Life on aromasin
Comments
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ORknitter that is a perfect way to describe how I feel on this drug. Just kind of blah, going through the motions with nothing feeling great like it used to but yet not feeling awful either. Just kind of numb, just like you describe. I take Ativan for anxiety when needed but it does nothing for me so don't take it very much.
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I'm now taking 150 mgs of 5-HTP for mood, in case anyone might want to try it. It increases seratonin levels, but be careful, because when I go above 150 I get overly anxious.
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Aromasin was my 3rd med - allergic to anastrozole, had terrific aches, pains and stiffness with letozole and after 3 weeks aches and pains returned when taking aromasin. I could not get a good night sleep which affect my life daily. I decided to stop altogether and had visit with oncologist who respected my decision. Another reason is that I am coping with pinched nerve in neck resulting in pain in arm and fingers. Symptoms responding to steroid shots and physical therapy. Also after 3 months after radiation I developed lung problems resulting from the radiation. This took almost a year to clear up and that time I was not on any type of cancer prevention medication because of being on Predisone. If it isn't one thing it's another.
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pheasantduster. long term use of steriods like Predisone is know to reduce bone density. Now if you were on one of the ESDs (estrogen sucking drugs) you'd have a double whammy. Is Tamoxifen out of the question?
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Well ladies, it is on to Femara (Letrozole) for a while to see if things change for me. I was given a 90 day supply (I still have about 75 exemestane left) and told to call if I can't hack it or wish to go back to exemestane. I am afraid but hopeful that this will be the answer for me as joint pain is out of control and I am so not feeling these drugs. I will check in from time to time since I have spent 2.5 years on this drug. I wish you all as pain free days as possible and Happy Holidays!
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Lago, thank you for your comments. FYI, while taking long term Predison my Pulmonary Doctor had me take 3 calcium tablets (500 mg/with D) every day. I tried to comply - some days not all 3. I do take Alendronate once a week which helps bind calcium to bones. My recent Bone Density was good as I had not lost any bone mass in 3 years. I am diagnosed with osteopenia. No
my Oncologist did not encourage taking tamoxifen. Soon to celebrate my 74 B-day, I am happy with my decision. Wish all the best during your holidays. -
Pheasantduster Just Osteopenia at age 74? cool. I was osteopenic at 49 diagnosed just before chemo. I now have osteoperosis diagnosed at age 52 but just over the border in spine. Taking Reclast shot now.
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LOVE your new photo lago.
Well, several weeks now on Aromasin. I'm getting fatter but it could be the holiday time of year. Hot flashes are worse. Aside from that not much else to report. I keep waiting for bad stuff to happen. Fingers crossed.
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Lago, 74!!! Wow you are gorgeous. I'm 72 and would love to look like that. I too have osteopenia only so far. Having a total hip reolacement in February. Hoping to get back to exercising after that to strengthen my bones. Love, Jean
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WarriorWoman,
Just as a followup to our earlier conversation about hair loss, I asked my oncologist yesterday and she said that she has definitely had more patients with hair thinning on the AIs as opposed to tamoxifen. She said the literature officially says it's around 6% who experience this as a side effect, but she personally thinks that number is significantly higher.
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zjrosenthal Thanks but I'm not 74. I'm 54. Pheasantduster is 74.
Warrior Woman thanks
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Wow, what a nice mix-up, I can hardly remember 54!
Would send photon of me but not that savy at 74! -
Wildflower - Thanks for the good news!
Do all AIs cause weight gain and hair loss or is Aromasin special in that way?
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Pheasantduster I used to tell people I was 50 all the time… but then I turned 50. Maybe I will say I'm 74. People will say how great I look. Granted I won't be that much younger than my mom.
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Warrior Woman,
She didn't pick out one AI in particular. I asked her whether tamox or the AIs were more likely to cause hair loss, and she said the AIs, and made the comment I posted earlier. I have read a lot of complaints on these threads about hair loss with Femara, too - that's 2 out of 3 of the AI's.
I didnt ask about weight gain. The se's I discussed were osteoporosis (I'm at very high risk for that), joint pain, and hair thinning from AIs. It wasn't worth it to me to risk permanent bone loss and the other crappy se's just to gain a 3% reduction in recurrence so I am going with tamox.
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Make that 3 out of 3 AI's that cause thinning hair. I'm on Arimidex and the thinning has been significant.
