Life on aromasin
Comments
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Hi Steph, I replied to your other posting. Some of the other women might have more suggestions. I really think you need to talk to your onc, though!
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Hi all, new here, I've been reading through some of the replys and I am amazed! so glad to know I'm not alone! I took Tamoxofin and had such horrible bone and joint aches, I couldn't take it anymore, Doc put me on aromasin, I've been on it for 3 months now, and side effects are much better, but I've noticed the arm/elbow/hand aches and pains, I thought I was just doing something wrong! I do alot of sewing and fine work with my hands, and I've found its really gotten in the way. I take aleve to help with the aches, but its just been strange that its just my hands/arms.
Last appt she put me on effexor as well, as I could just care less about anything and would rather sleep then do anything at all. She says that isn't good, try effexor, but I'm not noticing a whole lot of improvement there either. (been on it 3 months as well)
I should add, this is my second go round with Breast cancer, had it in both breasts in 2006, bilateral mas/reconstruction, 10 years cancer free and it came back. All of last year was surgery/chemo/radiation the works, finished all of it in Dec 2017 and declared "cancer free" so now trying to get back to some semblance of real life again. I really am struggling with the desire to do anything, not really depressed, just fatigued and have a real "give a crap" attitude about everything. any suggestions?
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Has anyone had belly pain and ovarian pain while on Zolaeex and exemestane
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Onejeno---Google magnesium and depression. While I don't struggle with this a friend of mine does and the other day I came across some new studies showing that daily magnesium really helps with irritability and depression. It also helps alot with joint pain from AIs as does turmeric. I take both and my joint aches were much better. Maybe that's something that would help you.
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One- I have not had a re-occurrence, but felt much like that for the first few years after my initial dx and treatment. I just went through the motions for a long time going to work, taking care of my home, etc. I totally lost my joy during that time. I really get this.
What I will tell you is that your body may just need more time to heal from things. I found as I felt better, more things I enjoyed came back in to my life. It just takes so much longer. Not months but years.....
Simple pleasures may help for now. Buying your favorite coffee, watching upbeat movies (nothing downer please) enjoying a good book or some poetry. I like daily readers of various types. Spend time with people that are good for your soul. It will come back, it all just takes time friend.....
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Bellabeans - I only have when I haven't taken the exemestane with a meal.
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I've been taking 500mg of! magnesium for months and it hadn't helped my aches and pains nor my disposition.
I, too, am in a funk. I just don't care about making meals or cleaning and my hobby of crochet doesn't keep my interest, not to mention making my hands ache.
I had been sleeping better until last night when I couldn't fall asleep until after 3am.
I just want "me" back again.
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Oh Nancy
. Must be so difficult on so little sleep. Hope you do better tonight, or that you can cat nap in the day if nights prove too difficult.0 -
Nancy618---I hear you about losing interest in things you once loved. Before BC I was a voracious reader going through as many as 4 books a week. I also loved going to the movies, especially alone. I'd do my best to go once a week. Since BC, which was diagnosed just over 5 years ago, I bet I've read 10 books IN TOTAL! And I bet I've seen another 10 movies! I have found that reading just doesn't hold my interest. I'm very sad about it and start books on a regular basis only to never finish them which I NEVER used to do. I do still read some but mostly things like Readers Digest or magazines. It's like my brain can't concentrate long enough anymore. I have picked up other habits, mostly good, the main one being that I go to the gym every day. Before BC I'd never set foot in one. And I've definitely learned how to take care of myself by getting massages or just taking some quiet "me" time. And last year my sister and I got together and bought a little old cabin at the lake so now I will be spending my summers with her and her family at my most favorite place on earth! So I can't say it's all bad. Just makes me sad for the original me.
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Hi ladies, I am very struggling with this now and my onc is not able to give me answer yet!
I have been on Lupron for 1.5 years and Aromasin for 8 months. My estradiol was 17 when I started Aromasin, now it is 21 (checked the day Lupron was due)! I know Lupron is working but my E2 level is definitely not low enough! Am I in menopause now? I have seen many places online E2 < 28-32 can be considered postmenopausal or it has to be under 10? I am just afraid I am under incomplete ovarian suppression and AI is not working well for me now.
I am only 31, just got married and have no plan for baby. Should I consider oophorectomy to be in real menopause so I can keep being on AI?
Thank you so much! I am not able to find answer anywhere else, hopefully anyone could give me some advice! Thank you very much!
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Hi Steph: I found a link that charted estradiol levels (see below) and it shows that <36 is menopausal. This would suggest that your Lupron+AI are working quite well, but if you have doubts you should share your concerns with your Doc. BTW, you will never get a zero (0) estradiol level because of residual estrogens that will always be circulating in your bloodstream. It is the lowering of the estrogen levels that is important in eliminating our BC. Best of luck!
https://www.earlymenopause.com/information/tests/
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Met with my MO today and after considerable research decided on Exemestane (from manufacturer Greenstone LLC) as my AI of choice. I have always tolerated steroids well and this AI seemed to be associated with fewer SEs compared to others. This particular generic (Greenstone) is the only one of the 5 that has an identical formulary to Aromasin. It can be found at Walgreens and some mail order pharmacies (ie, Caremark).
