Life on aromasin
Comments
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I hadn't read all the side effects for exemestane (aromisin) until just now - I think I have most of them - I think that 20-30+% on some of them is pretty darn high - no wonder I feel like crap most of the time
But they really decrease my risk of recurrence by a lot - so what can you do? 
I'm going to figure the best way to get through the next few years, deal with the side effects, and stay on the medication! 
Merry Christmas all! We just had a amazing few days with all of our children and grandchildren - now my DH and I have tomorrow alone, looking forward to the quiet.
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Linda I remembered when I started and did actually read the SE thinking this is rediculous--and sure enough got most of them too, But I too made my decision to stick it out too, so here we are. LOL
U sound happy right now and that's wonderful--I'm staying quiet tonite cuz romorrow is a bi day and I honesly did think I could do 2 bi days, so I chose tomorrow and I oo am looking forward ro it--Have a wonderful Christmas with u'r husband.
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Thanks Camille - I hope you have a blessed day.
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Merry Christmas to all my "sisters" and may the New Year bring health and happiness
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Unfortunately I think we have to many "sisters" but we're here. And I wish a blessed day for everyone and much love all around u.
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Linda, I have been on the aromasin for 4 years this week. yeah for 4 years. Hoping to only do one more but will see.
I don't know that I can ID any side effects to the aromasin, sort of think I may not know till I end it. crazy but best not to be too worried on the side effects
any happy holiday to all
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Hey ladies - just checking in - Well....the past 2 months ive had so many SEs, i had to make a very long list of them and call my Oncologist today. Everthing from insomnia so bad I was only getting 2-4hrs a night, to headaches, heart palpitations, joint pain that was pretty bad, fatigue, depression, i could go on..... She wasnt in today, but her NP told me to stop taking it and they want me to come back in in two weeks. Not sure what will happen then, but Im glad. There was no way I could do 5 years, let alone another month. I had an appt tomorrow with my ND - to find out what I could take to combat the SEs, but when i wrote the list out, I realized it was just too much. I will be making another appt with her to find out how to keep the estrogen out of my body naturally thru diet and nutrition. Until then, Im looking forward to feeling better, i hope its soon
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I've had most of the side effects too. Please let us know what they say!
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I will!
I will say that when she told me what she was going to give me.....she stated that 40% of patients have some kind of SEs.....most of them mild. I told her if I had SEs that were severe, what would she recommend? She said she would tell me to go off of them. Thats it. Now, before starting them, I researched and found out that Aromasin has not beed offically approved for DCIS patients, but its coming. I questioned my doctor when I found this info, and she sent me the latest literature on it right away....0 -
Shayne there's a couple of other AI's that you can try. I started on Arimidex and couldn't stay on it because of the severe se's. Aromasin is kind to me, but Arimidex was a b*!ch. You might find that Arimidex or Femera will suit you better. You can only try.
Trish
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My friend, who goes to the same Onc, just told me that the doc had her go off the AI she was on for two weeks, then start again. She said doing that made the SEs not as severe.
Right now - I kinda just want to be done. Maybe ill feel differently in two weeks. Im just looking forward to feeling better than i do right now..... Its been really bad.....I think my husband was seriously considering leaving me....
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Shayne - ask your MO how much difference the AI's make for you in preventing recurrence. That should help you decide whether or not to stay on them, you could also change to Tamoxifen instead, my MO suggested that, but at my stage of BC there is a big enough difference between the AI's and Tamox that I'm choosing to stay on the AI.
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My onc said the Ai's cut recurrence by 40% so I should really stay on them. I've read elsewhere that it's a 60% cut in recurrence. Either way, it's huge.
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but if you have surgery and rads that bring you to 5%...... is it worth it?
If you cant take care of your family, participate in life or a marriage......are in pain.......is it worth it?
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Shane, you're different from those of us with more advanced bc. <1 cm. DCIS has got to have a very low recurrence rate to begin with. If you add rads and surgery to the mix it must be practically zero. But I don't know. Cancer Math doesn't rate Stage 0. I'm doing fine with Aromasin now, but if I were in your boots I'd seriously look at QoL over a miniscule advantage.
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yep.....doing a lot of thinking in the next two weeks before my appt. I had heart palpitations so bad last night! And Ive been off the med since wednesday.
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Even the 40-60% decrease in risk can be misleading - if you have 5% risk of recurrence and you cut it in half then you have a 2.5% risk, but if you have a 40% risk of recurrence and it cuts it to 20%, so QOL is important, and knowing, at least as much as we can, how much the risk truly is. For me it's more like the 40/20%, so I'm willing to work on taking it even though it does cause me significant SE's. Can't say the same if it only made a couple % difference.
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I've done better on the Aromasin than Arimidex. I think with any AI it's about finding what works for you at that time. My pathology showed I was 94% ER +, so I feel it's not an option for me to quit completely. but... Quality of life is important. Shayne... The reason I switched was similar to yours. I was depressed, crabby, weepy and generally no fun in addition to joint aches. I took a 2 week vacation and felt better within a few days. Now, it may all be psychosomatic and all in my head, but even if it is, I feel better on the new med. My onc said in his experience, it's not unusual for patients to switch. He would rather switch me and try something else than risk me not taking anything ( again... In my particular case). Good luck as you work this out.
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GottaloveNed - how long were you on it?
