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Doing Well on Aromatase Inhibitors (AIs)

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Comments

  • 2FUN
    2FUN Member Posts: 789
    edited August 2017

    iatigger, I'm sorry about the endo CA. I totally know what u r going thru. I got my endo CA dx a month after my BC dx, so mine was not a side effect. It took about 6 months after my hysterectomy for the hot flashes to ease up ( not disappear). Since I am now post menopausal, my MO put me on Femara/letrozole. It has pros and cons, but hasn't been too bad. I am a bit heavier and MO said letrozole works better in heavier people. I still get hot flashes from the AI, but not as bad as having just lost your ovaries! Hang in there!

  • pretzelwoman
    pretzelwoman Member Posts: 1
    edited August 2017

    I have been on Anastrozole for almost four years....the most troubling side effect I have experienced is joint pain but I have been a runner since the age of 12 and at 65 years young I continue to run despite the pain...knowing that this aromatase inhibitor reduces the risk of my cancer from coming back I am sticking with this treatment despite the joint stiffness/pain...exercising helps me so much...even walking when I cannot run. I consider myself lucky that I have not experienced more serious side effects...I am a cancer conqueror!!!!

  • KBeee
    KBeee Member Posts: 695
    edited August 2017

    I here with exercise, I walk and/or run every day. Rain, sun, snow, hot, cold..... I do something! Some days I walk or run many miles. Some days just a mile. I think the outsdoors helps my mood, and the exercise decreases side effects. I have some, but manageable. I have never missed a dose.

    Everyone tolerates drugs differently. I tolerate. Letrozole muchbetter than tamoxifen, and tamoxifen did not work for me.

  • PugsMama
    PugsMama Member Posts: 337
    edited August 2017

    just checking in to say it's been about 2months since I've been on exemestane (generic Aromasin). A little more stiff, especially if I've been sitting a while but nothing I can't deal with. I was so fearful of the SEs but so far so good! Plan to start exercising regularly once healed from my exchange surgery.

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited August 2017

    Hi All - also checking in. Been on name brand Armidex since May 9 and doing well. A little stiffness that comes and goes. My thumb joint is a little swollen but I don't know if it's the meds. All in all doing OK. Exercising regularly with yoga and supplementing with treadmill and weight machines. Sending gentle hugs and positive thoughts to all

  • Tappermom383
    Tappermom383 Member Posts: 401
    edited August 2017

    Good to hear from you, Butterfly. Glad Arimidex is serving you well so far. I started on the generic on July 17. So far, so good. My pharmacist got me Teva for the first fill but gave me Accord for the refill. I didn't know what to do but decided to give it a try. So far I can't tell the difference.

    I've continued going to my strength training and mat Pilates classes. I think this exercise - like what you're doing - helps us a lot. I know it made me stronger and I think helped me recover quickly from my surgery and get through my rads easily. I'm grateful that my local gym is a Silver Sneakers partner!

    MJ

  • Icietla
    Icietla Member Posts: 321
    edited August 2017

    I have been on Letrozole for almost seventeen months now. I hope to be able to take it for The Duration.

    I have had a few side effects, all of them non-problems.

    I threw up each of my first few doses, but I did not feel sick, so I took another pill each of those times. My Doctor ordered more supply for me so I would not run out from losing an occasional dose that way. I switched to evening dosing and have since lost only one dose that way. Non-problem.

    For about my first couple of months on Letrozole, I was more tired and required more napping. Non-problem.

    About four hours after dosing, I feel rather warm for a short time. Non-problem.

    About a year ago, shortly after my fourth surgery last year, I had a massive shed that substantially thinned my hair. Then my hair fallout rate reduced to a normal fallout rate. I do not know if the shed was from the Letrozole -- it might have been from stress and the surgeries. Either way, non-problem.

    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. Another side effect that has phased in and out periodically is alternately feeling warmth and cold when I am down for resting at night. At those times I run the ceiling fan to cool myself, and I also use lightweight covers to warm myself -- then I can easily uncover myself to vent away excess heat until I get to feeling cold again. Non-problem.

    A few months ago one of my toenails fell out. I noticed that it was tipped over sideways, and then when I handled it, it came out easily and painlessly. Before long, the leading edge of a new toenail showed up there. Non-problem. In fact, the loss of that toenail has been convenient. It was a littlest toenail. [Anyone else recall Roseanne Roseannadanna aptly comparing clippings of the littlest toenails to boomerangs?]


  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited August 2017

    Icella, I just love your attitude.  Hope I can adopt that no problem attitude when I go on Arimidex next month.  It has certainly been my attitude about my chemo treatments.  Last one is today!

