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Unable to tolerate tamoxifen.

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i started taking tamoxifen on 26/12/16 by the 30/12/16 I was a wreck. I have had a severe psychological reaction to it my symptoms include severe depression, suicidal tendencies, high high anxiety, feelings of complete disassociation to everyone and everything around me, paranoia, anxiety, inability to concentrate, focus, memory loss, forgetfulness, horrendous brain fog, inability to get words out correctly and emotions so strong it's been an horrendous and scary few weeks for me and my family. I have been taking 75mg of pregabalin x, 3 times daily for the anxiety.

I have had no physical symptoms at all no flushes or aches at all. Previously I have had no issues with my mental health at all.

Today my oncologist has told me to stop them for 2 months and see if I return to normal we will then try again but if the same thing happens then I have to make a choice quality of life or tamoxifen as there is no alternative. I really don't know what to do I did not have chemo, tamoxifen and rads are it treatment wise.


Any advice? Anyone else having similar issues? I'm just scared now and feel in a loose loose situation.

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Comments

  • farmerlucy
    farmerlucy Member Posts: 596
    edited January 2017
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    I did the first time I tried it. I made the mistake of starting celexa at the same time too. What I didn't realize at that time was that I had fallen into PTSD-like symptoms, which are very common for us BC folks. It took many month of scary times, counseling, and a lot of hard work to pull out of it. I restarted Tamoxifen a year late, and then only had the normal symptoms of hot flashes and such. Your doctor is very wise to pull you off of it. That way you'll be able to tell what is what. I'm sorry you are feeling like this. PM me anytime if I can help.

  • tangandchris
    tangandchris Member Posts: 934
    edited January 2017
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    Hi Vix

    I too had a horrible reaction to Tamoxifen, similar to what you are describing and I stopped taking it. I knew that I could not live like that and was willing to take my chances. My doctor told me that I could go for a hysterectomy and start an AI once I was menopausal. It sounds extreme, but I took some time to consider it and that is what I chose to do.

    Farmer could be right too, it could be that you just triggered something that was already there and just need time to work thru it.

    These are tough choices, but sometimes it helps to know you are not alone and you can come here and talk it out. I'm glad you stopped taking the Tamoxifen though. That is no way to feel or live. ((hugs))

  • farmerlucy
    farmerlucy Member Posts: 596
    edited January 2017
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    I did the first time I tried it. I made the mistake of starting celexa at the same time too. What I didn't realize at that time was that I had fallen into PTSD-like symptoms, which are very common for us BC folks. It took many month of scary times, counseling, and a lot of hard work to pull out of it. I restarted Tamoxifen a year late, and then only had the normal symptoms of hot flashes and such. Your doctor is very wise to pull you off of it. That way you'll be able to tell what is what. I'm sorry you are feeling like this. PM me anytime if I can help.

  • Hattiebell
    Hattiebell Member Posts: 2
    edited January 2017
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    I was post menopausal when i got cancer. Since it was early stage 1 & lymp nodes were negative i will take my chances without the blockers. 2 months was all i could stand. I am glad i joined this. It helps with my depression.

  • moderators
    moderators Posts: 8,085
    edited January 2017
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    Hi Vix,

    We just wanted to join in with a warm welcome to Breastcancer.org. We're so sorry you're experiencing these terrible side effects, but as you can already see, you've come to a great place for support while you look for answers and advice.

    Many members here have had great experience with trying some complementary therapies to combat emotional and mental effects of treatment -- for more information, visit the main Breastcancer.org site's section on Complementary & Holistic Medicine. There's also good advice and tips on the following side effect pages:

    We hope you'll be able to feel better soon and that you'll have a better experience with your next attempt. Please continue to let us all know how you're doing and if you find anything that helps.

    We hope this helps!

    --The Mods


  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
    edited January 2017
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    You could try ovarian suppression with Zoladex and an AI - aromasin, anastrazole, etc. I could not take tamoxifen because I am on an SSRI which uses the same cell receptor to deliver medication information. I am having an oopherectomy and hysterectomy soon. I will then take an AI. You are not alone, anything that you do to your ovaries can manifest in mood and biochemical imbalance.

  • novagirl
    novagirl Member Posts: 82
    edited January 2017
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    I am premenopausal, I could not tolerate tamoxifen. We stopped for a month then restarted, but I still was having issues. My MO put me on Fareston. It is a SERM like tamoxifen but it is indicated for postmenopausal advanced BC. It is used off label in my case. I feel fine on this medication. It also does not interact with many of the medications tamoxifen does. I hope that helps:-

  • gardengypsy
    gardengypsy Member Posts: 499
    edited January 2017
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    Vix,

    I am so glad you wrote. I had just become menopausal when diagnosed. After surgery and chemo, my MO put me on Tamox because she'd thought I'd tolerate it better than the AIs. WRONG! The psychological symptoms are insane.

