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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • Megansgrandma
    Megansgrandma Member Posts: 29

    HapB, I took anastrozole from Breckenridge for 2.5 years. The bad joint pain was only the first few months. I went with Teva because I had neuropothy in top of my feet that seemed to get worse. With Teva, it went away.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Spookie, I doubt you're in big trouble. What a maze balancing drugs, finding ones that aren't contaminated in manufacturing, making sure they don't interact or cause other problems. ARGH!!!

    HapB, why are you angry that Accord is made in India? I would be angry that their quality control and manufacturing conditions aren't up to snuff.

    HUGS!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Just read this discouraging article in Netscape News' Health page. Take AIs or Tamoxifen for many years Looks like our best method of preventing BC from recurring lies in taking these drugs for 10 years or longer (assuming the SEs are tolerable). At least we can assume they do work.

    HUGS

  • Golden01
    Golden01 Member Posts: 527

    Took some time this morning and located a list of the companies that are approved to manufacture anastrozole. Accord and Teva are the only brands that my pharmacies have provided. I have bad joint pain on the Accord brand but do well on Teva. Have three weeks supply left so am hoping the posts about Teva upping the supply are correct. Here is the list, anyone tried some of the other brands?

    https://www.drugs.com/availability/generic-arimidex.html

    Generic Arimidex Availability

    Arimidex is a brand name of anastrozole, approved by the FDA in the following formulation(s):

    ARIMIDEX (anastrozole - tablet;oral)

    • Manufacturer: ASTRAZENECA PHARMS
      Approval date: December 27, 1995
      Strength(s): 1MG [RLD][AB]

    Has a generic version of Arimidex been approved?

    Yes. The following products are equivalent to Arimidex:

    anastrozole tablet; oral

    • Manufacturer: ACCORD HLTHCARE
      Approval date: June 28, 2010
      Strength(s): 1MG [AB]
    • Manufacturer: APOTEX INC
      Approval date: May 11, 2012
      Strength(s): 1MG [AB]
    • Manufacturer: CIPLA LTD
      Approval date: June 28, 2010
      Strength(s): 1MG [AB]
    • Manufacturer: DR REDDYS LABS LTD
      Approval date: June 28, 2010
      Strength(s): 1MG [AB]
    • Manufacturer: FRESENIUS KABI ONCOL
      Approval date: June 28, 2010
      Strength(s): 1MG [AB]
    • Manufacturer: MYLAN
      Approval date: June 28, 2010
      Strength(s): 1MG [AB]
    • Manufacturer: NATCO PHARMA LTD
      Approval date: June 28, 2010
      Strength(s): 1MG [AB]
    • Manufacturer: SANTOS BIOTECH
      Approval date: June 28, 2010
      Strength(s): 1MG [AB]
    • Manufacturer: TEVA PHARMS
      Approval date: June 28, 2010
      Strength(s): 1MG [AB]
    • Manufacturer: WEST-WARD PHARMS INT
      Approval date: June 28, 2010
      Strength(s): 1MG [AB]
    • Manufacturer: ZYDUS PHARMS USA INC
      Approval date: June 28, 2010
      Strength(s): 1MG [AB]
  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    HapB, This was a retrospective study of nearly 70,000 women with ER+ BC. It was NOT done by Big Pharma. The "senior study author Dr. Daniel Hayes of the University of Michigan Comprehensive Cancer Center in Ann Arbor." That is one of the most respected universities and cancer centers in the country. Please make sure you read the whole article and not just the headline. There are many details in the article that are important to understanding the study's conclusions.

    HUGS!

  • spookiesmom
    spookiesmom Member Posts: 8,178

    Nice article Peg.

    That may be true Hap. Why not ask Steve Jobs, or Steve McQueen how it worked for them?

  • lohoff
    lohoff Member Posts: 45

    PontiacPeggy: Thanks for the article. I read it with great interest. I have made some positive changes in my health plan in an effort to combat the side effects of AIs and in general to help me never to have a cancer recurrence.

    1. I refuse to stress out anymore about having had cancer, taking an AI, and a cancer recurrence.

    2. I switched from Anastrozole to name brand Arimidex because of the joint pain. I have had great results with Arimidex but I also take curcumin daily to help with joint swelling. I have not had any side effects on Arimidex except for joint pain. I get the Arimidex from their website. You have to get a 3 month supply but it's only $90.

    3. I take exercise classes at my YMCA two days a week and do a workout dvd at home every day. This has helped tremendously with strength, fatigue and balance, which has been off since chemo.

    4. Research confirms that a healthy weight and at least 30 min/day of cardio exercise helps to reduce a cancer recurrence.

    5. I began a Ketogenic diet a month ago that is basically very low carbs, no sugar, and moderate fat and protein. I have lost 14 pounds so far. I have a lot more to lose, but I'm sticking with this eating plan for a long time. All of my doctors are on board with me following this diet.

