Life on aromasin
Comments
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Kathy, thanks for the response. Like you, I think I'll have mixed feelings about going off the AI's, when the time comes. I wouldn't miss the joint pain and thinning hair, but I think these are our best defense against recurrence. I have this image of all these cancer cells just waiting to attack, like a horse waiting for someone to leave the barn door open!
Tuffmama, thanks for the tips about cotton balls. I do have trouble with a washcloth retaining heat. I'll try ithem tonight. Those cotton balls have been sitting on my vanity for years!
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Dear Wave Whisper, I know it is a big decision!! I see my onc in November!! I will question her then!!! Have a great weekend
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I was told that the recommendation now for Tamoxifen is 10 years. Is it not the same for AIs?
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I'm glad to be back on the discussion boards; about to begin aromasin after taking a month off after a year on tamoxifen. I had serious cognitive dysfunction that snuck up on me and then blindsided me . I am fortunate I didn't lose my job..I felt humiliated and embarrassed struggling to think, remember and function in a highly cognitively demanding job. People looked at me with pity during meetings while I struggled to remember words and I grimaced from the effort to articulate my thoughts. I have deep empathy for people who struggle with communicative disorders, autism etc. I understand better now. But.. I have to go back on to some hormonal...so thought I would try a different AI. It's scary, but I'll try. Had all the arimidex side effects...I welcome all ideas for managing the anxiety. There's no one who is comfortable hearing about this and I really need support. Hoping this will be manageable. The month off the drugs has been heaven. Thank you and I hope I can help someone on this forum too. I feel I should go on the tamoxifen strand and say it's not your imagination ...tamoxifen can cause mental havoc. Good night all. Thanks for reading
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Hi Magnolia - that was me, that's why MO has switched me to Aromasin. I went straight from one to another so no month off in heaven. I am still struggling with short term memory a bit but it seems to be less extreme on Aromasin so far (I have only been taking it 2.5 weeks).. MO had me do brain scan to rule out any other cause before switching me to AI's and I have to see neurologist on Sept 2nd as follow up to scan so it will be interesting to see if he has met this SE before - it seems to be a small subset of tamox users but a lot of them were on bottle of tamoxifen thread! I know what you mean about having empathy suddenly with people who are naturally like this - it's certainly a humbling experience. Another thing I noticed after switching to Aromasin was the first 2 days sexual desire was back in spades (has tapired off a bit now) which was a very welcome feeling as it had been so long since feeling it. Unfortunately DH is shot in that dept as he had stage 3 prostate cancer 2 years after my BC - that's life
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Magnolia, hoping that you are luckier than I was with exemestane (Aromasin) in terms of the cognitive deficit. I also have a demanding job that requires me to think and this stuff wreaked havoc with my memory/mind. I think once you lack estrogen on the level that these drugs cause you to, you are going to have memory deficit and other cognitive problems just like someone who is very old often has (not all cause some like my father in law who is 88 stay very sharp) to deal with. I am on a planned long vacation (MO wanted me to take this time off) of three months off and am just now getting my brain cells back to where they were before. Of course, my time is up tomorrow and I am supposed to restart the drug...not happy but I will do it just to see what I am dealing with after a long hiatus. Some do better after taking a break according to my MO. We shall see....
Wishing you the best. Lots have had no problems with different drugs depending on the person. Hope this one works well for you.
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Magnolia, FeelingFeline, and April485 - add me to the list of people with cognitive issue and cognitively demanding jobs! I switched from Arimidex to Exemestane in the hopes of improving cognitive deficits, but have not been lucky. My mood has improved (though it swings) as have my hot flashes, but cognition, joint pain, and insomnia have gotten worse.
I had neuropsych testing - no brain scan - and my deficits are apparent and apparently fit some profile of chemo patients. (The AI's are apparently considered "chemo" also.) I am meeting with my oncologist this week to discuss switiching to Tamoxifen, since the AIs seem to be a nasty class of drugs for me. It disturbs me to hear of people with cognitive issues with that drug, too!
