Life on aromasin
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I am finishing 5 years of femara(letrozole) in September and my onc wants to switch me to another one. Does anyone know if there is scientific evidence to switch or is this just something the docs came up with. I am thinking of taking a short break off the als to see how i feel physically. Right now struggling with bilateral carpal tunnel and too many arthritis issues to name and feet are just plain worn out according to my foot doctor. It looks like i will have to retire early from my job that i love as a Breast Imaging Specialist and Diagnostic tech. I am not happy about that but will do what i have to.
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My feet starting hurting me at about the 15 month mark on exemestane. Joint pain came rather quickly. Cognitive stuff came after about 6 months and hot flashes are minimal as is hair thinning thankfully. The worst is the joint pain and foot pain after the cognitive stuff imho. I began gaining weight pretty much right away but then again, I slowed my exercise down considerably due to the severe joint pain. HTH those of you who were wondering when certain things come to certain people on this drug. Next in line for me if I can't take it anymore is femara. Ugh!
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proudtospin,
My BC/BS has a $400 co-pay for 30 days of Exemestane. My MO was kind enough to send the RX to a pharmacy in Canada on my request. apparently he has done this many times before. . I now get 90 days of Exemestane made in Great Britain for $390.
Downside of this is I cant claim it at all on insurance. ( still hoards cheaper) and if every in the future there is a class action lawsuit against the pharmaceutical company, I will not be able to participate ( not anticipating sueing anyone).
That's $4,800. a year vs. $1600. a year.
When I was on Femara, that was zero co-pay but I didnt do well on that.
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Elaine,
I take everything just before going to sleep. I never forget to brush my teeth or take out my contacts so the pill container is right there and I dont forget. If its going to make me nausea or dizzy at least I am lying down. It does not cause insomnia for me.
I did nearly drove off the bridge due to hot flashes and night sweats.
Girlfriend, these were nuclear , outer space, turbo charged heat and sweats.
MO put me on 40mg ,Megestrol daily. It killed the SE in about a week.
The SE that is getting me down is bad fatigue. I wake up already tired. I feel old. I feel like someone turned down the dimmer switch of my life spirit.
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RaiderGirl -- Wow about those hot flashes! My MO says that several of her patients just sleep through their night sweats.
The SE that seems to be bothering me now is depression. I feel just like I used to when I was PMSed. (Oh well, at least I don't get cramps anymore!) Anyone in the Aromasin club on antidepressants? What can you take?
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raidergirl, I confess that the small firms I worked for gave me insurance but I never thought it good. I did get through my cancer treatment with no outstanding bills so realize that I was fortunate
I posted my comment above as often folks will post their costs without a comment about their health plan
I do realize now that I chose a good medicare plan but only after a ton of research, best to you
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Thanks girls, I will let you know how I'm doing :-) It's only day 5 at the moment, and all is well lol.
Apparently Femara has hair thinning as one of the ses, so maybe I won't get back to my normal thick hair after all.
And yes - it's fantastic that we have three choices - I'm very thankful for that.
Take care lovely ladies
Trish
xoxo
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Elaine I just started taking Exemastane last week after my doctor switched me from Arimidex due to raising tumor markers. Back in 2010 during my original dx I took Tamoxifen and was already taking Prozac as an antidepressant, I didn't know at the time that Prozac interacts with Tamoxifen and the AIs, when I switched to Arimidex I also switched to Cymbalta 60 mg which is a milder antidepressant that does not interact with the AIs and it has the added benefit of helping with joint pain. Now that I went on Exemastane (aromasin) I checked and Cymbalta does not interact with it. Always check with your doctor though.
Aurora
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Aurora,
Thanks for the info. I will be visiting MO's office tomorrow; I will ask her about Cymbalta.
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For those who have been on aromasin for a while, how long before the SE's wore off, if at all? I started in July of 2013, saw my oncologist in Sept. and told him that I felt great, which I did. Boy what a different story I have to tell him come Monday. The pain is horrible. My feet hurt, I have never had achey feet in my life and they've swollen. I used to wear a 9, now I'm a 9.5. I can't wear heels anymore either, its just too painful. My hands hurt when I squeeze them and hurt when I open them wide. My bones ache. I used to be the girl at the front of the Zumba class doing all the moves and screaming Woot Woot!! Not anymore. I can barely finish the class, I force myself. I am trying to hold out for a year to see if the SE's subside. HELP!! Any advice would be appreciated.0 -
Lonnie, I have a feeling there's no predictable answer. Everyone seems to react differently. Like several others, I switched to Aromasin because of intolerable side effects from Arimidex--stiffness, joint pain to the extreme. I started Aromasin a month before you and never had any ill effects until recently--hair loss, cognitive slowness, joint pain. Frustrating. No telling when SE start; no telling when or if they subside.
And the way things are going, looks as if many of our MO's will want us on AI's for 10 years.
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WaveWhisper I have already decided that I will not take any AIs for 10 years. I cant accept that the effects of these meds are not life shortening. I know women that can barely cross the room from joint pain and I know women that feel no SE at all.
Lonnie713 : You say that you can barely finish you exercise class while others say the only exercise keeps them going. Its enough to make ones head spin.
Flopsy: My MO told me that I was starting AI's at an opportune time becasue when my 5 years are up the 10 year study will be complete. So I would say that your MO is hedging the bet that AIs are beneficial always but he/she does not have a study to prove that.
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Everyone, here is something to think about.
Both in the UK and Sweden there are on going studies of using estrogen to treat breast cancer. Seems that there is a suspicion that in the correct dose ( I believe its very high doses) the progression is slower. These are very new and ongoing studies. I just find it interesting that it is the opposite of AIs Proof that we still dont know anything for sure.
