Life on aromasin
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Hi. Thanks runrcrb, and yes I am still having trouble sleeping. I do take it in the morning, so thinking maybe trying mj. I do sleep, but I just feel like it's not a deep, dreaming sleep, ya know? I just don't feel rested. I tried Ambien once, my husband's Rx, but it did nothing.
Anna-33, I eventually had such bad joint pain in my knees with Anastrozole after 7 mos. that I could hardly walk. MO switched me to Letrozole and I got 17 mos. on it before MO switched me to Exemestane. I've been on it since April and I feel much better than I did on the Letrozole at the end, but I do still have joint pain mostly in my knees and fingers.Guess it's still too early to know if it'll get worse. I already had osteoarthritis and I think the estrogen depletion just exacerbates it. Good luck to you.
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I take my aromasin at night because i personally found it increased my appetite when I take it during the day. I also feel that my sleep is not deep and restful. I remember dreaming so much more on this drug. I haven't tried any sleep aids. I like this drug way better than Arimidex that I was on. I had terrible joint pain with that one and none with aromasin. Vaginal atrophy Is bad because of the age and drug double whammy! I'm working with a sensitive gyno for problems on that end
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Hi Ladies, i was on letrozole which bothered by knees, now on exemestane which bothers my hands. I am trying to find supplements which would help and have seen some anecdotal references on the posts: Evening primrose oil, cod liver oil, glucosamine, Hyaluronic acid, green tea, magnesium, turmeric (with black pepper); changing manufacturers of the meds and changing the time of day you take the meds. I am working my way through the list, but one thing I have not seen is dosage and that can make all the difference. Any advice for what worked out there?
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took both you were on but had terrible side effects. Time of day made no difference with me. Don't take any supplements without oncologist approval. Tell the doc everything. I had something to help with depression and sleep but nothing for pain but that was in 2012-2014. Took myself off 2014 . 2018Have metastatic BC now in lowered back. Back on letrozole with other meds to try to stop it. Try to stick it out. Hugs and good luck.
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Dang Jo -so sorry. I totally agree share all your symptoms with your doctor. They don’t know unless you tell them and there are a number of different meds to try. I was blessed not to have serious side effects with Tamoxifen. My MO took me off them when I hit the 5 year mark.
I have a friend who took Arimidex and Tamoxifen but had debilitating side effects with both. They stopped both of them. She is 10 years out now.
Dian
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Thanks so much for the reply Jo. Though i am so sorry to hear its back its good to have people telling me to tough it out. I still think there must be some things out there that help and we ladies have to figure it out. Nobody is going to spend money on a clinical trial on green tea etc. since they can't make money on it.
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I have found tumeric with black pepper to really help the joint pain. You can also try taking Claritin.
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To avoid SEs, I take 1/2 pill a day. Baby aspirin at night helps prevent hand pain. Long walks every day + yoga twice a week. Have been mostly SE free!
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lmurphy, did you ever take a full pill? Did you come up with the dosing, or your dr?
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My oncologist suggested that I try drinking a daily glass of tart cherry juice. He said some women find that it helps with the joint pain, others don't. Turns out, I don't, but it was worth a try (even though I hated the taste).
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Hi 2FUN: The one-size-fits-all pill is too much for me (I weigh 101 lbs). A few hours after taking Aromasin, I became immobile with excruciating hip, shoulder and knee pain. Doc and I lowered dose and all was...better. The rapidity of SEs led us to believe this was a toxicity effect. I've decided to stick with Aromasin because it is the more natural drug, but if taking this has deleterious effects on my lipids, BP and/or bones, I will consider changing and adjusting dose to new drug accordingly. There are many manufacturers of exemestane and some are better than others with regards to SEs; for me, so far, Greenstone brand best, West-Ward least. As I'm going to be on this pill for at least 5 years, the pro-active research (on myself) to find least painful and effective way to take this drug has been worthwhile.
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Thanks that is really helpful. But why do you say aromasin is "more natural"?
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I'm new to this discussion, having only been on Aromasin since July. I apologize if my question has been answered previously but I'm wondering if I'm the only person whose hot flashes have become more or less one continual heat wave?
I had regular hot flashes on anastrozole (they started every evening & continued throughout the night) but they were not as bad as the worst of the ones I had during menopause. Now, however, I am hot almost all the time!
In addition, when I begin to sweat (particularly during a workout) I sweat A LOT (more than ever before) & it doesn't stop when I quit exercising. I've even shown signs of mild dehydration after exercise, even though I drink lots of water.
To be honest, my current overheated state is still preferable to living with the SEs I had on anastrozole. I would, however, still appreciate advice on ways to cool down. My MO is pushing me to try Effexor but I'd rather not add another medication to my current list. Has anyone else experienced this &, if so, have you found anything that helps? Thanks in advance!
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Hi Notthrilled: In my mind, I think exemestane is more natural only because it is the only AI that is a steroid.
JKL, I'm sorry you're running hot! Do you have thyroid issues? Anecdotally, I've heard CBD oil taken at night helps with flashes and sleep. Just sayin'....
