pain in my knuckles, pretty intense before I had to go off it. One week after starting exemestane, my left foot and ankle joints started swelling and I had intense pain shooting up through the shins. My knees are bothering a bit also.
I'm hyped up on exemestane. No chemo brain or fog, just the opposite. Wasn't the case with anastrozole. Sleep, who knows? It has been a mess for years, but now I have more trouble getting to sleep. No hot flashes either! Had them regularly on the other drug. Also not nearly the vaginal dryness of anastrozole. But then I've only been on exemestane for a month now. Anything could happen.
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Doxie, that is really interesting. When I told my onco about the leg pains he didn't say anything. It made me wonder if something else was causing it. I don't think it was this bad on the other drugs. And yes, I'm agitated! Exactly! I hadn't thought about it quite that way but my mind races with bad thoughts and I can't sleep. I slept all day today. I didn't take it. And when I awoke, around 6 pm, nothing seemed so bad. I wondered where all of the "problems" were. Very strange! I can't imagine living this way for 4 more years. OTH...the alternative is so scary. Don't know what to do.
BTW, I asked the onco if all of them would have the same side effects since they all did away with the estrogen. He said no, side effects differ from person to person with each pill. But what you describe is very close to what I'm experiencing,
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Timbuktu, I'm with you on this. I don't know what to do if my vision deteriorates as it did on anastrozole. I need to stay on an AI.
I think oncos are probably worn down from hearing about all the SEs. They want you on the drugs, because you need to be on them, but they have few answers for how to combat the SEs. They get flooded and stop "hearing" us. My strategy has become to go to other specialists first to tease out if it is the AI or an unrelated problem. And/or have them come up with a solution.
I first noticed leg/ankle pains when I got my first, and only so far, zometa infusion. It was really intense, but was gone in a few days. Then it returned off and on. I was on anastrozle then. When I took the 2 mo break all symptoms gradually went away. Now on exemestane the leg/ankle is much worse with swelling that was new, and came on almost immediately. On only a month is not enough time to tell if my other SEs will be coming back.
This drug is giving me a good buzz, but ongoing lack of sleep can do the same for anyone. The combination is probably making it worse for you. I too struggle with negative thoughts if my anxiety gets the best of me. Practicing good sleep health is a start. Did you have trouble sleeping before?
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Hi Ladies: I am not on Aromasin but on Letrozole. I had vision issues from the beginning
and talked to my MO about it. He said nothing to do with Letrozole...yeh, right....went to see a specialist who said he has so many patients come in who are on Als and all complaining if vision issues. My vision has become weird, in that without my glasses ,things have become a little blurred, but don't have this issue when they are on. He said I am developing a cataract, very small, but considering my age, 65, not unreasonable and that may have nothing to do with L. My question is , will my eyesight return to normal in four years when I finish taking L......hmmmmm.0 -
Scottiee1 - My guess to your question is no, your vision will not return to what it was 5 years before. There is going to be deteriorization just because we are aging. But adding the estrogen loss from AIs may or may not make it worse. Women have more vision loss than men because of the drop in estrogen at menopause. I might be misremembering here, but I think I read that the drop is the problem, not the actual estrogen level. Though I suspect that some of us may need higher levels of estrogen in our bodies for our eye health than we get on AIs.
My ophthalmologists couldn't find anything wrong with my eyes, not cataracts, macular degeneration, detachments, floaters, etc. Still upon wakening in the night, mornings, and from naps, I could have one or both eyes with blurred vision. In 2 - 8 hours, my vision would improve to normal. Then the same thing would happen again. Went off anastrozole and things gradually returned to normal. Now on exemestane and it's starting again.
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Doxie....thanks for the response.....I am taking lots of supplements plus Goji berries, which are very good for eye health.....as you say, with age there is bound to be deterioration, but as the gals say...BC "the gift that keeps on giving"......lol
PS...I notice you and I have similar dx....and December 29 is the day I discovered my lump....I had a lumpectomy followed by radiation and my Letrozole. Have been taking
L for almost nine months now. Lost a lot of hair, but it is starting to come back, finally.0 -
Scottiee1, Yes, our dx is similar. My PR is really low, @ 5% and treatment was basically the same except I had chemo though due to an oncotype score of 30. My MO delayed the start of AIs until after chemo and radiation. W/o chemo it would have made sense to start it right after surgery.
