• Has anyone refused to take hormone blocker because of the bone and joint pain side affects?

    Asked by Dianne2019 on Thursday, May 9, 2019

    Has anyone refused to take hormone blocker because of the bone and joint pain side affects?

    25 Answers from the Community

    25 answers
    • cllinda's Avatar
      cllinda (Best Answer!)

      Have you tried them and had problems? Or are you afraid of the dice effects that others have had?
      I've been on Arimidex and it really hasn't bothered me. Just a few hot flashes for me. I've been on them for six years now.
      My doctor had said to be in them for five years and then he said that research now recommends ten years. It can keep the breast cancer away along with other cancers.

      about 1 month ago
    • lujos' Avatar
      lujos

      I faithfully took letrozole for four years, then my cancer recurred while still taking it, so my faith in hormone blockers has been shaken. My next AI will be exemestane. My view now is that I’ll give it a good try, but if it makes me too miserable, I’ll stop.

      about 1 month ago
    • Horselady46's Avatar
      Horselady46

      I was on Arimidex and stopped taking it do to sever joint pain. They then put me on Tamoxifin. It was much better. Didn't have quite the severe joint pain. So I stayed on it for 5 years.

      about 1 month ago
    • gpgirl70's Avatar
      gpgirl70

      Everyone is different, but often if one causes joint pain another will not. I had crippling joint pain on Anastrozole and switched to Exemestane several years ago and have no joint pain.

      about 1 month ago
    • 2943's Avatar
      2943

      I encourage all to try them. There are three different ones that may or may not negatively effect you. I ended up with neuropathy (permanent) and all gave me extreme pain from knees to feet. I could barely walk to restroom. I now take gabepentin 3x a day for that. May try tamixifen soon. Onc feels it is not as effective for me but better than nothing. At least try it...no one wants this back!

      about 1 month ago
    • ChiSandy's Avatar
      ChiSandy

      There can even be differences in side effects between various mfrs’ versions of the same generic—for instance, though many report classic side effects from Novartis’ branded Femara (which almost no insurer will cover any more) Teva’s version of letrozole can be easier on some people than can others like Sun, Accord, etc. BUT until Roxane was acquired by WestWard, its version had even fewer and milder side effects than Femara; unfortunately, WestWard stopped making it because they wanted to cut costs and focus on generics with fewer competing versions.

      The differences can arise for reasons unrelated to the active ingredient: dyes, metals, binders, etc. So before switching to another AI, switch to another generic version of it—go online for each brand and check its list of inactive ingredients.

      about 1 month ago
    • junie1's Avatar
      junie1

      2014 I was dx with breast cancer after being cancer free for 20+ years. I had surgery, radiation, and then in in 2015, I was on Amidex, until just this March, when I was DX again, with metastatic breast cancer, which had appeared in the clavical area of the left side in my neck. I stopped taking the Amidex, per doctors orders. At the present time Im doing chemo to shrink the tumor. Im on TCHP. for 6 treatments.
      Not sure what will take place when chemo is over.
      Good Luck to all.

      about 1 month ago
    • 2943's Avatar
      2943

      Junie 1, I am so sorry to hear the beast is back. Sounds like you are giving it the one two punch and even a kick to the hind side! Sending BIG HUGS TO YOU.

      about 1 month ago
    • junie1's Avatar
      junie1

      2943,, yes, Im trying hard to kick this, I will say, this time around, its harder one me than any of the other times.with a few more years on me,, we all know that its not easy.
      im also dealing with a broken right wrist,, from a car accident I had just a month ago,,it happened 2 weeks after my 1st chemo treatment!! BUT I'm not letting that get to me either. all this will be behind me in a few months,, and I will be onto something new in my life!!
      Blessings to all

      about 1 month ago
    • 2943's Avatar
      2943

      Go gettum girl!

      about 1 month ago
    • Ashera's Avatar
      Ashera

      junie1 - I'm so sorry to hear about what is happening now...sending healing energy and warm thoughts.

      To original poster - I chose NOT to take AI's or Tamoxefen for my Stage3 due to the delibitating
      all-over pain I was left with after dose-dense chemo, and chemo-induced neuropathy in both lower legs and feet. I thought hard and researched much to be ok with the what-ifs, and right now, at 3 yrs out - I feel good about my decision. My oncologist supported my decision completely.

      about 1 month ago
    • petieagnor's Avatar
      petieagnor

      I didn't notice much pain in '06 from the Arimidex. I took it for 5 years, wish my oncologist had kept me on it for 10. On my 10th year I came down with MBC. I'm taking IBrance now & need a strong hormone block so I'm taking Faslodex once a month. The pain hits me almost immediately. I'm in bed for 2 days it hurts to walk. Next month, I have a CT scan so I'll know if it is worth it.

      about 1 month ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      petieagnor, what was your OncotypeDX score and what age & stage were you at original diagnosis? Did you have chemo &/or a mastectomy? I'm 3-1/2 yrs. into Femara and wondering whether I, too, should tell my oncologist whether I prefer to remain on it for 10 rather than 5 yrs. (I was Stage IA, age 64, lumpectomy + 16 targeted radiation treatments, no chemo, OncotypeDX 16).

      about 1 month ago
    • Dianne2019's Avatar
      Dianne2019

      Petieagnor, I hope your CT scan shows it was worth it. Praying for you.