  • MickeyB17
    MickeyB17 Member Posts: 103
    edited August 2017

    I start anastrozole on 9/1. Need this thread to keep on going! My MO said that often people with side effects will post and while their symptoms are real - most people simply have SE's that are mild and annoying.So it's nice to have a thread that captures those experiences as well. Thank you!


  • coachvicky
    coachvicky Member Posts: 984
    edited August 2017

    soon2

    I started in April. After 2 different generics with horrid SEs I switched to the brand name. I can't even tell I take it. My GYN said I had significant vaginal shrinkage but that is not necessarily a bad thing! LOL

    Best wishes

    Coach Vicky

  • 2FUN
    2FUN Member Posts: 789
    edited August 2017

    vicky, interesting that the brand name worked for you. I have been on generic letrozole for about 6 months, and this last 6 weeks has been the pits. I really struggle getting up from a chair . After I'm up and moving a few minutes I'm ok.I wonder if I should ask to change to the brand name, or just change to another AI. Dr also recommend CO-Q 10. I am up again tonight with joint pain, so I hope I can get a handle on this, as I go back to work/school in a week!

  • Icietla
    Icietla Member Posts: 321
    edited August 2017

    Thank you so much, JuliaJazz. I love yours, too. Congratulations on finishing with Chemo. I hope things keep getting better for you. I see from your already having entered your Armidex start date that you are in Anticipation! I hope your AI treatment will be (at least) as easy for you.

    Hey JuliaJazz -- since because of your location, you must contemplate the realistic possibilities of bad storms and consequent supply disruptions, try always to keep a good supply of your medicine.

  • coachvicky
    coachvicky Member Posts: 984
    edited August 2017

    2Fun

    I don't know if the brand-name would work for you or not.

    I kept very detailed notes on every side effect under every drug so my MO had plenty of data to justify the brand-name.

    Best wishes on this and school/work.

    Coach Vicky

  • MickeyB17
    MickeyB17 Member Posts: 103
    edited September 2017

    Starting anastrozole (Teva) today. Ready for anything - it is such a beautiful day. Anyoner have advice on time of day to take it?

  • coachvicky
    coachvicky Member Posts: 984
    edited September 2017

    I am a morning girl.

    Each time I pop the pill, I say less than 5 years to go!

    Coach Vicky

  • Tappermom383
    Tappermom383 Member Posts: 401
    edited September 2017

    My MO didn't care when I take mine. I take it at night and have been sleeping better.

    MJ


  • janett2014
    janett2014 Member Posts: 2,950
    edited September 2017

    My MO said it could make me sleepy, so I take mine at night; however, I don't think it has affected my sleep one way or the other

  • MickeyB17
    MickeyB17 Member Posts: 103
    edited September 2017

    Thanks all. After reading a little more, decided to start with taking it at night. Slept 9 hours, so no initial sleep interruptions:) I was really afraid and paranoid - so relieved that to get this going. I so appreciate everyone's feedback and tips! First day of the rest of my life....time is so precious now.


  • shortcake42
    shortcake42 Member Posts: 14
    edited September 2017

    Have been on anastrazole (not Teva) for 10 months. The hot flashes I had for years were worse for about 4 months and are milder than before BC. I had slightly aching joints, but don't have a clue if that is aging (I'm 65) or the anatazole. Probably aging. I have trouble sleeping. I take half a tablet Equate brand doxylamine succinate for about two weeks and when that quits working I switch to melatonin until it quits working and then back to Equate. The switching works for me. I need to sleep because I get up at 4:45 AM to go to work. Two or three hours of sleep is not enough. Excercise helps, but I have COPD to contend with, so that is somewht limited. In other words no real SEs. :) I am so glad to see a more positive thread!!!

  • MickeyB17
    MickeyB17 Member Posts: 103
    edited September 2017

    Thanks for posting, I don't want this to die out either:) I am 64 and can't tell the difference wither between SE and normal aging. I am working too and I'm gonna keep on keeping on:)

  • 2FUN
    2FUN Member Posts: 789
    edited September 2017

    I was feeling pretty good on letrasole, but the last 2 weeks have been killer. Tons of hip pain, can't get up from a chair without help etc. I decided yesterday to talk with MO, and today I am only mildly sore. DO SE's varry from day to day?