    Why am I following this diet? Well, basically after menopause, estrogen is stored in your fat cells. Estrogen was feeding my cancer. I was 95% positive for estrogen. I hope that as I drop to a healthy weight, I will have much less estrogen to feed any cancer cells still lying around in my body. Also it has been proven that cancer cells like sugar. The only sugar in my diet comes directly from vegetables and the limited amount of fruit I eat monthly.

    My body has switched from burning carbohydrates as fuel to using ketones and my own fat for energy. Lack of sugar in my system will hopefully starve any remaining cancer cells. I feel amazing and will not go back to eating a high carb/high sugar diet. I am not an expert on anything, but I felt it was important to lose weight and get as physically fit as possible. I refuse to sit back and not be in charge of my own health. This is my way of fighting back and taking back some control of my cancer treatment.

    Hugs to all of you on this journey. Heart

  • Golden01
    Golden01 Member Posts: 527

    HapB - Good question. List may be out-of-date. I only checked the one website.

  • Megansgrandma
    Megansgrandma Member Posts: 29

    Thanks Peggy for article. I am interested in any updates or research. My oncologist told me a year ago that she may change how long I take AI's from 10 years to 5. She was recounting research that said with some women, the long term side effects from 10 years do more harm than good. I have a year and half to make 5 years, so we shall see.

    lohoff, I too have started Keto about 2 months ago. I have lost 20 lbs. and want to loose more. It's really doable after you get past the sugar withdrawals...Praying I can make it a lifestyle change.

    Blessings ladies.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    didn't work for them. They DIED.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    if I said what I think the mods would ban me. I’m not willing to do that over this and you.

  • lohoff
    lohoff Member Posts: 45

    HapB: I got the information for the ketogenic diet from my Naturopath doctor. I asked him if he had a supplement to help me lose weight. I was trying so hard to lose weight, but on Arimidex, I just kept losing and gaining the same two pounds for months. I was getting discouraged. I had already lost 26 pounds before Arimidex but the scale wouldn't budge for 4 months. He told me that he didn't have a supplement but I could try the ketogenic diet. There is a lot of information online and a lot of facebook groups dedicated to this diet. I did a ton of research myself because he just gave me a very tiny booklet. You lose quite a bit of weight the first week (mostly water), then about 1 to 3 pounds/per week after that. It's going slower for me now - maybe about 1.5 to 2 pounds a week. But I don't care how long it takes. I still have 90 pounds to lose (lost 40 pounds since last year at this time). You lose a lot of inches on this diet. It's amazing how much bigger my clothes are after only 1 month.

    Hope this helps. Smile

  • lohoff
    lohoff Member Posts: 45

    HapB: Insurance does not cover it in my state, but I think it does in some. I was so fortunate to find a Naturopath in my area of NE Ohio. I pay $65 an hour and go every other month. I originally sought a Naturopath because my medical oncologist put me on a bunch of supplements and I wanted to make sure I was taking really good ones. He has been so helpful with the side effects of chemo, radiation and AIs. I am improving every time I go and recently my blood work was just about normal. I only had 2 areas that were a little low. After chemo, nothing was in the normal range. LOL

  • lohoff
    lohoff Member Posts: 45

    HapB: They are not MDs but they do go to naturapathic medical school. Here is what the website for my ND says: "Dr. Ted has been helping people in the M. Valley for over 15 years to achieve a level of health that allows them to not only do what they want with their lives, but have the energy to fully enjoy it. He believes that when given the right tools, the body can heal itself. Because of this, he focuses on helping patients with a healthy diet, along with vitamins, minerals, and other nutritional supplements to give the body the nutrients needed to heal itself. In order to understand what is needed, his evaluation goes deep into your health to understand the underlying health concerns and get to the root cause of the problem. Only then can therapy be truly healing and not just covering up the symptoms.

    In August 2001, Dr. Ted received his Doctorate of Naturopathic Medicine degree from the Southwest College of Naturopathic Medicine and Health Sciences in Tempe, Arizona, which is a four-year, graduate-level naturopathic medical school. He was educated in all of the same basic sciences as an MD, but also studies holistic and nontoxic approaches to therapy with a strong emphasis on disease prevention and optimizing wellness. He received his Bachelors of Science degree in Biology with a minor in Chemistry from Bowling Green State University, in Bowling Green, Ohio in August 1996."

  • dtad
    dtad Member Posts: 771

    lohoof...congratulations on your weight loss! IMO the best scenario to lower recurrence rates is weight loss, daily exercise and anti hormone treatment. Unfortunately most women gain weight and have difficulty exercising while on an aromatase inhibitor. My issue has always been that I find that very contradictory. Good luck to all. These are not easy decisions.

  • lohoff
    lohoff Member Posts: 45

    dtad: I totally agree with you.