      about 1 month ago
    • happydyad's Avatar
      happydyad

      This is my experience: Given my stage and grade of breast cancer, my oncologists recommended that I try the hormone blockers and if I wasn’t satisfied with how I felt on them then my doctors felt it was fine not to take them. I did try the blockers but within just a few weeks I had rectal bleeding. I got a colonoscopy which was normal so the only causative factor appeared to be the hormone blocker. I stopped the blockers and the bleeding waned over the next several weeks. That was 4 years ago. I am 5 years from diagnosis. So far no recurrence. The research shows that hormone blockers are useful in limiting early metastasis. It does not seem to reduce distant (late) recurrence and distant recurrence is most often seen in low grade, hormone sensitive breast cancers, such as mine. Talk to your doctors and make whatever choice gives you the most peace. I found my “peace” with healthy living and no hormone blockers. Best wishes to you, Judy in KY

      about 1 month ago
    • Dianne2019's Avatar
      Dianne2019

      Happydryad, thank you. I will talk to Doctors again and see what choices I have. You have been lucky so far. Your living quality life. That’s what I want.i started taking tamoxifen two days ago. I’ll see how it works out and go from there. Best of luck to you.

      about 1 month ago
    • Debs3can's Avatar
      Debs3can

      I started on Anastrozole the week after radiation was completed. I was doing great then suddenly 5 months later I started to have terrible bone pain, fatigue and sleep issues. I talked with Oncologist and we decided to take a break of 3 weeks to see if symptoms resolved. They did not. I went off another 2 weeks and started to feel less tired but still terrible bone pain mostly in lower right leg. I also saw PCP who increased my sleep medication which may have helped with the sleep issues and fatigue. Started on Letrozole and these symptoms are WORSE! I feel like I was hit by a truck. My entire body hurts. As I type this my hands, fingers and arms are screaming in pain. I called and Oncologist to report symptoms and she said to stay on and we will discuss at my appointment next week. I worry about living like this for 5-10 years. I just don't think I have it in me to accept this as my new normal. Apparently there is one more to try and I am praying that is the answer. Not taking one is not an option since my tumor was 80-90% positive.

      about 1 month ago
    • Dianne2019's Avatar
      Dianne2019

      Debs3can thank you for telling all of this. I am 97% Estrogen Receptor so I guess I have to take something. I don’t know if I can live with this awful pain for 5-10 Years either.. I don’t like the new norm either.

      about 1 month ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Those of you suffering awful effects from AIs, I have a rather indelicate question for you: what's your BMI? (Would have asked about weight, but even BMI doesn't take into account how much of that is bone vs. soft tissue). Reason I ask is that so many drug dosages--especially in hospital settings--are computed according to body weight. Yet for most of us here, AI doses are one size-fits-all, whether you're slender, average, overweight, mildly-to-moderately or moderately-to-morbidly obese: it's the same 2.5 mg of Femara.

      I suspect that my relatively mild SEs are due to my body weight & composition, and I'd just bet that those having the hardest time are on the slim side. And I also fear that I may be paying a lethal price for my body mass, in that the standard dose may not just be easier on my body but less effective in the long run, with a higher chance of metastatic recurrence.

      Thoughts?

      about 1 month ago
    • Dianne2019's Avatar
      Dianne2019

      I am about 40lbs over weight. I honestly don’t know a lot about this stuff, it’s new to me and so much to take n and understand. I had a bone density test and came back I could easily brake a bone so I’m getting a shut every six months to strengthen my bone and boy that as painful on bones and joint too, but it didn’t last long and what is BAmI?

      about 1 month ago
    • 2943's Avatar
      2943

      I have gained 25 lbs over the last 3 year. I had never been on a diet. Lost my pregnancy weight in 6 weeks. This really fouled up metabolism. Now trying to increase exercise, keep an eye on food, etc. I am intrigued by ChicagoSandy’s thoughts. BMI is 24.1 now.

      about 1 month ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      BMI=Body Mass Index, which is a ratio computed using weight and height. (Mine's--ugh--35. I'm still 15 lbs. above my pre-diagnosis weight and a good 40-60 lbs. overweight in general). The reason BMI is used to determine the continuum of underweight to obese is that "weight" can differ according to the density of bone and the % of muscle vs. fat. Body fat % is a better measure of obesity than is BMI for that reason; but for the purposes of determining dosages it's the soft tissue--fat, muscle, connective tissue--that is (except for bone drugs) ultimately affected by the drugs. And drugs may be in the bloodstream...but more soft tissue also means more blood vessels.

      24.1 is a good BMI for a woman, especially in the face of estrogen deprivation. When mine was 25, my doctors and trainers were delighted. Overweight starts at about 28, mild obesity at 30. Moderate begins at 34 and morbid at 40.

      Dianne, if you got a shot rather than an I.V. infusion every 6 months for your bones, that's Prolia. If it was an I.V., it was Zometa (aka Reclast). I had one Zometa infusion and was sick as a dog for a week. Have had 5 Prolia shots thus far with no side effects.

      about 1 month ago
    • 2943's Avatar
      2943

      Claritin day of and two more to offset the Prolia ickys!

      about 1 month ago
    • petieagnor's Avatar
      petieagnor

      @Sandy. You ask a lot of questions that I have no answers. Here's what I know. At age 60, I had Stage III BC in my left breast in a duct. I had 7 chemo infusions covering 14 weeks. I cancelled the 8th infusion. After chemo, a lumpectomy, followed by radiation. I saw my surgeon annually for a mammograms then MRIs. My family & I hated my Dr. so I quit going as soon as I could. My surgeon was great so I stayed with her. My cardiologist found my MBC after an ablation. Things have changed so much since '06. I'm 73 with a-fib. Hope this helps. I take each day as it comes. My BC was a bump in the road & I drove on. This trip is a little more difficult, but I've last 3 years.

      about 1 month ago
    • Cincykid's Avatar
      Cincykid

      Diane2019, over a period of 2 1/2 years, I tried every oral AI then faslodex injections. Due to side effects (including internal bleeding), I said enough. Unsure about the BMI part of the discussion. My # is 22.

      about 1 month ago

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