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Effexor didn't do a thing for me and is very hard to wean yourself off of.
What is CBD oil?
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CBD (cannabidiol) is a non-psychoactive cannabinoid derived from the marijuana plant. It is commercially available for its purported medicinal effects.
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Imurphy, I've never had thyroid issues before but will ask my PCP to check that when I next see her (thanks for the suggestion).
Blownaway, CBD oil is a non-intoxicating product made from hemp (think marijuana without the high). A lot of people claim that it's a miracle drug but quality is pretty uncontrolled & I doubt my MO would prescribe (or even recommend) it. And I KNOW I'm not ready to try Effexor. Hopefully my temperature will cool off some when we get past the summer heat & humidity. I'm also going to look into acupuncture. In the meantime, I just keep cutting my hair shorter & shorter!
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Has anyone had low blood potassium levels with Exemestane? I've been on it 5 mos. now and today my level was very low, but have previously been normal. Had my third Xgeva shot today, but it supposedly doesn't lower blood potassium, just calcium.
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Bliss, I found this. Apparently low potassium (hypokalemia) can happen in AI users. I'll have to be sure and ask my doc about my levels on my next visit!
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hemp is in the same family as marijuana, but a different plant. You could not get high smoking hemp. Hemp is farmed for its fiber (similar to linen) and it's seeds are very high in protein.
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Interesting, and thanks for the link, lmurphy. I think that's me because after chemo I never had issues with potassium levels except now since taking Exemestane. Never had a problem with it while taking Anastrozole or Letrozole, so this could be the culprit!
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If you are taking turmeric and it helped the joints, how much are you taking?
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notthrilled--I take Gaia turmeric one capsule a day. I think it's right at 500mg. Doc said start with one and go for a month. If it works, stick with 1. If not, take 2 a day and go for a month. If that works, stick with 2 for a while and try to wean down to 1. If 2 a day doesn't work after a month, then it probably won't work for you at all....according to my doctor. And be sure to take a good one that has the black pepper already in it.
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Does anyone know if aromisin can trigoer preexisting conditions? I had a bad whiplash about 5 years ago which had long ago stopped bothering me. I have been on aromisin for 2.5 months now. I have felt my neck getting stiff and then a bit painful when running. A few days ago I woke up with severe neck pain radiating up the back of my head. It eased during the day and I can stop it bothering me at night by rolling up a soft pillow and putting it under my neck. It seems to be improving: it was definitely a lot better this morning but I stopped running. I had expected any joint or muscle pain to be in my arms or legs and more widespread than just one area. I'd be grateful for any comments.
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Hi. New to this thread. I tried reading thru all 180 pages but just couldn't.
My onc. has prescribed Exemestane for me to start after I finish rads. later this month.
Mfgr: Mylan. Anyone else take this generic?
How does one change to another mfgr if I can't tolerate the side effects?
I do mail-order thru Optumrx and it is a whopping (to me) $275/3 mos.
Does anyone else pay less?
THX!
Janis
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Jaybird627,
I definitely pay less. I'm on a Cigna health plan. Are you on Medicare by any chance?
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I started Anastrozole November 2017, no side effects except a few hot flashes for a good six months, then my legs and knees started getting stiff, painful. I felt like I was 90 years old, painful getting in and out of the car, getting in and out of chairs. I stopped it for a month and after 2 weeks off I was pain free, I am going back to the oncologist this Wednesday. The plan is to try a different one Letrozole I think and if I have problems with that then to try Exemestane. Has anyone had better luck with one or the other or anyone take some kind of herbal supplements that help with the side effects. .
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I am sorry to say that I have a really good insurance plan (good insurance, low salary), and all cancer meds are covered in full with no co-pay. Another reason I need to be able to work another 10 years!
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Hi ElaineTherese,
I have UHC, but they are just the administrators, my employer is self insured. We pay a lot for coverage but have awful benefits overall.
The generic Aromasin is a tier 3, the two other AI's are tier 1. My onc. wants me to try this one first as he says it has the least amount of side effects?
I'm hoping I don't have awful side effects because I do have a full-time job and am a single parent to my 12 year old daughter so it's not like I can go back to bed if I don't feel well. lol.
I have a cream prescribed to me and my ins. co. won't cover it. They recommend otc creams instead. So I paid cash price of $32.
It's not cheap to be sick nor to stay well!
J~
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I started out on Anastrozole and only got 7 mos. before my knee joints ached so bad I could hardly walk. MO switched me to Letrozole and I was much better for 17 mos., then the same thing happened. Now, I'm on Exemestane going on 8 mos., and not doing too badly.
I'm not sure how I'm paying for the Exemestane, it must be fully paid by insurance; I have Anthem BCBS. All I know is it comes directly to me from the pharmacy at my MO's office via FedEx.
Grainne, I don't doubt that AI's could make past injuries flare up again. I have arthritis and I know every one of them exacerbate it.
Good luck to all as we keep truckin' along.
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