My boss is being very understanding, but at some point I will have to step down from my position and take a lower level job - FRUSTRATING! And while I never considered myself to be lacking in compassion, I better understand how difficult it can be to see others able to do thing with ease, that I struggle with. That isn't my usual experience! Yes, humbling and embarrassing
I won't give up though. Or rather, I hope I won't give up.
April, I hope your brain will have re-trained itself and the changes for the better will be permanent!
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Hi FeelingFeline, April 485, and StrongEnough - thanks for your thoughts and input..... : ) I'm holding out some hope that the lack of estrogen isn't the bottom line for the cognitive issues...I was ok on Arimidex in that regard, so maybe the aromasin will be similar. It may have been better for me to wait more than a month like you did April485...my onco seemed very uncomfortable with taking off more than a month. I feel more with it, but my husband informed me today that I'm still not entirely functioning the way I used to. He's 15 years older than I am and wants me to remember all his stuff too.lol...If I stay like this it would be tolerable.
I hope the changes , tamoxifen or going back on AI after a break will help us hang in there a bit longer. I've set a goal of staying on for 3 years....can't fathom beyond that yet. It's interesting that your docs went right to a brain scan or testing , Feeling Feline and StrongEnough...mine said take a break and see how u feel...my mother has dementia (started at age 83) so that was a worry in the back of my mind. A brain scan would have put me over the edge.These choices are so hard...I look at statistics and just wonder if I should play the odds. But it's just day by day and decisions get made when we are compelled to make a change. I hope you will all find the drugs are kinder this time around. Take care and please continue to share your experiences.
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R6 weeks on anastrozole gave me an arthritic finger, but 6 weeks on Aromasin has been much worse. Woke up this morning and could only make 1/3 fist on either hand and toes hurt too much to walk barefoot to the bathroom. Guess we will be tryin letrozole next. Aromasin has also thinned my hair and given me a spare tire in this short time. If that doesn't fare better I'm going back to the anastrozole. Which ever wil be the least of 3 evils.
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Choice of hormone therapy
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Love it feelingfeline
x x
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Hahaha So true!!
I've just started but already, like knowledgeforpower mentioned, have constipation that's worse than pregnancy. And I haven't had joint problems yet.
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Feelingfeline, exactly how I look right now. Supposed to decide between Aromisin and Tamoxifen. Was offered Tamox because I already have joint pain, but not liking the sound of it either.
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Treelilac, try dried cherries. My daughter got me hooked post surgery and it solved the constipation
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Justlove those monkeys. Just picked up my letrozole. Would be crossing my fingers, but can't cross them with the stiffness LOL
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Can't cross anything anymore cause of stiffness cholesmom! LOL...
Restarted the evil little pill yesterday. It was one of the hardest things I ever had to do. My little vacation was sooooo great! Ugh! But, at >95% ER+, cannot take the chance. If it is really bad again, will try femara...damned if we do and...well, you know.
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All you ladies have courage - I'm on a little respite from exemestane. Severe aches and pains at night! Primary Care suggested I try Co-Q-10 but then had a week of diarrhea and lethargy - ugh. Don't know if either med caused it but when I get very anxious my digestive system seems to be affected. Back to my yogurt also. Somedays seems like I am going around in circles.0
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rettemich
I had turbo charged, nuclear, outer space kind of hot flashes and sweating.
Absolutely unbearable. MO put me on Vit E and black Cohash . No kidding. Im melting and this is his solution. No one took it serious.
One day I called and told the MO if couldn't do something to help me *I would drive off the bridge. he called back in 15 minutes. I've been on 40mg Megace and it stopped all sweating. I minor miracle for me.
* I dont recommend threatening suicide. They can send the padded wagon.
