Life on aromasin
Comments
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Pheasantus
Perhaps I didn't choose the right words. They have a schedule but their income does not depend on that schedule and those schedules are flexable. They don't fear getting fired.
I know many women in my bc group that are retired. They are usually busy, active women , however they have commented time and time again that if on a particular day they were not 100% they choose to do less and give themselves the time needed to recup.
I can never do that. EVER. I feel like sh*t , I have to put in the same work as I do on good days. I did a 4 day industry tradeshow 2 weeks after surgery. I did a week long tradeshow 2 weeks after rads were done. I looked like the walking dead.
And agree 100% on spousal cancer contamination. If Im sick , he is sick too. and that SE is the same whether retired or not. As a matter of fact I believe that may even be worse for a retired person because their illness has effected how their DH had planned on spending the retired years. Cancer contaminates everything.
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I wonder how long a drug would last that impairs the mental capability of MEN. Of course, there are statins, and they do a pretty good job of it.
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I worked full time my entire life. single and no one to back me up. It wasn't easy during treatment as I was a commission sales rep with no back up so I had to get my duff in gear to get to work to earn my keep
now, my finances are based on how successful I was at earning and saving my money during my career. When cancer hit, it scared the pits off of me but it is at times scarier now. What I got....I got. My health is not good enough to take a job
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Raider Girl,
I totally agree with you about the life changes due to AI side effects being (somewhat) easier to cope with in retirement. I've been on Arimidex for close to 4 years now and my executive function has gone missing. I can't multi-task for the life of me.
My profession consisted of demanding, long days of keeping multiple balls in the air. I chose to retire a year early, the year after my diagnosis. I often count my blessings that I was able to do that. I honestly don't think I could do the job now, not just cognitively but physically. The later, slower mornings do remove a tremendous amount of stress.
Yes, I'm still very busy, and active physically, as my joints allow - but I'm the boss of my own time. That is the main difference. If I wake to a particularly crappy low-energy morning I'm able to go with the flow and it causes no inconvenience to anyone else.
I do miss my mind, though. It used to be one of the best things about me.
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Pheasantus, I honestly feel we meant no disrespect to anyone retired! I know lots of retirees and they are like the energizer bunny. They also don't have to be if they don't want to. Raidergirl nailed it right on the head. We have no choice. When I screw up at work (which I have done due to the cognitive issues the AI has wrought upon me) I catch hell because missing a deadline may mean my client can't start a training on time that might mean a job. Just harder for us working still is all...
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Thank you girls for your responses - I appreciate each one, truly. Let us all put that one foot in front of the other - each day.
I'll just keep 'dusting that pheasant'0 -
Came home from the store. Left the car wide open with lights on and back hatch up. DH just shook his head when he found it that way an hour later outside.
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hmmmm, have you checked out Crazytown? think you will be welcome there with that memory!
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yes have started to lurk in Crazytown. Should take up residence there!
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I had a bone-density test Monday, and the results showed a 7 percent loss in hip and lumbar spine, which sounds like a lot to me. Stll, the report indicated results were in the normal range for WHO. I've been on AI's for more than 3 years. My last test in 2013 showed no loss, so this was 7 percent in 2 years.
I've emailed my MO to see what she says. (I get the results online as soon as she does.)
Should I be concerned??
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wavewhisperer, I have had roughly the same amount of loss (8%) in my right hip in two years as well and they tell me it is within normal range for my age. It actually hurts to sleep on that hip (I am a side sleeper) so I had to switch to my left side which while difficult, I did manage to get used to it. I am thinking that it is not a lot of loss or my MO would have told me.
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I had my port removed yesterday and see already pages of posts here!
gypsyjo: Thank you for the suggestion. I'll definitely try this yummy treats.
magnolia57: That's how I feel about modern medicine too. We obviously don't know everything about human bodies. We certainly haven't figured out our Earth (e.g. deep sea exploration). But hey, we're ready for Mars!
