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Exemestane (Aromasin)

My MO recommended I leave letrozole because of SE and start exemestane. Can you please share your experience with this medication? Tips?

Good news:

Exemestane, a synthetic steroid drug widely prescribed to fight breast cancers that thrive on estrogens, not only inhibits the production of the hormone, but also appears to protect cells throughout the body against damage induced by UV radiation, inflammation and other assaults, according to results of research by Johns Hopkins scientists.

https://www.hopkinsmedicine.org/news/media/releases/potential_for_added_medical_benefits_uncovered_for_widely_used_breast_cancer_drug

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,650
    edited February 2022

    Lily,

    I have been on all of the AI’s and unfortunately always end up with the same se’s. For me, it is always joint and bone pain. Moving (I got a new dog in October and she loves to walk) , Aleve during the day and cannabis at night is my current strategy. Yoga helps as well.Take care

  • lillyishere
    lillyishere Member Posts: 769
    edited February 2022

    Thank you exbrnxgrl. Do you take it in the morning or night? Have you seen any difference in the type of food you take it with? How many years have you been in AI? Seems like over 10 years? What are the longest break you had between AIs?

    I drove by the Bronx a couple of months ago on my way to NYC :)

  • betrayal
    betrayal Member Posts: 1,986
    edited February 2022

    Hi Lily: I tried Arimidex first and then Femara (Letrozole) for more than a year each and really had severe side effects affecting my joints. My MO had been encouraging me to try the Exemestane for nearly a year before I finally caved in and agreed. It was the best decision I have made and I could kick myself for waiting so long. I have been on it for nearly 2.5 years. Each of us has had different experiences with AI's so what works for one doesn't necessarily translate to success for another but I have had minimal side effects with Exemestane. You need to take it the same time each day and since I have a number of prescribed meds and supplements I am taking mostly in the AM, I opted to take it with dinner when I have the least amount of pills to swallow. The only side effect that I have is mild swelling of my feet and ankles but the MO prescribed a mild diuretic which takes care of that. So I am hoping that your SE will be minimal and that this AI will help you. Good luck.

  • lillyishere
    lillyishere Member Posts: 769
    edited February 2022

    Thank you Betrayal. I read that needs to be taken after a meal so dinnertime would be the best time for me as well. How long will you be taking AI for?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,650
    edited February 2022

    Yes, I’ve been on AI’s for a bit over ten years. I have never taken a break at all! I take mine before bed so food is not a consideration.

  • hersheykiss
    hersheykiss Member Posts: 627
    edited February 2022

    LillyIsHere, my MO and pharmacist both told me to take exemestane after a meal. I take mine after breakfast. My MO also said that based on her patients' feedback, exemestane seems to have the fewest side effects. I'll be taking it for as long as my bones hold out.

  • quinnie
    quinnie Member Posts: 113
    edited February 2022

    Hello everyone. I was on Letrozole for 18 months. First off had hot flashes that I could tolerate but a couple months ago the joint pain started to really interfere with my daily activiites. I ached all over especially my legs. Felt like I had a fever all the time so I finally called my MO who took me off Letrozole for 2 weeks. It was wonderful. No hot flashes or joint pains. She put me on Exemastane and so far so good. Only mild hot flashes and some mild joint pain. The cost is much higher but if the SE are milder I will pay. I only have 3 and a half years to go. Hopefully things won't change and I can tolerate this drug. Its better than another BC.

  • lillyishere
    lillyishere Member Posts: 769
    edited February 2022

    Thank you Ladies.

    exbrnxgrl, what I learned with letrozole is that taking before bedtime made my morning joints very painful, and moving letrozole in the morning reduced the joint pains probably because I am active during the daytime. Helped with insomnia too.

    HersheyKiss, I want to take it in the morning too but I can't make myself eat breakfast. I will aim for lunchtime and hopefully, it won't interfere with work meetings. Other than exemestane, what else do you take? I'm in Zometa infusions every 6 months for 3 years.

  • betrayal
    betrayal Member Posts: 1,986
    edited February 2022

    Lilyishere: With Exemestane it is recommended that it be taken the same time every day so after dinner worked best for me. I had ILC as well as IDC and DCIS so I will be on exemestane until June 2023. ILC has a tendency to reappear after 5 or more years so the MO and I agreed on a 7 year AI stint. Since I have minimal SE's (and yes it is so much more expensive than femara) I am willing to pay for it to prevent recurrence. Mammo's do not routinely pick up ILC, my original lesion was not palpable and the original bx only identified IDC. It was the surgical bx that detected the DCIS and ILC as additions to the IDC. I'd rather be safe than sorry so another almost 2 years is doable in my book. Good luck.