    I don't know why she put me on Tamox. The comparison chart here on BCO clearly shows the Tamox having 2x the SEs as a couple of the AIs.

    I wish that I could help with some advice. I am counting the minutes till I go on the AIs..just waiting for an appointment. I know they won't be easy, but it's got to be better than this.

    Thank you for sharing your symptoms. I am sure that the women here will have some good advice for you.

    Best wishes to you..


  • Vix1970
    Vix1970 Member Posts: 8
    edited January 2017
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    quick update I'm 48 hours out from taking last dose of tamoxifen and the cloud has lifted. I can think, I can concentrate, anxiety gone, depression lifted, sense of doom gone I've actually been smiling and laughing today. It was all the pills. 😊X

  • tangandchris
    tangandchris Member Posts: 934
    edited January 2017
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    YAY!!! I'm so glad Vix!


    Keep us updated, and talk to your doctor for sure. This is NOT acceptable to have to tolerate these sorts of SE's.

  • Vix1970
    Vix1970 Member Posts: 8
    edited January 2017
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    my oncologist was a little off with me when I spoke to him and basically said there was no alternative and not taking the tamoxifen would only up my chances of a reccurance by about 3% I'm not convinced of either.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited January 2017
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    Vix

    Did you wean yourself off slowly?

  • jackster51
    jackster51 Member Posts: 139
    edited January 2017
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    I had to stop Tomoxifen for all the reasons you mentioned. Really hard decision, but had to make it. All the best to you in whatever you decide in your future.

  • tangandchris
    tangandchris Member Posts: 934
    edited January 2017
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    I personally didn't wean myself off of the Tamox, I immediately stopped and within a couple of days I felt normal again. There was no weaning for me when I felt the way I did...it was too scary.

  • B1016
    B1016 Member Posts: 4
    edited January 2017
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    I started Tamoxifen on January 1. I was cautiously optimistic for 9 days and then muscle and nerve pain started that has necessitated taking tylenol (with barely any relief). Then emotions went wacky - all in a matter of hours it seemed - and I can't get it right. I had already gone through 6 weeks of Femara (I am post-menopausal) and had to stop because I couldn't handle the depression and impaired cognitive skills. I couldn't connect the dots. I'm not there yet on the Tamoxifen, but so uncomfortable and sad! Can I expect the side effects to improve? Does anyone have experience with the lower 10 mg dose? Just when I thought life and health was getting back to normal after surgery, chemo & radiation over the last year+....

  • lisey
    lisey Member Posts: 300
    edited January 2017
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    Vix, I'm sorry, but if your oncotype is a 22, then your chance of recurrence is much higher than 3% without hormone blockers. the Oncotype gives you a % of recurrance (I think a score of 22 is around 17% chance). If you don't take any blockers, then you need to double that percentage to 35% chance. Tamoxifen / AIs are really important with a higher oncotype like you have.

    FWIW, I'm on Tamoxifen, premenopausal, and have no side effects. My bet is with Farmer and you are having PTSD issues that really don't have anything to do with Tamox.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
    edited January 2017
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    Vix, I have really thought about your situation and the first time I typed a response, I erased it. First, don't be scared, you are going to be okay. Some doctors do not start their patients on Tamoxifen while they are getting radiation. Second, with an oncotype score of 22, did your MO suggest any chemo at all? Sometimes they do 4 treatments, depending on the situation. The most important part of your recovery right now is emotional stability and radiation. I had my surgery 8/30, finished rads 11/2, and am having my uterus, ovaries and tubes out on Jan 24th. I will start an AI a couple weeks later. You have to do everything humanly possible, so that you can prevent recurrence. That also includes giving up alcohol, smoking, eating properly, getting plenty of rest and exercise. You can also lower your risk by doing those things. When you start back on Tamoxifen or an AI, you can ask about a more gradual start, let's say half dose for two weeks, three quarter dose (if possible) etc. You might need an SSRI to combat the depressive episode. Some SSRI's are not compatible with Tamoxifen. Come visit me on my hormonal thread, ...... Uplifting and Positive Messages.... We have some knowledgeable women that contribute to that thread. Most importantly, you are not alone and you will get through this time. I promise.

