Tamoxifen

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  • meschellejensen
    meschellejensen Member Posts: 117
    HapB

    You have no idea how good it is to hear that you understand the decision!  On another website that I go to sometimes there are people who take it as a personal insult if you are making a different choice regarding anti-hormonals than they are making! 

  • Apaugh
    Apaugh Member Posts: 850 Member

    HapB

    You have no idea how good it is to hear that you understand the decision!  On another website that I go to sometimes there are people who take it as a personal insult if you are making a different choice regarding anti-hormonals than they are making! 

    Oh my

    Wow, so sad someone would be so harsh about your personal choice.  I am sorry you had to endure that.  

    Hugs,

    Annie

  • meschellejensen
    meschellejensen Member Posts: 117
    edited October 2017 #24
    Thank You Annie!

    Your posts always help so much!!

  • Fishhead
    Fishhead Member Posts: 1
    edited October 2018 #25

    I guess I am a bad patient

    I did all but 4 of chemo. Now I've quit radiation. I am not a favorite of my Dr's. After treatment 21, I burned so badly I am still sufferring. If I had to choose between that and dying, I will pick dying.  I have decided I will not be taking any estrogen inhibitors. My body has had enough. I have lived a pretty good life and now I will be 65. If the cancer comes back, I will choose to do very little..  Hospice and lots of drugs. The fun kind. a little joke. You couldn't pay me a million dollars to do chemo again. I realize that some people will do anything to live, but I am not that person. It's not that I want to die, it's just that I want to live life my way. Dr's just don't get it. I told all of them from the beginning that I did not fear death and that I will not do just anything to live. Because of the chemo, I will have feet trouble for rest of my life and it's annoying and painful. Plus all the negative things that chemo causes for life. And who knows if the cancer comes back, that it's not from chemo or radiation. They would never tell you if it was. I find that during this journey that Dr's lie all the time. Not lie directly, but lie of ommision. I find that reprehensible. If you want a pat on back and for someone to tell you daisies and butterflies, then cancer is not for you. Unless you know the whole truth, you can't make informed decisions. I know the Dr will probably throw his hands up and not want me around anymore, but i think I should be able to make my own decisions. I know women who have cried when told they have to take those awful drugs for 5 more yrs. My opinion, is they don't really know for sure. It's all a big guess and us women are the guinea pigs. Well I'm not going to be one. If I have to go to all this trouble so I can come here and complain about drug side effects, then that drug is not for me. I admire all of you who have chosen to go the distance, but I don't want to live a life of side effects. I will probably take the script, then throw it away. I can't deal with these Dr's anymore. I know that if Cancer comes back, I won't be going back to the place I'm going now. The care I got there was third rate, and I'm a nurse so I know what good care is. So I can't say thank you to them for saving my life for the time being. It was me, who saved my own life. I had to fight them every step of the way.. They don't tell you that for women over 60. regular chemo can be fatal. I almost found that out, but I stopped treatment before I died from it. I wish all of you good luck in what you choose. I am at peace with the path I choose. No one lives forever anyway. I choose to live rest of my life, free of drug side effects which make life harder to live. I noticed all of you counting down to the day you can stop taking it. I don't want to be that person. I'm sure I am not alone in my chosen path. These decisions are not easy to make. 

    Breast cancer and drugd

    I've just joined this community and your post could have been written by me! I was 52 when diagnosed.  I had a lumpectomy, radiation, and was started on Tamoxifen.  The severe sweating started soon  after starting the Tamoxifen. After taking this drug for one year I stopped taking it.  I told my doc I was done with all the sweating. I was working as an RN at the time. My sweating episodes were so random and frequent. I was so embarrassed trying take care of a patient and start dripping sweat. Unfortunately  the sweating continued.  I don't call them hot flashes because I'm fine one minute and dripping sweat the next. 

    I too will never take another cancer drug.  I am now 66 and still have these awful sweating episodes.  I will live my life to the fullest as long as I can. If I have a reoccurrence I don't want to live my last days miserably on chemo drugs.  

  • Young123
    Young123 Member Posts: 1
    Tamoxifen

    I’m currently doing Taxol/Herceptin on my 8th of 12. I’m am ER+PR+Her2 positive. After chemo 6 weeks of radiation and then Tamoxifen. I dont want to do Tamoxifen but I’m torn. I’m only 43 so I’m not sure what I’m going to decide. I have an appt with a holistic dr. just to get a second opinion. Has anyone decided to go natural? Or any opinions on Tamoxifen. I was also Stage 1 and had a lumpectomy per my surgeon they got all the cancer it was small.

