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Doing Well on Aromatase Inhibitors (AIs)

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Comments

  • grandma3X
    grandma3X Member Posts: 297
    edited October 2017
    Shortcake - I love your positive post! I also feel very lucky. When I look back at myself two years ago right after my diagnosis, it's almost like looking back at myself as a child. I've come so far both physically and psychologically. I started on Femara 18 months ago and have not had any serious SEs, and for that I am grateful. I changed my diet drastically to mostly fruits, veggies and nuts, with extra protein at dinner. I also now make time to exercise daily. I've lost 25 pounds and love the way I look in clothes now. Psychologically I have come to terms with my own mortality. I'm a realist - I know that if I live long enough the cancer will probably return. But that's ok, we all die of something! In the meantime, i'm more focused on living than I was before my dx. And I don't take things for granted anymore. I didn't love having breast cancer, but I certainly don't dwell on it or let it define who I am now.
    Glad I found this thread! We all need to hear positive encouragement, especially those who are just starting on this journey. Best wishes to all of you.
  • denise-g
    denise-g Member Posts: 353
    edited October 2017

    I just began year 6 on Anastrozole. Originally, I thought I signed up for 5 years, but my MO wants me on it for 10 or 15 years as I am high risk.

    The first 2.5 years I had joint pain so bad I could barely walk. BUT I stuck it out as I felt I had no choice but to stay on the AI as I was only able to have 3 months of Herceptin due to heart issues.

    One day, the joint pain got better. Not 100% better, but 80% better. My MO was alarmed it was so much better, did Estrodiol checks, but all was well. I thank God every night for my AI.

    My sister has been on Anastrozole for 2 years. She only has a little joint pain upon waking in the morning. She had to switch from evenings to mornings in taking the pill because she was having trouble sleeping. That made a world of difference.



  • Heidibird
    Heidibird Member Posts: 169
    edited October 2017

    Denise, your post gives me hope. I have been on Aromasin since November of last year. I already had bad arthritis and now my days are filled with more pain as I struggle to get up after a few minutes of inactivity. But I won't give in and become immobile as I love to dance and also teach dance. Now I can put the great thought in my head that I, too, may one day wake up and relize that the pain has greatly lessened.


    ~Heidi

  • muska
    muska Member Posts: 224
    edited October 2017

    I am completing my fourthyear on anastrozole. My side effects are those of aging: less flexibility, more discomfort in the feet, especially in the morning, dry skin. I bet I would have had them sooner or later anyway. No impact to hair - it looks better than ever - and no impact to mental skills or memory.

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

    I was complaining earlier about how horrible I felt, and this week it's only bad, and I can work with bad! I have been taking coQ enzynme 10 and glucosamine. ...I wonder if that has helped

  • coachvicky
    coachvicky Member Posts: 984
    edited October 2017

    I started Arimidex in April with 2 generics. Got the brand name around August I think.

    Today, I cannot tell that I take it. Even the mild hot flashes have lessened. My hands hurt some but not much worse than before all this started.

    I still swell and take a low dose diuretic. That is do-able to maintain.

    I hope this is working!

    Coach Vicky



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

    any correlation to AI and the IBS type symptoms I've been having?

  • shortcake42
    shortcake42 Member Posts: 14
    edited October 2017

    Thank you grandma3x! The DX of breast cancer has given my outlook on life a whole new perspective. I decided that I was going to enjoy however many years I have left. It was a very conscious decision, maybe that is why I have only two SEs that I know of, sleeplessness (is that even a word?) and more rapidly aging, which I would have done at some point. I decided that I was going to enjoy life. And most days I enjoy it better now than before I had the mastectomy. God bless all of us!

  • coachvicky
    coachvicky Member Posts: 984
    edited October 2017

    Love you outlook, Shortcake!

    I understand. Everyday is such a blessing since this happened.

    Coach Vicky


  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited October 2017

    What a great attitude, Shortcake and a great way of expressing it.  

