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Do Not Want to Take Aromatase Inhibitors

floridasun
Posts: 2
Joined: Jun 2016

Hi,

I had a lumpectomy and am in the middle of radiation treatments.  When radiation is complete it is recommended that I take aromatase inhibitors. Stage 1 invasive no lymph nodes.  The Oncotype Dx test put me in the low risk category, but there is a percentage of reoccurance that is there. The AI's are suppose to cut that # inhalf. I have read about how AI's affect the quality of life and questionable affects about future potential problems not related to a recurrence.  I would like to hear from anyone out there that has been in a similiar situation or can share there AI experiences.  Alternatives?  Help in making a decsion is needed. Thanks so much

 

Puffin2014's picture
Puffin2014
Posts: 534
Joined: Jun 2014

I was a stage 1 too, but had a higher onc score so besides my lumpectomy and radiation I also did chemo. Since I was estrogen +, I'm also taking anastrozole. Not everyone develops side effects or has it affect their quality of life. I saw no reason to at least try the AI and see how I tolerated it. There are several available, if one doesn't work well for you the doctor can switch you to another, and many women find they do better on one over another. I did have some knee and ankle stiffness for several months - if I sat for awhile, when I first stood up my legs would be stiff. But by the time I'd walked across the room I was walking normally again. I can live with that considering the benefits. I've been on anastrozole/Arimidex for 1 1/2 years. If you should develop side effects you can't tolerate, you can always quit.

Marysnattyg1
Posts: 1
Joined: Apr 2020

Hi Puffin,

I was just diagnosed with stage 1 ILC during a prophylactic maastectomy..  Started Arimidex about a week ago.  Just wanted to know from people who went through it how they are 5-10 yrs later.  What is your experience so far.

 

Thanks so much

eihtak
Posts: 1461
Joined: Oct 2011

Hi,

In 2012 (one year after treatment for anal cancer) I was dx with Secretory Carcinoma of the breast and treatment was a mastectomy (I had a double) followed by 5+ years of Anastrozole (Arimidex)...While during the first few months I had some soreness or aching joints, as someone else said, once getting up and moving that was much better. I started taking daily (or at least almost daily) walks and gradually got back into being more active. It wasn't long before I can honestly say I had no real noticeable negative effects from this medication. Some women do also notice a little weight gain or softer mid-section, but I did not (maybe the walking helped there as well)...Side effects are not the same for all and there are two sides to every coin, but I will pray that you have only minimal negative effects if any. After about 5 1/2 years I was taken off the Arimidex and have been doing ok since. 

katheryn

 

peony
Posts: 308
Joined: May 2016

Today, I've been on Arimidex exactly one month.  I know that's not very long, but I've been very watchful for side effects.  So far, nothing.  My knees and ankles were already stiff and creaky.  I've had a headache or two, but I can't really attribute to the drug.

tufi000's picture
tufi000
Posts: 755
Joined: Jun 2005

I have been on Arimidex 12 years no regrets. Though there was some joint pain initially it wasn't a big deal and not life changing in any way. ONE THING... WATCH YOUR BONES!  AIs leach the calcium so take care of your bones with meds and/or exercise.

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

I was told that hormone therapy was every bit as important as chemo (I had chemo because of a high oncotype score).  I was scared to death to start Arimidex, but it finally dawned on me that I could always quit if I had side effects.  I had none.  I switched from Arimidex to Tamoxifen at around 2 years simply because my hair did not come back after chemo (thank you Taxotere) and I wanted to see if the Arimdex had anything to do with it.  It didn't.  Still look like a side show freak.  My oncologist was not at all unhappy to switch me to Tamoxifen because I had begun to experience some bone loss and Tamoxifen is good for your bones.  She was also curious about the hair thing.  So I swithed.  I had no side effects with either Arimidex nor Tamoxifen except for the bone density thing - and my bone density improved after the switch.  Oncologists do like to quote statistics that the AIs are "better" but Tamoxifen was around as the only choice for many years.  I am no longer taking either.  I took them for the recommended 5 years.  Now the recommendation is 10.  Next week it may be something else.   I discussed options with my oncologist before stopping and she felt that stage does matter (I was 1b) and that the effect of the drug goes on for several years.  How I feel today is that I don't want to take anything I don't have to.  I believe I followed the rules like I was supposed to and I honestly do not believe my cancer will recur.  I am not convinced that I won't grow another one, tho and hormone therapy should starve out any new growth, but down the road, who knows?  It's all a crap shoot, but I followed protocol for my type of cancer and I believe I did everything I could.  I would have never forgiven myself if I had had a recurrence and skipped a recommended step (surgery, radiation, chemotherapy, hormone therapy).   Any of these treatments can be bad, but having cancer was a known and we know where that goes if left untreated.

