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Doing Well on Aromatase Inhibitors (AIs)

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Comments

  • feliciascintillation
    feliciascintillation Member Posts: 145
    edited January 2018
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    Ladies, you are champs! I have been on an AI since early 2016 (almost two years!) and currently am taking letrozole. I am bothered most by back pain, joint issues,and muscle soreness, but have been adjusting my life to include more exercise, eating a healthier plant rich diet, yoga and stretching, and reading your positive posts! Winking Thanks for reminding me I am a fighter and I will get the job done.

  • nancy2581
    nancy2581 Member Posts: 407
    edited January 2018
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    I have been on letrozole since Dec 18th. My lower back hurts off and on, but that was happening before letrozole. I don't really have anything to complain about. Hope it stays that way.

    Nancy


  • janett2014
    janett2014 Member Posts: 2,950
    edited January 2018
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    Coach Vicky,

    My best advice for thinning hair is to find a dermatologist who deals with hair issues. That has definitely helped me.

    Janett2014

  • coachvicky
    coachvicky Member Posts: 984
    edited January 2018
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    Thank you Janett2014

    C Vicky

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited January 2018
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    Vicky- check with your docs if you can take biotin. I started before my Dx and so far so good on Armidex. My hair is naturally thin so trying to really take care of it. I can't afford to lose any.

    My SEs are similar to most of the posts on this threadand manageable. I do have osteoporosis in my hips but I had osteopenia prior to Arimidex. I'm getting Prolia injections every 6 mos. My cholesterol is higher which can be another SE. However the holidays were not healthy eating. So back to eating healthy. Blood work all good yeah! Keeping up with exercising which helps with the aches and pains.

    Sending gentle hugs to all

  • 2FUN
    2FUN Member Posts: 789
    edited January 2018
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    most of my SE s are kept at bay with glucosamine and co q enzyme 10. Still having massive thumb tendinitis. Anyone have a splint they like?

  • klvans
    klvans Member Posts: 199
    edited January 2018
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    Does anyone who is ER-/PR-, HER2+ take hormone inhibitors?

  • ruthbru
    ruthbru Member Posts: 47,003
    edited January 2018
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    klvans, there would be no reason for taking a hormone inhibitor if you have no hormones to inhibit. HER2 is a whole different thing.

  • Icietla
    Icietla Member Posts: 321
    edited February 2018
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    Aug 24, 2017 11:26PM Icietla wrote:

    Some side effects have phased in and out periodically -- say, more for a few months; then much less, or nothing remarkable that way, for a few months. One has been some aching and stiffness along the outer side of one femur. When it gets to aching when I am down for resting, I just roll over, then it feels better. When there is stiffness there when I get up after some time down, some walking and stretching movements very shortly make it better. Non-problem.
    -------------------------------------------------------------------------


    Icietla writes:

    I have not had that side effect at all since last summer.

    At my most recent checkup, the Nurse told me that since I still have not had serious side effects, I am very unlikely to, so I can figure on taking the medicine for the long term.

    SmileSmileSmileSmileSmile

    I hope you are all doing great.

  • Imkopy2
    Imkopy2 Member Posts: 214
    edited March 2018
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    I was on tamoxifen until I had my oophorectomy/ hysterectomy in Sept...I have some joint pain but I have found that if I keep moving with exercise or walking I feel a ton better. Also, I had some frozen shoulder issues which I think were because of my TE & it's distance from my port. I started seeing a chiropractor and I can honestly say my range of motion is 200% better and it helps with my stiffness. If your insurance covers chiropractic care it helps. Hugs to all


    Biotin has helped with my thinning hair for sure

  • willowreed84
    willowreed84 Member Posts: 31
    edited March 2018
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    Hi everyone,

    I'm joining you today with my first bottle of arimidex. I have been on tamoxifen for three years and having lots of side effects. Hoping to do better on an AI. My bone scan came back normal and I have been lifting small weights and walking to re gain strength.

  • grandma3X
    grandma3X Member Posts: 297
    edited March 2018
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    Tomorrow will be my 2 year anniversary for starting Femara. My hair is thinning a bit, but no serious side effects. My DEXA scan was normal when I last had it and my MO has me on Zometa infusions every 6 months, so I don't expect there to be much impact on my bones. Best wishes to everyone on this drug

  • 2FUN
    2FUN Member Posts: 789
    edited March 2018
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    Glad it's going well for you.

  • pupmom
    pupmom Member Posts: 1,032
    edited March 2018
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    Just want to give a shout to all who are doing well on Als (the vast majority of users)! These meds are absolutely life saving medications! ThumbsUp

  • cindyny
    cindyny Member Posts: 1,167
    edited March 2018
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    I started Anastrozole on 3/1, every other day for 6 weeks, then daily. I too seem to be ok. I had aches & pains before I had the bc dx, so any aches so far... I've had them before.

    I'm glad this post started. Before I started an AI, the bad SE list on other posts had me crazy! I'm hoping to get thru 5 years with minimal side effects. Onward warriors!

