Life on aromasin
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Well, I know for sure there are SEs, some serious. I just don't think every little thing we experience, e.g. indigestion, mood swings etc. are always the fault of Aromasin. People do experience such things who are not on Aromasin. I also think going through cancer, plus fearing a recurrence, makes us extra vigilant to our minds and bodies. Things that we might have glossed over become glaringly apparent now.
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Yorkie since I'm older I agree with u lots of things hurt some---but at one point while starting aromasin I needed 2 full bone scans 3 months apart?? and I went from moderat some things to severe and some new things within a 3 month period.Most of my damage is irreversible so there is no reason to change at this point, so it is kind of what came first the chicken or the egg. Then people who change (some) say they feel better---I'm not saying that is the answer of aromasin I just mean all these tiny little pills have to have cause and effect not on everything but some are important enough to be more painful than just hurting, like it was for me sometimes.
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Cami, I agree. The medicine is devastating to some.
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But Yorkie like u said who knows too, especially if u 've had chemo and rads, I'm sure that HAS to do something to u'r body too--I mean if it's strong enough to kill cancer what else is it doing to our bodies, maybe it depends on how long or what u take too. Oh we don't know chit and most Drs. don't know either LOL
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Rheumy has suggested a scan although it would be a crap shoot since all the arthritis would light up too. After I'm done with expanders we'll look into it again.
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Cami, my legs are so bad I can't help but think Aromasin made them worse. I do have slipped discs in my spine that are pinching my femoral nerve. That has all been verified by an MRI. BUT, how much worse is it because I'm on Aromasin? Guess I'll never know. I'm sticking with the med until the MO says it's "safe" to stop. Even if I end up in a wheelchair! As soon as I can I'm going back for another epidural. The last one fixed me some, but I'm definitely not 100%.
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Yorkie how awful for u--to have pain in u'r legs and back is so so debilitating for u--that's a double whammy. I know tha feeling about quiting but I feel the same way, at one point when I did ask my Onc said I could change but she would like me to tough it out cuz this is the best one for me too so I got pain meds to help some. And I do sneak and take a month off every so often, which after all this time I notice not much difference since all has crumbled anyway LOL My legs just ache the pain is not as bad as yours, I'm sure but my degenerative disc and lower vertebrae give me the problems, but again I think u'r nerve is bad cuz nerves are the center of real pain. I don't know what they can do for that, but then again u know I don't know much about any of this I just go along and learn from u guys. I know I need to strart using a cane if I want to stop falling, but why I resist that is a puzzle to me, sometimes I think it just might be a matter of people saying Oh what happened--Well what can u say --it all started blah blah blah haha cuz nothing HAPPENED just all this crap. Oh how I think of myself--like everyone is going to ask for that matter will anyone ask.
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Cami, so sorry for your troubles too. Weirdly I have no pain in my back. It's just the nerve, which doctors say is inflamed, going to my legs. The cortisone epidural really did help, which is why I want another one. There's no way to tell if the Aromasin made my condition worse, except that it has become worse while I've been on the med. I've had this pain, off and on for about 10 years. Used to be just in the right leg, which is still the worst, but both legs are affected now.
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Well I.had not had pain until the aromasin. Severe back and neck pain, bad leg pain, can't hardly move arms. I'm getting massages and seeing chiropractor, but nothing helps for long. Can't take pain meds any stronger than aleve, they make me sick, so I'm stuck. However, since my estrogen receptor was only 2%- I'm going to get off the med for a while and if symptoms go away, then I'll know for sure. This is no QOL, and yes I understand it IS life.
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I do feel for those that are brought low from the pains. Yes, I had much of it before AIs although Femara brought it on a major flare with a vengence. Sadly, I've had some form of arthritis or another since 1982 so AIs and no Estrogen made things so much worse. Thankfully it lessened when switched to Aromasin even if not entirely gone.
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Nettie please tell u'r Doc---they might be able to put u on something else.
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I agree, tell your doc and see if they can switch your med, there are other options rather than nothing
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An AL only makes 2% difference for her, I would come off them and go for quality of life and take Indole 3 carbinol......sadly I am 100% ER positive.........but even then i am thinking of coming off them as fed up with hurting all the damn time
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I think that if you can tolerate them AIs are preferable. But if not there is Tamoxifen. My MO worked with me after I tried to stay on Aromasin. She knew that I had given it several tries. It has only been a month so far on the new med but so far it is better. It's not for everyone but I'm glad there was another option.
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I just ended my 5 years so my feeling is it is better to come up with a way to make it work. I went to the gym all during my rads and junk, but scaled it back during those times. For me, just going to the gym and seeing my goof ball but great, positive pals was a help. I appreciated my sewing pals as well during that time. Both kept me focused on the end goal.
best wishes for a fast 5 years!
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Ok, so, against most advice, as of Friday, I stopped the Aromasin! Until yesterday, I could hardly move! As of this morning, I'm much better! Now I'm confused because I don't think that a change would have come that fast from stopping the Aromasin! So now, the plan...I will stay off a few more days to see if the SE go away completely, if they do, I will start on the Aromasin again and see if they come back! If that happens, then I'll know it's the Aromasin and I will asked to be switched! If they do NOT return, then I'll have to assume that maybe I was coming down with something!
All of this is such a crap shoot anyway, but I don't want to ever have to look back and say "I wish I would have"!
