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Anyone Regret Not Taking Tamoxifen

24

Comments

  • new2bc
    new2bc Member Posts: 254
    edited March 2013

    momof3boys,

    Thanks for letting us know that tamoxifen from different manufacturer makes a difference. I am supposed to start tamoxifen in about a month. Should the prescription write the name of the manufacturer or should I tell the pharmacist which one I want? Thanks for all the great information in this forum.

  • nbnotes
    nbnotes Member Posts: 338
    edited March 2013

    mbf -- If you read posts and signatures from those in the stage iv threads, there are many that were originally a low stage, but now have mets.  I cringe whenever I see someone talking about stopping their hormonal b/c they aren't sure it is worth it, but normally I don't post.  I didn't have that option; we found mets in my liver (7-10 tumors) before starting chemo even though I was only a stage 1 in the breast.  My sister and I talk now about how naive we were originally in not realizing that even stage 1 does not guarantee no mets.  I'm not putting this to scare you, but just to reiterate what someone else said about living with side effects vs living with mets.  

  • mbf
    mbf Member Posts: 27
    edited March 2013

    ICanDoThis - I'm so sorry to hear about Robin - that certainly makes me think so much more about my decision.  I feel very guilty to be considering stopping or lessening the tamoxifen when I know there are so many that don't even get the chance to use it as a preventative.  Thank you for letting me know about Robin - I can't even imagine all that she and her family went through.  So sad.

    Gratitude - I love your comparison of us to the Incredible Hulk - that's perfect!

    nbnotes - I'm so sorry you are dealing with mets.  I can't even imagine how you must have felt to go from stage 1 to stage iv before even having a chance to start treatment.  Like I said to ICanDoThis, I feel very guilty to be considering stopping or lessening the tamoxifen when there are so many that don't even get the chance to use it as a preventative.  I had looked at signatures in the stage iv threads, but had a hard time really figuring them out, plus many that started early stage seemed to be er-/pr-, so I knew they differed from me.  If you don't mind telling me, was there a reason they checked your liver since you were at stage 1 in your breast?  I know they have not done any scans of anything on me so that does make me nervous now that it could be lurking somewhere else.  I hope you are doing well with your treatments and thank you so much for sharing your experience.  My thoughts and prayers are with you!

  • gemini4
    gemini4 Member Posts: 320
    edited March 2013

    MBF -- my colleague who found acupuncture helpful during chemo and I both are in the Boston area, so unfortunately I can't offer you any rec's. But I wonder if your breast center/hospital might have a list of resources for complementary care practitioners in your area? Or maybe post a shout-out to other western MA ladies on BCO to see if they might know of anyone? Good luck!

  • nbnotes
    nbnotes Member Posts: 338
    edited March 2013

    mbf - Thankfully, my cancer center automatically does a PTscan before chemo so that is why I got scanned.  I had no symptoms, and my liver enzymes were not elevated.   Please don't feel guilty about thinking about stopping it. That is definitely not why I posted.  Of course, you have to decide if the side effects that you are having are worth it. You might want to see if there is another option that would have less side effects.    

  • momof3boys
    momof3boys Member Posts: 63
    edited March 2013

    Hi new2bc- yes, I had my mo specifically call in Mylan brand Tamoxifin. For the first few months I took it, the pharmacy gave me a different kind each month, and I felt like crap. I found the Mylan brand to have the fewest SE for me. The problem was that some months mylan was back ordered. My mo checked with my insurance, and the insurance will allow a 90 day supply. So, now with my mo specifying Mylan, and my getting 90 pills instead of 30, I have less to stress about!

