Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Life on aromasin

1163164166168169187

Comments

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

    Jeepers!

  • Wildtulip
    Wildtulip Member Posts: 470
    edited September 2016

    Hopeful, Yes, I think others have talked here about anxiety with Aromasin. My pain is mild, but every day. I was actually on Aromasin for several months before the joint pain started, and in the meantime started getting Zometa IV's, which can also cause joint pain. So, I don't know if it's really one drug or both contributing. In general, it's hard to know what's causing what. I still have some neuropathy in my feet from chemo, but who knows..maybe other drug side effects contribute to my difficulty walking at times. (I get really stiff if I sit too long and my feet don't want to work.) I just started back to work after having the summer off, and I definitely have to find some balance!

  • claireinaz
    claireinaz Member Posts: 714
    edited September 2016

    When I don't need breakfast--which is most days--I take it with a spoonful of coconut oil. Good fat in there!

    Claire

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

    Does this also apply to Femara? Love, Jean

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited September 2016
    No, not according to my pharmacist or the patient inserts, Jean.
  • erento
    erento Member Posts: 187
    edited September 2016

    I came across the following links thought I'll post them here. It's getting more confusing! So high fat is good or not?

    Oral Absorption

    42% bioavailability; plasma levels increase by 40% after high-fat breakfast but maximum estrogen suppression is achieved under fasting conditions.

    http://www.bccancer.bc.ca/drug-database-site/Drug Index/Exemestane_monograph_1Dec2011_formatted.pdf

    Do not take your medication with a high fat meal, as this can increase the medication levels in your blood. The blood levels of this medication can also be affected by certain medications. These include: medications with estrogen including birth control pills or patches and hormone replacement therapy, rifampin, carbamazepine, phenobarbital, phenytoin and St. John's wort. Be sure to tell your healthcare provider about all medications and supplements you take.

    https://www.oncolink.org/cancer-treatment/chemothe...

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

    Hmm, the last part of that warning reminds me of the Crunchy Nut Cornflakes box or the packet of peanuts with the "Warning Contains Nuts" on the side. Legalese.

    If you were taking ER supression medication ALONG with ER containing birth control pills or HRT ....Loopy

  • erento
    erento Member Posts: 187
    edited September 2016

    ha yeah, I found that bit too funny!

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited September 2016
    ErenTo - those statements about absorption v suppression are a real conundrum. I'll have to look into that more closely. This is one issue I did NOT have to worry about on Femara and it does bother me...
  • CCS648
    CCS648 Member Posts: 19
    edited September 2016

    I didn't have chemo, but my feet simply don't work in the mornings since I started taking Exemestane a year and a half ago. It's like walking on blocks of wood, except it's very painful, and they're swollen. I'm 51 and in good shape, but in the mornings I look like I'm 91, and it just keeps getting worse. I'm pretty stiff when I get up after sitting for a while, but that part is tolerable. Hot flashes are annoying, but I can handle that.

    All that's bad enough, but my anxiety level just keeps getting worse. And I'm angry all the time. I take wellbutrin, and am going to ask the doctor to increase the dose, but I just don't know if it will help. I'm not myself and it keeps getting worse.

    I'm considering going off the darn pill, but that is so frightening - both my parents died very young of cancer, and I've always been sure that's what would get me too.

    I just don't know what to do.

  • erento
    erento Member Posts: 187
    edited September 2016

    Hopeful, let me know if you find anything! I don't want to overthink it, but I'm putting up with the side effects, so might as well do it the right way. For now I keep taking it with my breakfast, which is fairly high fat.

    CCS, my MO mentioned that people report feeling like they're 90 when they wake up, apparently it's very common, I haven't had that yet, but have stiff fingers. You could try a different AI if you haven't already, they might agree with you more, at least for a while.

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited September 2016
    I certainly will, ErenTo.

    CCS - please consider trying another AI if you need to. They each affect individual women differently, so you may still find a good fit. I really hope so!
  • gronco
    gronco Member Posts: 3
    edited September 2016

    Hi all,

    I'm looking for some helping managing my life on estrogen blockers. After taking arimidex for over year, I told my oncologist that I still felt the fatigue and brain fog that I felt while on chemo and radiation. He switched me to Femara. I took it for 3 months and still felt fatigue but also bad headaches,also. He told me to stop for two weeks to see how I felt. I felt like my old self pre cancer. So now I started Aromasin and the brain fog and fatigue is back. I always take meds in morning. Will switching the time I take it help?



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

    I take mine at night because I have insomnia if I take it during the day.

  • moderators
    moderators Posts: 8,740
    edited September 2016

    Hi Gronco,

    Just wanted to pop by to say hi and welcome to you! You've found an incredible Community here and we hope you find all the answers you're seeking.

    Let us know if you need any help as you navigate our boards!

    --The Mods

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited September 2016

    Hi, Gronco - I'm sorry you're having such a tough time with these vital treatments. Sometimes it feels as if we can't live without them and can't stand to live with them!

    I always took Femara at night, just before bed. I eventually developed long-term, intractable fatigue after about 18 months but there were a lot of other things going on in my life that probably fed into that response.

    Aromasin is supposed to be taken with food (healthy fats, actually) and can cause insomnia (unlike Femara) so some women take it in the a.m. However, you might try taking it later in the day and see if that works out better for you. Maybe take it with lunch or an afternoon snack? Myself, I take it with dinner because that's my meal most likely to contain fats. I haven't had any issues with insomnia from it. Good luck finding the right balance.

  • gronco
    gronco Member Posts: 3
    edited September 2016

    Thank you Hopeful82014! I will try taking it atlunch starting tomorrow.