Suzanne

AlyceG
Posts: 1
Joined: Jun 2016

Hello.... I pondered this question too when I was diagnosed and treated with stage 2 breast cancer in 2010. I was concerned about the long term effects of Arimidex (recommended to me) and eventually declined as I had already been diagnosed with osteopenia. Instead I chose an alternate route after my surgery and radiation. I have been, and still am, taking several supplements including a product called EstroSmart which contains natural aromatase inhibitors - there is a lot of information on the Internet, scientific and anecdotal, regarding each ingredient and its effectiveness. It contains DIM, calcium-d-glucarate, Indole-3-carbinol, green tea extract, turmeric, sulphoraphane. I didn't make my decision easily but did a lot of research as well as receiving support from a organization in Vancouver BC called InspireHealth which has a lot of useful information available to the public free of charge. Wishing all of you good health whatever decision you make or have made. All tests continue to indicate my path is working and I'm still active and healthy in my 70's.  Alyce

ESE
Posts: 1
Joined: Jun 2016

Thanks for this info.  Very useful.  I share your concerns and far prefer to use more natural dietary supplements.

I have decided to try AIs and see if any side effects and monitor carefully for osteopoenia.  Guess my feeeling was in for a penny in for a pound.  Having battered my body with Chemo/surgery/radiation it finally seemed silly to baulk (for m) at this final step of the protocol.  Am  77 years old was diagnosed in October 206 with a Stage III A Estrogen positive (99%); progesteron positive (40%), HER negative cancer.  Am doing and did many alternatives on an adjunct basis.  I took 10 mg of melatonin with my chemo because read about an Italian study that showed it potentiated Chemo. My tumor did melt away with Taxol (maybe it was the Don Giovanni Mozart I listened to with each infusion, leaving me in bliss) and I did not have to fininsh the taxol (because of mild right hand neuropathy) or proceed to Andromycin +)...Knowing about "alternatives" as a fall back is exceedingly helpful to me...so thank you very much.

Momma Cotton
Posts: 1
Joined: Feb 2020

Hi,

My name is Leah, I was diagnosed with Invasisve Lobular Carcinoma in November of 2019,  I had a double masectomy the end of January, and now I am Cancer free thank God.  But now my oncologist wants me take Anastozole, but reading about it and the side effects i am searching for alternatives. 

I read your post and was wanting to know if you are still taking the EstroSmart, how it made you feel.  I am just wanting to see if there is a natural safer alternative. and if you have any other advise for me.  This is a new journy that I am trying to navigate.

I pray that you are healthy and cancer free. Thank you for any information you can give.

God Bless

Leah 

Retired2018's picture
Retired2018
Posts: 3
Joined: Jul 2020

I was on AIs for 2 months and had crippling effects, however I had also had a serious fall in the hospital. I have just yesterday finished my radiation, and have to start AIs again. I am very relieved to hear your story, as I now know there are alternatives. I have pondered and fought with stopping AIs and trying DIM. I will give arimidex 2 months and if I have the same issues, I will try the natural alternative..... Again, thank you for sharing!

 

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

I too am questioning my ability to tolerate the arimidex.  I am stage one IDC no lymph nodes estrogen positive. I had a mastectomy in Dec and started the hormone therapy.  This forum has been very helpful to me.....lots of gals who have taken this drug for 5 years with few side effects.  My deep muscle and joint pain only seems to be increasing.....somedays the level of fatigue is overwhelming and I do very very little.  I called my nurse practitioner who works with my onc. She has instructed me to take a week off the arimidex and then I will go to see her to reassess.

In eleven years of cancer treatments this is first time I have whimped out.....four major surgeries for bowel cancer and endless months of chemo.....but this one has me confused.  I am 70 years old.....if I continue with the arimidex until 75 I just can't get my head around the quality of life.....I really do not want to live like this in this much pain. 

I haven't started to read about tamoxifen yet but I wonder if it is a good alternative.....

thanks for listening....oh and ESE  I too love Mozart.....opera has always been my ticket to a couple of hours total zone out of cancer land......maggie

Retired2018's picture
Retired2018
Posts: 3
Joined: Jul 2020

I had terrible results for the 2 months I took them. I have been off for 3 months, but will try the non generic arimidex. I am willing to stop if I have the same insufferable pain. I have been researching DIM while going through radiation. At least there is an alternative.

 

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

I did estrogen therapy for 5+ years and did not want to continue for 5 more. but I was not at all miserable on either Arimidex or Tamoxifen.  I am 69.  I also did the math and also considered the stage of my IDC (1b).  I discussed this fully with my oncologist and if she had been adamant that I continue, I would have.   I have no idea how your colon cancer plays a role in your overall survivorship scenario.  In the back of my mind, having had both breast and endometrial cancers, and knowing they were both related to estrogen, it just seemed reasonable for me to take it, and I had no SEs at all.   I did not want to take a chance of the IDC returning nor did I want to grow a new one.   I took Tamoxifen after the first 2 years and so had 2 years of Arimidex and 3 years of Tamoxifen.  My oncologist assured me Tamoxifen was a good drug - it blocks the estrogen receptors, not aromatase.  My bone density improved on Tamoxifen.  And back in the day, Tamoxifen was all there was.  The AI's are supposed to be "better", but by whose criteria?  For some, the SE's are horrible.  You don't know if it's going to be effective or not unless you have a recurrence or metastasis, then you know it wasn't.   I really don't know if  hormone therapy was effective or not for me as I remain NED (hooray).  I do think Tamoxifen is a good alternative and so did my oncologist.  It is worth discussing with your oncologist.

