Thoughts on Stopping the Tomoxifen

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Stage III Breast Cancer

 I'm not sure how good of an idea this is, but last monthjust before my scans, I stopped my hormonals tomoxofin. I've been off it a month hoping I will feel better about myself.  Still have bone and joint pain, wieght gain, nail thinning and breaking, and hair thinning..  Aways so darned tired.  How long can I stay off this drug?  Or am I taking too much risk by not being on it regularly?

image

Barb

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  • faithfulheart
    faithfulheart Member Posts: 544
    edited August 2011

    Hey barb,

    Have you talked to your onc. about your side effects?  I'm tired too, I'm also on tamox. I saw my

    BS  the other day and she ask me if I was taking my tamox every day. I told her I was, and she said are you sure your taking it everyday. It just makes me wonder if you should run it by your Doc. I don't think the small amount of time you have been off has hurt you, I would not worry about that. However, I think us ER gals need thoughs hormonal blockers, I just wonder if your onc. could switch you to something else. Have you had an ooph? that could open up options.

    Thats a really personal decision though, I know the aches and pains suck!!  I think the worst is lack of energy, do you feel better now that your off?

    I hope you can find a solution!!!!

    You are in my prayers!!!!!!!!!!!!!!!!!!!!!

    Steph

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  • karen1956
    karen1956 Member Posts: 6,503
    edited August 2011

    Barb....I endured anti-hormonals (mostly AI's but also tried tamox) and it just got to be too much to bear (or is it bare).....I made peace with my decision to stop......Its now been 17 months since I stopped and I have never looked back with any regret.....as I approach my 6 month check up next week, I am beginning to worry about results (in February I moved from 3 to 6 month visits), but if G-D forbid the beast returns, I still know in my heart that I have given it my all....I have done everything in my power to go after the BC....bilat, chemo, rads, ooph and AI's for 3 1/2 years.....a couple months ago, I told someone that had I stayed on the AI's and the beast came back, I would have been really, really angry.....There are no guarantees......I say my odds are either 100%...either it will stay away or it will come back!!!!  I do have a better QOL, but I am not back to where I was before Dx and don't think I will ever be, but life is better off the AI's.  It took me a long time to come to the decision to stop, but once I made peace with myself and the decision, it was easy....so I guess what I'm trying to say is, only you can decide what is best for you....enduring the tamox or AI's or living life off of them.....Hugs...Karen

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    After I went off it a month I went back on earlier this month but only took 1/2 the pill each day 10 mg.  The whole week I was miserable.  Terrible hot flashes and sweats all day, and severe anxiety to the point that inside my chest I felt like I was going to have an emotional breakdown. Although feeling that way, thank goodness no acting out these feelings but really deeply depressed too.  So you know what, the last 3 days I have refused to take it again, and have felt better, less nervous depressed and sweaty.  Still have some joint pain but that's just because I'm estrogen depleted I guess.  I really can't bare going back on anti- hormonal treatment.  I want to be sure in my mind that I want to stay off of it though.  My ER+ is 100% and PR+ 98%.  I must be nuts to take such risk, but I want a little more quality of life.  Am I wrong to want to skip the Tomox TX?

    image

    Barb

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  • dsub
    dsub Member Posts: 37
    edited August 2011

    I stopped tomoxifen about three months out after starting it. The side effects were what you describe. I could barely walk. I had a complete hystorectomy in '99 for cervical cancer. Went on prempro patches up until the year before diagnosis. My cancer is 97 to 98% er pr+. I don't feel like the Tomoxifen would have helped me deter the cancer as I most likely brought it on myself by taking horomone supplements. I am hypothyroid and my immune system does not work, steroids for the rest of my life, so I make no horomones to speak of. I am three tears out. So far No cancer. I have a 76% survival rate according to my onc. I don't believe that I could have lived with the SE's of the tomoxifen and been anywhere independent. I think we each have our own choice to make and to live with that choice after we make it.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited August 2011

    Barb....my onc supported me going off the AI's, but he would much prefer that I take them.....when I saw him in February, I asked him if I went back how long would I have to take them and he said 5 years!!!!!  I had been off for 11 months at that time....no way can I imagine enduring 5 years.....my QOL in regards to physical side effects are so much better..cogntive functioning is better too...I still struggle with the depresion and anxiety.....not sure that is all cancer related though.....I know the AI's provide great benefit for me, but as I said in my last post, I am at peace with my decision to stop....Can't say what I'll do if G-d forbid the beast returns, except that I know in my heart I have given it my all......I think as long as you are at peace with your decision, whatever it may be, then it is the right decision for you.....Hugs, Karen

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited August 2011

    (((Barb)))

    I'm on Tamoxifen too and just recently started having joint pain in my hips as well as issues in my back area.  I've had the fatigue too.  For me I am willing to tolerate the pain as long as I know it's nothing insidious.  HOWEVER, your pain and mine may not be comparable so you are the only one who can judge that.  Definitely a sit down with your oncologist would be in order to discuss your options.

    Take care,

    Sharon

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited August 2011

    The SEs from Tamoxifen and AIs can be pretty bad for some of us.  And I completely agree with you that quality of life is high on the priority list.  So I think it comes down to figure out what your "line in the sand" is.

    For instance, I love gardening.  Am I willing to give up gardening because of an AI?  Or would not being able to gardening anymore make me depressed and take all the joy out of my life?  What are your boundaries that you refuse to cross?

    Then ask yourself the reverse question.  What if I stopped all hormone treatment and the cancer came back?  Would I have regretted the path that I chose?  Or was the shortened life worth it because it was full and vibrant?

