Can I just say no to Hormone Therapy.

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ozbell
ozbell Member Posts: 18

Are there other BC people who want off the medicine train?


I started micro dosing myself with Tamoxifen without the Doc. knowing because of horrible night sweats that kept me up all night. Then after 3 months pain in the joints and bones started, then my platelets went down to 39,000 (normal is 150,000 - 450,000). I had ITP as a pre existing condition so no surprise there.


Now I am on Fareston and I cry every day and I feel the pain kicking in the joints again. I am new to this forum. I wonder if these hormone drugs are worth it - the dr says it changes my risk from 10% recurrence to 14-16%. I am only 43, had my left breast removed this April 2016. I don't want to do anything and I don't enjoy anything. That was before the Fareston now I just cry all the time. I also lost a lot of hair when I stopped the Tamoxifen. I want to stop taking these and just take nothing. I have two small children - yes I want to live but I'm not sure if what I am currently doing is living. They see mommy cry all the time I feel so useless. I want to quit it all.

Also in a tough marriage - was bad before but now there is no intimacy at all. But that didn't make me cry every day like this.

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Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2016

    Sending you many hugs, ozbell. Have you consulted with your treatment team about all the side effects. We understand your urge to stop if these are the symptoms. Please call your docs and see what they suggest before you make a decision! We're all here for you!


  • ozbell
    ozbell Member Posts: 18
    edited September 2016

    The nurse called me back and said to stop taking the Fareston until Friday and then call her to describe my emotions. My oncologist said that at a certain point doing nothing may be for the best. My OncoDX score was 18 so chemo was of questionable benefit (also with ITP chemo is very dangerous), I was so happy to avoid chemo! But these "easier" hormone therapies are making me depressed and/or feel like I am 90 with arthritis.


    Thanks for replying, I just found this site and it is helpful to read other people's experience. I just feel so guilty being told I am "lucky" and should take these hormone therapies because "chemo is worse." The guilt people pile on doesn't help. I don't think anyone should tell a cancer patient they are lucky cause it could have been worse....gak.

  • Dr_Robert_G
    Dr_Robert_G Member Posts: 1
    edited September 2016

    Hello ozbell,

    Sending you BIG hugs. I can only imagine what a very tough (and emotional) turmoil you must be going through. But hang in there...it's always darkest before dawn. We are here for you.

    Should you say NO to hormone therapy?

    My take is don't say NO.

    Is hormone therapy necessary:

    Yes...but, I assume that initially, your doc tested you positive for estrogen (or other) receptor, yes? if so, then that's a standard treatment that works. Given your OncoDx score of <18, maybe chemo is not such a good option, as you said.

    As an intro into the why, consider that breast tumors often require hormones for growth, which poses a unique problem because the hormones involved in tumor growth are either estrogen, progesterone, or both. For these hormones (the key) to work, they need a partner known as the receptor (the lock). Hormone receptor-positive tumors consist of cancer cells with receptor sites for estrogen, progesterone, or both. The hormones attach to receptor sites and promote cell proliferation (or growth - too much is not good). Hormone therapy blocks the hormones from attaching to the tumor receptor sites and may slow or stop the cancer's growth. The drug most often used in this type of endocrine therapy is tamoxifen, with a response rate from 30-60%.


    What else can you do?

    Weight - Excess weight is a significant factor in BC. The visceral fat women (and men for that matter) carry around their belly is tenacious, dangerous and hormonally very active. It can produce estrogen and cortisol, independent of ovaries, etc. This added estrogen adds fuel to the fire.

    High fiber - Lower you meat and fat intake (although these are good in proper proportions) and increase fiber in your diet. High-fiber diets have been shown to reduce circulating estrogen. If you have to have meat, make sure it's pasture-raised. Most meat in the US is infused with synthetic hormones before slaughter. you don't want this extra synthetic "stuff" to increase your burden.

    Liver - Your liver is the organ responsible for metabolizing and neutralizing the estrogens produced (or xenoestrogens from the environment) by the body. There are good and bad estrogens. You want to support your liver as well as you can.

    Cruciferous veggies- these guys contains natural compounds that turn bad estrogen to good estrogen. This can synergize very nicely with Tamoxifen or Fareston.

    There are a ton of natural modalities that you can use (especially diet) to help your liver manage estrogen metabolism and allow your system to reach homeostasis.

    Keep a chin up and stay positive. I really think your prognosis (given what you said) is very positive. You have a very very good chance of beating this thing. There's no need to think about the negative.