  • Optimist52
    Optimist52 Member Posts: 144
    edited January 2017
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    Vix, having a bad reaction to Tamoxifen such as you have had is entirely legitimate. When you think about our hormones, women can have very individual responses, whether it's bad PMT for some, postnatal depression which is very hormonal driven, the contraceptive pill affects different women in different ways with some unable to tolerate it. As for the antihormonals that we are prescribed for breast cancer, there is a massive range of side effects and those who don't experience many are particularly fortunate. Sometimes side effects don't appear for several months or conversely can improve after many months. I had dreadful physical side effects on Tamoxifen (fibroids requiring surgery, severe ongoing blood loss leading to anaemia and heart palpitations) and probably should have discontinued it earlier than the two years I took it for.

    I've found letrozole to be more tolerable although I still have some side effects. If you are willing to have ovaries removed or Zoladex injections, you could try an AI.

    Lisey and Michelle in Cornland, my Oncotype DX was 22 with second diagnosis and two MOs have told me chemo wouldn't be worth the risks associated. Lisey, 22 is a low intermediate score, not a higher score. Also, you are very fortunate to not be experiencing physical or mental side effects from Tamoxifen, but this doesn't mean someone else's very severe SEs aren't caused by the drug.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
    edited January 2017
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    Vix, There are others that are on this website that have had high intermediate range per the Oncotype testing and they had additional tests Prosigna, I think. There are other studies going on that have different ranges for treatment protocols for the Oncotype test. Having read many, many studies myself, with a background in Pharmacy from the University of Arizona, I am conservative when it comes to risk tolerance. The good thing, unless otherwise stated, is that you are node negative. A higher end intermediate score combined with positive nodes is a bit more concerning and would raise your MO's red flags. If you want to learn about recurrence, just read the Stage IV and Metastatic threads where the women are truly honest about what they were asked to do, vs. what they did to stave off recurrence. Inform yourself so that you can communicate with your MO, RO, BS, and OB/GYN and ask the questions that concern you.

    P.S. Here are side effects to your anti-anxiety med: Commonly reported side effects of pregabalin include: infection, ataxia, blurred vision, constipation, diplopia, dizziness, drowsiness, fatigue, headache, peripheral edema, tremor, weight gain, visual field loss, accidental injury, and xerostomia. Other side effects include: abnormal gait, abnormality in thinking, amnesia, arthralgia, cognitive dysfunction, confusion, edema, neuropathy, sinusitis, speech disturbance, vertigo, visual disturbance, weakness, myasthenia, amblyopia, increased appetite, and twitching

    .Complete list of common:

    • Accidental injury
    • bloating or swelling of the face, arms, hands, lower legs, or feet
    • blurred vision
    • burning, tingling, numbness or pain in the hands, arms, feet, or legs
    • change in walking and balance
    • clumsiness
    • confusion
    • delusions
    • dementia
    • difficulty having a bowel movement (stool)
    • difficulty with speaking
    • double vision
    • dry mouth
    • fever
    • headache
    • hoarseness
    • increased appetite
    • lack of coordination
    • loss of memory
    • lower back or side pain
    • painful or difficult urination
    • problems with memory
    • rapid weight gain
    • seeing double
    • sensation of pins and needles
    • shakiness and unsteady walk
    • sleepiness or unusual drowsiness
    • stabbing pain
    • swelling
    • tingling of the hands or feet
    • trembling, or other problems with muscle control or coordination
    • unusual weight gain or loss
    Less common:
    • Anxiety
    • bloated or full feeling
    • burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
    • chest pain
    • cold sweats
    • coma
    • cool, pale skin
    • cough producing mucus
    • decrease or change in vision
    • depression
    • excess air or gas in the stomach or intestines
    • eye disorder
    • false or unusual sense of well-being
    • general feeling of discomfort or illness
    • increased hunger
    • joint pain
    • loss of appetite
    • loss of bladder control
    • loss of strength or energy
    • muscle aches and pains
    • muscle twitching or jerking
    • muscle weakness
    • nausea
    • nervousness
    • nightmares
    • noisy breathing
    • pain
    • passing gas
    • rhythmic movement of the muscles
    • runny nose
    • seizures
    • shivering
    • slurred speech
    • sweating
    • trouble sleeping
    • twitching
    • uncontrolled eye movements
    • vomiting


  • gardengypsy
    gardengypsy Member Posts: 499
    edited January 2017
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    That side effect list is unbelievable.

    There's got to be a better way.

    Stay strong, sisters..

  • dtad
    dtad Member Posts: 771
    edited January 2017
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    Lisey....IMO we need to be very careful about not validating SE from anti hormone treatment. How could you possibly know that Vix is suffering from PSTD and her symptoms are not from the Tamoxifen? Especially because they went away immediately after stopping the Tamoxifen. I'm happy for you and anyone else that does well on anti hormone therapy,and Im not disputing their importance. However, that does not negate those who suffer SEs on them! Please try to be more sensitive to what others are going through. We are here to support each other. Good luck to all navigating this disease.

