Life on aromasin
Comments
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I wanted to say hello and am a fellow exemestane user. I started on anastrozole in March of 2013 and had a wicked time on it the first 6-8 months with foot issues, stiff joints, weight gain and more. I took a one month vacation after the 8th month with my MO's approval, in order to give me a break and so I could resume with a hopefully better adjustment. It was much better after the break, and then in the summer of 2015, my MO switched me to aromosin to further help some of the SEs.
The weight gain on the drugs has been some of the hardest to cope with long term, but I worked with an endocrinologist on that from 2015 to now and have lost 32 lbs (and have another 20 to go and working to get that off this year). I became borderline diabetic 6 months after going on the AIs and now take medication for that, as well as Prolia shots for bone health.
I am curious if there is anyone here who has gone off the drug and what your experience is a month, six months, etc. down the line? When I went off during the first year for that month, the joint pain subsided within the first few days. I also remember loosing 10 lbs that month without changing anything else but removing that drug for a month. I know the drugs are cumulative and of course, last time I went off, I had been on them less than a year. I am reminding myself that as I come off these meds, it may take a bit longer for things to improve like joint issues, bone loss, etc.
I am also curious to see if my blood sugar issues go back to normal coming off the meds and my endocrinologist said my diabetic situation was secondary to the meds, but seeing it go back is a big question. There are lots of things I will be watching for and would love any insight from those who may still be here but have come off the drug and what your experience was?
For people just getting started, I will tell you the whole 5 year thing felt so daunting when I first started. Getting used to things and finding ways to cope that first year was the hardest part, the rest has just been part of adjusting to the new normal. Part of me feels a bit nervous to come off the meds knowing they have protected me, but another part cannot wait to be on the other side of this. My MO felt for my particular type of cancer, 5 years was the right duration.
I welcome any insight you have for me friends!
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HapB - I had a recurrence while on tamoxifen so they won’t let me go back on that which is unfortunate as I had almost no side effects on that one!
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poodlelover....so sorry about your recurrence. I’m wondering if the fact that you had no side effects on the Tamoxifen is an indicator of it not working. Any feedback
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Hi everyone. I have a question- I did the tamoxifen 5 year plan and because my dr finally got tired of hearing me b!?ch about the painful side effect switched me to exemestane (doing the 10 year plan) to see if that helped. Well it’s not. Painful SEs. Plus now I notice I’m angry all the time. Like want to go punch some random stranger because they’re wearing stripes and polka dots angry. This is not me. Is anyone else experiencing this or did and switched back to tamoxifen?
Thanks
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From Wkipedia
Exemestane is an oral steroidal aromatase inhibitor.....
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( BTW I didn't know that, til looking it up after seeing what HapB said. )
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Hi all. I'm new to this thread. I'm also about to start Exemestane after trying the other two AIs, but not for two weeks. Had an appt. with the MO last week, and because my knee joints have steadily gotten worse over the last three months, she wants to switch me. I tolerated Anastrozole for about 5 mos., but by 7 mos. I could hardly walk. Switched to Letrozole which I've been on for 15 mos.
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Karen,
Mood swings are quite common on all three aromatase inhibitors, so I'm not sure what role steroids play in those experienced while on exemestane. After a month or so on aromasin, I felt like I was PMSsed so I associated my moodiness with changes in my hormonal levels. Since I've been on Celexa, my moods are stable.
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Thanks for the info. I'm going to push through till I see my MO in March
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I've only been on Aromasin for 4 weeks. Letrozole gave me insomnia and made me an emotional mess. Arimidex made joints and muscles painful. And now the Aromasin is giving me major muscle pain in my neck, one arm and one leg. Plus it's drying me out so badly. I had a UTI after attempting intercourse that was very painful and still have aching in my pelvic area. I put an essential oil muscle relief blend on it earlier and finally got some relief. Going to use it on my neck, arm and leg at bedtime. I mix it in magnesium lotion which has helped some in the past.
We're leaving on vacation this Saturday and I don't want to feel like this for a month. I'm thinking of stopping the med for 2 weeks and see if I feel better. I still have my Letrozole. Tempted to try that and see if maybe my body just had a hard time with the very first AI and now that I've been on various ones for almost 8 months, I may be able to tolerate it. I had no muscle or bone pain on it.
