Life on aromasin
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Rads can cause LE even if you don't have nodes removed. If you have nodes removed of course you are at risk. Both you have increased risk.
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Ugh...thanks Lago, Proud and Doxie...nice to know this. So, should I avoid blood drawn on my lumpectomy side and blood pressure cuff there? I am guessing I should?
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April, nobody told me about blood pressures and blood draws on that arm either. Shortly after surgery, my surgeon's nurse was taking my blood pressure and said something about "not taking and chances." I didn't know what the issue was until I started reading posts here. Now I always tell them to use the non-lumpectomied arm.
I'm not sure about my switch to this drug. Some of the pains from arimidex seem to be getting better (possibly because I'm going to PT), but I have a new knee issue and, even worse, a voracious appetite. Anybody else?
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Brookside, my appetite is UNREAL since I began taking this drug. It is almost as though I have such low energy that I try to find something that will give me some and usually I am reaching for food. I try hard to weigh and measure everything but I am so hungry that I find myself cheating...ugh!
I had lost a lot of weight on WW prior to my diagnosis and between stress eating and this drug, have gained almost all of it back. I am so sad about that. As for exercise, the pain is so bad in my joints, that exercise is difficult for me at best and impossible most of the time. I feel so crummy and I am about ready to try femara (in Novemeber when I run out of these pills and that is my next MO visit) even though I have heard terrible things about that drug too...sigh. If I was not so HIGHLY ER/PR+, I would skip this stuff altogether.
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april485 I have 10 nodes on the LE side and 4 nodes on the non-LE side. No one touches my LE side. I usually have BP in my leg but sometimes it registers too high (because they don't know how to do it right). I occasionally let them do it on my 4 node side but only with a manual. The machines put too much pressure. Twice I have had a blood draw in the 4 node side. I don't let them use the tourniquet but I have really good veins. Note that I have to fight for all of this.
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i was doing someresearch and look what I found
http://www.askapatient.com/viewrating.asp?drug=20753&name=AROMASIN
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Lily55 many of those SE are what I experienced on Anastrozole and that's why I switched to Exemestane (generic Aromasin). So far I'm doing great. Been over 3 months now.
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Lily - I had most of those se's on Arimidex - for me Aromasin is so much gentler on me. I get some muscle and joint soreness, but nowhere near as bad as on Arimidex and on Aromasin I have my brain back! Yay! It went missing altogether on Arimidex.
Everyone tolerates different drugs differently - what is good for one woman is a nightmare for another. I've been on Aromasin for just over two years now.
Trish
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I've run through a wide range of SEs on both Arimidex and Aromasin. Some severe and some not. Nearing 2 years on Aromasin now, things have rather mellowed out. Except for those specifically related to the inescapable low estrogen environment of our bodies, like a dry vaginal area, I feel fairly normal for my age. Or as I would expect myself to be at my age nearing 60 w/o having had cancer.
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Reading those reviews was just like reading what I would write in many instances. ugh...wish I was having an easier time. The foot pain is really bad lately. When I see my MO in November, going to have to make the switch to femara...not looking forward to trying another AI at all, especially one that has more reported side effects than aromasin has! But, it might be ok for me, so that is what I will do. Can't stop all meds for blocking estrogen with such a highly positive estrogen level.
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april, our diagnosis looks similar, I started on femara but went over to aromasin after 18 months or so, try what you need to get through the dang time so you can be part of those who have finished the dang pill
yeah, my feet hurt!
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My feet did hurt but they have stopped, for me its the never ending fatigue, joint pains (although still a lot less than on Femara), sleep disruption, problems in my eye (3 weeks of abscess inside lower eyelid), and now depression and feeling so disconnected to the world ...........and just not feeling like myself, there´s loads of other symptoms too like seriously dry nose, but the worst are the constant exhaustion, lack of joy in life and never ever feeling refreshed.
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lily, if you have really dry nose, have you tried the simply saline? it is a nasal spray that my ENT has me using to keep my nose clear. It is only saline but it has a spray that cleans out the nose
I use it several times a day and for me it helps to prevent congestion issues
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I'm new to this thread. Was just in for a follow up and after I listed some of my symptoms - joint pain, hot flashes, moodiness, insomnia, depression, anxiety, etc., we ended up talking mostly about depression and exercise. It's so hard to figure out the culprit - is it due to lack of estrogen or am I now going through the phase where after treatment is over, depression sets in. I had depression before this, so that's why we had "the talk" about seeing a therapist and going on antidepressants. Those meds are supposed to help with hot flashes and sleep, so I'm willing to try it. Can't be any worse than what I feel like now. Some days are better than others. For a long time I thought I was escaping the dreaded joint pain from AI's, but it seems to be getting worse. I'm trying to walk everyday even though my feet hurt - I push through the pain. It's not as bad as with Arimidex, just hoping it doesn't get worse.
Anyone else here on Lexapro?
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Exercise does help with the joint pains for sure but there are still some days when I am just too stiff to even get out of a chair easily........I make myself and then it gets better.....
Yes I´ve tried the saline spray, even the special sea salt one too over here, makes no difference other than immediately at the time I´m spraying it.............
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Hi, bc! Welcome to this thread, so many wonderful ladies here who are knowledgeable, encouraging and supportive!! I took Lexapro when I was going through active treatment, but found I did not need it later on! It did help me tremendously!! I am finding now that exercise helps with my anxiety and depression!! Hope that helps!!!
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lily, I spray, then blow my nose to get out whatever is there and spray again! doc told me to use it 4 times a day, wish this would work for you~!~
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Lily - it might be worth trying another AI. I gather you've been on Femara - but what about Arimidex? Some women find Arimidex a nightmare, and others think it's the best thing since sliced bread. You may react to it positively, or at least better than Femara or Aromasin.