  • Suz-Q
    Suz-Q Member Posts: 110
    edited October 2017

    I've just switched from Arimidex to Aromasin a week ago. I'm hoping some of the aches and pain will diminish. Sometimes my whole body aches, and more often my feet would feel so achy and stiff. I haven't noticed any changes from switching yet. Everything feels about the same, and I haven't noticed any additional problems either. So that's goo too

    I'm glad there is a forum for people doing well on these AI's. I think it helps to be positive rather than negative, however we all need a safe place to vent about our disease too! Thank you to everyone who has shared their experience!

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

    This is definitely a safe place. Blessings!

  • knittingPT
    knittingPT Member Posts: 10
    edited October 2017

    Hi all! I have been on letrozole for about 2 years now. At first, I had some joint pain and hot flashes and trouble sleeping. A few months in, most of those side effects went away. Yoga really helped me. My joints are stiff first thing in the morning but once I move around a little bit they loosen up.

  • grandma3X
    grandma3X Member Posts: 297
    edited October 2017

    bump. I think most people doing well in AIs don't post much but this is a good thread for women just starting out to see. I've been on Femara for about 18 months with no significant side effects

  • Bliss58
    Bliss58 Member Posts: 938
    edited October 2017

    I'm there with you, Grandma3X. I started out on Anastrozole, but it didn't agree with me so after 7 mos. MO switched me to Letrozole, and now I'm much better. Been on AIs for 18 months without any significant SEs, mostly joint paint, but nothing I can't handle and nothing that affects my quality of life. I'm proof that if one AI doesn't work, you can try another, and have success.

  • grandma3X
    grandma3X Member Posts: 297
    edited October 2017

    Barbars - so good to hear from you! I'm glad you are doing well

  • Icietla
    Icietla Member Posts: 321
    edited October 2017

    Nineteen months now on Letrozole. I hope to take it for fifty years. Maybe for fifty more years.

    Castigame -- Thinking of you. I know this has been another very rough day for you. It is a long recovery. Take it easy. Let others take care of you for now. Let them spoil you, even. Be a queen.

  • grandma3X
    grandma3X Member Posts: 297
    edited November 2017
    Castigame - I hope you are doing well after your hysterectomy.
  • DancingElizabeth
    DancingElizabeth Member Posts: 305
    edited November 2017

    Just completed one year (of ten)!! Only hot flashes and achy knees (though I've never had good knees!!) I really hope I'm alive long enough to take it all ten years!!!

  • tessu
    tessu Member Posts: 1,294
    edited November 2017

    I was on Arimadex (anastrozole) for about a year with onky mild - moderate joint stiffness and occasional joint pains; was then switched (rash came) to Femara(letrozole). The first half year or so on letro was awful — bad joint pains and muscle pains and stiffness, and sleep problems, and worse hot flashes, etc. —- but with time those SEs have markedly lessened. Only semi-major problem is bone thinning — already had osteopenia before cancer, recent bone density scan showed worsening (according to the tech, preliminary results), so going for blood tests this week and meeting my doc for official results and a bone med prescription soon.

  • Falconer
    Falconer Member Posts: 801
    edited November 2017
    Letrozole agrees with me better than Aromasin; I guess the non steroidal element is important. My joints are better and I'm able to exercise with less pain than I did on Aromasin. However, I'm dryer than ever! Dry eyes, chapped lips, and the hoo ha, well, thankfully I've read that coconut oil is a great help and every grocery store now sells it. I can live with this, I think? It's been a year since I started the ovarian suppression and 9 months of AIs. Sigh.
  • mustlovepoodles
    mustlovepoodles Member Posts: 1,248
    edited November 2017

    I posted to this thread about 6 months ago about my relatively few SEs on letrozole and I'm happy to report that it's still the case. No hair loss, no depression. In fact, I've come off most of my depression drugs. Chronic insomnia is being managed well with melatonin. My dexa scan was perfect. My joint pain has been made better by a combo of knee replacement, NSAID, and weight loss. I only recently discovered that keeping my legs and feet warm at night improves the morning pain/stiffness. So, now I wear socks and long pajama pants to bed, and when it's really cold I crank up the electric blanket too. Problem improved immensely!