I'm so glad to have this haven to be able to vent and find consults. I mean, family and friends can only "get it" so much. When I complained to my first MO about Tamoxifen and cognitive problems, she chalked it up to natural aging. It took at least one year to slowly recover after I stopped Tamox. When I expressed my concerns to the 2nd MO about AI on the same issues, she commented not all elderly slowed down, therefore AI (and losing estrogen) shouldn't affect a person's cognitive ability that much.
Now I wonder if I will ever finish my graduate program, ha!
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April, thanks for the reassurance. I did hear from my MO's nurse today, and she said the same thing, that my 7 percent loss is not dire enough to warrant medicine such as Fosamax. She said to continue with calcium, D3 and up my weight-bearing exercises.
Like you, I'm a side sleeper. Both hips hurt during the night, as well as both shoulders (rotator surgery in one previously; torn rotator in other) so I have to constantly shift back and forth. Additionally, I have a cervical disc problem, with radiating pain down my left arm. I take 2 extra-strength Tylenol every night before bedtime. But it's one of more of my joints, not the sun or alarm clock, that wakes me every morning.
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Tree Lilac - I see from your signature that you are in your 40's. I turned 48 in June - I wouldn't have expected too many ageing issues in our 40's, would you? Secondly there is nothing natural about this process - we are not gradually, naturally losing oestregen - it is a severe chemically induced process, NOT natural ageing. You know the person you were before, and how things are for you now. I believe you because I know how it is, these MO's should pay a bit more attention because only YOU know how you are feeling and you are accurately reporting your symptoms. I will praise my MO who did take me seriously and had a long appt with me when I first reported them. However he stopped short of saying "tamoxifen is to blame" and did mention that chemo can cause problems, even some years out. I do know someone who had the chemo only and no hormone therapy and is now suffering short term memory problems, and she's younger than both of us - so I believe what he says about the chemo. For those of us on the anti-hormonals - there is plenty of anecdotal evidence that they can cause mental fog too - there needs to be more awareness of that. Maybe they are afraid it will put people off taking them?? I see a neurologist on Tuesday afternoon, part of the "ruling out any other cause" that the MO instigated. I will be interested to see what the neurologist's take on all this is as he is coming from a different place than the MO. Meantime I am happy with the switch to Aromasin, So far, although still some mental fog persists, it seems less severe than it had developed to on tamoxifen. I also have no muscle aches anymore. I'm not complainiing about either of those improvements in fact I'm doing a little dance (on my zimmer frame) ...
here I am
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feelingfeline: It's great news that Aromasin is more tolerable than Tamox in terms of cognitive SE!! I see light on the distant horizon.
A gray-haired lady! We're not THAT old, are we? (I just turned 47.) ;-)
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Ha ha - just so I don't get too cocky - I wrote that I'm seeing neurologist on Tuesday - I meant WEDNESDAY Aagggh grrrr
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I'm a professional writer/editor and it's very frustrating when I have to constantly use the thesaurus to find the right word. I also have to re-read my emails because I'm always leaving words out--something that never happened to me before chemo and aromasin. My oncologist recommended neurotin for hot flashes but the last thing I need is another drug that can cause mind fuzziness.
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My experience with this third post-chemo/surgery drug:
The bad: mind-fuzziness, but not as bad as on arimidex and tamoxifen, go figure; still some joint stiffness (not so much pain as just hard to get moving at times, usually a.m.); slow weight loss; hot flashes
The better than arimidex/tamoxifen: hot flashes not as intense; bloating almost gone (I can take my rings off easily, my own indicator); at least I can lose some weight--on arimidex I gained; more energy; less moody. All drugs caused dry eyes (not from an infection as earlier threads suggested as possibility), but when limit my screen time and add refresh eye drops more frequently--I live at 7000 feet and it's 20% humidity here most days--my eyes are better on aromasin than on arimidex. I hope this one works.
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Yaay! Good news always welcome
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Better news, Claireinaz.
I understand about the altitude and low humidity. I went hiking in Glacier National Park this summer. Equally high and crispy dry as where you live. Very different compared to where I usually live, right beside Lake Michigan. My eyes complained and have not been particularly happy since. Of course it doesn't help that I'm painting my house and it's filled with particles from sanding.
