Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

Life on aromasin

1…164165167169170…187

Comments

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

    image

  • Wildtulip
    Wildtulip Member Posts: 470
    edited September 2016

    Some have talked about insomnia with Aromasin, but does anyone feel particularly tired?

  • kiks1
    kiks1 Member Posts: 118
    edited September 2016

    Me! At least I hope it is Aromasin (fingers crossed) but I started about 4 months ago. I did not have many SEs initially and, in fact, I take my pill right before bed because it knocks me out. Lately, I started to have trigger fingers. Urgh! Does anyone know what I can do or does it get better?

  • Wildtulip
    Wildtulip Member Posts: 470
    edited September 2016

    Kiks, I was on Tamoxifen for a few months and had a trigger thumb while on that. I was sent to hand therapy (who knew there was such a thing) and was given exercises and a splint. It improved some, but not totally, so I ended up getting a cortisone shot and it's better. I started Aromasin in Feb, and it also took months for the SE's to show up. Glad I'm not the only one who is tired. I had surgery in June, so since then have related the fatigue to that, but it's gone on for so long that I am beginning to question things.


  • kiks1
    kiks1 Member Posts: 118
    edited September 2016

    Thanks Wildtulip. I am going to see my MO next week, maybe I will ask. Unfortunately, I type a lot at work and may not be able to be on a splint. I am trying turmeric and Vit B6 (P5P), I have heard it works but does take a while. Btw, I had increasing fatigue after surgery. I think it was partly because the body uses so much to heal that it takes a long term toll on our store of energy. Also, the mental stress that we were going through. i believe it does take time to gradually get back to 'normal'.

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

    Isaw someone on another thread mention ginger cubes to help alleviate joint problems. It might be worth a try. I have been on exemestane since April and just starting to see some SE's. Nothing major just my knees hurt and some headaches.

  • kiks1
    kiks1 Member Posts: 118
    edited September 2016

    Molly, my knees started hurting about 2 months ago especially when I get up in the morning. It has gotten way better lately but I started up running a bit more again. Hopefully yours will resolve. I, too, read that ginger helps, maybe I will add that too. Sigh, nobody will believe how many supplements we take! I guess the new 'normal'.

  • erento
    erento Member Posts: 187
    edited September 2016

    I do have fatigue, it started around two months in. I started experiencing sudden lightheadedness, tingling and crashing fatigue. I stopped if for 9 days and the symptoms stopped and the 'fog' lifted. I had an ear infection at the same time and was put on antibiotic, so can't tell which was what. My MO doesn't think it's the drug, but I started back again last week and the fog is back and have overall throbbing (with normal heart rate), especially at nights which is really frustrating. Could be generalized anxiety, could be medication, who knows.

  • CCS648
    CCS648 Member Posts: 19
    edited September 2016

    I'm exhausted on this stuff. I recently stopped for 12 days to see if the side effects decreased, and they did, massively. My feet hurt much, much less, the aches were much better, and I wasn't hair-trigger angry and anxious all the time. The tendinitis in my hips, elbows and shoulder didn't go away, but I wasn't expecting it to, since that would take much more time. But I went back on a few days ago, and already it's back to exhaustion, walking like a 90-year-old, and feeling like my head is going to explode.

    I'm going to talk to my doctor about switching to another AI, but I want to wait to see if anything interesting comes out of the first Lobular Carcinoma conference at the end of this week.

  • dtad
    dtad Member Posts: 771
    edited September 2016

    Hi guys. You know, its one thing to experience the SE of anti hormone treatment. However its a whole other thing when the MO prescribing the drug doesn't validate it!

  • amyfsw
    amyfsw Member Posts: 51
    edited September 2016

    Hi all,

    been on Arimidex since January. Most of major joint pains have subsided, but new problems. My feet ache and my shoes are all too tight. Now have pinched nerve(Neuroma) on one foot. Did not really expect to have to replace all my shoes now!

    has anyone else experienced this? saw MO yesterday and she had never heard of foot issues specifically. (nor did they ever hear of severe eczema on hands and feet from this drug - which I experienced since January)

    Also had blood work and had high alkaline Phosphatase levels - maybe this is causing foot issue?

    just wondering if anyone else has any info.

    thanks

    Amy

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

    I have been on exemestane for about 6 months. The SE's are just now starting to bother me. I am having more joint and some bone pain. The worst is I am having some pretty weird stomach issues that when I mentioned to my MO he just shrugged his shoulders. I need a different MO but right now am leaving well enough alone because I adore my surgeon. It is a small community clinic of City of Hope.

