Aromatase Therapy Timing Key in Breast Cancer Survival

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  • mcgaffey
    mcgaffey Member Posts: 241
    edited January 2012

    I support, ruth, we started on this journey about the same time. Know, it is doable. I did rads and then went to Ireland and then when I returned started Arimidex. I have one more prescription to fill in March and I am done. My docs get trained in Germany and Arimidex is what they use with us, post Menopausal ladies. Big hugs. Before you know it, you will be writing like I am.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited January 2012
    Congratulations to us, mcgaffey! Cool
  • EVO13
    EVO13 Member Posts: 4
    edited February 2012

    Thank you so much. I am doing some more research and will keep you posted.

  • ptdreamers
    ptdreamers Member Posts: 1,080
    edited February 2012

    EVO13, My MO started me on Aromasin because I have osteoporsis and it has less effects on the bone supposedly. I am 65. Ask your MO for his/her reccomendation.

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    I'm postmenopausal and have decided to try the regimine of tamox for 2/3 years followed by an Al....provided I can tolerate any of it.  I just passed on rads and didn't need chemo, so I figured I would give tamox a try and see how it works.  I plan to start on a 1/2 dose to see if I can tolerate it and then step it up.  Not looking forward to hair loss and vaginal dryness!  I had a complete hysterectomy at 50 and was put on HRT for 20 years.  Now bc, so off everything.

  • AMP47
    AMP47 Member Posts: 200
    edited February 2012
     Very dishearting-my doctor has not even mentioned this to me.  Aromatase Inhibitors in Products Marketed as Dietary Supplements: Recallincluding Advanced Muscle Science (Arom-X, Arom-X UTT, Arom-XL, 4-AD, and Decavol), ArimaDex, Clomed, Off Cycle II Hardcore, iForce - Reversitol, Novedex XT
    [Posted 09/20/2010; UPDATED 10/08/2010]AUDIENCE: Consumer, Family Practice, PharmacyISSUE: Products marketed as dietary supplements contain aromatase inhibitors, commonly known as “ATD.” Adverse events associated with the use of aromatase inhibitors could include the following: decreased rate of bone maturation and growth, decreased sperm production, infertility, aggressive behavior, adrenal insufficiency, kidney failure, and liver dysfunction. Consumers with liver, kidney, adrenal, or prostate abnormalities are at higher risk for developing adverse events. BACKGROUND: The FDA concludes that products containing aromatase inhibitors have a reasonable probability of resulting in permanent impairment of a body structure or function in at risk consumers. FDA has notified manufacturers that these products do not meet the definition of a dietary ingredient and therefore the product is in violation of provisions of the Food, Drug and Cosmetic Act. Many of these products are or had been sold nationwide, both in retail stores and via the internet directly to consumers. Some have been discontinued but some online retailers may still have remaining inventory that they are offering for sale.RECOMMENDATION: Consumers who have any of these products in their possession should stop using it immediately. If consumers experience any adverse side effects due to its consumption they should contact a physician. Photos of the recalled products are available through links on the company press releases, seen below.Healthcare professionals and patients are encouraged to report adverse events or side effects related to the use of these products to the FDA's MedWatch Safety Information and Adverse Event Reporting Program:Complete and submit the report Online: www.fda.gov/MedWatch/report.htmDownload form or call 1-800-332-1088 to request a reporting form, then complete and return to the address on the pre-addressed form, or submit by fax to 1-800-FDA-0178 [10/07/2010 - Press Release - Gaspari Nutrition Inc]
    [09/15/2010 - Press Release - Kilosports, Inc]
    [09/13/2010 - Press Release - Genetic Edge Technologies, Inc]
    [09/16/2010 - Press Release - Advanced Muscle Science, Inc]
    [09/16/2010 - Press Release - Fizogen Precision Technologies, Inc] 
    [09/16/2010 - Press Release - iForce Nutrition LLC]
     -
  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2012

    The only persons who are supposed to be taking aromatase inhibitors are POST-menopausal women who are worrying about dying from cancer!! They are serious drugs, and certainly should not be taken as suppliments taken by ANYONE. 

    The bone issues are the reasons we should get bone density tests, take extra calcium and vitamin D, do weight bearing exercises etc.

