Looking for alternative treatments for estrogen blocker.

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Sungirl64
Sungirl64 Member Posts: 3
edited May 2017 in Just Diagnosed

I am almost five years out and have not stayed on the the drug letrozole to reduce estrogen due to the horrible side effects. I had a complete right mastectomy and lympnoectomy. I also had my ovaries removed when I had reconstruction to reduce the estrogen in my body. So I've been in surgical menapose for almost five years. Went to the breast cancer specialist today and she basically scared the crap out of me for not taken the drug letrozole. I just wanted to have a better quality of life.

Has anyone had good results taking a nautural supplement without all the bad side effects? I'm going through a change in oncologist right now and really need help. I really don't know what to do.

Thank you for information and help! Sungirl


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  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited April 2017

    Want to hear what others say about this...am in the same place you are, Sungirl...so many side effects from the AI.....ugh!


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  • Sungirl64
    Sungirl64 Member Posts: 3
    edited April 2017

    it's good to know someone else knows how I feel. Hang in ther HappyHammer, hopefully we will get some answers soon! Sungirl


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  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2017

    I had a similar experience with Letrozole in 2009. I suffered such severe nausea that led to a passing out episode that I not only refused to continue taking it, I was afraid to try another A/I. I'm very much into holistic health -- have been all my life -- and felt comfortable working with an ND and doing I3C and hormone balancing as an alternative, although I probably got complacent after a year or two, so can't say I kept it up for 5 years.

    Anyway, almost 6 years from my original Stage II dx, I had a recurrence -- diffuse and extensive bone mets. The interesting thing is, my first line of tx after my re-dx was Anastrozole (Arimidex), which significantly healed my bone mets and kept me stable for 18 mos.

    I had a Grade 3 multicentric bc, both IDC & ILC, and a positive node with extracapsular extension, so there's every possibility my bc might have recurred even if I'd stayed on Femara or another A/I. Sometimes I just think some of us are programmed to recur no matter what we do, but I also feel like I totally underestimated both the Grade 3 factor, as well as just how powerful these meds are.

    I've also learned since I refused Femara, that what we're normally RX'd is generic Letrozole, which is made by several different drug manufacturers, and that sometimes what gives us the worst SEs are the fillers those companies use, which vary from brand to brand. (It should say on your med bottle which company makes yours.) This is something you might want to look into as well, as sometimes just changing sources can improve your SEs, as can a short break and then returning to the med.

    I am not trying to scare you or tell you are foolish not to do an A/I. It's a very individual decision. However, knowing everything I know now (which I didn't know in 2009), I would not make the same decision today, especially after seeing the difference Anastrozole made in my mets, and, ironically, with almost no SEs.

    Just my two cents worth... Deanna

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  • Icietla
    Icietla Member Posts: 1,265
    edited April 2017

    Welcome, Sungirl64. I am so sorry you and HappyHammer have been having so much trouble with your AI medicines. You have come to the right place for information, understanding, and support about breast cancer concerns.

    In our forum section titled "Hormonal Therapy – Before, During and After" are discussions with others' experiences of treatment with the AI medicines. Like dlb823, many members have found that medicine changes could relieve or reduce their side effects to being tolerable enough for continuing with conventional medical treatment.

    https://community.breastcancer.org/forum/78

    In our forum section titled "Alternative Medicine" are numerous discussion threads that may interest you. Breastcancer.org does NOT recommend or endorse alternative medicine.

    https://community.breastcancer.org/forum/121


    Breastcancer.org does NOT recommend or endorse alternative medicine.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2017

    Dear ladies, if you are serious about not taking any AIs, but want to reduce estrogen as much as possible (nothing can eradicate it entirely) I might suggest you make an appt with a naturopathic oncologist in your area or even travel once for a consultation. I did, and it was quite helpful--pricey, but helpful.

    I know that you can adopt practices that reduce the amount of circulating estrogen in our bodies, and losing weight helps since fat offers a place for any estrogen to "hang out in", so to speak. Absolutely no alcohol is de riguer. Low fat, organic meat, little dairy (to avoid the hormones used in those food sources) is important. Avoiding any chemicals that drive estrogen production (avoid cosmetics and body products that have parabens etc.) will help, I'm told. There is a supplement, DIM, that has promise in playing a role in, too. I nearly signed up for a trial using DIM instead of an AI (Univ. of AZ) but in the end, I was too scared to guinea-pig myself because I had + nodes. I suggest a naturopathic oncology consult because the problem is most of us are unsure of doses of any supplement or diet/exercise that really can help.

    Here's a thread on DIM:

    https://community.breastcancer.org/forum/79/topics...

    I know that regular exercise--3-5 hours a week -- can also reduce the amount of circulating estrogen. You might be interested in this link.

    https://www.ncbi.nlm.nih.gov/pubmed/23652373

    Finally, I cycled through tamoxifen, then took arimidex with horrible, horrible side effects. I am currently on Aromasin and so far I don't have many side effects--not as bad as the arimidex gave me. Would you consider using another kind of AI before ditching them altogether?

    Just some thoughts to consider. I hate that we have to choose between quality of life (no drugs) vs. length of life (risk of not taking them).

    Claire in AZ

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  • dtad
    dtad Member Posts: 2,323
    edited April 2017

    Sungirl64....Hi there. I have chosen to refuse anti hormone treatment and lower my estrogen levels more naturally. I have lost 30 pounds since diagnosis and exercise daily. I take DIM, melatonin, mushroom extract and berberine to regulate my blood sugar. So far so good. I also agree that if you want some guidance with alternative treatments a naturopathic doc is the way to go. Also it would really help us to answer your questions if you filled out your stats publicly. Good luck!