My ophthalmologist recently suggested GenTeal drops and gel. I find these are better than other drops I've used. If you use drops more than a couple of times a day, it's important to use preservative free drops, whichever brand you use.
I think Aromasin is the last to be prescribed because it is newer and more expensive. I wasn't on Arimidex long enough post chemo and rads to make a good comparison between the two. I stopped the latter because of eye SEs that nevertheless returned on Aromasin.
Had my drivers license photo retaken this summer because I no longer looked like the image in the old one, nor on my passport for that matter. It was taken weeks before the BC diagnosis. I had long hair and looked ten years younger. Thought is was time to have an ID that reflected reality, as I'd had a few people do a double take of my license, not that most people would think a nearly 60 year old little woman would be getting into much trouble.
Chemo is hard on you, but these years of estrogen depletion are worse. Not sure I want to continue after 5 years. It's a discussion I've not yet had with my MO. Really no point until we get there w/o a recurrence.
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Doxie, thanks for the recommendation on the drops. I was wondering if anyone had any luck with restasis? I see the ads, but have yet to ask my doc for it since I'm so sick of more RXs to fill. I'm down to two--aromasin in the p.m. and levothyroxine in the a.m.--and don't want to add to that, considering all the RXs I've had to take the last four years!
I have also found--sadly, but silver lining--that not drinking any alcohol has reduced hot flashes and helped with the bloating from exemestane, too. I haven't had anything to drink, not even one glass of wine---BIG sigh--since mid-July, and I sleep better with less evening hot flashes--that's when they are most noticeable, and wake up with a lot less stiffness and bloat.
The only fun drug I have left is caffeine. Giving that up, NEVER! It's supposed to be good for us ER+ souls anyway.
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I fear my ophthalmologist is going to recommend restasis. I doubt I will do it. Too expensive.
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my eye doctor said he hasn't seen much improvement with restasis. I just use a big bottle of saline like you'd use with hard contact lenses.
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I have been using the OTC eye drops but that is really for when I take my lenses out at the end of the day. I am guilty of wearing my lenses under my swim goggles and someone where I heard that is not a good idea but I do as else I would walk into a wall instead of the pool!
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Thanks all. I think I'll stick with refresh tears--recommended by my eye doc some time ago and still work okay. I have to remember to blink more and take frequent breaks from my computer screen as well. So since I've been on it for two hours now without a break (I teach at a university and my job is prep, prep, prep!) I think I'll go walk the dog.
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Well had my neurology appt re brain fog that started on tamox and has persisted, though a little less severe, in my 1st month on aromasin.
Summing up:
Neurologist said my brain looks lovely (my scans)
He ran me through some physical, verbal and paper-based tests, all very easy. Example: he recites 3 numbers and I have to say them in reverse order. (Thank goodness he didn't ask me to say my "9 times tables").
He then said
1) I don't have early onset alzheimer's (which I never thought I had anyway)
2) It was perfectly possible that the oestregen deprivation was the cause (in which he went further than MO)
3) He thought it was unlikely to get any worse (well that's good news)
4) He also thought it possible that it may get a bit better (more good news)
5) Finally he prescribed stress reduction, aerobic exercise and B vitamins.
So there ya go....
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this stuff made every joint in my body hurt. Couldn't even bend my toes to walk. Back to Anastrozole if the letrozole isn't better. Pick your poison. Oh well at least we have choices
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Glad it was just normal SEs from estrogen deficiency, not that any of us are particularly glad about this SE.
I second #5 on the list. Can't speak to B vitamins though. My memory is shot when I'm swamped at work and at a deficit of sleep. I feel like my brain is broken in little pieces and I'm swimming among the bits of information I need with them floating away from me as I try to grab. Do better when when I've slept better. And much better with regular aerobic exercise.
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Feeling, I'm glad your neurologist said your brain looked 'lovely.' When I had a brain scan, the results said 'unremarkable!'
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sounds like a good scan and maybe I should restart the B supplement, dang got a handful of pills now so one more will be dandy
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