    No man should be taking it ever; so if they are; I'm not suprised that it would cause fertility and prostrate problems.

    One of the reasons we get regular blood work is to check to make sure our liver, kidney, and other functions are doing OK.

    Probably the moral of the story here is not to take suppliments which have not been approved by both your doctor and the FDA.

  • Vicks1960
    Vicks1960 Member Posts: 473
    edited February 2012

    I agree with Ruthbru!!!!!!

    I am on Letrozole (generic form of Femara) and the drug insert with it specifies the bone density testing.  Also, I have read warnings about pre or perimenopausal women taking AI.

    I personally will not take ANY dietary supplement without checking with my MO (or his pharmacist) .

    vickie

  • AMP47
    AMP47 Member Posts: 200
    edited February 2012

    It is not about men taking AI in small amounts  or that breast cancer  is not a serious disease.  It is about choice.  

    The side effect sheet attached to the AI, I am taking, did not list kidney or liver complications.  Future more these side effects absolutely should be discussed with the patient, first for the sake of clarity.  

     

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2012

    Any drug, even over the counter ones like asprin or tylenol, can have liver or kidney complications.

  • 3bells
    3bells Member Posts: 169
    edited February 2012

    Hi everyone. I found this thread just starting to check out what I have to look forward to with armidex (generic). I've been on it about three weeks. I'm wondering how often you have liver/kidney checks?

  • Vicks1960
    Vicks1960 Member Posts: 473
    edited February 2012

    3bells:

    I may be wrong, but I believe most of the monitoring for these issues are done with blood tests when you see your MO..Might ask your Dr or his nurse.

    Vickie

  • ptdreamers
    ptdreamers Member Posts: 1,080
    edited February 2012

    3bells, Your MO will follow it I'm sure.When I have my next check-up they told me to come a few days early to have my blood drawn so that all the results will be ready when I see the MO. Hope that helps you. I am very concerned about my liver as it is fatty already so I want to know if the drugs are doing anything.

    By the way I found out I had a fatty liver when my ALT's were elevated on a routine blood test. I was taking aspirin and ibruprofen for arthritis. I stopped taking them and my allergy meds and the values returned to normal. Now I am super cautious about what I take.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2012

    It is just part of your regular blood work when you have a general physical or oncology recheck.

  • AMP47
    AMP47 Member Posts: 200
    edited February 2012

    Ruthbru- do you not feel a doctor should explain the dangerous side effects of the AromataseInhibitors to their patient?  

    Aspirin, Tylenol and Advil are not in the same class of drug with Aromatase Inhibitors.  The previous mentioned drugs are anti inflammatory drugs with possible effects on kidneys and liver.  

    On the other hand, Aromatse Inhibitors  suppress estrogen in your body: a hormone that is very necessary for a healthy body: which includes all the organs.

    Do anti inflammatory drugs effect your liver in kidneys? Yes. Side effects of these drug are common knowledge.  

    Do Armatase Inhibitors effect kidneys, liver and other vital organs? Yes, in a more dangerous way than anti inflammatories..  Side effects are not common knowledge.

    When the FDA recalls a drug because of its small presence  in a supplement,  the first people to find out about the recall are retailers then customers. Ideally, the next population using these drugs should be breast cancer patients.  

     Aromatase Inhibitor have dangerous side effects. A recall of these drugs should be the "news flash" of the day.  Furthermore, oncologist need to inform their patients as to why the FDA recall the supplement containing Aromatase Inhibitors?

    I am not sure what your point  is when comparing Anti inflammatory to Aromatase.Inhibitors and the damage to organ being similar.   Comparing effects of an Anti-inflammatory to a Aromatase Inhibitor would be like recommending a sling shot versus a 45 caliber gun  to kill a bear.   

     

     

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2012

    Of course, they should tell you the possible SEs (of any drugs). I am just saying, that for me personally, the huge difference it made in reducing my chance of recurrence was the most important thing and trumped any potential SEs.

  • AMP47
    AMP47 Member Posts: 200
    edited February 2012

    Ruthbru

    Exactly my point-a womans right of choice.   I wish you a very healthy future.  

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2012

    So far, so good (typed while knocking on wood Tongue out).....a healthy future to us all!