I think I'll give my MO's nurse a call tomorrow.
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I've only been on Aromasin for 4 weeks. Letrozole gave me insomnia and made me an emotional mess. Arimidex made joints and muscles painful. And now the Aromasin is giving me major muscle pain in my neck, one arm and one leg. Plus it's drying me out so badly. I had a UTI after attempting intercourse that was very painful and still have aching in my pelvic area. I put an essential oil muscle relief blend on it earlier and finally got some relief. Going to use it on my neck, arm and leg at bedtime.
We're leaving on vacation this Saturday and I don't want to feel like this for a month. I'm thinking of stopping the med for 2 weeks and see if I feel better. I still have my Letrozole. Tempted to try that and see if maybe my body just had a hard time with the very first AI and now that I've been on various ones for almost 8 months, I may be able to tolerate it. I had no muscle or bone pain on it.
I think I'll give my MO's nurse a call tomorrow.
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VHS Miller, why are you switching from Letrozole? More SEs?
I've come to the conclusion that it's not really SEs from these AIs, it's just that they are doing their job. Removing all estrogen from the body can affect so much and cause all of the symptoms so many have mentioned here.
My question is, since there's no guarantee that on AIs that there won't be a recurrence, and nobody can tell me what the difference in recurrence is with or without AIs, is the diminished QOL worth it? I may live longer without cancer, but if I'm in pain all the time, is it really a fair trade off?
Frustrated.
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HapB, thanks for that predictor. I got 0.7% at 5 years and 1.7% at 10 years difference. To me that's not worth the diminished QOL and the osteopenia and increase in my blood glucose.
The only thing that is keeping me taking the AIs is that I had a lot of DCIS. I had a second surgery because my margins weren't clear on the first, and the margins were "close" on the second which was more extensive. The surgeon said he could go in again, but the RO was confident that the radiation would take care of anything left behind.
But my question is, how do I know I don't have DCIS in the other breast? Only the tumor was found on mammography and MRI, not the DCIS.
But I'm going to have the discussion with the MO when I see him in April.
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Nancy- any chance you had the OncotypeDX genetics test back when you had your surgery? If you have early cancer with no node involvement, you probably are a candidate for it (and given your surgery was last year, they may still be able to do it). That helps you to know about how the drugs can help you on the AIs, also for those who may benefit from chemo or not (you are past that, not a decision point there anymore). I think mine was around 15% reoccurrence if I did the AIs for 5 years. There were charts I got at the time, but don't find anything good on line.
Ask your MO about this. Also, I know certain kinds of cancer (like ILC) respond better to AIs than other things so sometimes it has to do with the type of cancer you have.
BTW, if you want some help with pelvic dryness, talk to your gyn about estrace creme. It is a topical estrogen creme that my doctors say is fine to use, and has really helped me with some of the same issues you have shared.
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JazzyGirl, I did have the Oncotyping...I'm a 14. I had IDC and DCIS.
I was told I cannot use Estrace, which I have used in the past with great results. He said ANYTHING with estrogen in it, I shouldn't be using. While "topical" it still can get into the bloodstream.
PremenoDuo has been suggested to me by women on another BC board here. It's costly and comes from Germany via Amazon. They have had great results with it. I don't want to start anything new prior to vacation. In fact, I'm going to call my MO's nurse and ask if I can take a vacation from the Aromasin while we are on vacation if the SEs continue or get worse. He told me that being in the warmth and in the sun and walking the beach every day would probably be the best medicine. I asked him if he would write me a prescription so I could take it off on my taxes.
I wanted to mention that I have found some relief for the muscle pain using magnesium lotion with an essential oil from Edens Garden called Muscle Relief mixed in. I'm hoping that it continues.
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Nancy- interesting about Estrace. My first gyn told me to use it sparingly. My current gyn (other retired) said the same. But they all have varying options about this and many other things, so follow your recommendations and ask for other help.
There is something else my gyn talked about with me, but not going to do, but thought I would share with you and will do so on PM.
