• Tubular cancer and anastrozole

    Asked by Graciez on Friday, May 17, 2019

    Tubular cancer and anastrozole

    I have been on anastrozole for almost two years. The side effects are becoming too much to tolorate. I tried lestrozole and that was worse. My MO says to take it, my RO says not to take it. My breast surgeon can see both sides. Who do you listen to? I had a very small tubular cancer, clean margins, no lymph node, stage 1. Is anyone with tubular cancer not taking hormone treatment and how are you doing?
    Graciez

    22 Answers from the Community

    22 answers
    • lujos' Avatar
      lujos

      Not tubular in my case, but there is a third hormone blocker you could try, called exemestane (Aromasin). Many report fewer side effects on that, might be worth a try?

      4 months ago
    • cllinda's Avatar
      cllinda

      I would try a different one. Drugs can be tricky but I think they really help keep breast cancer and other cancers away.

      4 months ago
    • Graciez's Avatar
      Graciez

      Hi thank you for your thoughts. My insurance does not cover exemestane. It was very expensive.
      Strange that it covered anastrozole and lestrozole. The radiation oncologist told me that he thinks I am a low risk and he doesn't think the medicine is worth the side effects. Medical oncologist thinks the opposite. It is very confusing. I also went to a seminar with a different MO and RO and they said the same thing . MO said take it RO said not to take it.

      4 months ago
    • GregP_WN's Avatar
      GregP_WN

      I can't offer help on that type of cancer or treatments, but all of us here at WhatNext wish you relief.

      4 months ago
    • tlalex's Avatar
      tlalex

      I was on anastrozole for almost a year,the side effects were more than horrible and if there had not been another choice-tamoxifen, I would have chosen to stop-quality of life! My cancer was not tubular but like you it was low stage, clear margins, nothing in lymph nodes and I went through radiation. My oncologist is an encourager-my cheerleader. She praises me each visit for making it through the drugs 4 more months. She says anytime I feel they are just not worth it we’ll stop-like she’s invested too. She always points out that for every month I add on I’m increasing my nonrecurrance chances-to make it to two years-AND YOUR THERE-cuts the risk almost in half and the closer to five I can get...well...whoohoo! So ‘for the both of us’ I set my goal a month at a time. (Food for thought-there are a lot of healthy Whole Foods that act as estrogen inhibitors-research it)

      4 months ago
    • Graciez's Avatar
      Graciez

      Thanks,tialex. I think you are my cheerleader. Lol he does not want me on tamoxifen. I still have my uterus. I see him next month and I have a list of questions and concerns. First question is why professionals are not agreeing on if I should continue the medicine.

      4 months ago
    • gpgirl70's Avatar
      gpgirl70

      I find it quite concerning that your insurance won’t cover exemestane. I have really crappy insurance and my co-pay is $32 for 90 pills. I had horrible side effects from anastrozole and none on exemestane which I’ve been taking for several years. I would think you could appeal that decision with your insurance since you can’t take the other meds. I really think it is important to take an AI but not at the cost of quality of life. I could not have continued on with anastrozole. Wishing you find a solution.

      4 months ago
    • Graciez's Avatar
      Graciez

      Thank you. I will call my insurance company.

      4 months ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      There is an appeals process for coverage denials. First. your doctor has to ask for a "prior authorization," and when the insurer denies it, (s)he has to certify that you have already "failed" a trial of the other two AIs. (This is usually what happens when an insurer will cover only the generic and not a superior--i.e., safer, more effective and fewer side-effect brand name). But you have to be prepared for the possibility that exemestane may cause the same side effects.

      Alternatives: have you tried GoodRx? Unlike "co-pay coupons" (for those not on Federally-funded insurance) GoodRx bypasses your insurance company. Yes, you do have to go out of pocket, but perhaps at a much lower cost than an insurance co-pay would have cost you had the insurer covered the drug (and if you are on Medicare, it won't count toward kicking you into the dreaded "donut hole;" of course, if you're already in there it won't count toward pulling you out, either).

      Have you tried different manufacturers' versions of generic anastrazole & letrozole? First of all, the dirty little secret is that the FDA regs state a generic needn't contain more than 75% of the active ingredient of the brand name drug, so perhaps a different generic might be a bit weaker and go easier on you.

      Second, different generics have different "inactive ingredients" (dyes, excipients, fillers, coatings, etc.) in that they're "inactive" only in relation to the main ingredient. More times than you'd believe, the side effects or at least their intensity can be caused by an allergy, sensitivity, or intolerance to these "inactive ingredients." Check out the ingredients list online of every generic mfr's version--you will see stark differences. For letrozole, the Roxane generic had fewer of those ingredients than did even the original Femara (Novartis) and its next "gentlest" generic from Teva. Unfortunately, Roxane stopped making letrozole when the company was bought by West Ward. Teva is more easily tolerated than Accord, Accord than Sun, etc.