Wishing you all a "Happy St. Paddy's Day!"
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I also stopped the Aromasin effective yesterday. I've gone through all of the AIs, and couldn't handle the joint pain. The Aromasin caused terrible insomnia and my hands are very painful. I can't even open a water bottle. I'm at the gym 6 days a week, and I'm now unable to hold a dumbbell. I'm seeing my onc next week. Next step is tamoxifen. Fingers crossed. Good luck everyone. Cancer certainly does stink, doesn't it?
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Nettie - while I have never taken Aromasin, I had terrible side effects while on Femara. The relief/change I felt in a mere three days of stopping the drug was unbelievable! Wishing you luck in finding relief and a tolerable med! Hugs!
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I.just still have to wonder why after 3 months with minimal issues, this came on in a flash and with a vengeance??
Just so confused.
Still scared it's bone mets. But Drs. Say no to scans. Said there are not symptoms
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Not sure why I clicked on this thread-as I only took the dreaded drug once. But have something to share. I too have the cannot remember squat, lost my ability to remember, had trouble putting more than a few words together, and spelling-out the window. And I could spell anything. My profession and position required an ability to speak to the public and professionals (not like the idiot I had become), write professionally, etc. So I marched off to a therapist and requested Ritalin. I had done the research-and really wanted the side effect of weight loss-since I had piled on from the estrogen blockers and especially the estrogen sucker. Sadly, he said no. But-he did offer Provigil. This is used with shift workers who have trouble cycling from days to nights and reverse and being alert. It has made a difference. I started @ 50mg. The first day I was able to focus for 10 hours! Completed projects without distraction. This lasted about 3 weeks. Dose increased to 100 and now @ 150mg. I sometimes do not take on w.ends-but is probably best to maintain blood levels. I sleep later on w/ends though and it can interfere with sleep. But-I have major sleep issues anyway.
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Susan - why did "he" say no to Ritalin? I am getting ready to get scrip from my PCP - she says "lots of her cancer patients take it".
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I take Effexor ER for the hot flashes with the estrogen blockers or suckers. i didn't want to go off Effexor-the hot flashes I had were drop to the knees soak through clothes wake up @ night change the sheets hot flashes. I have not had but a couple warm flashes since the Effexor has stabalized. After looking @ the SEs of both-I was a bit iffy about the Ritalin. I am a nurse-so know just enough to be dangerous. But, if the Provigil stops I will try Ritalin-being aware of what to watch for. Let us know how the Ritalin works for you. I really liked the SE of weight loss. The person I went to is a perscribing psychotherapist-part of my treatment team.
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After trying the other 2 AIs and having to stop, due to crippling joint pain that only Percoset could relieve, I was put on Aromasin. It was manageable in that I only needed to use Advil, but daily. Worked I thought but last Fall bone density showed marked deterioration in my spine. Scared me as my bones have always been strong. He suggested putting me on Flosamax but I didn't want to add another drug to the mix.
Switched to tomoxafen in 11/13 but went off it 2/24/14 due to incapacitating brain fog, hot flashes and extreme fatigue, so I wasn't able to do my job. We agreed to a 1 month vacation but that month is about up and I feel so good, now I don't want to take any of them again.
I can actually think and remember things again! So this is what life used to be like!
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I have been struggling with hip pain on Aromasin so I decided to start taking Boswellia in the morning half an hour before eating. Joint pain is reduced by a good 80% and I am hopeful will stop altogether. I am also now taking liposomal curcumin which also has anti inflammatory effects....I was so bad in mornings it was difficult to turn over in bed, now I get up almost without thinking about it!
Boswellia does not work immediately, but i noticed the difference after about 10 days.........just one pill a day.
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Thanks, Lily55, I'll keep that in mind.
I now cannot take NSAIDs without suffering nausea. My MO gave me anti-nausea med in case I had to take them. Acetaminophen doesn't do much. I'm trying the gin and golden raisin cure now. I've been testing the level of pain with and without gluten in my diet. It is much less if I avoid it. The day after I had two servings, I was hobbling around with pain and stiffness like a 95 year old lady. (Can't say 80 year old lady because my gluten free mom is over 80 and doesn't hobble like me.)
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doxie, I am allergic to NSAIDS, do be careful as for me, it started small with small upset tummy after an NSAID but each time I took one the reaction was worse, I know get a full blown asthma attach and doc was angry that I did not call 911
do be careful with them
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proudtospin,
Thanks for the warning. I'm a prime candidate for such an allergic reaction. Get hives from chocolate/cocoa butter, coconut, dye, and several meds. All gave me fair warning except for the chemo med.
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Doxie - you can take Boswellia three times a day, it is a natural anti inflammatory......I can´t take NSAIDS either due to a kidney issue. No side effects from Boswellia either.......
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Never heard of Boswellia, going to look into it! I've been having pain in my back, hip, arm and now my knees! I stopped the Aromasin, been off now for 10 days, not sure how long it would take to see improvement if the Aromasin is the cause! Trying to rule out things as the MO said he sees no reason for a scan! Just wishing the pain would go away so I can get on with life without worrying about Mets!
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doxie, I was surprised at all the things I used to take that are NSAIDs...like Pepto? somehow my system has changed and this started before the BC entered my life. I have it on all my med records as an aspirin can send me to the ER.
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