  • gronco
    gronco Member Posts: 3
    edited September 2016

    Thanks Molly50! I will try switching time as see how I do.

  • Wildtulip
    Wildtulip Member Posts: 470
    edited September 2016

    CCS648, I'm sorry your anxiety is so bad. I went through a period of it being really bad, but it's improved for me. Have you tried counseling? Just a thought, as it has helped me a great deal. I relate to much of what you said..the hot flashes are annoying. My feet also don't like to work first thing in the AM, or after sitting a long time. I actually didn't realize it could be the Aromasin, though, because my feet have been this way since chemo.

    ErenTo, I have stiff fingers in the morning too! I'm curious, did your joint stiffness start right after beginning Aromasion? Mine didn't start until I had been on it a few months.

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

    I am another 90 year old in the morning. Though I had actually pegged it at 91...Loopy (My real age is 49.)

    What I find so amazing is the FIRST trip down the stairs in the morning. I am hobbling down, one step at a time. Doesn't make any difference whether I have just got straight out of bed or if I have got up and moved around the bedroom first. It's that first stair jaunt. Second stair trip is nothing like it, it's fine. On the first one I think of Po (Kung Fu Panda) "Aah my old enemy - stairs".

    Last month I was away on hols for a couple of weeks in a 3 storey house. LOTS of stairs. But I was sea swimming most days. Found the sea swimming made a big difference, in a positive way. No idea if it was the sea or the swimming, or both. There are lots of nice salts and minerals in the sea that you dont find in swimming pools. On the days when I had swum the day before I was a lot less stiff first thing in the morning.

    I loved so much all the things I could do in the sea, arabesque, entre-chats etc - no way was I ever able to do any these on land, even in life before cancer, even when I was 11 years old and a lot more lithe. But in the sea so easy, even as an AI junkie. Wish I could swim in the sea every day of my life...

  • Wildtulip
    Wildtulip Member Posts: 470
    edited September 2016

    Feline, I love the image of you dancing in the sea! Perhaps it was the salt, but I believe the water itself was helpful. My daughter has cerebral palsy and taking her to a warm water pool is one of the best things for her muscles aches. And the stairs..yes, same thing here!

    I'm 47 and used to being pretty active..it's frustrating to wake up every morning feeling so much older. It really helps to read what others are experiencing, though. Can anyone say if SE's get worse with time?

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

    feelingfeline -- I've had a similar experience with swimming, but just in a pool. Every day this summer (weather permitting), I went swimming for an hour with one of my sons. It really helped me to stay limber. Now (alas), the outdoor pool has closed, and it's back to work/school for us. I will try to take my son swimming today at the indoor pool. But, it's not the same. Scared

    I feel a little creaky if I sit for too long. So, I try to get up and move around every 30 minutes, especially at work where I have an office job.

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

    Me too ladies. I am fine walking, love my outdoor pool where I can leap and dance to my hearts content. Closing the pool this week then joining a gym with an indoor pool. The worst pain and stiffness is moving in bed at night and when I get up. Sitting in one position too long also. Once I get moving it's better. Love, Jean

  • ginger48
    ginger48 Member Posts: 1,437
    edited September 2016

    I have the same hobbling down the stairs in the morning and after sitting for a bit. Once I get moving, I am much better. Swimming has improved my stiffness and pain. I think it is the compression of the water and alsojust moving around in general.

  • erento
    erento Member Posts: 187
    edited September 2016

    Wildtulip, my finger stiffness started around 2 months in. It's not very bothersome and is manageable.

    Now, I said somewhere up thread that I was doing well on Aromasin, but it's no longer the case. I've been experiencing gradual increase in fatigue in the last two months and waking up "heavy" most days. I'm taking a short break and will see my MO soon to see what she says. I think my body must have gone into shock going almost completely estrogen-free from a pre-menopausal state and might need more time to adjust. It could also be Zoladex. I'm already feeling more energetic. Saying that I'm willing to give it a few more months before switching, despite fatigue I don't have any other major side effect (so far!).

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

    Do any of you have issues with food? I get nausea and stomach aches so easily now, anything slightly "heavy or greasy" hurts my stomach.

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

    I get nausea if I take Aromasin on an empty stomach. I eat breakfast first and then do Aromasin.

  • Wildtulip
    Wildtulip Member Posts: 470
    edited September 2016

    ErenTo, I'm sorry for the increase in SE's. I hope you find something that feels good for you.

    Molly, I have felt some nausea, but at the time I was also taking an antibiotic that needed to be taken with food, so I'm not sure which drug caused me to feel that way. At the time my thought was that I didn't eat enough with meds, so I ate some crackers and then felt better. I haven't felt nausea at random times, or been any more sensitive to foods.


  • Crazywabbit
    Crazywabbit Member Posts: 54
    edited September 2016

    OMG so I am not along in feeling like a little OLD lady in the mornings. It takes me about 10 minutes of being up and around before I can feel like my back is not able to straighten up. And my feet and ankles feel like they are In need of oiling. I am changing my generic Aromasin to generic arimidex due to cost. My 3 month co-pay jumped from $20-$660. My oncologist thinks that Aromasin is the best of the 3 AIs. Less osteoporosis and less joint pain. I was also recently diagnosed with hyperthyroidism and the combination of that and the Aromasin gave me the hot flashes from hell. I guess I will find out if there is any difference worth the extra$640.

  • claireinaz
    claireinaz Member Posts: 714
    edited September 2016

    I've written this before, but I find regular bikram yoga practice to be the best thing to keep joints limber and moveable.