  • doxie
    doxie Member Posts: 700
    edited September 2016

    amysfw,

    Have you had any history of eczema in the past?

    I've suffered off and on for years, each time teasing out another thing I've become allergic or sensitive to. It may well be the Arimidex. Try switching manufacturers? That has helped others in reducing SEs and my help with eczema if it is the cause. Or think about what you are eating that could cause eczema. My list includes most food dyes, coconut oil, chocolate, and now wheat or even gluten. I've not teased out the latter two. I could add more that were allergic reactions with hives. Thankfully not yet the AI I'm on, yet.

  • Wildtulip
    Wildtulip Member Posts: 470
    edited September 2016

    I think what's so hard about Aromasin, for me, is you never know what you are going to get each day. Since starting it I have experienced many SE's...fatigue, insomnia, joint pain, foot pain, anxiety/depression, hot flashes. Some things have come and gone, others shown up after months. Some of these things could also be caused by other meds, or life, but like, dtad said, SE's not always validated by MO. Aside from that, in the last month or so is when my foot pain has been at its worst, and I've told people that I'm experiencing pain. I get a lot of, "happens when you get older" or, "I wake up stiff too." I'm only 47..I shouldn't be waking up with stiff joints, and the progressively worse foot pain throughout the day is a lot different then aging aches and pains! :( Just had to vent this. I see my MO for check up next Wed and SE's have changed so much in last three months. If anyone has any advice for me on how to best describe/articulate foot pain, I'm all ears. I don't want another med, but I want to be heard and discuss options. Someone told me that Hyaluronic acid may help, but also said that some supplements may increase estrogen, so be sure to run by MO. (It's supposed to put moisture back into skin, joints and tendons.

    Amy, I'm also having foot problems, but don't know if it's a nerve thing. How did you determine yours is a pinched nerve?

    Molly, that's a bummer you are having stomach issues.

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

    Wildtulip totally know where you are coming from. I have had that "happens when you get older" too. (Including from DH who happens to be 10 years older.) Went onto Tamox at 45, exemestane at 48. I am now the ripe old age of 49. Yes I'm middle aged NOT A SENIOR. Hellloooo I notice plenty of other women my age are zipping around doing marathons and such like and you are not saying that to them ......

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

    PS Just to clarify- I do NOT think it is a particularly helpful thing to say to someone who qualifies for senior citizenship either...

  • Wildtulip
    Wildtulip Member Posts: 470
    edited September 2016

    Feline, Completely agree!! Sorry about lack of compassion from DH. Ugh!

  • erento
    erento Member Posts: 187
    edited September 2016

    Does anyone have any info on dosing? Why do we all take the same dose, whether we're 100lbs or 300? Doesn't make sense. I know that clinical trials are based on the balance between safety and efficacy, but there has to be some literature on how the drug actually breaks down in the system and what it does to estrogen in the peripheral tissues. Do we all really need 25mg?

  • crisw
    crisw Member Posts: 2
    edited September 2016

    ErenTo- There is some research on this; but, as with most things AI-related, we don't have the answers yet...

    http://jco.ascopubs.org/content/30/24/2940.full

  • erento
    erento Member Posts: 187
    edited September 2016

    Thanks for the link crisw. It makes logical sense, though it's only for overweight women. I read somewhere during clinical trials they went all the way up to 600mg and it was still safe. Sounds crazy!

  • dtad
    dtad Member Posts: 771
    edited September 2016

    Hi everyone. IMO one of the main problems with dosing is that most MOs do NOT test our hormone levels. So I am so much more comfortable with naturopathic docs that test our levels and prescribe accordingly. The one size fits all dosage just doesn't make sense to me. Hopefully this will change n the future but Im not optimistic because most MOs know very little about female hormones. Its not in their training. We would do better having endocrinologists or even gynecologists on our team. Good luck to all...

