Anyone quit ANY form of estrogen suppressor super early?

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  • PKWGA
    PKWGA Member Posts: 19
    edited December 2018

    Ballyhoo, thanks for the advice and the links. I'm adding the vitamin C to the list of things I am researching. That is one that I definitely won't mind adding to my daily regimen. This is a hard decision to make, and I know that a lot of people think I'm crazy for quitting. But anyone who doesn't have this amount of spinal damage cannot relate to my situation. Thanks again for the advice and support.


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  • ballyhoo
    ballyhoo Member Posts: 21
    edited December 2018

    I don’t think you’re crazy. You’re doing the right thing for your body and you. I don’t know where you live and what your financial circumstances are but if you can find it and afford it I would try some Vitamin C infusions. I did a load of them right before surgery. Good luck hon

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  • marijen
    marijen Member Posts: 3,731
    edited December 2018

    windinghshores, fascinating, .5 mg as good as 2.5. So instead of 7 pills a week, 1.4 will do! I asked myself why my MO didn’t offer me a lower dose option when I could no longer take they daily dose due to eye problems and pain so bad in every joint I was hobbling around and waking up feeling dead. And myself answered she probably is not at liberty to offer a lower dose due to clinic protocol. So I’ve been off letrozole for a year and a half. But then I read another post saying it’s effective for regional recurrence but not so much for distant mets, i.e. Stage IV. And then I read jo’s post that she went to stage IV two years after stopping anti-hormonal. Well it’s just a guessing game. One thing, in a new study, 85% of recurrence is distant mets.... Just my recent thoughts on the matter. For anyone intersted, it took a good six or seven months minimum to feel better after 28 months of letrozole. Breckinridge being the worst.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2018

    Just a warning about vitamin C - not sure about pills or infusions, but in juice, it can raise potassium levels. I got a call from my MO's office that my level was too high. They may be monitoring me more closely because of losing a kidney this year, or that may have affected the blood level as my body finds its new normal. But in looking up foods I have to be cautious about, many are the foods we're told to eat to lower cancer risk. For every benefit, there can be a new risk. Please check with your doctor and/or a nutritionist who knows your complete medical history before taking excessive amounts of any food or vitamins.

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  • marijen
    marijen Member Posts: 3,731
    edited December 2018

    I ordered Vitamin C powder from Amazon, with powder you can control how much pure C you take.


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  • Dreamer54540
    Dreamer54540 Member Posts: 12
    edited January 2019

    my Dr never tested my blood, not even before the the lumpectomy . I go back to see him in 6 months, what is the blood test for

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited January 2019

    Not sure if you were responding to me? My oncologist does complete bloodwork at each appointment. It was every 4 weeks first, then 6, and now 8 weeks apart.

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  • Carvlo
    Carvlo Member Posts: 1
    edited February 2019

    I stopped tamoxifen in 3 months only. It gave me depression. I had to wait a year, and to not have my period for 2 years. Then I started aromasin. No depression, but muscle and joint pain.. I regulated those

    with alternative medicine.

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  • ballyhoo
    ballyhoo Member Posts: 21
    edited February 2019

    I'm interested Carvlo,


    What alternative medicine did you use to help with the muscle and joint pain?


    Thanks!

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2019

    Welcome Carvlo! We're so glad you've found our community, and we thank you for sharing your experiences. Stories like yours are very helpful to members in the same position!

    The Mods

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  • dakrock
    dakrock Member Posts: 99
    edited February 2019

    I have been on Letrozole a little over 13 months.   Every bone in my body hurts and I have to get an IV of Zometa every six months due to a dexa scan showing I have osteoporosis in my left femur bone that goes into my hip.   I am so tired of being tired and everyday another part of my body is killing me.  From my legs, hips , arms shoulders and today it is my shins.  I see my OC in a month and I am going off Letrozole and this will be my last dose of Zometa.   I have lost myself in this process.  I am no longer happy go lucky and so tired I can hardly believe it.   Good luck to everyone who can take these drugs.   I'm finding I gave it my best shot but I am done!!!

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited February 2019

    I took Tamoxifen for 2.5 yrs. I did read a study that said there is a small reduction in benefit from the 5 yrs, but not enough to make much difference to me. My MO didn't seem too worried about it. I told her after I quit:). It does take a toll on you mentally and physically, no matter what you take. It's always a risk/benefit. I have osteoporosis, but the Tamoxifen didn't stop bone loss progression. Best wishes to you all.

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  • PKWGA
    PKWGA Member Posts: 19
    edited February 2019

    Dakrock, You have decided to do what is best for YOU, and that is what is important. My MO was very unhappy with me for stopping the AI's, and I have gotten some negative feedback from several people. But it's not their bones falling apart, and they are not in pain 24/7 from these drugs. I only wish I had gotten off them before so much damage was done to my bones. I'm glad these drugs are available, because they have helped a lot of people. But for some of us, they do more harm than good and we have to make the choice.

    Hugs to all! 🙂


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  • dtad
    dtad Member Posts: 2,323
    edited February 2019

    PKWGA...so sorry you had serious side effects from aromatase inhibitors. Unfortunately you are not alone. My doc at a major NYC teaching hospital told me that 40-50 percent of us do not complete the recommended years of treatment due to side effects. I'm happy for anyone who does well on them and I'm not disputing their effectiveness. However I do not see how it can be considered an effective treatment with such a low compliance rate. We need to speak up for better treatment options!