  • dtad
    dtad Member Posts: 2,323
    edited September 2016

    Hi all. I'm just going to take a minute to answer the topic question which is "can I just say no to hormone therapy". The basic answer is yes. We all have to make our own informed decisions. The more complicated question is should I say no to hormone therapy. Every one of us that is diagnosed with BC have our own unique stats. IMO quality of life matters but so does living! We all have to do what's best for us and respect our individual choices. Good luck to all navigating this disease....

  • NancyHB
    NancyHB Member Posts: 1,512
    edited September 2016

    ozbell - in a word, yes, you can say no to hormone therapy. Treatment is a personal choice which is based on the information and experiences we each have.

    I tried Tamoxifen for three months during my initial diagnosis, and had to stop because of the SEs. I then moved on to Aromasin - that lasted two months - and went back to Tamoxifen for another three months, hoping the SEs would be improved. For me, they were not, and at that point I stopped. It was a difficult but thoughtful choice. I spent almost a month discussing the potential outcomes of stopping with my husband and my MO, and had to be certain I would never blame myself if I had a later recurrence. My suggestion to you is to be sure you're comfortable with your decision before you stop (if that is ultimately your choice).

    Good luck to you.

  • ozbell
    ozbell Member Posts: 18
    edited September 2016

    Thanks for the replies, it is a lot to think about. I may try a third option which is a shot that puts me into menopause each month,I know nothing about it. Tamoxifen is not an option to return to because I had a significant platelet drop (I have ITP and it can also be a silent time bomb if you don't know you have it or what to look for).

    Fareston might have the same platelet effect, and even though BC is terrible, you can't mess with platelets either - in January I literally had a count of 1000 and was hospitalized for it. One of my treatments for ITP (to stop a very terrible period) was progesterone, very high doses of it, and that brought out the cancer months later the tumor literally popped out.

    I actually am having trouble keeping weight on so weight hasn't been a SE (well maybe weight loss is an SE). I will try the high fiber and organic/pasture raised meat suggestion from Dr. Robert G (I am 90% hormone receptor positive). Already love the Cruciferous veggies so I will increase those too.

    I am too scared to try the Fareston again, all the crying is not normal for me, literally bawling for hours on and off all day. And it has also attacked my joints like the tamoxifen. Nurse said to stop immediately. I know cancer is scary and depressing, and I have been depressed but Fareston took away my ability to shut off crying. All day crying is not a release it is a huge stress.


    Do people just take pain meds to deal with the arthritis SE from Tamoxifen and Fareston? I can't really take any Ibuprofin and Aleve because they can drop my platelet count as well. I don't see Drs. giving me oxy for a decade to tolerate these drugs, my surgeon barely wanted to give me pain medication after my mastectomy. I do have Gabapentin but I can only take it at night (sleepy).


    But like NancyHB said I have to make sure that I won't blame myself for recurrence if it happens. I am not sure yet lots to discuss with Dr. and family. But I may try the third option.

    Thank you all, I am new here and reading other people's takes and experiences really helps and is kind of soothing.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2016

    Of course you can say no, and millions of women do, b/c of the serious, painful, debilitating side effects.

    Northwestern University wrote an entire article on it. You aren't alone.

    http://www.northwestern.edu/newscenter/stories/201...

    Before you stop, perhaps talk with your MO, and see if you might be able to switch to something other than Tamoxifen. If not, you can make lifestyle choices as suggested above by another member to hopefully decrease your chances: 1 daily aspirin if you don't have contraindications, and taking Vit D and getting your levels checked annually, can help. too.


    Claire

  • ozbell
    ozbell Member Posts: 18
    edited September 2016

    Thank you for the link I will read this!

  • pupmom
    pupmom Member Posts: 5,068
    edited September 2016

    You can do whatever you want. It's your body after all.

  • pupmom
    pupmom Member Posts: 5,068
    edited September 2016

    Ok, one thing I don't under stand is when you say "the dr says it changes my risk from 10% recurrence to 14-16%." That would mean an INCREASE under Faresnton. This is not possible.

  • ozbell
    ozbell Member Posts: 18
    edited September 2016

    My bad! With Tamoxifen my risk is 10%. Without anything my risk is 14-16%.

    Tamoxifen is off the table it caused a dangerous drop in my platelets so the Onc quickly said to stop.

  • pupmom
    pupmom Member Posts: 5,068
    edited September 2016

    Understand now. Hope you can find another med to help reduce your risk. 14 to 16 is pretty high.

  • ozbell
    ozbell Member Posts: 18
    edited September 2016

    Thank you. I am also looking into reducing my risks through cutting out meat and dairy that isn't pasture raised and no more canned foods. I will try one more suggestion by the Onc for a monthly shot. I don't have any perspective or understanding honestly on how high my risk is. These numbers never mean what I think they do and when the docs explain the cost/benefit analysis the numbers make even less sense. I just wonder if I am trading one disease for another.