  • Musosgirl
    Musosgirl Member Posts: 305
    edited September 2016

    Hello ladies. I just got my prescription today, switching from Tamoxifen. Tamox was fine for me but I could not tolerate Effexor and had to switch to an SSRI that is contraindicated with Tamox. I do not know what it will cost me--is it really over $600?! 😳 I pay out of pocket for most prescriptions. I am 36 so my MO thinks I will tolerate Aromasin just fine, better than Tamox even. We'll see. Bone density scan in the next few weeks for a baseline. Unless I have issues I do not go back for 6 months--my first non-treatment, just a check-upappointment!

    So my quick glance at this thread suggests taking it with food and at night. Anything else I should know?

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

    Musogirl,

    Here is a link that talks about discount programs for Aromasin. Aromasin Discounts

  • marionsgirl
    marionsgirl Member Posts: 18
    edited September 2016

    I was taking Aromasin for 6 months and the co-pay was zero! My MO switched me to Femara and that co-pay is also zero!

  • Musosgirl
    Musosgirl Member Posts: 305
    edited October 2016

    ugh! $180+ for 1 month. Definitely need to figure something out. Thanks for the links Molly. Insurance will reimburse us through the end of this year--so 90 days to find a way to lower the cost. First pill down the hatch--here's hoping for no SE!

  • Ozoner
    Ozoner Member Posts: 126
    edited October 2016

    Hi all. So glad to see this thread considering Aromasin! I started in December and had achy joints and sore muscles but not too bad. Then in September foot pain got really bad, my toes were more numb than usual, and my fingers are sometimes tingly.

    Lately, I've been feeling queasy and occasionally nauseated. I'm not as strong as previously and just feel tired.

    My MO was delighted that I adjusted so well to the hormone blocker, but now I feel instantly aged. I'm getting Prolia every six months to help fend off osteoporosis.

    I'm considering taking a few days off to see if I rebound. Thanks to you for saying to take the meds after a meal. I hate explaining why I missed Zumba or why I've shortened my walks. But we're here! Very comforting to see I'm not alone.

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

    Ozoner, glad , well not glad, to see I am not alone in the queasy/nauseated realm.

  • Wildtulip
    Wildtulip Member Posts: 470
    edited October 2016

    I was started on a combination of Aromasin and Zolodex injections in Feb. A couple of months ago the SE's began getting progressively worse. In the last month or so it hurt my hands just to pull covers up in bed, and by dinner time I am limping from the foot pain. I had an appt with my MO this week and he said I should go off the meds..that the SE's are too severe. I go back to MO mid Dec, but in the meantime, I'm not on any meds, which is kinda scary. If my SE's improve, then I may be put on Tamoxifen. My MO had wanted me on the combined hormone treatment because he said it would give me better odds, so I don't like going off them. :( On the other hand, maybe this way I will feel better when I have my exchange surgery early Dec. Just had to vent...

    Ozoner, I was told it could take a couple of weeks of being off Aromasin to see a change.

  • claireinaz
    claireinaz Member Posts: 714
    edited October 2016

    Wildtulip, can you ask your MO to let you try Femara or Arimidex instead, first, instead of going right to Tamoxifen? Both are AIs, like Aromasin, and I've read plenty of testimony from women on these discussion boards that indicate if they have problems on one AI, switching to another often helps with SE.

    I began on Tamox, no worries--then confirmed menopause, and went on Arimidex, which was terrible for me. When I switched to Aromasin--bang! side effects disappeared or at least lessened enough that I could tolerate the drug. My MO said if I didn't tolerate Aromasin she'd put me back on Tamox, but she seemed to like that choice least--wanted me to be on an AI instead. I got lucky with Aromasin so far.

    Would you be able to switch to something else like the above, first?

    Claire in AZ

  • Wildtulip
    Wildtulip Member Posts: 470
    edited October 2016

    Claire, Thank you for sharing your experience. I had thought about a different AI, but didn't bring it up this week. Honestly I was really shocked when he said I should stop the meds. I was thinking we would come up with a plan to manage the SE's. I was peri menopause prior to Dx, so have been receiving zolodex shots monthly (to shut down ovaries) along with Aromasin. I don't know if that's possible with other AI's, so if anyone has info on that, please let me know.

    I have to say that today I am beginning to feel like a different person..I still have some pain, but not as bad and I'm less foggy. I also didn't realize how down it was making me feel. I know pain can weigh you down, but in hindsight, there was also more emotional and psychological impact than I realized.

Categories

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