Scared of Tamoxifen

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gretchy
gretchy Member Posts: 106
edited September 2020 in Hormonal Therapy - Before, During, and After

so I had BC in 2014 and we thought by taking arimedex faithfully which I did it would prevent reoccurence but here I am in 2019 with another breast cancer in the same breast. I'm post menopausal since total hysterectomy in2015 and had no side effects of arimedex but maybe no benefits either. I found a new oncologist and she says one month after my double masectomy she would like me on Tamoxifan. Does anyone here tolerate Tamoxifan ok? I have depression pretty well managed with meds and I don't want to lose my hair. Are there any other options out there besides tamoxifan and arimedex with less side effects but still helpful in preventing cancer reoccurence? Thanks for letting me vent.

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  • Lucy55
    Lucy55 Member Posts: 3,044
    edited September 2019

    Gretchy ...I've been on tamoxifen for 5 years now ..and have no side effects at all .Don't be worried to give it a chance ..lots of people tolerate it very well ..


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  • Brilee76
    Brilee76 Member Posts: 227
    edited September 2019

    I took Tamoxifen for a couple of months before my mastectomies. I didn't have any side effects but 2 months isn't a very long time. I'm pre-menopausal and a complete hysterectomy is part of my treatment plan due to HR+ status of my tumor. I'm currently on Lupron shots until I can have my hysterectomy. My oncologist prefers Letrozole over Tamoxifen and will be putting me on Letrozole once my chemotherapy is over and my labs show my estrogen levels are low enough to be considered post menopausal.

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited September 2019

    I took Tamoxifen before I switched to Arimidex. I had no SEs from Tamoxifen. I do have SEs from Arimidex, but they have improved over time. Give Tamoxifen a try, you can always stop if there are intolerable SEs.

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  • godisone
    godisone Member Posts: 100
    edited September 2019

    Don't be scared of Tamoxifen. A lot of people including me have been using it since many years and it is safe drug. You can know more about this drug and the related side effects and sentiments more on the following links

    https://www.voiceofcancerpatients.com/liver-cancer/drugs/list

    https://www.voiceofcancerpatients.com/all-cancers/drug/tamoxifen

    let me make your work simple and provide you a list of side effects

    1. Temperature

    -Hot flashes

    -Night sweats

    - Excessive sweating

    - Shaking chills

    2. Fatigue

    - Ill feeling

    -Tiredness

    - Dizziness

    - Debility

    3. Pains and aches

    - Bodyache

    -Headache

    - Bone pain

    - Migraine

    4. Weight Problem

    - Weight gain, weight loss or weight fluctuations

    5. Bone & Joint Problem

    - Joint Pain

    - Arthritis

    - Bone loss

    6. Gynecological problems

    - Decreased blood flow, irregular periods, vaginal discharge, vaginal dryness, endometrosis etc

    7. Abdominal Problems

    - Nausea, Bloating, Constipation, Gastric discomfort.

    I hope I could help :-)

    Keep us posted about your decision.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited September 2019

    I have side effects from tamoxifen but not bad enough that it's worth it to stop taking it. It's better than more cancer. You gotta do what you gotta do. Incidentally, the side effects didn't really set in until a year or so. So even if you do get side effects, it might take awhile, meaning you could get some benefit without issue for awhile. And you can always stop taking it.

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  • gretchy
    gretchy Member Posts: 106
    edited September 2019

    sjacobs 146 Thank you for sharing your experience with Tamoxifan. Those are helpful points to think about.

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

    Looking at that list of side effects, keep in mind that not everyone gets side effects, some get a few, and most of those are manageable. If you're worried about hair loss, start taking biotin. My hair had been thinning for several years (before breast cancer, probably from my 2008 hysterectomy), but biotin has helped and I haven't noticed any problem from Tamoxifen in the ten months I've been on it. My other main issue was random, painful cramps, mostly in my legs but also scattered other places. CoQ10 seems to have pretty much taken care of that.

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  • gretchy
    gretchy Member Posts: 106
    edited September 2019

    wow Godisone this is super helpful. Yes I will circle back and update you all.