      You have a right to demand your pharmacy order your desired generic version, and to take your business elsewhere to another pharmacy should it refuse. Pharmacies' periodic switcheroos of generic mfrs. w/o prior notice are usually driven by not just the particular versions' prices, but by the perks & kickbacks that the "pharmacy benefit managers" get from various mfrs. and sometimes pass on to either the pharmacy or insurer...just not to the customer.

      Third, and this just was revealed by the NYTimes in last week's Sunday Review section, many generics made in India (and to a lesser extent, China) may be tainted due to sloppy hygiene practices at factories (which, sad to say in the case of India, may be culturally ingrained--I'm not being racist, it's just a fact) or even contain a different drug or just the inactive ingredients. Not much you can do about that--it's up to the FDA inspectors to discover, which they often can't if the factories get advance notice of an inspection and temporarily cover up the offenses--but it's another reason to insist on switching generics if the one you're taking is made in India. (Teva is made in Israel, Roxane was made in France).

      Read the article!!! It explains the "cultural" reason: that the caste system is still informally in place and people there expect lower-status people will clean up after them--as many Indians who've moved here state was a huge reason for leaving India; and of course the massive overcrowding there. Think about why there are so many Indian physicians (very well-qualified & competent) who emigrate to do their residencies but refuse to return to their homelands to practice medicine. It's not just that they can make more money here, but that life in N. America (or Australia, the UK or NZ) is just plain safer, cleaner & more pleasant.

      4 months ago
    • Maryflier's Avatar
      Maryflier

      I was on Anastrozole for 3 months after I finished chemo. The terrible joint pain and cramping came on suddenly. Switched to Exemestane, much better!

      4 months ago
    • Maryflier's Avatar
      Maryflier

      Sorry Graciez. Didn’t read all the responses before I answered. :(. Good luck, stay strong.

      4 months ago
    • Graciez's Avatar
      Graciez

      No worries. I see my oncologist in a month and I will discuss everything with him. Thank you all for your concern

      4 months ago
    • Graciez's Avatar
      Graciez

      No worries. I see my oncologist in a month and I will discuss everything with him. Thank you all for your concern

      4 months ago
    • Graciez's Avatar
      Graciez

      My concern is that two of my docs have different opinions on if I should take the pill because of it being a low risk tubular. One says yes one says no. I'm just confused.

      4 months ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      If it helps to know this, my friend with Grade 1 tubular invasive ductal carcinoma recently completed 5 years on anastrozole.

      4 months ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      And her tumor was only 5 mm.

      4 months ago
    • wabbitz's Avatar
      wabbitz

      Gracierz, May I ask what your side effects are and when they first started happening? I have been on Anastrozole for 5 months. I have hot flashes, with no other adverse side effects right now..but I keep reading that for many, it took a long time for more to hit. My cancer was caught in the early stages, but I panic if I forget to take the hormone blocker because I am so afraid of the cancer returning. I lost my mom many years ago to breast cancer. The doctors "thought" they got all of hers.

      4 months ago
    • wabbitz's Avatar
      wabbitz

      Hmmm...my complete response wasn't posted. I wonder why. Anyway, to continue...I would like to encourage you and all of us, to try and continue to take whatever we can to give us our best chance of those cancer cells not returning. As far as the doctors having different views on our treatment and care....they are only human, like us, and can only suggest things based on educated guesses. In the end, they leave it up to the patients. I hope you find something that you can tolerate. I wish you all the best. Take care.

      4 months ago
    • Graciez's Avatar
      Graciez

      Hi my side effects gradually came on. Hot flashes, joint pain. back pain, headaches, insomnia. The worst is depression, brain fog and a feeling of being lethargic. Symptoms became worse around the 18 month mark. My breast surgeon said the pill is effective to reduce recurrence but you need to consider quality of life. I meet with medical oncologist in June. I have some information, I want to discuss with him and questions. I know it comes down to my decision. I am at the afraid to take it and afraid not to take it point. I wish you and everyone no side effects.

      4 months ago
    • Created07's Avatar
      Created07

      My cancer was in the duct..stage one..no lymph node involvement. I was put on anastrozole. I asked my onco. if it was worth it. He pulled out his laptop, checked the numbers right in front of me and said it would make only a .03% difference. He agreed to stop. I have had no problems. My age at that time was 68.

      4 months ago
    • Created07's Avatar
      Created07

      PS that was 2014.

      4 months ago
    • Graciez's Avatar
      Graciez

      Wonderful!
      My oncologist told me I had a 10% chance of a recurrence without anastrozole, 5% with it. When I went for second opinion, I was told, it's probably lower than that but would not commit to a figure. I am asking to see how he came to that figure when I go in June.

      4 months ago

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