  • kcasey44
    kcasey44 Member Posts: 9
    Speak to your doc

    If you are torn about the Tamoxifen speak to your doctor. You can ask him/her how Estrogen receptive your cancer is/was. I had an unusual vaginal discharge while on Tamoxifen which was causing concerns. I asked my doctor how ER+ my tumor was and when he looked it up he saw that it was barely over the line to be ER+. I decided to have a complete hysterectomy and therefore I didn't need Tamoxifen. However, if your cancer is very ER+ then you may want to take the Tamoxifen to reduce your chances of a recurrence. If your doctor is not receptive to discussing this with you then you can always get a second opinion. It is up to you ultimately, but you need as much information as possible.  It was a tough decision for me to have yet another surgery instead of taking a pill, but after discussing it with my doctor we both felt good about my decision. If you can have a good talk with your doctor on the pros, cons and alternatives it's easier to make the multitude of treatment decisions. Hang in there I know it can be overwhelming.

  • hmangan368
    hmangan368 Member Posts: 1
    side effects of tamoxfin

    I have been on Tamoxfin for almost 3 months. The side effects are hard including nausea, headaches , and mood changes. I talked to my onc and she suggested I try to get off for 1 month and then reintroduce every other day to build up to every day. I so would like to do this but I just dont feel its fair to my family to risk not taking it. Has anyone tried any remedies that have helped? Has anyone tried zofran for the nausea or anti depressents for the mode-I am wondering if it is better to try to treat the symptoms verses stopping the medication for a month.

    Thanks Heather

  • Apaugh
    Apaugh Member Posts: 850 Member
    In my experience

    you could take teh zofran for the nausea but think about NOT doing the meds for the drepression.  It is just something else to wheen off of and it is a B to do so.

    Hugs.

    Annie

  • Sam03
    Sam03 Member Posts: 3
    Young123 said:

    Tamoxifen

    I’m currently doing Taxol/Herceptin on my 8th of 12. I’m am ER+PR+Her2 positive. After chemo 6 weeks of radiation and then Tamoxifen. I dont want to do Tamoxifen but I’m torn. I’m only 43 so I’m not sure what I’m going to decide. I have an appt with a holistic dr. just to get a second opinion. Has anyone decided to go natural? Or any opinions on Tamoxifen. I was also Stage 1 and had a lumpectomy per my surgeon they got all the cancer it was small.

    I'm in the same boat as you.

    I'm in the same boat as you. 47 at dx and txment, 48 now. Finished same modalities as you and now on Tamoxifen. I had some difficulty with fatigue during months 2 and 3 which is slowly getting better. Hot flashes have started, they are interesting to say the least. 

    I almost quit the tamoxifen at month 3 due to fatigue, but because it reduces my risk of recurrance by 50% I chose to give it 6 months more.  It is getting better. My Onc and I decided to take 2wks off the tamoxifen and then restart at 10mg for 2wks and then back up to 20mg.

    It is going to be all about the risk and what you are willing/able to put up with. 

    Good Luck my Dear, this is an interesint path we are on

  • Sam03
    Sam03 Member Posts: 3
    Young123 said:

    Tamoxifen

    I’m currently doing Taxol/Herceptin on my 8th of 12. I’m am ER+PR+Her2 positive. After chemo 6 weeks of radiation and then Tamoxifen. I dont want to do Tamoxifen but I’m torn. I’m only 43 so I’m not sure what I’m going to decide. I have an appt with a holistic dr. just to get a second opinion. Has anyone decided to go natural? Or any opinions on Tamoxifen. I was also Stage 1 and had a lumpectomy per my surgeon they got all the cancer it was small.

    Tamox and the Sun!!!

    Oh and watch the sun exposure while on the Tamoxifen, it's not a prominent warning, and it should be! I've never burned like I did on vacation 2wks ago, absolutely terrible despite 50 spf and mineral application!!