Is any one curious why only the 25mg dose is available despite the differences in our body sizes? This is what I found in my research.
There are 2 main studies that looked at different doses of Exemestane (EXE) and their effects on numerous parameters, especially estrogens. Doses of 0.5 - 800mg EXE were tested. To summarize, the 0.5 dose was mostly ineffective. However, 5-25mg doses produced similar inhibitory effects on estradiol, estrone, etc. Women's body weights were not included in data interpretation, although approximately 50% of the women in one study admitted to being overweight. One study gave women one dose of 0.5-800mg and measured estrogen levels over time. Just one dose of 5-25mg inhibited estrogen levels for 3-7 days. In the other study, women took EXE (5-25mg) every day and maximal estrogen inhibition was achieved after 5-7 days and maintained for duration of study. Interestingly, no major SEs were mentioned, except for GI disturbances.
So, why is everyone taking 25mg? This is the dose that produced maximum effectiveness in all women, irrespective of body size.
Me, myself and I am going to try to quarter that little pill and start with a 6.25mg dose, as I am a skinny mini. If no SEs will up to 12.5mg. I will start with taking daily for 7 days and then will adjust frequency depending on how well I tolerate daily dosing.
I'm thinking that 25mg daily was easier to prescribe than 'every 5 days'. Also, 25mg was 'one size fits all'. Wondering if reported SEs in some ladies is because of too high of a dose for some. Food for thought...
Here are the links:
https://www.ncbi.nlm.nih.gov/pubmed/7547212
https://www.ncbi.nlm.nih.gov/pubmed/1394219
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Imurphy, thank you very much your reply! Actually estradiol of being 15-20 (pg/ml) on AIs + OFS combo might be a little high ! I have read some studies that most of the women on AIs their estradiol get to under 10 or even 5, because AIs is able to lower estrogen level down even more. Those studies also indicate that if pre-menopausal women who are on AIs+OFS combo could not reach under 10 pg/ml of their estradiol level, they should be concerned about incomplete ovarian suppression, which will result in ineffective AIs.
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Lala1, I envy you going to the gym every day. I need to exercise, but I hate it. I do yoga once sometimes twice a week but that's hardly exercise. I know it's good for us and the best way to stay cancer free. I just can't even talk myself into taking a walk.
And like you, I used to be a voracious reader, though not quite as voracious as you. I just started a borrowed book on my kindle and have 14 more days to read it. I'm on page 40.
I am finding that I am more scatter brained. I always had a tendency toward what I thought might be adult ADD, but it is way worse now. I can spend an entire afternoon puttering around doing a lot of little things and never accomplishing anything.. And the fatigue is real. I've been sleeping better, over 7 hours, but I still have no energy.
I'm taking exemestane from Walgreens. I'd check the manufacturer but I'm in bed and the bottle is downstairs. I'm wondering if taking it every other day might help the SEs. I see my MO in 18 days. There's lots I want to discuss with him.
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Nancy618--I hear you on being scatterbrained! In all honesty, it got better for me once I started working out, even just taking a walk every day. For some reason, exercise helps me focus. Don't know how it works but it does! Maybe just start with one day and see how it goes?
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I imagine stepping up circulation and oxygenating the brain is the factor. I know what I need to do. I am just lazy!
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I think I have De Quervain's tenosynovitis. I started developing symptoms about a month ago and it's been getting progressively worse. I'm in the middle of a two week break from aromasin in preparation for my DIEP flap reconstruction next week, and I thought I'd get some relief during the break but so far, nope. Maybe it's the medical menopause that's the cause, which sucks because I'd like to think that another medication will have less side effects. I'm not in a hurry to switch meds yet, though. Better the devil you know, etc.
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I'm sure we all know this, but I was looking at it again this morning after getting out of the shower and being overwhelmingly fatigued.
I consistently have the first five and some of the others sporadically. The hair loss is really bothering me. And it's thinner and full of static. I have an essential oil recipe I'm going to try.
See my MO in 10 days. I have a lot to tell him!
How is everyone else doing?
Common side effects of Aromasin include:
- hot flashes,
- headache,
- hair loss,
- joint/bone/muscle pain,
- tiredness,
- anxiety,
- unusual or increased sweating,
- nausea,
- upset stomach,
- diarrhea,
- dizziness,
- depression, and
- trouble sleeping (insomnia).
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hi ladies, I have just switched to aromasin after a year on letrozole, with really bad SEs. I was just plodding thru and was wondering how I was going to get thru the next 30 years. I was off letrozole for 3 weeks and I totally feel like myself again! I am seriously thinking about not taking AI s if I get SE s on aromasin.