  • mbf
    mbf Member Posts: 27
    edited March 2013

    Thank you for the information/suggestion gemini4.  Have a great weekend Smile

    nbnotes - oh I know you didn't post to make me feel guilty :)  I just always wish there were something I could do to help those like you who are dealing with diagnoses that are much worse than mine.  I'll continue to keep you and all others on these boards in my thoughts and prayers.  I have asked my onc if I have any other choices and she just gives me a flat out "no."  So, I either figure out how to get a second opinion, or just forge ahead, suck it up, and consider all the se's my 'new normal,' because given the feedback I have received here I don't think I'm at a place where I'd be completely comfortable stopping the tamoxifen.

  • creed
    creed Member Posts: 2
    edited March 2013

    MBF, My situation is a little different than yours, but I will still chime in. I quit taking the anti hormonals, and then quit tamoxifen, one right after another, because of quality of life issues. This was all the first couple of years after my initial diagnosis and treatment of chemo and rads in 2007. My thinking was much like yours, I wanted the time I had left to be worth living and to be able to enjoy life. Now I am faced with stage IV to bones and bone marrow, all over the spine, hips, and pelvis. In hindsight, I regret my decision. However, I am now fully committed to the AI's, tamoxifen, or whatever else my onc wants to throw at this beast, and PTL! they're working! My TM's are going down. I'm now on Arimedex, monthly Aridia, and finishing up rads. Soon to undergo cyberknife.

    I should add, I was first diagnosed at stage IIIC, 13/16 LN's. The risk was great and I feel I lost the bet. But I've been given a another chance!

    MBF - I don't mean to frighten you, but we know stage 1's can and sometimes do recurr. Your time left may not be as short as you think and Tamoxifen, as bad as it can be, could give you the years to see your grandchildren marry! I know the SE's can be just horrible. I wish now I had been more thoughtful about just managing the SE's rather than abandoning Tamoxifen and the the AI's I tried. I hear now, on these boards, woman using various drugs to boost their energy levels, and lots of options for the joint pain. Best of luck! Such a personal, individual based decision.

  • gratitudeforlife
    gratitudeforlife Member Posts: 138
    edited March 2013

    Creed,

    Thank you so very, very much for your post. It is important for BC patients to share their experiences, decisions and outcomes.  Hope this time round that the treatment plan decimates every cancer cell in your body.

    Has anyone on this thread consulted either a homeopath or naturopath regarding what they would recommend in place of Tamoxifen?  Also, has anyone used such a product (if there is such a product?) for any length of time (two years-plus with a clean bill of health)?

  • mjewers
    mjewers Member Posts: 1
    edited March 2013

    I feel silly asking but what does mets mean?

  • mbf
    mbf Member Posts: 27
    edited March 2013

    Creed - thank you for sharing your experience and I'm so sorry that you "lost the bet."  But there's a new bet now and you're going to win it hands down!  It really has helped to get the feedback from everyone here - it's given me more insight into the 'pros and cons' of it all. 

    I feel almost like it's pay now for 5 years or pay later for who knows what/how long?  Ugh!  I just keep going back and forth.  I'm 46 and move like I'm 60!  Mother's Day last year (days before my surgery and the beginning of all this) I played 9 holes of golf with my 3 kids, walking and carrying my own bag... now this year it hurts me to walk just 2 miles carrying nothing (but I'm still doing it!)!  But I know I have to appreciate that I even have the chance to walk and get better and move on from this.

    You are in my prayers Creed, and I pray that your TM's continue to go down and the rest of your treatment is successful! 

  • noellech
    noellech Member Posts: 4
    edited March 2013

    I almost stopped early on but then dr prescribed half dose of effexor 37.5 mg daily. I actually only took half that and knocked all the side effects out within a week. I will be coming up on 5 yrs soon and don't want to stop taking it. Good luck!

  • new2bc
    new2bc Member Posts: 254
    edited March 2013

    Hi everyone,

    I have had bilateral mastectomy and I am concerned if Tamoxifen is preventing breast cancer only or if it also helps prevent mets. I had no node involvement, ER+, PR+,HER-, IDC less than 1 CM. I am scared of the side effects of Tamoxifen such as uterine cancer, blood clot, etc. Can someone give me some insight if I am a good candidate for Tamoxifen?