I'd like to know what the SE are for super high doses of estrogen. What...bitchy all the time? Excessive shoe shopping? lol
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Totally frustrating. I am too afraid to not take anything. I will have a long discussion with my MO on Monday about going back to tamoxifen. I was on it for about 6 weeks and had the ooph causing the switch. Thanks ladies.
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RaiderGirl...I saw those UK studies you're referring to. I am having a hard time since stopping HRT (feeling wired and extreme insomnia)...I don't even want to think about starting the AI. What has me puzzled is I was told for my type of bc the recurrence goes up after 10 years. And?????
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Raidergirl, could you provide a citation for the European studies using high doses of estrogen?
Thanks!
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Hi everyone,
I have been on exemestane for almost two months now. I have worse joint pain at the moment (and in more places) than i had on arimidex. Plus some other lovely side effects like SOB and exhaustion. But what is most troubling is that it seems to be throwing me into a dark depressive state. At first I had a day here and a day there where everything just was so awful but now, for instance, i've been home from work "sick" for three days without any good reason other than I can't get out of bed. I take no pleasure in anything and do not do the things I love to dol
I see my MO tomorrow. Any suggestions of how to approach this would be appreciated. This is not acceptable.
Thanks...
JJ
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Lonnie your onc told you that your recurrence risk goes up after 10 years!? Does s/he have studies with a graph to show this? I mean yes there is still risk up to 25 years but the risk doesn't go up for recurrence it goes down.
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JJ,
Aromasin has made me depressed too. My MO just prescribed me Celexa, which she thinks works well with Aromasin. Like most SSRIs, it will take 3-4 weeks to see if Celexa works for me. We shall see..... Best of luck to you!
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JJ - you need drugs - the sooner the better - I was terribly depressed on Arimidex and ended up with Ativan - I still use it occasionally - talk to your MO and get on something - staying in bed for three days just isn't acceptable - I also had SOB on Aromasin which is why I am not on it anymore - I have graduated to Faslodex and so far so good - scans in next few weeks should let me know if it is working - hope so I've run out of options. Good luck to you.
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Lago,Nope, that wasn't me.
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JustJean,I'm sorry that you are feeling depressed. I know the feeling all too well. I have my bouts but not anything longer than a few hrs. I was talking to my husband last night and told him that something has got to give. I don't want to sound like a complainer but a bit of normalcy would be great, being pain free at least. I try to explain my pain to him and he looks at me like a deer in headlights. I have to remind myself that if you aren't going through it, it is hard to comprehend when someone says that their bones hurt. He has been wonderful though.
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Justjean Anastrozole made me depressed. Switched to Exemestane (aromasin) and got anxiety with some depression. I'm on Zoloft and doing fine now. Never had an issue with depression or anxiety before these damn drugs!
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Neither did I!
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Jilly59- Hormone studies,. What was the point, they dont do it here and its all too new. We are like guinea pigs and lab rats. I too feel like sh*t crackers since stopping HRT. I am not sick, I am not in pain its just as if I had a dimmer switch that is turned way down. The reality is , there is nothing to be done. I am told over and over that this will improve. On my negative days I believe it doesnt improve, we just get use to it. On a good day I am hopeful
JustJean I take Wellbutrin XL (generic name Bupropion). I can not take any of the Seratonin Uptake Inhibitors like Effexor. This is a G rated site so I wont give you details, but I had sexual SE and if that wasn't bad enough I had a buzzing in my head that was maddening. Wellbrutrin has been on the market forever. Its my happy pill. You need something. How to approach the MO? Girlfriend he/she hears this a dozen times a day. Just say what you said here.
NotToday - I did not keep the link to the studies but Jilly59 knows what I speak of, perhaps she has them
Lonnie- below is a publication on recurrence. Recurrence at 10 years has dropped since the 1990 to 2%-7%. It use to be 8% to 19% (see study below) The recurrence rate within 5 years is 8%-20% depending on many variables. Interesting enough ER+PR+ has the highest recurrence rate. Recurrence can be in the same area or distant. ( study sited below). Don't fear starting AI's. I know many many women that have few or no SE.
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Hi you all, I am usually on the Diep Flap 2015 site but thought I would come over and see how you all are doing.Yup, these drugs suck. My feet hurt so bad in the morning if I had to run out of the house because of a fire I would be toast !!
and Raider, I have a buzzing in my head that drives me nuts, but no one seems to be able to help me with it. Did your Wellbutrin help with that?
I can't imagine being on this stuff for 10 years.. Some days I feel like I am 90 years old..
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Nottoday...I have also found the data for the UK and Sweden trials using hormone replacement therapy after BC diagnosis. I just googled 'hrt after breast cancer'. There's quite a bit of info there. I also saw where the states picked-up on some of that info (various news sites) and they seem baffled.0 -
Annieb4, I can relate to the foot pain. They huey so bad at the end of the day and sometimes earlier. They Feel Like I've been on them for hours. I switched from arimidex and started aromasin 3 weeks ago. I'm starting to lose some words. The brain fog was really bad in arimidex, I'm really hoping it won't be as bad.
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Below are just a few of the links out there about HRT after BC diagnosis. The consensus in the US (and abroad) is that more research needs to be done. I did read a few articles where they make some concessions for Stage IV, but for now of course, standard of care in the US is an emphatic no to HRT.
http://www.breastcancerchoices.org/hrt.html
http://www.medicinenet.com/script/main/art.asp?articlekey=17259
http://m.jnci.oxfordjournals.org/content/93/10/733.long
http://www.ncbi.nlm.nih.gov/pubmed/22892060
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