Life on aromasin
Comments
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Thanks lago - my primary care does manage most of my side effects, and we did talk about the heart issues last visit, I'm on my 2nd PCP, my other one left the practice just after I got her trained, but my newer one is awesome too, and is so willing to learn along with me. I was just pissed at my MO's response - he's just happy that I don't have cancer. I've certainly taught my PCP"s a lot about long term side effects of BC treatment.
Also, for those of you that have taken a break from the AI's, how soon did SE's come back, if they did come back. I've only been back on the AI for a week now, and I swear my pain is increasing already. The pain that went away while I was off the meds is the pain I seem to be feeling again.
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Lynda I was switched from tamoxifen to exemestane due to SE's of tamoxifen.
For TWO DAYS after the switch I felt like myself again.
The main manifestation of this was I felt normal sexual desire, if I thought about sex I could feel the response in my body. I had not felt like this in 3 years so it was dramatic - I really noticed. I was not imagining it. I woke up the first morning after the switch and literally thought "wow, I feel like myself again".
My reading of this is that it took 2 days for the switch from oestregen blockers to aromatase inhibiters (effectively oestregen-stoppers) to kick in.
Point of all of this is - they kick in pretty fast. I don't think you are imagining it that the pain has come back that quickly.These things kick in pretty fast.
Hope you can get some relief for the pain. XXX
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LindaKR, I think you are well within your rights to fire your MO and find another. I always look at my medical team as though I'd look at a home remodel job. I'm the general contractor--I know what I need, know the results I want, and what the remodel should look like, but I"m not an electrician or framer and have to hire those experts to provide that service. Your MO is not providing you the service you are paying them for, so your right as a customer and "boss" is decline any further payment for poor service.
But when you fire them, you should set up a meeting, go in with your list of complaints, and let them calmly know why. It's therapeutic for you, and could be very important knowledge for them.
Good luck whatever you do. Oftentimes I think we are simply dismissed more because we are women--a sexist but very real attitude from many medical personnel--you know, "go home dearie, eat balanced meals and get enough exercise....and don't come back with any more issues because I'm too busy and important to try to help you anymore". Ad nauseum.
Claire in AZ
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Wonder if the fact that my OC is a women - she is most understanding on my decision to stop taking exemestane and not to take any meds. In fact I find she is also concerned with my personal life as well as my medical life. On the other hand, my Ro seems only to go on and on with medical terminology since the day I met her!0
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Nope. My MO is a female and doesn't want me to quit. My female PCP understands my issues though. Many of her other patients have
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I don't want to sound stupid, but what is considered weight bearing exercises? And which ones should I be doing?
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Weight bearing exercise is any where you are bearing your weight while moving. Walking, jogging, stairmaster, dancing, etc. qualify. Also weight training. Biking, swimming, yoga and the like don't. Hoping this makes sense. Love, Jean
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Ironically lots of cyclers suffer from osteoporosis. Bike riding isn't weight bearing as Jean said
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Just a qualifier: most yoga practices aren't considered weight bearing except Bikram yoga, where you hold 26 hatha poses over 1.5 hours twice--each pose is held the first time for a min, the second go-round for 30 sec. Try holding triangle pose once on each side for a minute each and see if your muscles aren't trembling at the end. Awkward pose is a killer. Here's a link if you've never heard of this type of yoga practiced in heat and humidity. http://bikramyogabethesda.com/what-is-bikram/26-postures/
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I've been on aromasin for 6 weeks now and had my routine meeting with my MO. I've been following this thread all along to get a jump on what I need to know. He told me that some of his patients have no SEs, some have one or two and some really unlucky ones get all of them. He also told me that most SEs show up fairly early and that at 6 weeks if I'm doing OK I can anticipate managing this well. The on;y problem I do have is insomnia and I did expect that to improve but so far nothing. He prescribed sleeping pills that I'll use only when it's really bad. He also said that for many women the weight gain is water retention and lasix should help with that. He believes that women who have excessive weight gain (20, 30 lbs.) likely have other stuff going on as well and may be eating more and exercising less.
I have a few habits I plan to continue. I've always taken lots of EFA and flax seed. I also take biotin and LIQUID silica. I started when I used cold caps to avoid hair loss during chemo and highly recommend it for anyone concerned about hair loss. Exercise is running, cross training, weight lifting, stretching and balancing.
From what I've read here, many had side effects begin to show up much later. My BS said takes about a year to notice hair thinning. I imagine there are individual differences.
I hope everyone has a healthy, happy holiday season!
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Does anyone know when it is time to end Aromasin do you just stop taking it or taper off?I am at the end of taking it in 3 more months:)
Merry Christmas to all of you and Peace in the New Year!
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woohey that is so great to have the end in sight !
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One help with insomnia is taking a Benadryl tablet. Takes the edge off and makes you drowsy. Not addictive. i was told everyone should have a packet of Benadryl available esp for allergic reactions. Just a hint.0
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walley Ask your MO or pharmacist. I know when I stopped Arimidex I did not have to taper off.