Thanks for all of your insights!
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As I described in my post about a week ago, I have been taking 6.25mg exemestane (25mg pill split twice, from Greenstone). Only side effect so far has been an occasional night sweat which lets me know it's working. I am now going to to alternate 6.25 and 12.5mg doses for the next couple of weeks and see how that goes side-effect-wise. My goal is to find the best dose for me.
The links I included in my previous post are the dose-response scientific data that suggest that lower doses of exemestane are as effective as the 25mg dose. Pediatric doses of many meds work better for me than adult doses, so I'm starting with low doses of exemestane and slowly working up to find my optimal dose.
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Hi folks- well another insight having come off of the AIs. My hair is thicker again. I guess I had not noticed how much it had thinned through the five years. It is finer anyways, so perhaps not as noticeable as someone with thicker locks. But after being off the meds five weeks, I noticed the top of my hair is suddenly fuller. I talked to my hair stylist today and got my hair restyled (four inches taken off) and it looks much better.
I never told my stylist about my bc, kept it private from many for business reasons (self employed), but I did loose a lot after my surgeries in 2012. She knew I had some things going on, but also worked with me to help my hair look okay during that time. Through time things were better but of course, then the AIs came in to play. I was on the anastrozole for 2.5 years and the aromosin the duration.
Nancy- I had all of those at one time or another on the AIs. I never had the fatigue, but many women have talked about it on these threads. I am glad to be off the meds but do wonder what is going on inside my body now.....
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2FUN that's exactly what I'm going to talk to my MO about in 10 days.
I just can't do this anymore. I hurt all the time. I'm taking way too much ibuprofen just to get through the night and be able to sleep. Now I've started to need it during the day. The hair loss is awful. Just started getting headaches. And fatigue like I had during radiation. I'm dry all over. My emotions are all over the place.
The problem is that ALL AIs have basically the same side effects. It's because they're doing their job. That's what lack of estrogen does. So I've cycled through Letrozole, Anastrozole, and Aromasin. They're all the same.
So, yes, I'm ready to quit taking them. I feel like I'm going crazy.
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Nancy, I can totally relate! See below what helped me with the joint pain.
Onejeno - it's been a while since I was on here so I haven't read all the replys, however, I also had elbow/wrist/arm pain when I started Aromasin. I do a lot of embroidery, and I was SO depressed when it became difficult. I would just sit and cry. I had been on Arimidex which caused a ton of lower body pain. It stopped when I started Aromasin and switched to my arms, so I went back to Arimidex. I need my hands more than my feet/legs. An oncoloigst recommended taking taurine to a friend of mine and it has improved my pain DRAMATICALLY! It can't hurt to try and is safe. The only place I can find it is at GNC, but it's not expensive.
I relate to the depression, and everything else people are talking about. It didn't really hit me until treatment ended. I was on autopilot during treatment because my goal was only avoiding death, but once I was declared cancer free, the impact of everything just hit me all at once. I heard a doctor said that my body had just been assaulted which felt like a very accurate description. I take antidepressants, anxiety pills and see a therapist. I think I would have had a breakdown without that. Actually, I KNOW I would have!
Btw, when they tell people that the length of time it takes to recover is the same as the length of time you were in treatment, they're wrong. It takes longer, but it will get better. Maybe it depends on the kind of treatment someone has, but I had 16 chemos, biltetaeral mastectomy with 2 recon revisions and 6 weeks of vacation. It's taken a while to bounce back, but I think it's getting better, knock on wood.
Hang in there
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My BS told me during my treatment that he considers all his patients as having the potential to have PTSD so he tries to watch for the signs and warn his patients what to look for. I totally agree with him. PTSD was exactly what I felt like for so long. But with good doctors, good friends and family, exercise, and all the advice from the ladies here, I've been able to get through it all mostly intact.
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Anyone have any insight into exemestane being a steroid, but other AI s are not steroids? Any concerns about long term steroid use?
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I lasted 5 days, not 5 years. Good luck to you all and hope you can stay on for the 5-10 years with minimal problems.
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I did a year on letrozole before I switched. Its feels like a crap shoot sometimes. It would be an easier decision if I was 30 years older!lol
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FYI: HapB has never been on aromasin. Take her advice on this issue with a grain of salt.
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I found this today and saved it but didn't read it all. It's from 2001, so not sure if it is accurate.
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2FUN, I'm 66. That is why I'm considering stopping the AIs, considering the side effects I'm having which I consider debilitating. It's not like I expect to live another 30 years.
I know my MO will suggest tamoxifen as that's the only one I haven't tried either. Maybe I'll give it a shot along with walking if winter weather ever goes away.
Arimidex gave me terrible lower leg pain also. Aromasin gives me thigh, hip, and upper arm pain. Letrozole made me crazy on top of not being able to sleep.
I'm going to look into taurine.
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