  • Not-Me
    Not-Me Member Posts: 50
    edited March 2013

    I was dx in 2004 (age 41) with Stage 1, lump with rads and Tamoxifen.  1.5 years later, I was not tolerating Tamox well at all, with hot flashes, severe bruising, spaciness, and cognitive difficulties.  

    I took DH and 20 year old daughter with me to the appointment.  I was 2/3 the way thru my MBA program and noticed that since on Tamox, I was scoring less that class average which was not the norm for me.  Onc said that with a healthy diet and physical activity that Tamox would only increase percentages by one to two for no reoccurence.  

    Later, my surgeon said I had a 10% chance of reoccurence.  WTH...the numbers do not add up.  

    I discontinued it and did not think too much of my decision until 9 years later, 12-31-12 when I recieved the hell info about the positive mammogram.  Dark NYE...yes, and you can read my bio and the current surgery recovery is not fun.  


    Well, I am not sure I regret my decision...I have had a great life in the last 9 years, with lots of fun.  I am a very positive person by nature.

    I know this is a very hard decision for you and for others.  I do not know that I even assited in anyway, but please know that it is your decision and i am sending hugs.  Smile

    Sue~So glad to see you here GF!  I remember RobinWendy.  Hugs to you.  

  • mbf
    mbf Member Posts: 27
    edited March 2013

    Hi noellech - thanks for the good luck wishes.  Congrats on almost being done with tamoxifen!  I can understand you feeling like you don't want to stop, and I wish you a long, cancer-free life!

    new2bc - my understanding of the tamoxifen is that it lowers the chances of both a recurrence of breast cancer and mets in ER+ cases, so it should be part of your treatment.  Remember - there are so many women out there that do very well on it and have no problems at all!  I hope that you are one of those people Laughing

    Not-Me - Thank you for posting your experience.  I'm so sorry that you are having to deal with bc again.  It sure sounds like you have a great attitude and I pray that all goes well this second time around.  It is so crazy how the numbers that they 'throw' at us tend to not be the same - one dr says one thing and another dr says something different.  That part is very frustrating at times.  I'm a little confused though - your first Dx says 1/7 nodes and mets... when there are mets don't they consider it stage iv?  Did you receive chemo or radiation the first time around, or was tamoxifen the only treatment option?  I hope you are feeling well after your recent surgery.  Take care!

  • Not-Me
    Not-Me Member Posts: 50
    edited March 2013

    Hi...no the first time round, they placed it at Stage 1 due to .8mm at site and .08 mm spread to one lymph node.  Received radiation and Tamoxifen for 1.5 years.

    Second time around, Stage 1 again due to invasive pathology.

    I am okay with this, although ony half thru recovery.  Three weeks out today.  Hugs to you and all of us!!!  Smile 


     

  • newyear13
    newyear13 Member Posts: 18
    edited March 2013

    I was diagnosed with invasive bc with tubular features.  The cancer was less than 2mm and grade 1.  At time of diagnosis, the stage was unknown.  I had a bilateral mastectomy, and I was aware by doing so I would avoid radiation. There was no lymph node involvement.  

    I was very surprised when a panel from my hospital recommended no tamoxifen.  The oncologist explained that my risk of getting uterine cancer was greater than the less than 1 percent benefit I would receive from tamoxifen.  He stated that had I done a lumpectomy, I would be on tamoxifen.  Thereafter, I obtained a second opinion from an expert at the Simon cancer center at Indiana University.  She too recommended no tamoxifen.

    Still, I get worried about not taking hormonal therapy.   I'm now eating a very low fat, non-dairy diet, and I'm exercising every day.  I am losing weight--need to shed about 15 pounds--which I hope will help lower my estrogen levels.  I'm thinking about getting another opinion about tamoxifen.  The thought of it coming back just really scares me.

    dx: dec 2012 stage 1a less than 2 mm with tubular features, grade 1, no lymph node involvement

    jan 2012: bilateral mastectomy  

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited March 2013

    nope not at all, even though got a recurrence.