  • Bliss58
    Bliss58 Member Posts: 938
    edited March 2018
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    2FUN, I'm having the same issues with my thumb and interested in a splint, too. Have you found something yet?

    Grandma3x, glad you're still doing well on Letrozole. I suddenly took a surprising turn for the worse and MO took me off it and now I'm on Extremestane. Still very stiff and achy, but doing better. I think any of the AIs just exacerbate my arthritis, but I'll push through. I haven't had physical therapy yet, but think maybe that would help and my insurance will pay.

  • OCDAmy
    OCDAmy Member Posts: 289
    edited March 2018
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    I have been doing ok on Anestrozole for the past two months but noticed my face gets very flushed and hot when I exercise which never happened to me before. Is this common?

  • Lula73
    Lula73 Member Posts: 705
    edited March 2018
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    OCDAmy- yes it can be. Estrogen interacts with the hypothalamus on temperature regulation. When the hypothalamus detects is being too hot it sends the signal to dilate the blood vessels close to the skin to help dissipate heat. Unfortunately without the estrogen this process can become disregulated- it’s why we have hot flashes. So when you truly are hot from the exercise it can exacerbate the response and prolong it. After exercise I take a lukewarm shower and finish with a cold douse if water from head to toe at the very end. It seems to help.

  • 2FUN
    2FUN Member Posts: 789
    edited March 2018
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    lula73, thanks for the clear definition if hot flashes, and general over heating. I overheat more than flash.

    Bliss, I was going to contact my DBIL, a accomplished hand surgeon. He saw me moving odly while helping cook thanksgiving dinner. I have a few ideas about the best splint, but I should run it past him too.

    My MO took me off femara for 3 weeks to see how I feel. My other blood work was off, so I am a bit concerned. He told me not to worry, but if I am worried I should call him. He's a good guy, very involved in current research.

    Anyone know how long before I'll know if I am feeling better off femara? Anyone have high liver function numbers or highcalcium on femara.?

    Isn't his a fun disease????

    Man, we need to solve all cancers for good!

  • Tappermom383
    Tappermom383 Member Posts: 401
    edited March 2018
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    I don’t get hot flashes on anastrozole but my face is flushed almost all of the time.

    MJ

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited March 2018
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    Hi All,

    I thought I’d check in. The last week has been a bit more challenging. I have some aches in my toes and fingers. I’m also experiencing achy legs which keep me awake at night. I started Claritin two days ago so I hope this helps. I’m a little discouraged but I promised myself that if I didn’t need chemo I could put up with anything. Any suggestions would be most helpful. The aches are still manageable. Sleep aids seem to makes my legs more “restless.” Onward and forward. Love to all

  • pupmom
    pupmom Member Posts: 1,032
    edited March 2018
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    Butterfly, have you tried Aleve?

  • coachvicky
    coachvicky Member Posts: 984
    edited March 2018
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    Butterfly,

    Change manufacturers. See if that would help.

    Coach Vicky

  • nightcrawler
    nightcrawler Member Posts: 22
    edited March 2018
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    I haven't checked in for a while. I'm still doing fine on letrozole. I did start getting hot flashes more frequently. My gyn bumped up my Effexor from 37.5 mg to 75 mg, and that fixed the problem.

    Still no unusual aches or pains. I have chronic running injuries, so pain is something I deal with frequently. LOL My right-side plantar fasciitis is back, likely the result of increasing my mileage too quickly. This is a PITA injury that's difficult to get rid of once it flares. It has been an off and on issue since I trained for my first half, in 2012.

    No thinning hair.

    The biggest issue I'm having is difficulty with weight loss, although I think that has more to do with surgical menopause post-hysterectomy rather than the letrozole.

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited March 2018
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    Vicky

    I've been using name brand Arimidex from the beginnig. I'm wondering if I'm sore from exercising. I also skipped my monthly therapeutic massage. So hoping this is just a temporary setback. Some days are better than others.Keeping determined!

  • bella2013
    bella2013 Member Posts: 370
    edited March 2018
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    Nightcrawler, we are neighbors. I am just 3 1/2 weeks post op from BMX with DIEP Flap reconstruction. I am amazed at your level of exercise. I can’t wait to start working out again

  • coachvicky
    coachvicky Member Posts: 984
    edited March 2018
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    I don't know Butterfly ...

    Hang in there.

    You can do this or so I tell myself!

    Vicky


  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited March 2018
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    Will do Vicky. Heart

  • cindyny
    cindyny Member Posts: 1,167
    edited March 2018
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    Butterfly1234- I know this will sound crazy, but I've read it in other topics, put a bar of soap down by your feet at night when you sleep (under the covers). Like an old wives tale, some claim it helps with the leg pains. Some said any old bar, don't waste a good bar, use a free one from a hotel stay. You have nothing to lose, if it works, great; if not, add it to the list of things we've done for cancer. Best of luck!

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited March 2018
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    Thank you Cindy(from a fellow NYer) will definitely try this! Thanks for the tip.







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