I bet your MO will let you take a break. My MO did when I first started to help me adjust (off it a month) and they told me it is cumulative and going off it for a bit does not do major harm. I have been on it since I took my vacation end of 2013 the year I started.
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Jazzygirl, I did take a 2 week break between Arimidex and Aromasin. Doctor said one week, but I didn't want to start a new med the week before Christmas, so I waited 2. My pain went away and I felt my normal self again. Felt ok until about 3 weeks into the Aromasin and the muscle aches are starting all over again. The struggle is real!!!
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Nancy- oh sister, the struggle is real. I went on arimidex to start in March 2013 and made me so stiff & sore and my feet hurt so bad that I could barely walk. From May to Nov was the worse, and begged for a break end of the year, and he told me to take anywhere from 2-4 weeks off. I think I took 2 weeks off as I now think about it, and to your point, felt normal within a week. I hated going back on them, but did do better after. Took a good year or two for it to not be as noticeable (either it improved or I got used to it or both?) My MO changed me to Aromsin in the middle of 2015.
I know you are just getting started on these meds and will say you will get adjusted to them by taking breaks, trying different ones, etc. I know it feels really hard to get your head around being on these five years or longer. I remember telling my MO during that break time that first year that I did not feel I could survive 5 years on the meds. But I knew it was important to do them to as part of my medical care. We worked together to try different things and I am almost to my five years. I will say it has for sure been the hardest part of my treatment.
I will be coming off these AI meds 4 days before my 58th birthday and it is going to be the best present I get this year. I will be seeing my MO friday and will check in to be sure the plan is still the same to finish in March as planned. As you know, the recommendations on this change all the time.
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Jazzygirl....yes, the recommendation is now up to 10 years. When I read that, I wanted to cry. And honestly, I'd have to see some strong evidence for doing that. Frankly, it's getting to the point where I trust no one and think that the pharmaceutical companies have more weight on this than the patients taking the pills.
I am thinking taking time off every now and then might be the way to go....hope I get the go ahead from my MO.
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Nancy- my MO said for my particular cancer type (Luminal A), the recommendation is 5 years for an ER positive/ slow growing cancer. He said that the last two visits in 2017, so we will see if that is still what I hear on Friday. I am prepared if I have to do them longer, I will. I am used to it now, but will probably end up on bone health shots for the long term.
When I began the AIs in 2013, I saw two MO's with differing options about duration. My current MO said we would start with 5 and decide closer to the time if I was going longer.
Part of me wants to be done, but part of me knows they are protecting me too. Slippery slope!
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Nancy, yes, my MO had me stop the Letrozole because of terrible knee joint issues. In late Sept. my knees just suddenly got really bad and it became hard to walk, so I started using a cane. I don't know why, but I didn't suspect the Letrozole even though I had awful trouble with Anastrozole, I guess because I had done well on it up until then. So, after two ortho dr. appts. with shots to my knees each time and $500 for orthotics, I find that my terrible knees were caused by the damn Letrozole. I've been off it for almost a week now, and tonight, I'm noticing a big difference in how my feet, legs and knees feel. I'm with you, thinking a vacation from these meds now and then would be a good thing, and probably won't adversely affect their mission. I'll start the Aromasin in a week, but I'm supposed to go to Kyoto, Japan in April for work, so if I really start feeling bad again, this time I'll know it's the AI and will ask the MO for a break for my trip. MO originally said 5 yrs. maybe 10 for me, but now I'm not so sure I'll get to 5 yrs. and I bet she's not so sure now either.
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Greetings! I took femara for approx one year and then switched to exemestane. I primarily switched due to hair loss but have not had any better luck with exemestane in that regard. It continues to be my biggest concern. I did have considerable joint pain but it has eased and is very slight now. I am taking a calcium chew each day along with 3000mg of Vit D, glucosamine chondroitan, magnesium, Vit C, fish oil, and Biotin. I take them at night and feel this combination is working well. The exception being my hair. Ugh. I continue to thin and it is such a worry and constant reminder of the struggle. That, and weight gain. Poodle - you’re situ sounds much like mine. Hang in there and continue to work with your doc to find what works for you. Yoga is a great help too. Best to all!
