Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Life on aromasin

1…157158160162163…187

Comments

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited April 2016

    Barb - sympathy/empathy.

  • bc101
    bc101 Member Posts: 923
    edited April 2016

    I have a little hair loss - not much, but I've always had thin hair, so I"m used to it.

    Has anyone had mouth sores from Aromasin? I've been on it for almost 3 years, so you wouldn't think they'd start now. I have had tiny bumps along the side of my tongue that seem to flare up every now and then. ENT is sending me to an oral dermatologist, but it's going to take forever to get in. She doesn't think it's anything "serious" but meanwhile, it's driving me batty.

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited April 2016

    Hooray, I am officially off Aromasin after being on it for almost 11 years!! I will finish up my current prescription!!

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited April 2016

    CONGRATULATIONS!!

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited April 2016

    Thank you so much!

  • orknitter
    orknitter Member Posts: 62
    edited April 2016

    Kinder, That's wonderful!

  • april485
    april485 Member Posts: 1,983
    edited April 2016

    High five! May the rest of your long life be pain free with limber joints!

    Happy

  • elainetherese
    elainetherese Member Posts: 1,635
    edited April 2016

    Wow, Kindergarten! That's awesome to hear. I hope I can last as long as you did.

  • lago
    lago Member Posts: 11,653
    edited April 2016

    Kindergarten…

    image

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited April 2016

    Awww, thanks to all your wonderful Ladies!! Do what is best for you!!

  • walley
    walley Member Posts: 195
    edited April 2016

    Wonderful Kindergarten!!!!

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited April 2016

    Thanks, Walley!

  • justamy
    justamy Member Posts: 296
    edited April 2016

    I was premenopausal so I take an inhibitor shot every three months.I take aromisin daily and have for a year. I have had weight gain,joint and muscle pain and now excruciating bone pain. I can barely walk because of it. My hair is very fine now but it's there. My onc has told me to stop the aromisin for 2 weeks because of the terrible joint pain. She's not sure if I'll go back to it or switch to another drug. I'm only 44 and walk like I'm 85. It's very frustrating. I hate it when they have to give you drugs until they find one that's not too terrible but still not good.I went through a similar experience with depression meds. Also, I have never had a bone scan. I am concerned because I had a weight loss surgery years ago that steals calcium from your bones. I take supplements. Do you all think I should ask for a scan?

  • april485
    april485 Member Posts: 1,983
    edited April 2016

    Yes justamy, I would ask for a scan, particularly in light of the WL surgery. I took Aromasin (exemestane) for 2.5 years and then switched to Femara. (letrozole) Although I still have aches and pains that are pretty bad, all in all, so far it has been a little bit easier than Aromasin was for me. But, it has only been four months...we shall see. I am praying it gets better and settles down a bit but I am getting a lot of joint pain and so in that aspect it is not that different than before. If it gets any worse, I am quitting the drug completely. It will be 3 years in June that I started.

  • justamy
    justamy Member Posts: 296
    edited April 2016

    Thanks. I'm going to call my MO and see what she says. You hope they know your medical history but I sadly find that not to be the case most of the time.We definitely have to be our own healthcare advocates.

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited April 2016

    I switched back to femara about a week ago. Hoping it helps with the hair loss. Stiffness so far is about the same but the good news is treatment seems to be keeping cancer away. I had an appointment with my chemo doc this week and she doesn't need to see me for 6 months. Yay! Thank God for His goodness. Love, Jean

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited April 2016

    zjrosenthal - I saw my MO this week and I was also switched from Aromasin to Femara. He was concerned about my hair loss and also concerned about other SEs I'm experiencing. From what I understand, the AIs are so similar that it's likely the Femara will also cause hair loss. When you were on Femara before did you have hair loss? Why did you originally switch to Aromasin?

  • april485
    april485 Member Posts: 1,983
    edited April 2016

    I took aromasin for 2.5 years and while my hair did seem to fall out a bit more (see more on brush and in sink) hair loss was minimal for me. I have been taking femara since beginning of January and it appears to be the same for me. Hair seems to "come loose" easier but all in all, not too bad....so far anyway!

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited April 2016

    April - I am glad to hear that. There seems to be such variance to the extent hair loss becomes a problem. I am hoping it won't be bad for me.

  • lago
    lago Member Posts: 11,653
    edited April 2016

    I had a bit more hair loss on Exemestane than Anastrozole but totally controlled with Minoxidil. Granted I have a lot of hair so losing some wasn't all that noticeable to others

  • Molly50
    Molly50 Member Posts: 3,008
    edited April 2016

    I guess I am joining you ladies. I started exemestane last night. Lago, did you start minoxidil right away or once you noticed hair thinning?

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited April 2016

    Hi Molly I am on exemestane since 1st Aug last year (was on tamoxifen before that). No hair thinning. Not taking any hair supplements. Just wanted to let you know it doesn't happen to everyone. Very sorry to hear of those ladies who have suffered.

  • lago
    lago Member Posts: 11,653
    edited April 2016

    Molly my hairline was receding before diagnosis so I was already on it. I noticed a little more shedding when I started Exemestane but then is subsided.

    I am much happier on Exemestane. There was no way in hell I was going back on Anastrozole. I rather try Tamoxifen and I never wanted to do Tamoxifen.

  • Molly50
    Molly50 Member Posts: 3,008
    edited April 2016

    Thank you both for your responses. I have very thin hair so I worry. I am hoping that I do better on this than anastrozole. That was a nightmare for me.

  • treelilac
    treelilac Member Posts: 138
    edited April 2016

    Did anyone experience mental fog on one AI but improved once moving on to another? I hope to hear your experiences. I have difficulty focusing and become absent-minded. :p

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited April 2016

    Treelilac i experienced mental fog 2 years into tamoxifen. Unfortunately a switch to exemestane hasn't helped (although it was a good trade as I no longer get the incredible knots in back and neck muscles that tamox gave me). MO did suggest it could even have been the chemo that has caused the mental fog even though it did NOT manifest immediately. I do know a lady who had chemo only, no hormone therapy, who has also exerienced the mental fog so it is possible. Sorry I know this is not the answer you are looking for, but that's just my experience.

  • doxie
    doxie Member Posts: 700
    edited April 2016

    Treelilac,

    When I switched from Arimidex to Aromasin, even with an 8 week break, I felt an immediate perking of mental sharpness. In addition I started to sleep much better. Really did miss the odd bit of estrogen, though.

  • treelilac
    treelilac Member Posts: 138
    edited April 2016

    Thank you for the answers. Maybe the key is to switch once in a while no matter which drug regime so the brain won't "get used to" the changes? (just guessing)

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited April 2016

    I'm wondering if we sometimes adjust to certain medications. When I started on Aromasin I had joint pain and the fog. I'm not sure if it was left over chemo and anesthesia brain or from the AIs. I've learned to adapt my life and I write notes to myself. I also use my phone for reminders and set alarms. I think my mind is clearer but I may just be compensating. After about 4 months on Aromasin the joint pain went away. Now that I am on Fermara I hope it doesn't start again. I started using Rogain Foam 5% for women with hopes of avoiding a serious hair problem. I am losing more hair than normal (125 hairs when I shampoo) and hair does come loose during the day. I'm hoping my hair adjusts too.

    It is my totally unscientific observation that while there are individual differences, Tamoxifen seems to have the fewest SEs in most women, Arimidex the most SEs and Aromasin and Femara in the middle?


  • lago
    lago Member Posts: 11,653
    edited April 2016

    Warrior_Woman your hair may have some fall out when you start Rogaine. It's normal. Just your hair growing and pushing the old ones out.

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.