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I had trouble sleeping before but since the chemo I've been so tired that I've slept for long, long stretches. So this was odd. I didn't take it yesterday and slept until noon today, although I was up a bit during the night. But when I awoke I could not believe how calm I felt. I actually feel HAPPY! Mellow. As though I can just go with the flow today. This is very very different from how I've been this last 2 weeks.
You're right about the Oncos, what can they do? Mine says that the se's will go away if I stick with it but from what I read on these boards it doesn't seem to work that way. I've prepared my pills for the week, one every other day. I'll see how that works out. Maybe I can build a tolerance? Sometimes it's hard to tell what's causing what. When I told the onco that when I went off of the arrimidex I felt so much better emotionally, his nurse said "but it takes 3 to 4 weeks to leave your system". He said, "for the joint problems to leave, not the emotional se's, they go quickly." Sigh...it relieved me to know it wasn't all in my head!
Have you tried antidepressants? My onco at Sloan said I should be on them.
But then they have their own side effects! You know, these drugs are all new. I don't think they really know all of the interactions, all of the long term effects. But they do seem to know that they will prevent recurrence 40-60%
and that IS huge.
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I have read that one side effect of these drugs is cataracts.
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Doxie....my PR is 50% and ER 95%.....oncotype 19 so no chemo for me, for which I am truly grateful.
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I think that chemo is often the cause of cataracts, but the AIs certainly don't help our eye health. I've noticed some blurring lately - like doxie - mine's usually worse in the mornings when I get up and will gradually clear up. I actually had cataracts removed from my eyes about 3 years before bc (I started to get them in my late 40's very young) so I know my problems aren't from cataracts. I need to go to see an eye specialist soon, but I'm just over having tests and procedures done at the moment, so am putting it off - not a great thing to do, I know, but I need a rest :-)
Trish
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Oh ladies---I'm usually by nature a very happy perdon and most of the time I still am--but I know all this chemo, rads and meds have done a number not ony on my body but my mind too. I take (I think ) about 16 different pills a day to conteract SE, but they all have SE and I take a total of over 20 a actual pills a day- In my foggy brain each one is doing something t my body so how can I stay sane? I had a hysterectomy years ago (full) due to cancer, then I had all this--I am so happy when I get a full night sleep of 6 hrs I can't even expkain it--I had one day a couple of weeks ago I felt pretty good and I hugged my dgtr and said it. It was such a good feeling, then the next day everything came back.
My Dgtrs say I'm not but I feel like I'm a bi*ch all the time. My family and friends tell me I'm funny and they love being around me and I don't have a clue why--it has to be their bein nice to me cuz I know I'm not like Inused to be at all. It could be I was always goofy, but I didn't see it then IDK anymore. And of course I need to see an eye Dr. but I'm so busy still seeing all these other Drs. I don't want to see anyone of them anymore. I'm ranting I know, but sometimes we have to--who else will get this insanity we're living thru and my sister who is stage IV I don;t want to compkain to her she has her own fears and hurts, but she deals with them better than I do. Oh well OK I'm done.LOL
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Oh Cammi - you poor love. You are going through so much at the moment, no wonder you feel like you are about to explode! You have a lot on your plate - but to have your sister at stage IV as well - I would go bonkers (((((hugs))))) to you. You can rant all you want, that's what this board is all about. We can hold your hand and understand.
I don't have any solutions for you, but I wanted you to know that I'm thinking of you
Trish
xoxxo
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Thanks Trish--sometimes I just have to scream--I'm much better today--we made cookies and wrapped presents---Of course I always hated doing those things so it didn't feel any different to me.
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(((((Hugs)))) Cami yes we all have to scream from time to time, it helps clear the brain and lungs :-)
Trish
xox0