  • Karinmichelle6
    Karinmichelle6 Member Posts: 2
    edited December 2019 #32
    Fishhead said:

    Breast cancer and drugd

    I've just joined this community and your post could have been written by me! I was 52 when diagnosed.  I had a lumpectomy, radiation, and was started on Tamoxifen.  The severe sweating started soon  after starting the Tamoxifen. After taking this drug for one year I stopped taking it.  I told my doc I was done with all the sweating. I was working as an RN at the time. My sweating episodes were so random and frequent. I was so embarrassed trying take care of a patient and start dripping sweat. Unfortunately  the sweating continued.  I don't call them hot flashes because I'm fine one minute and dripping sweat the next. 

    I too will never take another cancer drug.  I am now 66 and still have these awful sweating episodes.  I will live my life to the fullest as long as I can. If I have a reoccurrence I don't want to live my last days miserably on chemo drugs.  

    Sweating

    I have MBC with bone, liver and small intestine tumors. I have refused all chemo, drugs, etc. (I agreed to take an AI but have a hard time even doing that!) Upon dx for MBC, I was very very ill and could not even walk. Then, I started taking high doses of Vitamin C, aloe arborescens and became vegan. I did this to slow down the cancer and preserve my quality of life. (I already had the girl’s removed in 2010.) When I started getting better and feeling better, it was after sweating buckets. I am a TCM Doctor so I understand that the body is only removing toxins. Now, I am doing  pretty well!  On painful days, I up my vitamin C and turn on my heating pad to sweat at night. I just purchased a jacuzzi so I am hoping to alleviate any stiffness too. My point is....This is your life! Live it as YOU see fit! Too many times we end up being medical experiments!

  • JayDeee
    JayDeee Member Posts: 5

    How they are different

    This is what I was told at the time of my switch from AI to Tamoxifen.  I was told the AIs block the production of aromatase which produced by the adrenal glands and is converted by your body to estradiol and acts like estrogen in POST menopausal women.  Since POST menopausal women's ovaries are done, you have NO real estrogen but ER+ breast cancer still likes what they get from estradiol. Take an AI and you're not supposed to be making any estrogen at all so there is none to feed those ER+ cancer cells.   Bone loss primarily occurs from lack of estrogen which is why as women age, they tend to develop osteoporosis.  Tamoxifen on the other hand acts to block any estrogen receptors on nasty cancer cells keeping them from getting any estrogen.  PRE menopausal ovaries are struggling to still produce estrogen and so you still make it and it needs to be kept away from any receptors, so any cells will die off.  Your uterus and your bones seem to think Tamoxifen is estrogen and they like it.  Gobble gobble.  This is why uterine cancer is a common side effect of Tamoxifen, but osteoporosis usually isn't.  I can be, but it usually isn't.  The different AIs can have different side effects and "they" seem to think they are "better" than Tamoxifen in POST menopausal women, but Tamoxifen is still a very good drug.  As I said, my bone density actually improved on Tamoxifen.  We'll see how things are next year, tho. . .   

    I know this is what I remember, but it's been many years, so who knows?

    Suzanne

    AI to Tamoxifen

    I'm approaching the two your mark on anestrozol i'm done as soon as my pills are done....  had a double mastec no nodes involved but my DX score is very high....  I guess my doc is worried because the tumor grew really fast.....  does that mean all my tumor from here on will be the same?  Im done with the pain in my hands, i have not slept in two years....  i'm going to roll the dice and get on with life.  Also my brain is not working well on this stuff....  my docs plan was for 5 years, she said i wouldn't have to take it for 10 well i think 2 will be enough.

  • JayDeee
    JayDeee Member Posts: 5
    HapB said:

    AI's

    J and Mesch, I understand your decisions. I had a horrible reaction to the chemo and had to stop because I live alone and could not function. I have had chemo before for another cancer and did ok with it. I am on Hercpetin infusions every 3 weeks for one year because I am triple positive. I had no issue with radiation at all. I think following the doctor's instructions not to use anything on the skin at all made the difference. It has been a month and nobody would ever know which breast was radiated. As far as the AI's go, I decided to give them a try. I am on Letrozole and so far, no issues. Time will tell. I am also 65, but I had a child when I was 40 and I am not ready to leave her quite yet. I am. Doing everything I can to make necessary changes to my diet and lifestyle. Eliminating stress is my biggest challenge. Eating a plant based diet has become pleasurable. I like learning new things and about how diet and lifestyle effects our bodies. So, we all do what we can. 

    plant base

    how did you get started going to a plant based diet, i'm a meat eater i just don't think i could give it up....