Aromatase Inhibitor (AI) Drugs 5 years later for Breast Cancer- the good and the bad

This month marks SIX YEARS since my diagnosis with Stage 3 Triple Positive Breast Cancer and FIVE YEARS since I began taking Arimidex, an Aromatase Inhibitor (AI) Drug.

An aromatase inhibitor is a drug that prevents the formation of estradiol, a female hormone we typically call estrogen, by interfering with an enzyme. Aromatase inhibitors are used as a type of hormone therapy for postmenopausal women who have hormone-dependent breast cancer.

There are three aromatase inhibitors on the market: anastrozole (Arimidex), letrozole (Femara), and exemestane (Aromasin). Currently, none of these appears to be superior to the others with respect to activity or side effects, so a patient might receive any one of the three.

Younger women are prescribed Tamoxifen as are post-menopausal women who cannot handle the side effects of an AI Drug.

When I began taking Arimidex, at that time it was prescribed for only 5 years, so I thought I would be done now.  But research has shown that the drug keeps working for 10 or more years.  My Oncologist said because of my type, stage, and high risk of cancer, I may have to take it for the rest of my “very long life” (his words!).

So I am awarding myself for the first portion of the journey –

fiveyearaward

THE BAD – side effects:  Within 2 weeks of beginning Arimidex, I had horrible joint pain which is the #1 side effect women experience with these drugs.  I could barely walk.  After struggling to get out of bed to make it to the bathroom in time, I would stand at the top of my stairs, look down, and begin to cry as the pain would be so intense.  I remember one particular evening when I was with a group of friends and had to walk only one block to a musical event.  I had to stop 3 times, tried to hide my tears and make up excuses why I kept stopping.

Because I was so high risk, I knew I would have to tough it out.  I began taking one Aleve a day which took the edge off just a little bit.  Then I tried it 2 Aleves every other day.  That was more effective for me.  That went on for about a year.  After discussions with my Medical Oncologist, I made up my mind I was going to just try and get through the pain as I didn’t want to switch drugs to see if another was better even though he offered me some alternatives.

So at about the 2.5 year mark, when I told my Oncologist that my pain had lessened greatly,  he was concerned the drug was no longer working so immediately did Estrodiol tests to make sure it was!  Thankfully, it was!  Ever since that 2.5 year mark, I have improved in the joint pain department.  Sure, I still have joint pain, but initially my pain scale was about an 8 or 9 out of 10, and I have a high pain tolerance!  Now it is about a 2 to 4 out of 10 depending on the day.  Certainly, it is now tolerable.

My sister has been on the same drug for one year since her diagnosis.  She has not had nearly as much joint pain.  She has some, but mostly in the morning when she gets out of bed.  As the day progresses, she gets much better.

My mom was also on the drug, but had to quit because of extreme balance issues.  Because of being in her 80s, we though she might have been having mini strokes.  The minute she stopped the AI drugs, she was fine.  After consultation with her Oncologist, because of her age, they just stopped the drugs without exploring other alternatives.

THE BAD – bone loss:  Aromatase Inhibitor drugs can cause severe bone loss.  My friend, Kelly, has experienced this and has been through so much because of it.  That is not uncommon.

I am one of the fortunate ones I just had another DEXA Bone Scan, and my bones are NORMAL!  I take calcium and magnesium supplements every day faithfully.  I really try to eat calcium rich foods.

THE GOOD – lowers recurrence rates:  Studies have shown that taking AI Drugs can reduce the risk of recurrence rates by 30% or more.  When women write and tell me they do not even want to try the drug because of side effects, I do my best to talk them into at least trying it.

I know too many women who have stopped the drug, had a recurrence, and blamed themselves for stopping it.  No one will ever know if that is the cause, but I argue at least try it!

THE GOOD – cost:  I have to pay for my own drugs, and the non-generic drug – Arimidex – can cost up to $300.00 for 90 days.   By taking the generic, Anastrozole, I pay between $25.00 and $35.00 at Costco.  I’ve done the research.  Costco is much cheaper than anywhere else, and you do not have to be a member of Costco to use their pharmacy.

One side note on this – there are many manufacturers of Anastrozole.  TEVA is one manufacturer and I did best on this brand.  I would specially request it as my side effects were less.  Many women have discovered this as well, so before you quit, try another manufacturer of the drug.

My goal of this post is to encourage you to continue the AI drugs, unless your side effects are life threatening.  My sister and I have a ritual that we both do individually.  Before taking the drug, we thank God for its development, the people who developed it, and what help it brings to us.

 

please check out my online store – chemo caps for cancer patients

http://www.hellocourage.com

 

 

 

 

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13 comments

  1. Such good info Denise, thank you! I’m currently on Tamoxifen, was not wanting to start it, but now that my side effects aren’t bad I don’t want to change! I know my MO is thinking to move me to an AI. Ugh!

  2. Congratulations Denise   I am almost there too! Your a special lady to do all this for so many.Blessing to you and your sis! Peace Heather

  3. Denise, congrats on your five year anniversary! I am at five years last month as well…those chemo(yes adriamycin and Taxol ) are getting harder to recall. Also now on anastrozole…much less joint pain and stiffness than lexotrole…I think that’s it…anyway, also maintaining for many more years due to a high oncodx score (32). Best wishes for all of us survivors!
    Dale

    • Congrats to you on 5 months, Dale! Thanks for letting all of us know that you
      had less joing pain on anastrozole than letrozole! Good to know! Everyone is
      so different, but goo to hear! Thanks for writing and continue on the fight!!

  4. I take Letrozole, an other aromatase inhibitor. As a result of having no estrogen in my body, I have atrophic vaginismus. I use Replens 6 or 7 days a week to keep that area functional. Three times per week was not enough. Anyone else dealing with this? Any suggestions?

  5. Hi Denise…Congratulations on your 5 years !!!!!!!!!!!!! So Happy an Proud for you my friend 🙂 Thank you for letting us know. I am still doing very good on my Exemestane. Was wondering my pharmacy changed the company that makes Exemestane its still the same just different company.Could this effect markers ? Just curious .

  6. Dear Denise, I‘ve just finished 5 Years too, after triple positive. After about 2 years on Arimidex, with steadily increasing joint pain, even while taking Advil, I was ready to throw in the towel. Like you, I’ve been told I have a high pain tolerance, but my quality of life was really suffering! The crazy part was that my oncologist didn’t really believe that my joint pain was due to the AI. Finally, he suggested I stop taking it to see if there was a change. YES. At that point he suggested I try Aromasin, which I’ve now taken for 3 years — without any side effects! And I will now stay on it “forever” as long as my bones hold up. Hurray!!

    • Hi Marie – thanks so much for posting! It is good to know that you successfully switched
      to Aromasin without any SEs – wow, that is impressive. Gives me hope if I have to switch!
      Here is to our bones!! Sending all my best – thanks! Denise

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