Stay well.

Suzanne 

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Suzanne just a little note for you.....I want to thank you for your wonderful posts.  They are always informative, well thought out, easy to read......thank you so very much. Wish I could report dancing all nite without the arimidex.  seasonal allergy has set in and I am sneezing and sniffin and generally feeling rotten, so it is hard to say YES! feeling great without the arimidex.

I did learn something from a girlfriend however.  She was on the generic arimidex and had many symptoms.   She went back to her onc and requested a new script that insisted on the original drug......she reports the bad symptoms disappeared and she did her five years cheerfully.  Something to try for sure.  snuffle sneeze....drippppppp

 

mags

anniemshe's picture
anniemshe
Posts: 70
Joined: Oct 2017

I took tamoxifen for 5 years with minimal side effects. Those days it was enough to take tamoxifen for 5 years. Then after 2 years my doctor told me the latest studies suggest taking tamoxifen for 10 years rather than 5 years. I was reluctant to begin the medication again as I was adamant that I did my chemo radiation and hormone therapy and wanted to get back to normal and put all the cancer days n treatment behind me! She suggested I check my hormone levels as I had stopped menstruation after my chemotherapy at age 43. Based on the results she suggested I start on Femara but I wasn't keen. About 7 months before my 10 year cancerversary it returned in my humeral bone! So I was stage 4! I will never know if my reluctance to take the hormone resulted in the recurr or not! But it comes to mind occasionally! Now I'm on medication for life...

Nikki718
Posts: 1
Joined: Jul 2020

Hi Anniemshe. I don't know how relevant my response will be, but I'm 47, first dx'd with early stage 2 breast cancer in 2017. I did NO treatment against my dr's wishes and was dx'd stage 4 metastatic in Jan 2020: it's in my lymph nodes, lungs and bones. I'm taking Verzenio, Lupron and Anastrozole now since Feb. My tumor  markers have come down drastically, from 255 in Feb to 61 in June. Like you, I'm going to be on these meds for life, however long that will be.... Like you, I'll never know if my refusal to take any treatment is the reason for my current condition, but I don't dwell on it and I don't beat myself up about it:we can't know if failing to take our dr advice is the reason why we're at where we're at (sorry for the bad grammar). Plenty of people have had their cancer metastasize while on treatment, so there's no right answer. I'm just trying to make the best of my time left with my 19 yo son and teach him, along with my husband, how to be a good person and an independent man. I can't be bothered with should have, would have.... Maybe our lives would have ended sooner had we listened to our dr's? We'll never know. Let's look forward ; )

anniemshe's picture
anniemshe
Posts: 70
Joined: Oct 2017

You are right it's no point be yourself up about stg you can't change but it comes to mind occasionally!! I do try and have been looking forward. Thank you for sharing. It's nice to know there are other's in the same boat.
Take care and God bless. 

Suzycrog
Posts: 1
Joined: Jun 2020

Hi floridasun, I am in similar situation.  Low risk and stage 1.  I tried anastrozole for 1 mo, aromasin for about 5 mos and had to quit because of side effects.  Are you taking any aromotose inhibitors?  I don't want to begin femora yet.  I'm still having lots of muscle pain in legs which I didn't have before + other side effects.  I'm 76 so I think quality of life rather than quantity is my answer.  My onc left so I need to get a new onc or nurse practitioner.

 

 

 

 

yetti's picture
yetti
Posts: 7
Joined: May 2019

I have been on letrozole since last April 2019, And about 6-9mths ago it seemed like I had this knee stiffness, if I were sitting in a resturant like for 30 min to 45 min +, I would attempt to stand up to walk. I would first have to stand still a few minutes before I could actually walk,  I kept wondering what was wrong with me, was it just old age I'm 58. Or was it arthritis starting, why was I having trouble walking after sitting!  I appreciate your comment on this Puffin,  I was actually starting to blame my self for not being physically fit after fighting cancer, and that was why I'm having trouble standing up / walking after sitting a while,  Your right Puffin once I start walking it goes back to normal!  Thank you! It's so nice to know some one understands how I feel. ? 

Mom2Five
Posts: 1
Joined: Jun 2020

Is there a blood tests to tell you if your AI's are even working to reduce the aromatase? 

Retired2018's picture
Retired2018
Posts: 3
Joined: Jul 2020

I agree. I would like to know if there is a difference.

wallis2
Posts: 46
Joined: May 2019

Hi Everyone, 

I have been on Arimidex for a while and has been miserable.  Aching, stiffness, neck hurts, numbness, and the list goes on and on.  I wish the doctors can give me something for these symptoms.  When I get up at night, I feel like I am a 100 years old.  It seems like every week I feel something new.  Now I feel pain in my shoulders and ribs.  I took a break from it for 2 days and it gets worse.  Everytime I talk to my doctor, it's nothing they can do, but I was asked if I wanted to try another one.  I am afraid if I try another one, it will be worst than this one. 

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