    These are really, really tough questions.  And I stand by the suggestion I posted in the hormonal forum.  Write a letter to your onc.  Explain your priorities.  Explain why some of the SEs are unacceptable.  There is a slim chance if you and your onc focus on one SE at a time you may find ways to make them livable.  Or the two of you may come to the conclusion that no hormonal treatment is best for you.

    I'll be honest, Barb.  I'm going to do my damnedest to stay on a hormonal.  But that is because I saw my sister finish her 5 years of Tamox and then mets showed up 3 months later.  She and I shared a lot of genetics so I feel that in my heart if I stopped any AI the same thing would happen to me.  The Aromasin was killing my joints and tendons and I envisioned myself in a walker at some point.  A month into Tamoxifen has been much better but I know that things may change just like it did with Aromasin.

    This is a tough call.  Your immune system may be strong enough to continue to kill any cancer so the hormones may not be needed.  If you put down on paper your priorities against your SEs, the answer may become much clearer.

    I wish you better days!

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited August 2011

    Hi,

    I did 3 1/2 years of Tamoxifen after Stage 1, ILC, ER++ PR-, HER2-.  I stopped when I discovered the ILC had a recurrence in the same breast, same location.  I had no side effects with Tamoxifen other than hot flashes.  I'm on Armidex now and my joints are terrible but I find if I push through the initial pain, it goes away with a little exercise.  I don't know why my cancer came back and I don't know if the Tamoxifen helped.  I just know that I have a lot to live for and I will put up with as much pain as I can stand in order to be around longer.  My surgeon told me the Tamoxifen failed me but my oncologist said it kept it away for 3 1/2 years.  I guess no one will ever really know.

    Good luck,

    Nancy

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  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited August 2011

    For three years, I watched my mother die a painful, horrible death from stage 4 breast cancer. In the 1960s, there was no tamoxifen or arimidex. Whenever I feel like the arimidex aches are going to kill me, I think about how much worse her suffering was than anything I've experienced while taking an anti-hormonal. I imagine that she would have gladly taken a pill that would have helped her live cancer-free, even if it made her feel like she was an arthritic 90-year-old. That's my motivation to pop the pill every morning!

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited August 2011

    I'm sorry you're having such terrible SE's.  I'm no help with the Tamox.  I'm on Aromasin and mine are tolerable but much better than when I was on Arimidex.  I guess I'm too scared to get off as well, so I deal with it.  I have wondered if it's even worth it because I'm BRCA1+, so I could be doing it for nothing.  I hope you find some answers soon and feel good about your decision, which ever it is.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    I am still choosing not to take the Tomox.  I really do feel so much better since I've stopped taking it!  My line in the  sand is the weight gain, anxiety and depression.  The fact that I feel physically and emotionally better is huge for me.  Still,  I am conflicted though.  Do I stay on this tx and go back to more water retention weight gain and deep depression, just to avoid recurrence? And yet I wonder if I could end up progressing anyway on the Tomox. 

    image

    Barb

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  • karen1956
    karen1956 Member Posts: 6,503
    edited August 2011

    Barb.....I figure its 100% not going to come back or 100% going to come back....I endured 3 1/2 years on AI's (which included 2 months on tamox)...I am at peace with my decision to stop....its now 17 months since I stopped taking the Aromasin and QOL is better.....for me, if I had stayed on the AI's and it came back I would have been really, really angry....now I know in my heart that I did everything I could as far as Tx.....bilat, chemo, rads, ooph and 3 1/2 years of the AI's....I saw my onc last week for 6 month check up and he told me if I ever wanted to start again to just call him and I said I doubted it....he doesn't give me any pressure and no longer tells me the dangers of stopping...he tells me that I am doing well....onc draws labs right before appt, so I am waiting for results....but since I haven't heard anything yet, I am going on the notion that all is well...they mail results but I'm sure they call if news isn't good.  I think the key for you is just to make peace with your decision...then it will be the right decision....I'm still struggling with depression off the AI's, but the joint pain, insomnia, cognitive and memory are much improved.....HUgs to you...Karen

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    Karen  Thanks for your words.  I know what you mean about feeling mad if it came back after years of enduring the SE and poor quality of life.  I've already made that decision in my heart.  Yes I still have some joint pain and I know from my previous scans it's dengerative, but now I don't get as miserable with it as I did  on the Tomoxifen.  It's another day today without Tomoxifen and I feel good about it so far.

    image

    Barb

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  • faithfulheart
    faithfulheart Member Posts: 544
    edited August 2011

    You know what barb,

    I have a friend with stats very close to yours, she stopped tamox, 2 years ago and she is doing great!!!

    She got to the point where she could hardley walk on tamox, she feels great now and is still ned!

    Go with your heart, thats all any of us can do!

    love

    steph

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited August 2011

    QOL is so important.  As long as you are at peace if the cancer comes back.  It's a rough decision but we get some pretty rough decisions thrown at us. If you gave it your all and this is where you are then I wish you peace with your decision.

    In the meantime I placed a call to my onc about my continuing problems and he wants me to quit the Tamox for a week and then go back in to see him.  I really understand what you're going through!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2011

    Damn!!  After going off the Tomox I feel so much better in so many ways.  QOL really is so important.  I was feeling like a 90 yr women until I stopped Arimidex and went on Tomoxifen.  Then after starting the Tomox, I felt like a 90 yr old fat, depressed women with rotting nail beds, and thining hair.

    Now I feel so much better, but the problems with my knee are so painful.  I can't wait to resolve that.  Went for the MRI yesterday now waiting to see what orthopedic doc wants to do.

    image

    Barb

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