  • hersheykiss
    hersheykiss Member Posts: 627
    edited February 2022

    LilyIsHere, I receive one annual Zometa infusion. I have very low bone turnover, and my MO doesn't want it lowered more with two infusions per year. Other than Zometa, I take gabapentin before bed for sciatica. My primary side effect from exemestane is dry skin, so lots of moisturizing creams (not lotions) for me.

  • lillyishere
    lillyishere Member Posts: 769
    edited February 2022

    HersheyKiss, thank you for getting back to me. How do you know that you have a very low bone turnover?

    Betrayal, oh I am another one blessed with sneaky ILC. Our recurrence rate goes up the first 10 years I'm told from my MO. For us who started young, 10 years later we are still on the young side. My MO avoids the question of how many years I'm going to be using AI. Rightfully so he says let's make the decision when the time comes since new data comes available. But for now, he gave me 5 weeks off letrozole for my body to recover before starting exemestane. His fear is that I will feel so good that I will refuse to start exemestane but I told him that the fear of recurrence is at a very high level compared with SE of the medications. Thank you for letting me know that exemestane can be better.

  • hersheykiss
    hersheykiss Member Posts: 627
    edited February 2022

    LilyIsHere, my doctor runs a serum CTX (C-Terminal Cross-Linking Telopeptide) test that measures the rate of bone turnover.

  • jrnj
    jrnj Member Posts: 407
    edited February 2022

    Lilly, I started with exemestane and had horrible swelling, pain, insomnia and headaches. But I was also on lupron and looking back I think I was still recovering from chemo and radiation. I tried anastrozole, then arimidex. At first better then horrible arm weakness and pain in addition to aches, agitation and insomnia. Been on letrozole for a yearbut still miserable pain night sweats hot flashes Insomnia. I take them every other day and have had several breaks for surgeries or just because. I'm thinking exemestene may be different now for me 1.5 years later. Let me know how you make out. Meanwhile I'm on a 3 week break due to surgery. I quit my sleeping pills that I've been taking for 13 years. I will restart letrozole and try a new med amitriptylene supposed to help with night sweats sleep and arthritis. It is an antidepressant which I hate an don't have high hopes but we'll see.

  • lillyishere
    lillyishere Member Posts: 769
    edited February 2022

    Good to hear from you JRNJ. You had such a challenging road and AI on top of that makes it even more difficult. I understand that letrozole is the best AI out there but in my case while some SE were getting better, my energy, memory, and insomnia were rapidly changing in the worst direction. I will be starting exemestane soon and I will let you know how is it going to work for me. Today I read that at 8y, this is just when ILC recurrences start to take off. That means that we will be on these meds forever. Sigh!

  • gb2115
    gb2115 Member Posts: 551
    edited March 2022

    Reviving this topic---I'm trying to figure out why it's recommended to take exemestane either on an empty stomach, or "After" a meal, but not during a meal. I just did the Walgreens pharmacy chat and all they would tell me is that the manufacturer says "after" a meal. I get heartburn with meds a lot, and like to take things either before or during a meal...it's like the pill gets buried somehow in the food and doesn't make me reflux as much. But I can't find anything that says this is ok with exemestane. I really thought the pharmacist would say it's ok.

    Sitting here with heartburn, with Pepcid not working, two days into exemestane. I have Rx omeprazole from GI that I haven't used yet. Isn't that a problem with osteoporosis? I just had my first Zometa for osteoporosis yesterday. All of these things to fix things, causing other problems...

  • hersheykiss
    hersheykiss Member Posts: 627
    edited March 2022

    My doctor and pharmacist both advised me to take exemestane "after a meal" and not with grapefruit or grapefruit juice. Also, they advised taking it about the same time every day. My package insert recommends contacting the doctor if experiencing heartburn.

  • gb2115
    gb2115 Member Posts: 551
    edited March 2022

    Lol, curious me wants to know what would happen if I took it right before my meal!

  • lillyishere
    lillyishere Member Posts: 769
    edited March 2022

    I read somewhere in order for this medication to be absorbed properly, it should be after the meal. Today is day 2 and I took it towards finishing my meal since I don't know what after a meal means, directly or a few minutes after. So, in the last bites, I got exemestane with lots of water. I am taking it at lunchtime. From letrozole times, I learned earlier in the day the better. My theory is that at nighttime, the medication just sits there and you can't flush it with water or faster metabolism like you can do it during the day.

  • gb2115
    gb2115 Member Posts: 551
    edited March 2022

    Ideally I would like to take it halfway through my meal, so that food buries it in a way. Sometimes that helps me with heartburn. I'm on day 3 of exemestane and the heartburn settles in about an hour after I take it, despite Pepcid. But I can't find anything that says it's ok to take "during" the meal. I don't want to have to go on a PPI if I don't have to, but I want the exemestane to work.