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  • Sungirl64
    Sungirl64 Member Posts: 3
    edited April 2017

    dtad, claireinaz, lcietla

    Thank you for your response. I really appreciate all of your comments and will take them to heart. I'm not totally against taking an estrogen inhibitor. I just wanted a better quality of life to spend with my family & grandchildren. I was not living, I was just existing for awhile and just need to find an oncologist or a Na to help guide me down the right path.

    My oncologist at the time gave me no other options but to take Letrozole and I just need more options. I will pray on all the information y'all have shared and ask God to guide me down the right path for me.

    Thank y'all sooooo much!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2017

    I just want to add after reading Claire and dtad's comments that I also walked 5 to 6 miles a day and went to the gym. I eat extremely clean -- 85% plant based, mostly organic, and I don't drink. I also want to mention that there is a wide range of ND's -- some highly qualified; many not so much -- at least when it comes to our situation after a bc dx. This is a good website to find an ND some oncology training, but I still believe that many in the holistic community totally underestimate bc's ability to lay dormant, sometimes for many years, and recur, and they should not be relied on as a sole health care provider when we've had a bc dx. https://oncanp.org/

    I am personally a believer in integrative medicine (vs. strictly conventional or holistic), and another type of doc you might want to seek out is one with conventional oncology experience with a serious interest in integrative medicine. https://integrativeonc.org/


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  • dtad
    dtad Member Posts: 2,323
    edited May 2017

    dlb823...so sorry about your recurrence. There are definitely no guarantees whether you take anti hormones or not. Unfortunately there are those of us that use the big guns and still recur. WE all have to make our own informed decisions and live with the consequences. I wish there were better treatment options so it wasn't so hard to make the decisions. Good luck to all.

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  • moonglow1960
    moonglow1960 Member Posts: 1
    edited May 2017

    I'm now 74...but was 68 when first diagnosed with ER+ Prog+ HER 2+ Pet Scan showed only one breast involved but biopsy of one lymph node showed cancer cells so when I had surgery, after chemo 13 more were removed and none contained cancer cells........Had 18 months of chemo before surgery. I opted to have a double mastectomy and have reconstruction.

    Early 2012, I began Adriamycin/Cytoxin followed by + Herceptin/Taxol and then was given Arimidex and told to take it for 5 years...I lasted only 10 months on an estrogen drug, due to horrific muscle and joint pain. And just didn't take anything to replace it... There were days when I could barely walk

    when I took that drug and many days I cut the pill in half it was so horrific.... I'm totally holistic and have been watching my diet and eating right for the past 40 years. The reality is that diet and a healthy lifestyle does not prevent cancer relapse....

    End of 2016, after being in remission for 5 years, I find myself dizzy, wind up in the ER, have a CAT scan of my head (contrast dye) and voila....I have a 2.8 cm brain tumor...Onco told me this is thefirst place a tumor forms when HER 2....I'm told by the neurosurgeon that I need brain surgery to remove and biopsy to insure it's related to my original breast cancer... Our local hospital has options...I found out that gamma knife was an option and chose that instead. It's been 4 1/2 months since my blast to the head of intense radiation and as of this moment, tumor shrunk by half as of March. I was told it should continue to shrink and shrinking proved that the treatment was efficacious...... As of early Feb. I was then back in the same cancer center, once again going for chemo. Twelve treatments...Taxol every week...Every third week, HERCEPTIN, Xgeva shot once a month (bone) and oh, a PET scan in Jan. showed metastasis had gone to liver, bone, lung and randomly scattered throughout my body. Honestly I thought I was going to die...Suddenly I'm stage IV and facing a new battle, only this time it's worse and dealing with treatment was much worse.

    So, I was sent for another PET scan after I completed my 12 weeks of Taxol, (which ended recently) this time I got swollen feet, a nasty rash and PERJETA which I was severely allergic to, could not be part of my protocol with HERCEPTIN. I feel chemo this time made me ultra sensitive to drugs in general...My last PET scan about a month ago showed "nothing of concern or suspicion"...I guess this means all evidence of prior active tumors had been eradicated by chemo. I was then given two injections (500 mg) of Faslodex...This was 3 weeks ago...I first didn't notice anything severe...Within two days I had the world's worst rash on my face...It was red, itchy, angry looking pus filled pimply looking things and nothing topically relieved this rash, until I began using a tea tree topical cream. But Faslodex has a half life of 40 days so this awful drug reaction is still ongoing...

    Oncologist told me I have to take some type of estrogen lowering drug with HERCEPTIN or else I could face another huge metastasis...Given I had a terrible reaction 5 years ago to Arimidex, I was told to try Femara as an aromatase inhibitor...I filled the prescription yesterday.......afraid to take one pill yet knowing I'm still dealing with the side effects of Faslodex which is still in my system...

    So, I don't know what caused my 5 years worth of being in remission to suddenly go haywire. When I was done with chemo last time, I should have had 5 years of an estrogen lowering drug and I didn't. But at the same time, I wasn't being treated with anything...Now I'm on HERCEPTIN every 3 weeks for life....AND supposedly the same rule applies to FEMARA...

    Would I take a chance (even though I'm so anti-drug it's a wonder I'm caught up in conventional medicine in the first place)....so would I take a chance and NOT take this aromatase inhibitor? Probably I'm going to have to stick it out this time....I'm 74 1/2 and I don't want to die...I also don't want to be ever taking another chemo protocol....I can't imagine how much estrogen my body could have right now, given my age....but I wouldn't want to find out the hard way...

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