  • labelle
    labelle Member Posts: 721
    edited September 2016

    "Do people just take pain meds to deal with the arthritis SE from Tamoxifen and Fareston?"

    Some people have had success with the use of various supplements like fish oil, turmeric and/or magnesium. I found out by accident, but also read of others using it, that taking Claratin/loratindine can help with some aches and pains. Tamoxifen has given me with muscle cramps and joint pains. I recently started taking loratadine (generic Claritin) for seasonal allergies and my Tamoxifen pains have decreased quite a bit.

    Many women taking anti-hormonals also find they affect mood, cause depression and have had to get medical help to deal with that. Talk to your doctors about anti-depressants if needed. Of course, it is sometimes hard to tell if our meds are causing depression or just the whole situation. Being diagnosed with BC rather sucks!

  • ozbell
    ozbell Member Posts: 18
    edited September 2016

    Hi labelle, I have heard about fish oil, but I am not allowed take it because of ITP. Also heard that turmeric is good for all parts of the body and may even help stabilize estrogen in conjunction with other good foods.

    Tamoxifen is off the table now because it induced my ITP thus dropped my platelet count dangerously low and unstable as well. That is one of those stop immediately side effects without any medication or life style change that would alleviate it.

    As depressing as BC is on any given day (I can have moments of head in the sand contentment if not on these pills ) the all day crying is from the Fareston. I didn't even do that after my first look in the mirror post mastectomy.

    I will try my doc's third suggestion and if that doesn't work for my body even he said "At some point, it is best to do nothing." Wait and see.

    I am glad that the Claratin is working for you! It is funny how lots of medical breakthroughs both personal and wide ranging are accidents.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited September 2016

    Can you take an AI after induced menopause? (Are you okay with having no more kids, just the two you have)?

    You might ask about occasionally using topical NSAID gels or patches, arnica, menthol or capsaicin for joint pain; and psychiatric therapy (both talk & meds) for the depression. The talk part is necessary for coping; the meds have to be tailored to avoid interfering with the enzymatic pathway of whatever anti-cancer drug you eventually choose.

    I take Zyrtec nightly for my allergies (switched to Claritin, only temporarily, to prevent bone pain during the “faux-flu” I got as a SE of Zometa infusion). I enjoy Indian, Ethiopian and Jamaican food (many of these restaurants in my neighborhood!), which contains both powdered and fresh turmeric root. I take celecoxib, a type of NSAID called a “COX-2 inhibitor,” which has far milder side effects than traditional NSAIDs. My AI SEs are milder than most.


  • ozbell
    ozbell Member Posts: 18
    edited September 2016

    Hi ChiSandy,

    Good suggestions. I'm such a goofball I get chemical burns from icy hot and capsaicin LOL. But I definitely am finished with children so monthly induced menopause might be the next option. Talk therapy may be in order, I need to find someone I can trust. But I really can't describe the Fareston crying fits. They were nothing like the depression I know I have, i literally could not function just cry. Even one day without taking it and my emotions are more stable. But yes I am depressed probably like many others on this forum.

  • Maw-maw
    Maw-maw Member Posts: 9
    edited September 2016

    I stopped my Anastrozole. SE were bad. Any medical person that says there are no side effects has Never taken Anestrozole.

  • Bar822
    Bar822 Member Posts: 5
    edited September 2016

    I am waiting for a Breast Cancer Index study results to return. I had been on Anastrozole for 2 years and 9 months. Four of those months I itched mostly all over. I was living on antihistamines. I finally asked to stop Anastrozole and within 9 days the itching stopped. It took several weeks for my irritated skin to heal. Doctor put me on Aromasin. One year and six months later I am told that my optic pressure has steadily been increasing over the past year. Now using drops for Ocular Hypertension. My surgeon recognized immediately that the Aromasin might be the problem and ordered the BCI test. I have no emotions and my memory sucks! I have no interest in things I did before my diagnosis and treatment. I'm 67 years old, ovaries were removed when I was 42. I too have major anxiety about this test to see if I continue AI therapy. BUT deep inside of me I am saying stop and see if you feel like living again!!! I am a Christian and feel that I am in God's hands and I am just praying that His path will be clear. I have a friend who's cancer was different from mine, she was younger, had lymph node involvement, and a mastectomy of one breast and she STOPPED the therapy about 2 years in. She is cancer free today. Has anyone else just said "NO"? Love to you all!

    8/22/11 - IDC, 1cm, E&P+, LN-, lumpectomy, OnCoDX score 35: chemo 4 rounds C/T, 33 sessions radiation.