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BTW, I take this supplement which helps with joint pain (puts the moisture back in to the joints and skin that gets lost on the AIs). My MO approved it, but please be sure if you want to try it to ask your MO first he/she thinks it is okay. Some supplements not recommended for us post cancer ER positive gals and as we know, different docs have different opinions about many things we are told to do/avoid.
I get mine at Sprouts or Whole Foods but have included a link to Amazon in case you don't have a health food type store near you!
https://www.amazon.com/Doctors-Best-Hyaluronic-100...=sr_1_1?ie=UTF8&qid=1516806208&sr=8-1&keywords=doctors+choice+hyaluronic
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I have had issues with hair loss ever since menopause, but noticed since the AIs, that I take a large clump of hair out of the shower drain every other day. I'm also having trouble styling my hair the way I like it. Ugh. This whole QOL thing.....
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I'm new here too. I was on Arimidex for 2 years, but switched to Aromasin due to joint pain from the chest down. I now have 7 1/2 years to go and that feels like an eternity! The lower body pain is almost gone, but now I have 2 swollen wrists, and my dominant wrist is very painful. I feel like it's a pick-your-poison situation. I'm a pianist which makes it extra upsetting. I always wanted to go back to school to get my piano degree, but I don't see that happening now. Does anyone else have wrist issues on Aromasin? The only thing that scares me is ending up with permanent nerve damage due to mis or undiagnosed underlying conditions. I can't be going to the doctor for every friggin problem that pops up or I'd never leave the waiting room! If it's a just a matter of coping with the pain, I can deal with that. I see my Rehab Medicine specialist next week (for a variety of other joint problems) and I'll have him look at it. I don't want another EMG because that was torture!
If anyone else has had experience with this, I'd love to hear about it!
Also, I have bald spots all over my head. I'm going to go wig shopping. it's been upsetting, to say the least.
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cat lady - wow! I cannot believe you are having the same issue as I am. I was on tamoxifen for five years and just switched to aromasin in November and for the past week I’ve had such horrible pain in my wrist that I’m seeing a neurological chiropractor to help me with that. I had have all the joint pain since chemo and being on the tamoxifen and I hoped that switching would make them go away but it didn’t. I thought it’s because I was doing so much needlepoint the past few months that maybe was carpal tunnel. It’s nice to know that I’m not the only one. I feel like I’m the odd man out because people I know that Have had breast cancer do not have as many as the side effects as I do. It’s a little disheartening. So yes cat lady you’re not the only one I to have such horrible joint pain in my wrist that it goes up my arm to my elbow and sometimes even to my shoulder. Hopefully we can get through this
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Hi there- if aromosin does not work for you, can you ladies try for one of the other AIs? I started on the generic for Arimidex (I found that one harder than Aromosin), but everyone is different? My MO always has said it is finding something you can tolerate so you can get through the five years or however long you need to go?
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exemestane is so much easier for me than anastrozole. I did notice that my pharmacy switched manufacturers and I am having terrible stomach problems. Not sure if it's related. I was on Teva.
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Molly- I agree with your experience. I have noticed things change as the generic manufacturer does too.
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Hi all!
Although I don't post much, I am a frequent lurker on this site and it has been a life saver for me during the past 5 years. This April will make 2 years since my mom has been on Exemestane. Almost two years ago she had her ovaries removed to ensure she was post menopausal after her blood work during a routine visit with her oncologist showed a rise in her estrogen levels. So far so good on Exemestane, minus the common side effects but of course that is to be expected and she doesn't complain much about that. The past few days she hasn't been feeling well. She has been experiencing diarrhea and has just had an overall "blah" feeling. So far today, no diarrhea but she just feels overall crappy. She probably just has a bug or ate something that didn't sit well with her. Last night before bed for the first time since her ovary removal, she experienced a clump of discharge with an extremely slight tinge of pink to it. It hasn't happened again throughout the night or today, but I can see she is concerned. Was just wondering if any of you have ever experienced that? She just had a follow up with blood work with the oncologist last month and everything was good, but of course my mind goes to a dark place and I'm scared this has to do with breast cancer. She is going to email the oncologist tomorrow but just thought I would post here for now in case someone has some insight. Thank you all
Jessica
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