Im wondering when the symptoms will stop. THey are still full on. My husband is worried about me stopping, even tho I think it was getting impossible to live with me. I was 100% er/pr +
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I don't think it's in our heads. When I told my onco how my mood improved within days of being off anything the nurse said "it takes 2 weeks to get over it". The onco interrupted and said "The joint pain takes longer to go away but the mood improvement is only days." When I was on arrimidex I couldn't stop crying and I'm not normally a crier. I didn't know what was going on. The drs just shook their heads and said "it's the arrimidex". I went off of it and it was as though I had shut a faucet. The crying just stopped!
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Timbuktu are u on aromasin now?
Shayne I would never try to tell u what to do cuz I don't know. I've stayed on aromisin even tho I hate it, my Onc did say next time I come in we'll talk about it so I should think about it. so I don't know either, but I'm really not crabby, I just have physical SE my mood is usually the same, I'm very laid back and that hasn't changed. But I wanted to address u'r heart palpatations did it last long/ or just a bit, cuz I know that happens just cuz it happens sometimes. Is that the only time u got that. U know right now u have an anxious feeling about u so it can happen to u easily.
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The heart palpitations have been happening the past month or two. They usually last like a 30-60secs. One here, one there. Maybe like once a week, twice a week sometimes. The other night it was several in a row. My heart just speeds up and hurts. Scary.
I was rereading this thread from the beginning....and several people who went off of it said the symptoms got worse before they went away. Thats what is happening now. I dont have the anxiety attacks (i think that was triggered by the passing of my friend with BC) but the joint pain is definitely worse, and the mood swings. I think I have felt bad the past 3 months, and it was gradually getting worse. Im not one to complain, so I just kept it to myself. Since xmas, its been bad, so bad its unbearable. I was in this fear place of thinking I had to take it. Now Im realizing im taking something that could be hurting me, makes me feel horrible......and I havent been participating in my life, doing the things i love - or even being with my family or friends. Thats not living....
2 weeks - cant wait for this to be over......
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Shayne - I took Femara for six months before chemo/rads and the knee pain was unbearable. I have been on Aromasin for 10 months. The knee/joint pain is decreasing - I still have some arthritis pain but the joint pain for Aromasin is almost gone.
Every 2-3 weeks I have difficulty sleeping and I take generic benadryl (1-2) to get me back on track. Been repeating this routine for 10 months.
Depression - my MO put me on a low dose of Paxil and life is good again. I have Ativan as backup if needed but haven't used it.
I didn't have headaches or heart palps - my heart seems to be happy through all this stuff.
Better living through chemistry. If a pill helps, I'll take it. I did get rid of any over the counter stuff not prescribed by my docs. Just cleaned out that cupboard and scaled down to only doc recommended/prescribed stuff.
MO told me I'd be on AI's for 'a very long time' which I take to be the rest of my useful life
. I am ER+ at 100% so AI's are my drug of choice for fighting this stuff.All that to say - it is about quality of life. If the knee pain wasn't decreasing, if there weren't meds for depression, if benadryl didn't work for sleep then I would be considering whether to continue Aromasin or try another one.
Good luck to you.
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cami, yes, I'm on aromasin now. I took a little break and felt great and it's been 2 weeks since I'm back on. The joint aches are nowhere near the arrimidex but it took months for the arrimidex to get unbearable. It's so hard to tell what's causing what, isn't it? I'm not crying anymore and haven't since going off of the arrimidex. But depression is always right on my shoulder. There are so many reasons for me to be depressed it would almost seem unnatural not to be.
But can I swear the aromasin isn't contributing? No.
The Insomnia is there but it's balanced by such fatigue that I have to take a daily nap.
The trigger finger is back.
In general, at least so far, this is the easiest one to tolerate.
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Shayne - you should tell your doc about the palpitations!!!
Also, I would recommend getting your thyroid checked, mine was all over the board for a while, but seems to have leveled out now, though I think that I may be hypo again, but anyway, it can cause palpitations too. And I've met several women who had thyroid issues develop going through these treatments.
I figure that staying on the AI's will help lower my risk of recurrence, and if I did get a recurrence, they would start by putting me on the same drug anyway - so does that make me a couple steps ahead of the game?
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I just had a full blood workup a few months ago - all was normal
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I spoke to my onco about the palpitations. We're guessing that since the main side effect of menopause, for me, was palpitations, the drop in estrogen from Aromasin is causing the same effect. They eventually went away with menopause so I'm hoping that my body will get used to the low estrogen now and the palpitations will stop.
At the moment i'm very itchy. head to toe. I've been getting this lately and haven't thought about the aromasin.
I switched shampoos, to Pantene, so maybe that's it. I'm so prone to allergies! I'll have try another shampoo and see if this goes away.
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Shayne, I was on Arimidex for about 18 months, but the last 6-12 months, I kept getting increasingly worse. I thought it was just my class at school. I had a very challenging year last year, but when summer came and I was still crabby abut everything, I realized it's more. Then the weeping started, for the stupidest things. So I started reading these boards and looking into it. I went off Arimidex in Sept., waited 3 weeks and started the Aromasin. I've been thinking about an anti-depressant over the last 6 months or so, and I talked to my onc about it. I started taking Zoloft in Dec. That has helped with my general "hermitness" and disinterest. I do feel more like myself, although I don't know if I remember what before breast cancer felt like. I'm also dealing with significant lymphedema, so my last 4 years have been a roller coaster of sucky breast cancer fallout and side effects. So, in my experience, it's worth trying other medications options.
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dont think ill ever be able to remember my pre-dx self....
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If all i had to combat was depression....I would try another one. But the SE list was too long - much too long to take pills for each ailment so i can take one pill that may or may not help me not have a recurrence..... Thats what made me realize i needed to stop - writing out the list of SEs.....too numerous
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