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Taking Arimidex without Prolia or Other Bone Medication

Now post-surgery and radiation, I'm starting hormone treatment in a few weeks. I had a fairly early menopause, am thin and fair and avoid the sun due to previous skin cancers, and was diagnosed with osteoporosis 3 years ago. At that time, I didn't follow the bone doctor's advice to start immediately on a bone-building medication. Now the MO is prescribing Prolia along with the Arimidex. and while I fully understand what Arimidex does to the bones, I still hope to avoid the bone drugs. My recent bone scan results show no change -- good or bad -- in density over the last 3 years. I hope to follow a strict exercise, diet and supplement regimen.

The bone-necrosis danger scares me a lot -- my dentist has seen quite a bit of it -- and I've read a lot about how Prolia and the other drugs maintain old, weak, unhealthy bone. So even if the density improves, there's still the danger of sudden, severe fracture.

Has anyone managed to take Arimidex or another AI without taking a bone medication?

Comments

  • peaches1
    peaches1 Member Posts: 53

    My dentist has been in practice for 30 years, and she told me recently that she has only seen one patient develop bone necrosis, and it was a guy, and he was on oral meds. I've been on femera for two months, and I had a DEXA scan right before I started taking it. I found out that my osteopenia has increased slightly in the spine, but has remained the same in the femur. I am sure that my MO is going to suggest that I go on prolia or something similar next time I see him in a few weeks. I just had to have a root canal a few weeks ago though, and so I will probably have to wait 3 months before I go on prolia. That is why I am not in a big time hurry to see the MO for my three month followup. I have no problem eventually going on prolia though, assuming medicare will pay for it. One of my sister's was diagnosed with stage 1 BC four years ago, and she had a lumpectomy and radiation. She was on tamoxifen, but was switched to arimidex a year ago, but her DEXA scan was in the normal range, and so she was not put on osteoporosis meds.


  • doxie
    doxie Member Posts: 700

    I started five years ago with osteopenia and am finishing up with slightly lower bone density, but still safely just in the penia range. I had only one infusion of Zometa the entire time. MO insisted, then backed down. So I've kept my density in a decent range with exercise and good levels of calcium, Vit D and good nutrition.

    Had you been exercising and supplementing before the BC diagnosis? If not and if you exercise and supplement during AI treatment, you might keep density stable. But if you've been doing everything possible and not gained or sustained bone mass, you may need to supplement with a bone density medication.

    You could request DEXA scans each year to assess the situation and start meds if there is a troubling downward trend. It is your decision.

  • Mstein1970
    Mstein1970 Member Posts: 11

    Thank you both for your replies.

    Doxie, I was not exercising or supplementing enough before the BC diagnosis. My diet is very good, but I definitely have not been doing everything possible to gain bone mass. After being diagnosed with osteoporosis 3 years ago, I wanted to take an osteoporosis-focused exercise class. But they're hard to find, and I couldn't fit the one I found into my schedule. Now I certainly have to make that a top priority. And the cancer center where I'm being treated may have an appropriate class at a workable time.

    Also, my doctors don't recommend supplements other than D3. I have friends who take calcium and magnesium, but calcium is treated with caution by doctors. And when I mention K2 to a doctor, I get no response.

  • EWB
    EWB Member Posts: 592

    I had been on femara for 9 years, recently switched to arimidex. Bone health/bone strength is known to be a concern with arimidex. I am not a medical doctor or have medical knowledge but I would encourage you to do all you can to help (protect) your bones especially since you are dealing w osteoporosis. Certainly you can do exercises at home, anything that is weight bearing (walking) is helpful. Some docs will do dexa scan at the beginning for baseline - you may already have since you were dxed with osteoporosis a few years ago. Good luck.


  • doxie
    doxie Member Posts: 700

    I walk/hike, lift light weights (my blind doxie, too), jog infrequently, climb stairs at work, but no organized exercise. Too much of a bother to find something, nor have the time.

    Try to find something you like and easy to do, so you will stick to it. You could hire a trainer to get you going, then work on your own.