I really hate being able to see my scalp through my hair.
I think that the percentage of people suffering SE from the AI's is vastly under estimated in the literature.
If my MO's reaction to my reporting of SE's to him is any indication, he either denies it's connected to the med (even when it's clearly identified on Astra Zeneca's website) or writes it off to aging. Funny thing, though, if I take a 2 week drug vacation, my "aging" reverses.
If he's not hearing me, he's not hearing his other patients and he's certainly not reporting the incidence of SE's to Astra Zeneca or any place else.
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My onc was very forthright about it. She didn't even hesitate before replying that she had observed that her patients on AIs experienced hair thinning more often than her tamox patients, and that she thought the percentage was actually higher than what was given. She's a researcher with a well known teaching hospital, so I have to believe she knows what she's talking about.
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my hair is thinning on top and my MO told me if is the AIs. He said it's the lack of estrogen.
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Does anyone know how the hair thinning occurs? Does hair fall out more? Does it break more? Or just not grow in as much?
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Warrior_Woman,
I've not gained any weight on either arimidex or aromasin over nearly four years. If I ate less chocolate at work and was a little better with my exercise routine, I'd be lighter.
Hair loss, not sure. I lost my long hair to chemo. Now I keep it short. It's certainly not thicker, but I don't see much hair in the sink or tub. Have no clue where it goes.
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what do they do for bone loss? I'm quite concerned about this, being only 35.
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I've actually lost about 4 lbs on Aromasin but gained weight previously on Arimadex. It might have had something to do with bloating, water retention and swelling with Arimadex that I experienced. As soon as I stopped taking it and switched to Arom., my rings were looser. No weight gain, etc.
As for hair thinning, I began to take Biotin supplement when my hair started growing back when I was getting Taxol. I've just kept taking it and my hair is thicker than it's ever been--and I've taken Tamox, Arimadex and now Aromasin. Rarely see any hair anywhere (almost down to shoulder length now).
Some women don't do well on Aromasin and have no problems on Arimadex. I was the opposite.
Claire
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Cajunqueen - I have been taking calcium/with D supplement for many years - and once a week take prescription Alendronate. Taking the Alendronate is a bit of a bother because you have to take first thing in the morning with a large glass of water only and then wait an hour before you eat anything. I take mine on Sunday as I get up early, take my shower and by the time I'm dressed an hour has gone by and I then can have my OJ and coffee before church services. I have been diagnosed with osterpenia and this med has at least kept it stable. Your primary care may just suggest supplement only but the Alendronate helps the calcium bind to your bones.
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Another comment for Cajunqueen. at the age of 39, concentrate on getting your calcium from dairy products if you can tolerate them, also green leafy vegetables, some nuts and fish. Google info on calcium foods. Lots of information.
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ARGH!!!! I need to vent. So I took about a 7 week break from exemestane - my pain level dropped by about 80% and I was able to use less than 1/2 the pain meds that I was using, I was trying to get all the way off, but :-(.. Anyway, I decided I learned what I needed to know and went back on the ESD (Thank you Lauren). I send a message to my doctor, as he asked, letting him know what happened during my break, that I wanted to start again and asked if there was anything they do to check you for heart damage, or any other pain ideas. The nurses were great - and my MO's response was - max her out on effexor and tell her to get more exercise - pissed me off. First off effexor did nothing for me and I had really bad side effects, plus it took me 4 months to get off of it after I oly took it for 2; exersize increased my pain - and he also said we don't do anything to monitor for heart damage. I feel like getting a new MO with a little more compassion, but up until this he's been great. Thanks, just wanted to vent, and after being back on the ESD for only 4 days my pain is returning.
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I haven't experienced any hair thinning on Aromasin, but I do have the joint pain. I started using MegaRed Joint Support, tho, and it's helped.
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Linda, so sorry, vent away. Didn't seem like he heard you.
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cajunqueen15 Depends on your bone loss. Not everyone has the issue. Talk to your MO and primary care about this. But also include weight bearing exercise in the mix.
LindaK your primary care should be watching for heart issues. Your primary care is your main MD. I love mine. When I was having a SE from Exemastane I actually went to her because I find my MO would just send me to a specialist. That wasn't what I needed.
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Iago I love your idea of increasing declared age in order to earn compliments!
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