  • Bar822
    Bar822 Member Posts: 5
    edited September 2016

    To Maw-maw -

    Amen!! That is the truth. The drug's website says that 1 in 100,000 women have itching. Based on that my Oncologist felt there was NO WAY my itching was due to Anastrozole! Stopping it proved him wrong. I just did not feel that he was even listening to me!!

  • jenn32214
    jenn32214 Member Posts: 89
    edited September 2016

    I'm concerned about this too. I just finished radiation a few weeks ago and my next step is to see an MO. My cancer was so early and path report good after lumpectomy everyone figured I didn't need chemo. But I am wary of hormone therapy because I've read that Tamoxifen can lead to eye SEs and I already have retina issues (I Think of it as the precursor to macular degeneration) so I don't want to take anything that could hurt my eyes.

    And I believe I have read on this forum that AIs can cause UTIs, which I've been having even before my BC diagnosis. BC sucks and so does having multiple medical issues.

  • Bar822
    Bar822 Member Posts: 5
    edited September 2016

    Jenn32214 check with your Ophthalmologist or whoever you see for your eye problems. The big question is "Will a lack of Estrogen make my eye problems worse?". Also ask for the Breast Cancer Index test be done. It will help even more to determine if you would benefit from Tamoxifen and similar AI therapy. I am 4 years and 6 months on this stuff and just now getting REALLY frustrated. Some people can take it with no problems. The longer we can go with a cancer free diagnosis the more advances that will be made. Hang in there!

  • Jackster51
    Jackster51 Member Posts: 357
    edited September 2016

    I stopped after 6 months. That was 4 years ago. I don't feel 'out of the woods' but I am not the psychotic, crying, screaming suicidal person that I was while on it. Crappy choices.

  • Bar822
    Bar822 Member Posts: 5
    edited September 2016

    Thanks Jackster51. I am about to that point and also ready to change Oncologists! Live Long and Prosper!


  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited September 2016

    Tamoxifen can cause cataracts; AIs drastically reduce estrogen, which in turn accelerates aging—one symptom of which is the faster ripening of pre-existing cataracts. I am unaware that either drug has any effect on retinas.

    I got blistering burns within 10 min. from a Salonpas patch, but can handle IcyHot just fine. The roll-on version (as well as other brands of menthol-based topicals such as Bio-Freez and Max-Freeze) is much gentler than the patches. Flector patches and Voltaren gel (both forms of diclofenac, an NSAID—and these topical forms are OTC outside the U.S.) are very effective and do not burn at all—the gel is quite soothing as it evaporates. And Arnica Montana gel (Boiron or Traumeel) is very gentle and quite effective.

  • Bar822
    Bar822 Member Posts: 5
    edited October 2016

    Got my BCI results. 7.5 which means I would benefit from remaining on AI's longer. Told my doctor that we would just take it step by step. I will be on them until next March and then review. Meanwhile hopefully the ocular hypertension can be controlled with drops. Every day cancer free is another day that research moves forward.


  • windingshores
    windingshores Member Posts: 704
    edited October 2016

    Exercise really helps me. But the first 20 minutes of Tai Chi or waking or whatever are very painful, then I get over the hump and I get relief from pain from the last 40 minutes of an hour. My oncologist said she hears this from a lot of people and from research.

  • rozem
    rozem Member Posts: 1,375
    edited October 2016

    I agree with the other posters. You can but should you. Probably not based on the risk reduction percentage in your case

    That said these are very tough drugs. No the doctors don't really understand. Sometimes I have the urge to tell my MO that at 47 and her 65+ I am fairly certain she has more energy and less pain than me

    Try different AIs sometimes the effects are better. I've tried and dumped 2 then back on tam which isn't so bad for me. Try the supplements to mitigate the SE. Exercise makes me feel the best.Yes it's a full time job!

  • LostLittle1
    LostLittle1 Member Posts: 28
    edited October 2016

    Been on Tamixifen since Feb. Around about May the SE's started ramping up and now I'm at the point I can't go on. I didn't fight so hard for a year to be left with this life. I've decided to stop the Tamoxifen roller coaster for the next two weeks. I took 1/2 of one last night and no more! I'm tired of having no quality of life. I cry every single day multiple times a day for no reason, wake up with so much anxiety every morning I can barely get out of bed, restless legs, shaking hands, weight gain, joint pain, constant fatigue and irritability. If I continue on this path, I will have no job and no family. My MO says it's ok to go off of it for two weeks and see how Ifeel then. I'll post an update. My husband is supportive of whatever I want to do. He hates to see me a big ole crazy mess!

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2016

    The half life of the drug is quite long - about fourteen days, so there is a chance you won't see much difference in two weeks. I'm on day five of a thirty day break.

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