It can't hurt to try, and if it's worse you can always switch back to Aromasin if it's easier. I think there's another AI too - but not used extensively yet, I can't remember it's name though.
Trish
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Thanks TRish, the Onc told me that if I had reacted really badly to Femara then I would most likely be the same with Arimidex as they worked in similar ways, hence why he put me on Aromasin...but this was an Onc in another country who I paid to see who listens and is open to hearing about side effects. My regular Oncologist, is not so open minded but I will be very emphatic with him......my personal theory is that those of us who were very ER positive feel it more when we are deprived of oestrogen as we are used to higher levels of circulating hormone....
Femara was a lot worse than Aromasin, I am thinking a holiday may be in order, I have already started skipping days which is not good but its what i did with Femara towards the end as I jsut cannot bring myself to take things that make me feel so awful.........I feel like a right negative moaner but right now I feel beaten on many levels......
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Lily you aren't a moaner - these drugs react so badly with some of us. I can put up with the stiffness, at least once I start moving again it gets better. But if you are having depression,that's not good. It will affect your whole body and make life harder than it needs to be.
I've taken a couple of "mini holidays" with Aromasin, but like you I'm highly ER+ and need the drug to help my chances of not recurring as much as possible. I wouldn't put up with depression though.My onc wouldn't believe that Arimidex could cause all the horrible se's that I had. The difference when moving to Aromasin was so pronounced though that I think I made him think more about it.
I would try all the AIs to find one that suits my body best. If they all caused depression though, I'd really have to think about quality of life. There's a point when you have to question if staying alive and feeling like a zombie or being so miserable is really living. I haven't gotten to that point, and I really hope I never do. But we each have to make those decisions for ourselves. A stage IV dx because an AI wasn't working and I'd stopped taking it .. I really don't know how I'd react to that.
Know that you are thought of, and sending you ((((hugs)))
Trish
xoxoxo
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thank you Trish, you sum up the dilemma perfectly.....xx
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Thanks Kindergarten - I was afraid to take anything after reading that antidepressants reduce the effectiveness of Tamoxifen, but apparently that isn't the case with any of the AI's. I'm also planning on exercising more regularly.
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Lily, I also have really bad dry nose, so bad it aches and wakes me up at night. I often have to cover my nose and eyes with a wet washcloth and take Tylenol. Now I use a portable humidifer by the bed and that is working. I also use saline every night.
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Hi All,
Thanks for this thread and all the advice/conversation. I have been off the boards for a while, but value the collective wisdom here. It is good to check in and hear what you all have to say. I am 4 years into AI now and managing reasonably well. I have had/have many of the symptoms folks talked about here: the blues, killer feet, dry eye etc. The worst is the stiffness and "feeling old" part. However, I do take whatever drugs I need to keep moving and staying positive. My close friend who had bc before me, gave me advice that stuck when she said to treat the psychological side of the disease as well as the physical side. I have my share of pain pills, anti-anxiety pills and sleeping pills. I am careful not to increase my dose or taken them all together. But when I am going through a bad patch, - when I am physically in pain, can't sleep and starting to get depressed/freak out, I use them. They help me re-group and re-gain my footing. Then I start to relax again and go about my life.
I really appreciate knowing that I am not alone with all these symptoms coming and going. Gives me strength to hear your stories.
Be well!
Beau
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Hi, bc, truly, I believe in doing or taking whatever it takes to make you feel better! Just dealing with this disease takes a toll on us!! For some reason, the antidepressants just
don't agree with me!! I hope you feel better soon!!
Hi, Beau, your friend had great advice!! I love your positive attitude about regaining your footing!!! Yes, so glad we can share our stories and symptoms!!!
I was talked into taking my aromasin for 10 years by my onc!!! I have one more year to go!!
Hugs to you all!!!
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Beau - I so agree about treating the psychological side. I think docs are really paying attention to that, too, as they should. The feeling old and creaky part has forced me to get up out of my chair and exercise. I think it helps with the laundry list of all those other symptoms (insomnia, moodiness, etc). Plus I have osteoporosis so I need to make sure I get out everyday to "pound my bones."
Kathy - It's so great to hear from someone who is 9 years out with Aromasin! It really gives me hope that this drug is doable. I believe it is so very essential to my overall survival. Many docs have told me it's the single, most powerful defense against a recurrence. I know....preaching to the choir here. I had been reading that the standard of care might switch from 5 to 10 years for AI's, so that's probably where I'm headed, too.
Has anyone tried acupuncture for joint pain or other symptoms?
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I am thinking of taking 5HTP for emotional side has anyone else done this? Many seem to come with vitamin B6 and I am sure that is bad for us? I need to do something as am tired of feeling weary and tired!
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When my oncologist said something about taking aromasin for 10 years, I said "I will take all ten, please" Just hoping it keeps me stage 3 and not slip into 4.
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I made the switch from Arimidex to Aromasin on 8/1. At first I thought it was great. At least I don't have the depression that I had on Arimidex, but I have lots of foot pain. I have 2 Neuromas in my left foot as a result of foot/ankle surgery in May, so I expect the pain in that foot, but now the sole of my right foot is really sore too. I don't want to jump to blaming every ache and pain on these drugs, but I didn't have the problem until a couple weeks after starting the Aromasin. I really need to get my feet in working order again so I can start walking again!
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Bren I didn't realize you made the switch too. So far Exemestane is soooo much better than Anastrozole. That depression and back/neck/shoulder pain was not doable for me. I have none of that now. Sleep issues much better too. I will not go back to Anastrozole.
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