  • MickeyB17
    MickeyB17 Member Posts: 103
    edited September 2017

    I would think there would be fluctuation, though be sure and seek MO's input. Personally, as I journey through this, I am recognizing I need to write things down so I keep an accurate record due to fluctuations. All the material from individuals unique stories opens up thoughts about SE's that could be from other things. That's makes for confusion for me as to what's what. My MO did say that most women has SE that were mild and annoying.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited September 2017

    Butterfly - How often do you use the China Gel and where? I bought some after reading another post. it seems to help some with muscle issues, but has not done much for the joint issues in hands. Maybe I am not using enough. Usually only use in PM

  • KBeee
    KBeee Member Posts: 695
    edited September 2017

    I am doing well on Letrozole. Side effects could just be menopause... not sure because I will not miss a dose and hope to complete all 10 years. Everyone tolerates things differently. I walk or run several miles per day as well. My cancer may come back, but I will never have to say "what if?". I understand some people's bodies do not tolerate these, and quality of life is important. I do understand why some people cannot complete the prescribed course. I just hope those afraid to start are not scared to start because of other stuff experiences. You do not know unless youtry

  • Artista928
    Artista928 Member Posts: 1,458
    edited September 2017

    In reading the quitting AI/Tamox threads I get the feeling that some are defensive in their choice. Either they chose to never even try or can't tolerate (which I can understand as I can't Letro at least) but there seems to be a slight not so thrilled thing in their words. I mean why not try everything. If you can't tolerate it then fine, but give it a chance? And maybe Aromasin would be kinder since it works differently? Do it all: diet, exercise, reduce stress, and T/AI imo, the latter giving it time and try different brands to see before tossing it. I do see that folks who are not doing hormonals who can are majority stage 0 and 1, but many of them do progress too. I do believe in do it all and then if you progress, you won't be thinking what if. I think you say that now but should it happen, how big of a suck would it be to go through it all again with a recurrence, or worse, mets.

  • bravepoint
    bravepoint Member Posts: 232
    edited September 2017

    Arista - That's my feeling. I tried Letrozole but stopped when my right hand started going numb. I gave it 6 weeks and am now trying exemestane/Aromasin. My back is sore but that isn't abnormal as I do have some back issues. It's only been 8 days so I'll stay on it unless worse SEs crop up.

  • coachvicky
    coachvicky Member Posts: 984
    edited September 2017

    The April and May time frame I was on the Arimidex generics was brutal. My saturated iron dropped as well and I had a lump (benign) on a reconstructed breast. I could have handled the lump and iron dropped better than I did but not on top of the generics and their side effects. It was too much.

    I also think this was the time that I began to doubt my Oncologist and lost confidence in him. He just didn't seem to take the side effects seriously until I said get the the brand name or I will not be able to take this. I got the brand name Arimidex and (for me) the side effects are hardly experienced.

    I understand trying and not trying. At some point I will probably say enough is enough. I almost did that with my Prolia shot last Wednesday but then I thought why not give it a try.

    Coach Vicky


  • pupmom
    pupmom Member Posts: 1,032
    edited September 2017

    2Fun, I've found that SEs become less severe with time. And yes there is fluctuation from day to day, but the general direction is down. Only SE I've had with tamoxifen is hot flashes.

    Artista, I've been on those threads with you. My feeling is that people with cancer are understandably angry. Because we can't attack the cancer directly, that anger is sometimes directed towards doctors and other health care professionals, who give us unpleasant news and treatments. Nobody likes cancer treatments, whether chemo, rads, or anti-hormonals. We do them to save our lives.

  • ruthbru
    ruthbru Member Posts: 46,709
    edited September 2017

    Since the most dangerous side effect of a cancer recurrence is death (preceded by some really crappy treatments which will just maybe slow it down a little); each person has to ask herself, if I (heaven forbid) have a recurrence, will I have any regrets about the treatment decisions I make now? I followed all the recommended treatments, and my answer would be no (in my mind the recurrence would then be fate/real crappy luck). If you, for whatever reason, follow a different path and will still be able to answer 'no', then it is the appropriate way for you to go.

  • Bliss58
    Bliss58 Member Posts: 938
    edited September 2017

    I'm glad to find this thread and think it's probably more appropriate for me than the Femara thread since I don't have what I would consider SEs on Letrozole. I started out on Anastrozole and after seven months, had severe knee pain. Knowing what I know now about fillers, I think the brand of generic may have been the culprit. My MO did take my concern seriously and switched me to Letrozole (Teva brand). Within days, I felt so much better. Now after 11 months on it, I don't have near the joint pain I once did. I already have osteoarthritis, but I'd say the additional joint pain and stiffness from Letrozole is attributable to decreased estrogen rather than a SE, but it's tolerable. The only other thing I've noticed is weight gain, however, I also know that I need to be better about my diet which has been a contributor. Again, probably just part of losing more estrogen rather than a SE. Edited to say: I agree with others who have said exercise is key. I'm stiff when I get up in the morning or after sitting for a long period, but once I get moving, I'm okay.