  • Ygammyyet
    Ygammyyet Member Posts: 2

    I have been on arimidex for two years. Exactly at the two year mark I developed two swollen and painful hands along with a trigger finger. I currently have adhesive capsulitis in both shoulders (frozen). My muscles and joints ache. My dr. Said to go off for three weeks which I did. I was still the same it not worse. I went back on it and after four days my pain increased to the point my husband had to get me up.

    I have taken myself off as of yesterday and will inform my dr. It’s scary and I will worry a lot. A healthy diet with no SUGAR IS A MUST. Exercise! Estrogen is stored in fat! I have written a letter regarding my decision. Will drop off tomorrow at dr’s Office.

    I wish you the very best. Keep me info

  • Ygammyyet
    Ygammyyet Member Posts: 2

    weight loss and exercise! NO SUGAR!! Cancer feeds off suga

  • sgabbert
    sgabbert Member Posts: 14

    I took Letrozole for 4 months and was in so much pain no matter what I did and took myself off of it before even talking to my onco about it. He had me not take it for an additional 3 weeks and then I was switched to Anastrozole which the pain eased with but I still have some stiffness in my arms/elbows/fingers and back in the mornings. The pain in my hips and knees happens throughout the day especially after sitting for any period of time.

  • batsy
    batsy Member Posts: 5

    For those of you who stopped Arimadex/anastrozole because of SEs that included cognitive changes, and for those who noticed cognitive changes during 5-10 years of anastrozole, did you find your cognitive function improved once you were off it? If so, how long did it take for you to notice improvement? I'm only 7-10% ER+ (stage 3 grade 3; DD AC and Taxol) and worried about starting anastrozole after radiation in January. I'm guessing I'll be told to at least try it for awhile. The study that concerns me is from 2016, "Patterns of Change in Cognitive Function with Anastrozole Therapy."

  • batsy
    batsy Member Posts: 5

    Hi HapB! It won't let me post a link, but here it is in long form (replace dot with real dot): www dot ncbi.nim.nih.gov/pmc/articles/PMC4512875/

  • Megansgrandma
    Megansgrandma Member Posts: 29

    Batsy, If it's any help, I have been on Anastrozole since Sept.2014. and I have not noticed any cognitive changes at all. I think everyone is different on this. When I was going through dose dense chemo I did have mild chemo brain towards the end of 8 treatments. Maybe having already gone through menopause in 1998 made a difference.

  • lrwells50
    lrwells50 Member Posts: 74

    My knee that is a total replacement doesn’t hurt, lol. The other can be really awful after sitting for a long period, but it comes and goes. Some days are worse than others. My hips also hurt a little, but not like the knee. My niece that’s a PT suggested turmeric, so I have some on order. I had been taking Move Free, with glucosamine and chondroitin, but she said that’s more for maintaining good joints, which mine haven’t been for years

  • castigame
    castigame Member Posts: 336

    Too early to tell. Today is about #18 for Arrrghrimidex. I am willing to suck it up SE wise. Knock on wood it has been tolerable. Been walking 8000 steps per day on average. If I dont move I ache more. Small weight gain but I am still 15 pound lighter than prechemo. Been very conscious about diet and exercise. We shall see.

  • batsy
    batsy Member Posts: 5

    Thanks, Megansgrand and Castigame, that's great to hear you're both thriving!

  • GKL
    GKL Member Posts: 8

    A quick question - I'm on Anastrozole for 5 years and only through the first 5 months. How long does the MO usually have you as his patient? The full 5 yrs or does he transfer you to your primary at some point ?


  • GKL
    GKL Member Posts: 8

    A quick question - I'm on Anastrozole for 5 years and only through the first 5 months. How long does the MO usually have you as his patient? The full 5 yrs or does he transfer you to your primary at some point ?


  • spookiesmom
    spookiesmom Member Posts: 8,178

    I was told 10 years on the med. Different dr say different amounts of time. I assume I’ll see MO forever. Nobody has ever said otherwise but pcp watches me too. And all the other specialists I see.

  • castigame
    castigame Member Posts: 336

    I think either my pain tolerance went way up due to all treatments including surgeries or I am extremely fortunate.

    I am on Ativan .5 mg at night along w Celexa 10mg in the morning. I make a conscious effort to walk absolute min 30 a day every day. It was constant drizzle all day this past Thursday but I walked 90 min. I take Meloxican 15mg . Daily Epsom Salt scrub. Yea should not forget Flexitouch Pump daily.

    SE wise no hot flashes, no mood swing, no depression, small weight gain which I am trying to control very hard. Joint painwise no where near what it was right after chemo. No hair loss I know of. Joint pain is annoyingly subtle and constant.


    All in all I feel blessed and will do almost anything to take Arrrghrimidex for the next 5 yrs min.

  • sgabbert
    sgabbert Member Posts: 14

    I understand you stay with your MO for those 5 years and longer. My MIL still sees her MO and her diagnosis was 7 years ago but she also did chemo and radiation but no meds like this.