  • Not-Me
    Not-Me Member Posts: 50
    edited March 2013

    I saw a new onc yesterday.  He said I should have stayed on the Tamox the first time round.  This far out, I had a 9% chance of new C without Tamox and a 4.5% chance with Tamox.  No guantees one way or the other. 

    Newyear13~No Tamox was recommended for me this time round...also Stage 1 with BMX.

  • sherridl
    sherridl Member Posts: 3
    edited March 2013

    I am just the opposite - I regret taking Tamo.  I was stage 1 with LCIS also and took Tamo for 4 years.  I had many of the side effects you have listed plus more and ended up taking about 12 other meds to offset these (and I was never able to go to the full 20 mg).  After I was falsely told by my oncologist that I had bone mets, I stopped.  Further tests revealed I had the adult version of rickets - 6 broken bones in 6 months, including 4 ribs and not mets.  During treatment for this, 2 endocrinologists stated that Tamofixen damages bones.  Go figure why the drug company keeps saying it protects them.

    I know women on both sides of the coin - women who had few side effects, and some who have loads of them.  Unfortunately, it seems as we are among the first group.  

    It's a hard decision to make.  My first oncologist told me that the drug co. ran the tests with 20 mg, but a lesser dose might be just as good - I was only able to tolerate 10 mg.  Good luck - I too would get a 2nd opinion, although I also know that some oncologists are not very forthcoming!

  • Golden01
    Golden01 Member Posts: 527
    edited March 2013

    sherridl - So sorry about the effect of Tamoxifen on your bones. My understanding is that Tamoxifen decreases bone mass in premenopausal women and little or no effect on bone mineral density in postmenopausal women. Aromatase Inhibitors used for postmenopausal women are known to decrease bone mass. I'm already osteopenic and am a little over a year out on Tamoxifen. We plan a switch to AIs at the 2 1/2 year mark. I'm worried about my bones when that time comes. 

  • lookingglass
    lookingglass Member Posts: 4
    edited April 2013

    Hi MBF, and Hi all,

    I came across this debate today, when I was searching online for thoughts on the same question.  I felt I should contribute, so just set up an online account to join in. 

    I was diagnosed last May 2012, Grade 3, Stage 2, 1 Lymphnode affected, 20 removed, lympectomy, DCIS size 38mm,  had Chemo and Radiotherapy, Estrogen +.  Had another Mammo and ultrasound yesterday, appears clear (sorry, I have not yet managed to get my 'medical' details set up the way most of you have). 

    Anyway,  to date I have not yet started with Tamoxifen, because of fear of  side-effects.  Creed's contribution has just given me a massive reality-check, which I need to digest.

    I think it is really important, that we realise we have choices, and each single one will have a consequence we are responsible for.   We all also have the right to change our minds, and I think it is very crucial, that we regularly review our medical etc choices. For me, not a day goes by when I do not check within myself, how I feel about Tamoxifen.  I had a bad experience with chemo (cognitive and physical impairment, Grade 3 peripheral neurop).  And I wonder whether that experience is still influencing my fear of potential Tamox side effects.  I also work in mental health (well, I stopped immediately after diagnosis and I am planning to go back for a few hours a week from May), and anything that can affect my mental wellbeing (eg depression) effectively means I cannot do my job. I don't have a family, perhaps that makes it all a bit easier.  Nevertheless, my decision for the time-being is not flippant.  I know, it can mean the difference between life and death.

    Something else that influenced me a lot was researching other methods of managing estrogen (I am pre-menopausal, but have not had a period since Sept 2012).  I imagine there has been a discussion on these boards about Dim and IC3 etc.  Search for these topics on the canceractive.com website.  In December 2012, I adopted a specific diet and started taking these supplements and many others.  3 weeks ago I  undertook (privately) an estrogen metabolism test, and I have reviewed the results with a nutritionist and herbalist.  We have fine-tuned my regime and I have decided to repeat the test in July.  If my values are not in the right range by then, I will review my position on Tamoxifen again.