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My experience is that you do not have to taper off arimidex. I stopped because of allergic reaction then after months stopped taking letrozole - but did have a respite for a month before trying exemestane. Different opinions I'm sure.0
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Hi walley, a member of BCO named Proudtospin said she wished that she tapered rather than going cold turkey as she did have some "weird" side effects if I remember correctly. She had been on the drug for five years and finished what her doctor thought she needed in terms of length of time. I think she experienced headaches maybe? Not sure as it was a while ago. You might want to PM her.
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WarriorWoman---When I started Tamoxifen I had issues with insomnia as well so I went to my holistic doc and asked him what I could do. He suggested a tiny dose of melatonin of 0.3mg each night. This is a very small dose and hard to find. I bought mine off Amazon. He said to only take it for a couple or three months till I had found my sleep routine. I quit taking it after about 3 months and never looked back. It made me fall asleep quickly and actually stay asleep for most of the night. When I stopped, I made sure I kept the same routine. He said he doesn't like people to take melatonin for long periods as they don't know how it can affect you but my mom has been taking this same tiny dose for years with no problems. He also likes people to start with smallest dose possible and work up if need be. Too large of a dose can cause the opposite effect. Anyway, thought this could be something to try if you haven't already!
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Thanks everyone for your replies.Merry Christmas and a Happy New Year!!!
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Happy Holidays to all of us dealing with the SEs of Aromasin!
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Happy Christmas to you too Leslienva! XXX
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Interesting that someone had headaches when they went off the exemestane cold turkey - I stopped it cold turkey for about 7 weeks, pretty much had a headache everyday, didn't put the two together. I went back on it and within 5 days my pain started back up, but now that you mention it, I haven't really had a headache. I did start claritin a week or so after I started having the pain return and I noticed that it seems to be helping the pain. Maybe that's my magic bullet.
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Hi everyone.
I have been having a real problem with secondary insomnia. I never slept well to begin with, but now I have dropped from 6 - 6.5 hrs/night to 5 hours, and that just isn't enough. I see that Exemestane can cause insomnia, so last weekend I switched from taking it before bed to first thing in the morning. I think my sleep is a bit better, but now I am excessively fatigued in the morning. How can a drug cause both insomnia and fatigue?! I see both listed as side effects, but I never thought a drug could cause both insomnia and fatigue in the same person. Does anyone have any ideas? My pharmacist is stumped.
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How long have you been on it? Maybe give it a little more time with the morning tim
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Thanks, Iago. I will definitely give it another week, but I do find it odd
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That's interesting. I just assumed my insomnia was due to low estrogen and anxiety. I usually take my Aromasin at 5pm, but I'm going to try switching to the morning. Did you start any other new medications lately? I recently started Wellbutrin and that's really thrown off my sleep cycle. I have SAD so that's the main reason it was prescribed, but I'm also using a lightbox to try to wake up during these dark winter mornings.
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I have been on Aromasin for a couple of months and the insomnia is the most glaring side effect I am experiencing. I do take it in the morning. It started very shortly after starting on Aromasin and after 6 weeks of sleeping only a couple hours a night and a total inability to nap, I complained to my MO and was prescribed sleeping pills. My concern with medication to sleep is developing a tolerance and dependence. However, for the time being I am getting a good night's sleep.
I've been watching my hair and it may be thinning but I'm not certain. It feels more brittle when I brush it and my scalp itches more. My surgeon says it becomes noticeable in a year while my MO said it is detected shortly after starting on Aromasin.
I see my MO in a couple days. I'm also concerned about a tightness in my chest. That cannot be good.
I hope everyone is having a healthy start to 2016.
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Best wishes to you WW! I hope you get good value from your MO visit. Remember you have been through a lot of surgery and much of it very recent. My MO told me nerves try to regenerate etc and there can be lots of strange feelings (and I haven't had all the recon surgery that you have been through). I hope he will find that what you are feeling in your chest is benign SE's from the bruising "wars" you have been through. XXX
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Thank you Feeling Feline. I don't think the tightness is from the surgeries. It may just be mild heartburn. I'll get it checked out.
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I have sleep issues too, but have had since dx and even before, so I can't blame the AI...just now. I've always been a light sleeper and a type A personality, so when I do wake, my mind often ramps up from 0 to 60 in a minute or two--then I can't get back to sleep. Going to sleep isn't a problem, it's the "staying" that I struggle with. I do use Advil PM and half a .25 xanax when it's really bad, and have been experimenting with L-theanine, which is an amino acid and apparently has good results for tx anxiety (my particular issue).
Claire
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Me too - I've had terrible insomnia ever since my diagnosis. Nighttime seems to be the worst for me as far as anxiety and ruminations. I think it almost became like a habit - this tendency to worry and replay everything in my head at night. I've always had problems falling asleep. I've been taking Xanax mainly because I've been going through a rough patch. DH was diagnosed with cancer last summer and I've been his full time caregiver during a rough recovery. My nurse said I shouldn't be taking xanax for sleep, but I don't see what difference it makes if I take it during the day or at night. It's anxiety no matter what. I'm sure they won't refill my RX this time and will suggest sleeping pills instead. I don't like the idea, but don't know what else to do.
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