  • grandma3X
    grandma3X Member Posts: 297
    edited November 2017
    Mustlovepoodles- that's interesting about searing pj's. Years ago I went through a period where my knees and hips hurt so bad they would wake me up at night. I started wearing pj's and also exercising every day and the pain stopped. It was around the time I was going through menopause, so I wonder if the drop in estrogen was the cause. Anyway, now that I am on Femara I continue to exercise and wear something on my legs at night. I have not had to wear socks, but we keep the house at about 62 at night in the winter so it's not that cold.
  • coachvicky
    coachvicky Member Posts: 984
    edited November 2017

    I posted this in another Arimidex forum.

    Good Morning

    I received my annual Cleavland Clinic Annual Exam's results yesterday from my Primary Care Physician (PCP).

    We were both concerned that my glucose (A1C) and cholesterol could be elevated due to Arimidex.

    My A1C was perfect. I do have some occasional spikes in a morning fast glucose (98 - 101) but overall this is good.

    When I first started Arimidex, my cancer center tested my cholesterol and it was higher than usual. I had the same result yesterday with a total cholesterol of 250. That is the highest it has ever been.

    My HDL cholesterol was extremely good (103).

    My PCP computed my "non HDL" by subtracting my HDL form my total cholesterol. He compared the 2017 and 2016 results.

    The difference from 2016 to 2017 was only a 21 increase. He did not find this significant.

    I share this because my PCP took alot of tests to measure many aspects of my cholesterol so that he could determine if the Arimidex was influencing the increase and if the increase required a remedy. I was happy that he looked beyond the total cholesterol number. He is convinced the increase is due to Arimidex. We went over my foods, how I eat, and exercise program as well.

    Please ensure your physician studies your cholesterol and doesn't just throw another pill at you. Unfortunately, throwing us another pill seems to be the answer by many. When I recviewed my cholesterol with my Oncologist, his response was that the would give me something if needed. I knew at that point my PCP had to get involved

    Coach Vicky

    Dx 6/2016, DCIS/IDC, Both breasts, Stage IIA, Grade 3, ER+/PR+, HER2+ (FISH)Dx 6/7/2016, LCIS/DCIS/IDC, Right, 4cm, Stage IIA, Grade 3, ER+/PR+, HER2+ (FISH)Surgery 7/10/2016 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placementChemotherapy 8/20/2016 Carboplatin (Paraplatin), Taxotere (docetaxel)Targeted Therapy 8/22/2016 Herceptin (trastuzumab)Surgery 1/19/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implantSurgery 2/21/2017 Prophylactic ovary removalHormonal Therapy 4/3/2017 Arimidex (anastrozole)

  • Johanne76
    Johanne76 Member Posts: 2
    edited November 2017

    I am not sure where to start with this post. I have been taking Aromasin for 2 1/2 years. I decided that the side effects were too hard on my body. I discussed this with my doctor and he agreed that I could lower my dosage since my risk of reoccurrence was pretty low. I took Aromasin every other day. It seemed as though it was working for me but then my body began to ache and I noticed some headaches. I decided to take a break from the medication and now I have had very bad headaches and my blood pressure is elevated has anyone had this experience. Thank you

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

    Johanne76, it's hard to respond since you have not posted your diagnostic stats. Best wishes

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

    joanne, have not had those symptoms. Sorry I cannot help. I read An article somewhere that talks about some AI s being suicidal, and explained how that can cause rebound headaches. Sorry I can't find it. Maybe try googling it?

  • grandma3X
    grandma3X Member Posts: 297
    edited November 2017

    Johanne76 - check out the Aromasin thread too. You may find someone with similar issues. Best wishes

    Hope everyone is doing well. I'm at a conference this week and looking forward to seeing old friends :)

  • JuliaJazz
    JuliaJazz Member Posts: 175
    edited November 2017
  • pupmom
    pupmom Member Posts: 1,032
    edited November 2017

    KB, how old is your cousin? Some of these things just happen through the aging process, but you didn't state her age.