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  • JoE777
    JoE777 Member Posts: 628
    edited February 2019

    I know I've posted before but sometimes new people can't go back and read old posts. I quit two years into Femara and exemistane because of pain and suffering.Three years later I was metastatic to bone and lungs. Now I'm back on femara with targeted med to suppress the mets Along with second round of radiation and more in the future. As many have already said in other threads it's a trade off with real consequences. Not to scare readers but please look at the long haul. I now have to decide how long will I fight or give in and get swept away. Early stage is a different animal than relentless MBC. Good thoughts and peace in your decisions and less pain in the coming days. Jo
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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited February 2019
    And that is the irony - many times a person has to go right back on the drug when diagnosed with MBC. If it wasn't for my high recurrence score on BCI and seeing my my twin sister pass from this insidious disease, I would be tempted to quit. I hardly remember what it feels like not to be achy all the time, so I do understand when people choose quality of life. In most cases, the odds are on their side. I do encourage people who have a few years under their belt to ask for the BCI. It can help with your decision.
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  • dakrock
    dakrock Member Posts: 99
    edited February 2019

    JOE777

    I am so sorry to hear this has happened to you.   I guess its something we never know.   My thought is that I am now 73 years old.  I don't want to be this sore and hurt when I would rather live my life without all this pain the few years I may have left.  I don't think I want to live old enough to get alzheimmers.  I just don't know what would be worse.   I don't want my family to have to worry about me with anything.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited February 2019

    I can relate keep the faith. I have osteoporosis too but my MO started me out on Arimidex which attacks the bones. I already had osteopenia. Duh. I took Arimidex for a year before she switched me to Tamoxifen. I had zero issues with Arimidex but Tamoxifen caused joint pain that got pretty uncomfortable at night. I did get to quit taking it when I reached my 5 year milestone. I'm 7 years out last August.

    I know women who quit taking anything because of debilitating side effects. One in particular is now over 10 years out. She suffered with every drug they prescribe until she had had enough.

    QOL is vital for sure but we all know it's a risk to cease and desist the drugs. No guarantees either way of course but the fact is our doctors or friends or family don't have to endure the constant pain those drugs cause. Easy for them to say keep taking them. It's not their lives or their bodies. Some ladies stop chemo when it's just a matter of time. So you should suffer with the all that chemo brings to buy yourself a few months that you will spend in constant pain. No way I would.

    It's a crap shoot and a personal decision and not one that should be ridiculed by anyone. It's our call.

    I'm sorry for all of you who experience all the discomfort and pain. I was blessed mine was manageable.

    There's no absolute proof that discontinuing the drugs computes to an automatic recurrence or vice versa. It's like playing Russian roulette with your decision but it's still your decision.

    Good luck!

    Diane

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  • SoCalGal2
    SoCalGal2 Member Posts: 1
    edited July 2019

    I am so glad I found this site, as I thought I was alone in the side effects caused by the hormone blockers I have taken since my lumpectomy. I have been a very healthy person until my diagnosis. I exercise regularly, am at a normal weight and generally live a healthy life style

    Initially my MO prescribed Anastrolzole and I had no serious issues for the first 4-1/2 months.Then suddenly my elbow started hurting, and then the pain moved to my hands, knees, ankles and feet. I have an incredibly high pain tolerance (dealt with ovarian cysts for years), however the pain became unbearable.I went from feeling great to feeling like I was 90 years old

    I was scheduled to see my MO for the first follow up when the pain was becoming so bad but I stuck it out until my appointment.My MO gave me a 2 week drug holiday and said the side effects should go away unless there is an underlying condition. The pain was better in a few days then worsened. My MO said to take another week off and then start Exemestane

    I did visit a Rheumatologist to rule out an underlying condition. She confirmed there was no underlying condition and told me that she see's many woman suffering from joint/bone pain like me.Her recommendation was to start taking Tumeric or she could prescribe a pain medication.I don't like prescription pain medicines so started Tumeric.Within days I noticed a difference.The pain didn't go away but it was more bearable.(NOTE:if you try Tumeric you need to do research to make sure the buy the right kind)

    By the second night on Exemestane all the pain came back but was at least bearable. A new side effect was non-stop tingling in my hands and feet.About 5 weeks after starting Exemestane I developed Restless Leg Syndrome (RLS) and the related condition called Periodic Limb Movement of Sleep (PLMS).The PLMS caused uncontrollable jerking movement of my whole body while trying to sleep (one night it was almost non-stop).I can find no information about RLS/PLMS being a known side effect.Has anyone else had this??

    My MO gave me another two week drug holiday and then restarted me on Exemestane.Her hope is that the side effects don't come back.I had immediate relief when stopping and unfortunately the joint/bone pain has returned within days of restarting.The tingling in my hands and feet is starting again too

    If this becomes unbearable again the MO says I should try Tamoxifen.I see that this drug causes the same side effects for most of you

    I too want to try and stay on this drug therapy but it's negatively impacting my quality of life like it has for many of you!

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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2019

    I was prescribed Arimidex when I was first DX but my oncologist switched me to Tamoxifen when I complained that Arimidex attacks the bones and I already had osteopenia. Duh? She should have known that.

    I took Tamoxifen for 4 years. It wasn’t a walk in the park and I had joint pain and difficulty concentrating at times. I have to admit that if I had the side effects others have had with the drug I would have had second thoughts about taking it. QOL is important. Idk why some doctors are so insensitive to that. We know it’s an additional insurance policy to ward off a recurrence but you still have to live as pain-free as possible.

    Diane


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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited July 2019

    I took Tamoxifen for two years after my first Dx. After two years I quit, not due to side effects, but to get pregnant (I was Dx at 27 the first time). In 2016 I started Tamoxifen again after a Dx of ADH, and have been taking it since despite increasing side effects. Then in May of this year I was Dx with a new highly ER+/PR+ IDC. Clearly the Tamoxifen isn’t working for me so after my surgery in August I will be switched to ovarian suppression + an AI. I always wondered if stopping Tamoxifen early the first time was a mistake, but in my case it seems Tamoxifen isn’t effective

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