  • I just had my cancer removed. They are testing me to see if I need chemo, they sayprobably not but radiation yes. The problem my bone density test came back and I have osteoporosis so the pill Arimidex they want to put me on, they really can't. To top it off my body is allergic to everything. I have been on a raw diet since November 2016 when this all started. I also do edible hydrogen peroxide and kefir with flaxseed oil and flax seed. In the beginning I was told I has breast cancer on the left side and lymphoma on the right but they could not find it on the right when they went in. Anyway my question is there an alternative I can do to the Arimidex

  • muska
    muska Member Posts: 224

    If I am not mistaken all aromatase inhibitors, not just arimidex often make bone density worse. I started arimidex three years ago. My first DEXA done before starting arimidex showed slight osteopenia in the spine. Despite regular exercise, including weight lifting, supplementation of vitamin D3 and good nutrition two years later osteopenia in the spine got worse and my MO recommended Prolia. I was hesitant but some recent research showed reduction in the bone mets occurrences in women who are on Prolia and this was the deciding factor for me. I have had two injections so far and no side effects worth mentioning.

    With regards to jaw necrosis it happens extremely rarely and mostly in those who receive Xgeva, not Prolia. Xgeva is the same denosumab that is given at 120 mg every month to stage iV patients. Prolia is 60 mg of denosumab given only twice a year.

  • moderators
    moderators Posts: 7,691

    LittlePolf-

    We want to welcome you to the community here at BCO. Have you discussed alternative options to Arimidex with your doctors? There are other aromatase inhibitors, but deciding if one will work for you and your cancer is something that should be discussed with your doctors.

    The Mods

  • lisa2012
    lisa2012 Member Posts: 288

    I have been taking Aromasin for 2 years- a year of Tamoxifen and a year of Arimedex before that. Have had a bone density scan twice during this time and (so far) my bones are staying good! My MO asks what my secret it. Don't know!

  • chisandy
    chisandy Member Posts: 11,171

    LittlePolf, being on such a drastic diet for so long can make your body intolerant to substances most people can handle just fine. And there is a difference between allergy & intolerance—an allergy is a specific immune-mediated reaction to an allergen (a substance such as pollens, certain drugs or foods to which most people are not sensitive), causing mast cells to release histamine that results in respiratory or skin symptoms such as sneezing, asthma or hives (if severe, life-threatening anaphylactic shock); an intolerance is an inability to tolerate a substance that also does not affect most people, but does not involve the immune system and usually manifests as a visceral digestive reaction. But there is another class of substance known as a “generalized irritant” (like smoke, smog, VOC fumes) to which, if exposed in sufficient quantity for long enough, most people will have an adverse reaction—but like an intolerance, it does not involve the immune system. An allergic reaction is basically the result of a hair-trigger immune system, which treats an allergen as a dangerous invader rather than the harmless substance it is to most people. Multiple chemical sensitivities can be debilitating but do not involve the immune system. You might want to visit an allergist/immunologist to very, very slowly try a “challenge” to reintroduce certain foods to your diet, in tiny quantities at first, one food at a time.

    Whether or not you have allergies, the SEs of AIs (and ability to tolerate them) vary from patient to patient, from drug to drug within the class of AI, and even from different manufacturers’ formulations of a particular drug. You might be able to handle Arimidex (brand-name, patented original version of anastrozole) but not a particular manufacturer’s generic version. Some people are better able to handle exemestane (Aromasin) or letrozole (Femara), or vice versa—it’s a crapshoot and you’ll never know unless you try.

    Your doctors want you to tale anastrazole because your cancer was estrogen-sensitive—its cells needed estrogen to survive. Even after surgery and radiation that removed the tumor from your breast and killed any stray cells left over in it, there is a chance that some microscopic tumor cells may be somewhere still in your blood or lymphatic system (called “micromets” or even “nanomets”). Both chemo and anti-hormonal therapy are called “adjuvant” therapies, to kill (poison or starve, respectively) those tiny cells and make the cancer less likely to recur. As you mentioned, chemo might be unnecessary or cause more harm than benefit if your kind of tumor is slow-growing. You are probably being prescribed an aromatase inhibitor (AI) because you are past menopause and studies have shown AIs to be superior to Tamoxifen in starving estrogen-sensitive tumor cells. (The AI prevents production of estrogen; Tamoxifen blocks the tumor cells’ access to estrogen).