  • pupmom
    pupmom Member Posts: 1,032
    edited January 2017
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    Lisey is correct. Why are some so threatened by reality? I have seen many early stage members here pass away, after declining hormonal treatment.

  • Noni
    Noni Member Posts: 74
    edited January 2017
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    Vix, I am very sorry to hear about your experience with tamoxifen. Kudos to you and your MO for reacting so quickly.

    I also could not tolerate tamoxifen. My MO did not believe my all over craziness and body pain were SE so he wouldn't take me off it. I struggled for six months before I finally took myself off it secretly. I didn't even tell my husband. I felt incredible relief after the first week, which is when I decided to call MO and tell him what I did and that I wasn't going to take it anymore. Oh, it was such a great feeling to be free of all that pain and madness!

    I think many doctors are reluctant to confirm just how terrible tamoxifen can be on some people. It's wonderful for most, but then there are the rest of us...

  • Noni
    Noni Member Posts: 74
    edited January 2017
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    I also want to add that I was a stage iv patient while taking tamoxifen, and I knew the importance of the drug. I took myself off the medication knowing that I was on no other form of cancer treatment and that was a huge risk.

    With that said, I still believe I made the right decision. Tamoxifen was that terrible on me.

  • Vix1970
    Vix1970 Member Posts: 8
    edited January 2017
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    being very honest I am scared as to what not taking the tamoxifen could possibly mean but in all honesty I would have no quality of life on them. I would never be able to work again in my field as it would be too risky with the memory, coordination issues, brain fog, clumsiness I would be a liability.

    To answer some of your points above. I was not offered chemo as score was under 25 my oncologists cut off point.

    He was not happy I wanted off it he was definitely annoyed I asked to see him and he also said it would not make much more difference to my long term prognosis whether I took them or not.

    He says there is nothing else I can take, anything else out there would be much worse.

    I have a bad history with any synthetic intervention with my hormones, my body cannot tolerate them the pill and contraceptive injection made me constantly sick and I bled continuously, the Merina coil caused me to hemorage 3 times and I ended up having to have a hysterectomy though I kept one ovary.

    I was on the anxiety meds for 2 months before I started the tamoxifen with no problems, I'm still on them though reducing dose this week all those side effects have gone again.

    Vix

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
    edited January 2017
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    The list of side effects that I provided were for the anti-anxiety med, not tamoxifen. Just an FYI before anyone misreads what I have written. Vix, the combination of the two meds could bring on more severe side effects, it depends on how they metabolize in your body.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited January 2017
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    Women's bodies and hormones are complicated. One person's side effects may have no connection to what another person is experiencing.

    I believe what everyone in this thread says they are experiencing. Women must listen to their bodies. Science has a long, long way to go in finding an answer that fits us all.


  • BarredOwl
    BarredOwl Member Posts: 261
    edited January 2017
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    Regarding the confusing reference above to a "high intermediate range per the Oncotype testing" in reference to a person with a Recurrence Score of 22, please note the following.

    The standard risk category ranges for the OncotypeDX test for invasive disease (in node-negative or node-positive disease) based on various validation studies in these groups, are and have always been as follows:

    Low-risk: Recurrence Score < 18 (i.e., 0 to 17)

    Intermediate-risk: Recurrence Score 18 to 30

    High-risk: Recurrence Score 31 (i.e., 31 to 100)

    For links to numerous scientific publications setting forth these standard ranges, see this post:

    https://community.breastcancer.org/forum/69/topics/840731?page=1#post_4624429

    A Recurrence Score of 22 would be in the lower half of the standard intermediate range of 18 to 30:

    18--19--20--21--22--23--24--25--26--27--28--29--30

    Secondly, it is appropriate to consider a variety of additional clinical and pathologic factors with an intermediate Recurrence Score of 18 to 30, as indicated on the Genomic Health web site (scroll down to list of factors):

    Genomic Health: http://intermediate.oncotypedx.com/en-US/Using-The-Intermediate-Recurrence-Score/Integrating-The-Intermediate-Recurrence-Score.aspx

    With regard to the potential benefit of chemotherapy, it is possible that there are differences within the intermediate range, such that chemotherapy benefit might differ by recurrence score or other factors. This is also discussed on the Genomic Health web site (scroll down):

    Genomic Health: http://intermediate.oncotypedx.com/en-US/The-Recurrence-Score-Result/How-An-Intermediate-Recurrence-Score.aspx

    For a more detailed discussion about the intermediate range, see this earlier post:

    https://community.breastcancer.org/forum/147/topics/842209?page=3#post_4768276

    In connection with the question of added chemotherapy, the intermediate range is an area where a judgment call must be made in view of all relevant factors, as well as the personal risk tolerance of the patient. While additional gene expression profile testing may be considered, such secondary testing is not always recommended and appears to be less common outside of the United States. (From her date formatting, I suspect Vix lives elsewhere.)