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The "hormonal therapy" aka chemotherapy is like a revolving door that spits you out to another poor choice that's just different -however, also unpleasant- in a way that makes you grateful for the change, any change in a bad situation. The treatment seems oddly primitive, like using leeches to draw out disease or poison. Taking drugs that are tantamount to poisoning ourselves doesn't seem logical. I doubt if there is much medical research aimed at finding safer medications for breast cancer "survivors". If I'm wrong that would be awesome. Sorry for being so negative ; I do wonder why we are still taking tamoxifen 50 years later when it's known to cause cognitive impairment...sometimes (?) long term. The FDA removes products/substances from the shelves for much less.
DianaNM, please read the research on tamoxifen and brain dysfunction. I took anastrozole, have osteoarthritis (cortisone shots for both knees every 4 months), osteoarthritis, osteopenia, gi problems from taking biophosphonates for my bones, got trigger finger, hobbled around in pain for months that passed the year markers and it pales to the distress I had on tamoxifen. Be observant of your thinking, judgement and reasoning abilities. I would endure any pain as long as I can think. If the aromasin is unmanageable..I'll. follow suit with all who wrote in the last day and keep trying other possibilities...letrozole etc I wish you and all our sisters peace and comfort as we make hard choices.
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I also have cognitive issues. I am on anastrozole. I follow this thread as Aromasin is the next AI I might try hoping for better results.. I have a degree in economics from Stanford and have juggled multiple schedules and dependencies for a major global retailer in the recent past. I now sometimes go out the door 4 or 5 times before I remember everything I need for my errands. I was driving once on a road that I have driven regularly for 10 years and couldn't identify for a few minutes where I was, though I knew where I was going. I wrote a letter for a legal action and upon rereading found that I couldn't keep the dates straight and confused months. I sometimes have problems in conversation in finding the right words, enough that it impacts the conversation. I am not myself. I have been on AI for 4 months. I am only committing to continue AI month by month and learning techniques to help me stay more on top of things. Losing cognitive function is my worst nightmare. My increased joint issues pales by comparison.
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I've been on first arimidex, now aromasin for almost 3.5 years now. I feel sharper on aromasin, but several things still impact my mental sharpness. I need to get consistent and good quality sleep, as well as time to relax in the evening and weekend, regular exercise, and eat a healthy diet.
I have a very demanding job at a university requiring recollection of names to faces and minute details that are important to others, though the latter aren't that important in the scope of my job. I use humor to defuse my failures of memory and loss of words. Interestingly I've now noticed others struggling for the right words when they are under stress. Much more compassionate now.
I worked through the fog of chemo, radiation and the start of arimidex. I'm not sure I could remember more than my name then. Things do get better, but you have to employ strategies to manage the mental deficiencies. It takes time to do this, figuring out what will work for you and your job.
I've been given extra duties and several times I've been asked to move to a higher position since getting BC. Besides loving my current job, I'm not sure I could handle a new position with the cognitive issues I have when I don't do all in the first paragraph of this post. This last year at work and my private life have been insanely busy and my mind reflects the chaos of this. My MO would not be happy with this stress level. I have my first quiet weekend in months coming up and I'm going do my best to find the healing calm necessary to be productive on Monday.
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Had my bone density test yesterday and have lost bone in L1 to the point it's osteopenia. Don't know what my MO will say. Have been on AI's for 3 years. My last bone density test 2 years ago was normal.
As for cognitive problems, words used to be my forte. I was a writer and editor for 40 years. Now I can't remember common nouns and find others trying to fill in my sentences. When I write, I have to write around the words I can't remember. Makes me very sad.
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This is so disheartening to read. So many of us having cognitive decline because of a drug that is meant to help us stay healthy. I honestly feel that they can do better than this in terms of an anti-hormonal. But, then again, look how long it took for them to link the extra estrogen they were giving to women to breast cancer. They finally figured it out after thousands of women ended up being diagnosed.