    Tamoxifen actually may strengthen bones because it does not keep your body from making estrogen. But it is not advisable for postmenopausal women (or those who no longer have ovaries) unless every AI has been tried and none can be tolerated. But as pointed out, the estrogen insufficiency that is the goal of an AI will generally accelerate some normal symptoms of aging, one of which is weakening of bones. So before your doctors start you on anastrozole, you should have a baseline bone density scan (DEXAScan, a fast, painless and noninvasive scan) if you haven’t already, to determine whether your bones are okay, thinning (osteopenia) or weakening (osteoporosis). If they’re okay, your doctors may let you postpone bone-strengthening treatments and concentrate on physical (weight-bearing exercise) & dietary (more calcium, D3 and magnesium) means of keeping your bones normal. But know that although there is agreement that oral (Fosamax, Boniva) or intravenous (Zometa, Reclast) forms of the class of bone drugs called bisphosphonates can help prevent spinal compression fractures of the back & neck, and that there is some contention that they might help prevent or at least delay onset & progression of bone metastases (“mets”), studies increasingly show that only injected denosumab (Prolia, Xgeva) can help prevent fracture of the long bones such as those of the arms, legs and hips. And Prolia has proven superior in preventing or delaying bone mets.

    But though you as a patient have the final say as to what treatments you get, and that there are alternatives to bone drugs if you don’t yet have osteopenia or osteoporosis, know that refusing anti-hormonal drugs (Tamoxifen or AIs) if you were diagnosed with an estrogen-sensitive cancer is essentially playing Russian roulette.

    And I’d ditch that flaxseed and flax oil—it has phytoestrogenic effects and might reduce the effectiveness of AIs. Ditto valerian root, kava kava, garcinia, forskolin, triphala, bitter or Seville orange (even, alas, in marmalade—so much tastier than sweet orange marmalade), and St. John’s Wort. Unprocessed soy (edamame, soy nuts, tofu, soymilk without additives, tempeh) in reasonable quantities is fine; soy protein isolates like soy-based protein powders and fake meats are not—the isoflavones in them are concentrated and can mimic estrogen. Kefir is fine. Try and get your omega-3s from either fatty fish or krill oil (if you’re drinking kefir I assume you’re not vegan) if you were ingesting flax products for their omega-3s.

  • Jennie93
    Jennie93 Member Posts: 263

    I have been on anastrazole for two years now. Had a bone density test right before starting, and had mild osteopenia already. Based on that, MO recommended Prolia but having researched this before, I am not comfortable with these drugs, so I declined. I make sure to keep my vitamin D level up (test every year) and I exercise every day. Do I have some concerns, yes, but for now I'm choosing to skip the bone meds.



  • adina65
    adina65 Member Posts: 6

    ChiSandy, I have read so many of your replies and they are very in depth and useful to me when I am trying to make a decision especially about taking AI's.

    I was on Letrozole for about 6 months, didn't handle well, so I've now been on Exemestane for 6 months taking a 2 month break in between and felt better, but not wanting to be responsible for taking a "crap shoot", I went back on Exemestane last week and already getting hot flashes, night sweats and joint pain. Maybe its in my mind. I was also on Prolia for one year and my joints really hurt from that ,so I only got 2 shots over a year time. Not sure what I'm going to do about my bones, since I already have osteopenia. I guess I'll wait for my next Dexa-scan in December and make a decision on everything then.

    Again thank you for your posts they have helped me tremendously through this damn process, especially as I age or try to age gracefully with this disease.

  • B123
    B123 Member Posts: 239

    has anyone tried Effexor for bone density? I know it's for depression/anxiety but I'm told it also is used for bone density

  • MamaOz
    MamaOz Member Posts: 239

    jennie93

    How did you make out with taking no bone meds? I have osteopenia and so far have refused to take anything i have been on arimidex since beginning of Oc

  • B123
    B123 Member Posts: 239

    Hello folks, I have been on a evista for almost 4 months, I have achiness and cramping behind knees and calves and some pinching.No swelling no redness. Is this normal? Is this normal

  • aletamad
    aletamad Member Posts: 2

    My dentist told me that osteonecrosis is very rare. I am on Prolia, but my new MO said that recent thought is that you only need 6 injections which is 3 years to get benefits as it continues to work after stopping and you are on anastrazole or one of the others for 5 years. Of course that may change if they find out that the anti estrogens should be used longer.

  • aletamad
    aletamad Member Posts: 2

    I took Evista for 5 years as a cancer preventive because I was high risk for beast cancer. After the 5 years, I continued to take it to help with bone loss. Ultimately, I still had osteopenia and I was diagnosed with breast cancer. I am now on Prolia because I am taking anastrazole to prevent cancer recurrence.


  • Missy101
    Missy101 Member Posts: 2

    Hi Jennie93

    Three years on are you still not taking Prolia. I am being asked to take it but really don’t like what I have read about it and will say no to it. So much to think about