  • lillyishere
    lillyishere Member Posts: 769
    edited March 2022

    What is PPI if you don't mind me asking? If it doesn't say take it on empty stomach, with a meal or after the meal is not a big difference. I am on day 3 of exemestane as well.

    How many years will you be in exemestane?

  • hersheykiss
    hersheykiss Member Posts: 627
    edited March 2022

    This information was posted on drugs.com and updated May 6, 2020.

    • Aromasin may cause nausea or indigestion which is why it is recommended to be taken after food.
    • Although food, or the lack of it, can affect the absorption rate of Aromasin, this does not translate into any differences in effect.
    • If you prefer to take Aromasin without food, and you do not get nausea or indigestion from it, you can take it on an empty stomach.
  • gb2115
    gb2115 Member Posts: 551
    edited March 2022

    Yeah, I'm thinking it probably doesn't matter. I might try it in the middle of breakfast tomorrow and see if it makes a difference.

    Lilly...ppi is proton pump inhibitor, so something like Prilosec. I have some I can take but am hesitant to take it. I took it once for a month and it was very hard to come off of. However, I might have to switch to it.

    That's funny that we started exemestane the exact same day!!! I don't know how long I will be on it, MO hasn't specified that I can recall. Since this is for a recurrence, probably for a long time I imagine.

  • jrnj
    jrnj Member Posts: 407
    edited April 2022

    Lilly, How is the exemestane going

  • lillyishere
    lillyishere Member Posts: 769
    edited April 2022

    I hope you Ladies are enjoying the spring. Jrnj, I am on the second month of exemestane and I am doing so much better than letrozole. I am keeping my fingers crossed because letrozole SE hit on 5-6 months and I am nervous if exemestane would have the same effect. For me, these medications are like drops of poison, accumulating and making me sicker by the month. However, I don't want to complain about exemestane because I can handle so much better. What are you taking right now? Hw are you doing?

  • jrnj
    jrnj Member Posts: 407
    edited April 2022

    Lilly, So happy for you that you are doing better. I'm on letrozole now. I did exemestane/lupron first, only lasted 6 weeks, then anastrozole about 6 weeks, then arimidex about 2 months, than letrozole for about 14 months. And I only take it every other day. My Dr. said he sees less side effects with exemestane but I was in a lot of immediate pain and had headaches. I'm thinking of trying it again now that I am no longer on lupron. And my body was probably still recovering from chemo. I also feel the longer I take them the worse it gets. I've had several long breaks for surgeries and recoveries and hate going back on them.

  • lillyishere
    lillyishere Member Posts: 769
    edited April 2022

    Lupron shots were brutal to me! AI on top of lupron were double trouble! I am keeping exemestane as long as I can but so far so good. If you decide to take exemestane it has to be after the meal and as early in the day as you can. My theory is the metabolism is higher in the morning which can process and get rid of the medication compared with nighttime. Let us know what your MO thinks about this change.

  • twolutzjo
    twolutzjo Member Posts: 18
    edited May 2022

    Hi All,

    Haven't been on in awhile. Just my input. I was on letrozole for 2 years and then wham out of nowhere the SE began. I was in lots of leg pain and started to get depressed. Talked to MO and I stopped it. In a week I was 100% better. Now am on Exemestane(Aromasin). Have been on it for 6 months and so far so good. What I have learned through these forums is that SE can hit at any time. It took mine 2 years to kick in. But I am thinking positive and enjoying everyday that I have.

  • quinnie
    quinnie Member Posts: 113
    edited June 2022

    I had the exact same response. 2 years nothing but hot flashes then the leg pain started. I switched to exemestane and so far so good. I would like to hear if any of you had experiences with increased blood pressure, increased lipids and increased blood sugar. I had no issues prior to taking letrozole or exemastane and now have all 3. I am pre diabetic. No family history, I exercise and really don;t eat too many carbs. Its hard to complain since so many of you have had a much worse senerio with chemo etc.

  • lillyishere
    lillyishere Member Posts: 769
    edited June 2022

    Month 4 on exemestane. So far so good, just minor indigestions, the bottom of the feet pain, etc but nothing compared to letrozole. I have a question for you all. Since the latest news is that cancer is very active and goes into the bloodstream during sleep, do you think changing the medication time to bedtime may be more efficient on keeping cancer under control? Have you heard from your MO, nurses, articles if this change can make a difference?

  • mikamika
    mikamika Member Posts: 242
    edited July 2022

    Lilly,

    I am so glad that you are doing well on Aromasine. How is your memory and mood? Sometimes I feel like Arimidex drains all my stamina, so I will talk to my MO about changing meds.