    It is possible that the confusion is based on certain investigational ranges being used in on-going clinical trials. In this regard, the prospective TAILORx trial in node-negative (N0) patients and the prospective RxPONDER trial in certain node-positive patients are using different investigational ranges, but they are still in progress.

    Late in 2015, some preliminary results were published from the TAILORx trial in node-negative ("N0") patients scoring 0 to 10 who received endocrine therapy alone. These results showed that the test is quite robust in this sub-set of "low risk RS" patients (N0, RS 0 to 10). However, these results (from 0 to 10 only) did not operate to change the standard ranges. This is because they do not speak to outcomes for those with other scores (11 and above). We are still awaiting TAILORx trial results in its slightly differently defined investigational "intermediate" risk (RS 11 to 25) and investigational "high" risk (RS 26 and above) groups, so the standard ranges are still in effect (<18; 18 to 30; ≥31).

    The on-going RxPONDER trial is still evaluating whether adjuvant chemotherapy is beneficial in patients with hormone receptor-positive, HER2-negative breast cancer with 1-3 positive lymph nodes and a Recurrence Score of 25 or less.

    Of course, the investigational ranges reflect considerations of the magnitude of the recurrence risk associated with particular Recurrence Scores, and patients may wish to discuss this with their MOs.

    BarredOwl

  • BarredOwl
    BarredOwl Member Posts: 261
    edited January 2017
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    Hi Vix1970:

    I am sorry you have had such a terrible experience. You mentioned that your MO "said it would not make much more difference to my long term prognosis whether I took them or not" and "not taking the tamoxifen would only up my chances of a reccurance by about 3% I'm not convinced of either."

    As you know, tamoxifen can reduce the risk of suffering a distant metastatic recurrence, as well as reduce the risk of same in-breast recurrence and contralateral recurrence. The "relative" risk reduction benefit for each is often given as roughly ~45%. Please confirm it. However, a patient's individual baseline recurrence risks (distant, same, or contralateral, after all other treatments) affect the estimated sizes of the "absolute" risk reduction benefits they may receive from tamoxifen. Patients with higher baseline risk can reap greater absolute benefit than those with lower baseline risk. Obviously, the fixed risks (or actual experience) of severe adverse side effects are also part of the risk/benefit analysis for each patient.

    Please do not hesitate to ask him to specify what type of recurrence risk he is talking about (e.g., 10-year? 5-year? distant? other?), along with an explanation of how he arrived at an estimate of a 3% increase in "risk" without tamoxifen.

    If you are node-negative (N0), then please also ask for an explanation of how that 3% estimate jives with the information about "10-year risk of distant recurrence after 5-years of tamoxifen" provided in the node-negative Oncotype report and the risk reduction benefit of tamoxifen (~45%). (Be sure to obtain a copy of your report, if you don't already have one.) If the estimates and explanations do not make sense to you, then you may wish to seek a second opinion.

    If you are unable to tolerate tamoxifen after the recommended break, and your MO still offers no alternative, please consider seeking a second opinion from another medical oncologist, if possible. (Or seek a second opinion at this time if you prefer.) In either case, you can obtain additional discussion regarding the potential benefit of tamoxifen in your case, so you can make an informed decision about what is right for you. Perhaps another MO would have different ideas of how to address specific side effects, and/or would be open to discussing the risk/benefit profiles of different (more intensive) approaches to endocrine therapy with you (e.g., ovarian suppression plus an aromatase inhibitor), and if indicated in his expert opinion and of interest to you, advocate for approval of a different approach in your specific case.

    Best,

    BarredOwl

  • Tinyfrog
    Tinyfrog Member Posts: 15
    edited January 2017
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    I am 46, pre-menopausal, and ER+ 96%, PR+, and HER2+. I am newly diagnosed, and met with the oncologist last week. Expecting to be placed on Tamoxifen after chemo and radiation, I told her that my 23andme genetic test suggested I could be a CYP2D6 slow metabolizer, meaning that the enzyme to metabolize Tamoxifen is defective, so it wouldn't work if I took it. She is sending me to their specialist, who deals with this sort of testing, to confirm that and find an alternative. I am assuming there is an alternative?