Now they should be concentrating on these very widely used drugs such as tamoxifen (50 years after first prescribing it!) and AI's and making drugs that have less debilitating (and sometimes permanent from what I have read) side effects! It is just not acceptable. Although many women do not complain and get mild side effects, I am betting there are VERY few that have NO side effects. Perhaps if they are retired they don't notice slight decline in cognitive abilities or they chalk it up to aging. It is not normal aging. It is aging at warp speed. Ugh!
Off my soapbox.
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April485,
I did notice that my friends in bc support group that have adjusted fairly well to AI's and have the least side effects are all either retired or have a more leisure lifestyle than mine.
I think a person adjusts better when they can rise when they want, mull about the house until they feel awake and loose jointed and then go about their chores as they feel capable for that day.
These ladies are all busy. They all keep home, and volunteer for charities/church, they occasionally care for grandchildren and are not being cuddled but none have to hit the floor running every single day no matter how they feel. That has to make a difference in overall adjustments to these SE's.
If I could I would stop working now and just exist but that is not an option.
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I made it through my 5 years on the stupid PILL, then I was also fortunate enough to be able to retire in 2013. Fortunate as the company and industry I was working in was going down the tubes, I thought at first that I would get some other job in retirement but no way could I ever learn a new business. My brain is just so much slower and yeah, I forget stuff and often almost get lost in my neighborhood when going for errands
I feel fortunate to be able to pay my bills and not work but this sure is not what I thought retirement would be for me
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proudtospin - let us know if the cognitive impacts lessen now that you are done. i would like to know sooner than later if the changes are permanent or temporay. I am only 4 months in. My MO said to consider, but with mucinous cancer my size it was not recommended to take AI, but consider taking an AI. I figure its all a balance. I want to do more good than harm and am looking for the balance whether I go the whole 5 years or not.
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Proudtospin,
You have a right to be unhappy with this retirement scenario. I have been working full time since I was 17. Yep, you read that right 17 years old and working at least 8 hours if not more.
It would piss me off to no end if when I finally get to stop, the leisure would be compromised by this disease. Not fair, not fair, not F88king fair.
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it is really hard to tell if the changes in memory issues is changing more or not. Been off it since Jan 13, wow was it hard to get off. Almost like when you go off of precnisone? My life is so different now.
I just took a call from Fidelity who manages my retirement accounts. Hey with all the crap in financial market this week, they were just checking on my well, nerves and did I want any changes to my instructions. I told them they know more than me and I expected them to do their best. No change, she said my account looked fine so seemed relieved I was not panic-ing.
I think the best thing I did was to realize my limits and be sure someone is watching out for me.
I do have issues remembering the dates for things so really depend on my old written daytimer! nope, it is not better but dif
I am loosing weight though and at a better number than for years, not sure if related. Not sure if all this makes you relieved or not but realize, I am 5 years older than before the med and somehow while on them, figured out how to save enough for retirement so not completely crazed!
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Have been bothered by RaiderGirl's comments on side effects being easier to handle if you are retired and have all that time! Most retired people have a schedule like everyone else. Getting up anytime you want is not a good idea (except for teens) If your fortunate to have a spouse, your health affects him also. When side effects occur, loss of appetite, lethargy, aches and pains, my spouse is concerned and worried which affects his life for the worse.0
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I am retired and almost 70 (November) and I agree with Raider Girl - there is something about "being your own boss" that does make it easier to schedule life around the se's - I was very busy in retirement but there were days when I knew I couldn't do a thing I just had to lie down and wait till the se's passed - I worked all my adult life (and attended school at night for a few years too) but I couldn't have done that whilst taking AIs - as some of you know they failed me miserably and I ended up Stage IV and am now on Faslodex which has its interesting moments too. Every day I read postings on BCO of younger women being mowed down by this awful disease and I am thankful that I was lucky enough to be in my 60s when it hit - no way I could have had the life I lived while trying to deal with the AIs. JMHO.
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