    Like probably many of you, I have made various life-style changes to reduce stress, toxins and manage estrogen.  And I must say, I for one, feel very energised.

    But there is no guarantee this will work, there is no guarantee that Tamox would / will help me either.  One big plus for Tamox is the money that the pharma and medical industry has invested in research. I have found clinical studies for DIM, I3C etc (on humans) and they are encouraging. 

    I have not been able to have a thorough conversation about this with my oncology team or my general practitioner.  And I suspect they cannot really say / recommend anything that is not in-line with their official guidelines.

    Well, so much from me.  Feel embraced and - good luck.

    LookingGlass

  • ali68
    ali68 Member Posts: 644
    edited April 2013

    My SE are so bad I'm stopping Tamoxifen I need to feel normal again.

  • lookingglass
    lookingglass Member Posts: 4
    edited April 2013

    Hi Ali68, Do you have a back-up plan, if you do stop the tamox? Do you have to come off slowly?

  • ali68
    ali68 Member Posts: 644
    edited April 2013

    Have been told i can take an anti depressant with Tamox. They won't change the drug as i'm pre men. I'm taking it at night now so i can get some sleep. Not a happy bunny !!

  • proudtospin
    proudtospin Member Posts: 4,671
    edited April 2013

    I know women who were put into menopause just so they could take the ALs, not sure if you are open to that?  the woman I am thinking of was treated at Dana Farber in NE and has now ended her 5 years...

  • lookingglass
    lookingglass Member Posts: 4
    edited April 2013

    I have trouble sleeping and I am not taking Tamox (I am also pre-men). I think in my case it has a lot to do with general anxiety since the diagnosis, and now about whether to take tamox or not.  Sometimes I think, if I was on it, I would attribute a lot of what I might feel to Tamox (incl feeling down).  Have you tried some herbal stuff from the chemist or health food shop, or even a herbalist? I sometimes take some drops that contain hops, which helps.

  • bluepearl
    bluepearl Member Posts: 133
    edited April 2013

    I didn't take Tamoxifen the last round and ended up with a contralateral breast cancer. I started Tamoxifen two weeks after another mastectomy! I think I finally put it into my mind that the side effects of tamoxifen aren't as bad as the side effects of stage 4 cancer....lots of chemo, lots of pills, lots of pain. I am also on an antidepressant which keeps any hot flashes at bay (and make sure it's one that doesn't work against Tamoxifen) and pain as well. I was a bit mad at myself (I had 1 cm, stage 1, grade 1, all good factors actually, low Ki67, no LVI, clean nodes, ER/PR+ and her2-) and just got surgery for a 7mm, grade 2, with LIV, but clean nodes. You have to think as tamoxifen (or A.I. as a type of "chemo", starving stray cells) and like chemo doesn't work 100% of the time, but can keep recurrences down 50%......on a scratch ticket, with those odds, I'd buy it!!! I understand the Q.O.L. issues as I also have PMPS from first mastectomy, but I put that one into my mind as "some people have worse arthritis pain than I do with PMP"....sometimes, too, SEs disappear as your body gets "used" to them. That being said, my grielfriend had a stage 2, grade 3, 2.5 cm IDC with a postive sentinel node and had only surgery.....NOTHING else (which I would NEVER recommend) and she is in her 7th year, NED. LUCK there. There's no guessing.....but give it a while longer.....

  • smo23915
    smo23915 Member Posts: 71
    edited April 2013

    Does anyone have ringing in the ears/head with Tamoxifen?

  • gentianviolet
    gentianviolet Member Posts: 105
    edited April 2013

    I do but have learned to ignore it most of the time.  Good thoughts

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