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited February 2012

    What are the percentages? My onc never told me ---and since I'm having bad SE's I'm wondering if my chances are really that much better if I take it.  I also have severe osteoporosis (have mentioned this on other threads too) and am very worried about further bone damage. Before I was diagnosed with this cancer I broke my wrist, then my hip and last year had 3 spinal fractures. And that was before I knew I had the cancer and therefore had not started Aromasin. 

    So does anyone know what my odds are of a recurrence without taking the Aromasin?

    And do the Aromase inhibitors keep tumors from starting in the first place or do they just slow the growth of any new ones that might pop up?

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2012

    3bells,

    I have been on Arimidex for 3 months. My se's have been minimal. I was post menopausal when I started. I get monthly blood work as I am also on a bisphosphonate, Aredia. Yes, AI's are powerful drugs and should not be taken without full awareness but each person's situation is different. Me? I have a single bone met and I will gladly take AI's to keep further mets at bay. I feel and look great and have a job I love. I do take D3, glucosimin/chondroitin and work out at least 5 days a week. I have no idea how long this run will last but believe that Arimidex will be major part of it.

    Caryn

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited February 2012

    Oh my gosh!  I really think docs should be up on all drugs. I'm sure they get lots of literature about them. My onc said there was no generic for Aromasin. After finding out the high cost I called my insurance company and they said there was: Exemestane. Huge difference in price!

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited February 2012

    Just an fyi; I have been doing very well on the Arimidex combined with Fosamax.   We'll see what my next DEXA shows, but am not due until July.   I lost a lot of bone mass my first year on Arimidex, so hopefully the Fosamax will help keep significant loss at bay.  

    Not sure why I wasn't put on the infusion one.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Hello ladies,

    I tried to take AI's and Tamoxifen. Both made me ill. So, I quit after several weeks of misery. I do take some products from my naturopath oncologist that act like Tamoxifen but don't cause any side effects.

    I wish us all the best of luck, whatever we do.

    tucker

  • Pessa
    Pessa Member Posts: 519
    edited February 2012

    tuckertwo,

    If your cancer was ER- why would you be taking AIs or tamoxifen?

  • sadie5254
    sadie5254 Member Posts: 39
    edited March 2012

    Saw the oncologist today and she suggested Aromasin.  I am stage 0 with no invasive cancer, so I was hoping she would say HRT not necessary.  I'm 54 now.  This may reduce my chances of DCIS in the good breast from 12% to 7%.  I absolutely cannot wrap my head around the side effects.  My son suggested I try it for a couple of months and stop if I can't stand it.  Anyway, I'm just going to start researching as much as I can find.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2012

    Your son has given you good advice. I am almost done with my 5 years & have not been bothered by SEs. Most people do fine (naturally the people who have problems talk more about it, everyone else is just out living their lives). Best of luck!

  • mybee333
    mybee333 Member Posts: 1,189
    edited March 2012

    Every time I try arimidex I get the most severe headaches of my life, at some point into treatment.  There has been talk of keeping me on around the clock vicodin or sending me to a neurologist for medication to treat for migraines.  They just keep wanting to add more and more meds!!  I just don't know.  I would like to forgo but am scared.  I am with a new oncologist.  I see her again next week.  I wish I just didn't have to deal with the whole thing!!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2012

    have them try a different anti-hormonal....you don't want to just keep adding medication!

  • Layla2525
    Layla2525 Member Posts: 827
    edited March 2012

    Medigal, dont worry about the milk, Asian women usually use no dairy products at all but get lots of calcium from seaweed and bok choy and of course tofu is rich in calcium but i would ok with the dr b4 I ate that due to conflicting info or any change in diet for that matter. i would think the bok choy should be fine,it looks kind of like leeks and doesnt have much of a taste,I would just throw it in with whatever veggies I am eating. I am on Arimidex despite me telling the MO that I had osteo and inherited it from my Dad who was 6 ft all my life but when he passed he was only about 5 ft due to spine totally destroyed by osteoporosis. My MO just says take calcium but it constipates me even when I take with magnesium!

  • ptdreamers
    ptdreamers Member Posts: 1,080
    edited March 2012

    Layla, Have you tried the calcium citrate? Not constipating as calcium carbonate.

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