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  • Lucy55
    Lucy55 Member Posts: 3,044
    edited September 2019

    Gretchy...don't be scared when you look at the list of side effects .If you google any drug there's a list ...I was scared to start taking it in the beginning because I do have trouble taking lots of medications ..but I honestly have no side effects at all with Tamoxifen ..so give it a go ..and you may be pleasantly surprised.


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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited September 2019

    Gretchy - Complete understand your fear. I was scared too. There are many, many, many women that take Tamoxifen with little to no SEs at all. The majority that do experience SE's say they are still manageable, in their opinion, or so I understand from having spent hours reading up on Tamoxifen here and elsewhere.

    Here is a thread that may help you read about those that feel ok or better on Tamoxifen:

    "Has Anyone Felt Better On Tamoxifen?"

    I turned out to be one that unfortunately could not tolerate even 5mg. I think the best thing you can do for yourself is ask questions of those that have taken Tamoxifen, research it, ask more questions of your doctor if you need to, and in the end if you feel comfortable then give it a try.

    If you decide not to, that's a personal choice we all have to make.

    From my research I know that there are some studies beginning to show positive impacts in preventing recurrence, such as supplements like DIM and IC3 and Turkey Tail mushrooms. You can find info about those in the Alternative Therapy forums. I have asked my MO about DIM and Turkey Tail and they were familiar with it and agreed that it wouldn't harm me and agreed that those show promise. You can read about DIM on a thread here: "Does DIM really work?"

    Hope something here helps. Hang in there. This journey is challenging but you are never alone. :)

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  • ComputerGal
    ComputerGal Member Posts: 5
    edited October 2019

    Gretchy, I've been on Tamoxifen since 2016 when Arimidex was intolerable for me. My oncologist said I should be on this for 5-10 years, but I've had it with this med. When I came out of chemo and radiation, it was a long haul back to my former self. Weeks went by, & slowly but surely my hair started growing back, & I began to feel more like me again. I tried Arimidex, but the side effects of bone & muscle pain was awful, so I was put on Tamoxifen after trying several other meds. Sure there were some hot flashes & night sweats, but they didn't last long. What the bigger problem has been & worse for me is the loss of head hair, eye lashes, and eyebrows, & my nails look as bad as the chemotherapy had made them look. I've lost about half the hair I normally had. I thought at first it was nutritional, so I started supplementing with biotin, & everything I could think of for hair skin and nails. Nope. It was a dear friend who had breast cancer and had been put on Tamoxifen who told me just 2 weeks ago, it was probably the Tamoxifen doing it to me. Because it happened to her too. So she stopped taking it. I went & looked at some pictures of me after the chemo and radiation when my hair was growing back, & I had all my eyebrows then. The thing is, I want to stop taking this stuff, but I had a really bad cancer, & I sure don't want to get it back. With Tamoxifen, I have about 92-95% 10 year survival rate, & I'm not sure what that is if I decide to play Russian Roulette.

    I'm not telling you this to scare you or put you off. I guess I would say everyone is different. What I am saying is, I'm hypersensitive to everything (I had major SE to the chemo) so you have to do what is right for you. I found out there are many different medicines that can be given depending on what's right for you. I tried four different medications before settling on Tamoxifen, & when I see my oncologist next time we are going to chat about other options.

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  • LJDH0709
    LJDH0709 Member Posts: 28
    edited January 2020

    gb2115


    Thanks for the information regarding side effects I had none until 1 1/2 years.  

    It was a breeze during that time. Now its a little more difficult but trying to keep going.  In 4 months it will be two years only 3 more to go!

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  • gb2115
    gb2115 Member Posts: 1,894
    edited January 2020

    LJD, we need to just keep plugging along! I'm starting to wonder if my period is going to come back. I'm in the longest between period stretch thus far, in 3 years of tamoxifen. MO said it could still disappear. Oh well, what can you do?

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  • LJDH0709
    LJDH0709 Member Posts: 28
    edited January 2020

    gb2115


    Yes you are right we have to keep plugging along!

    3 years for you already!!! Good for you!!!

    and yes,you are right, there are somethings about this process that we just have to say "what can you do" accept the change and

    keep going forward.

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  • Tiny2261
    Tiny2261 Member Posts: 2
    edited September 2020

    My doc took me off tamoxifren and put me on Anatrozole because of a controversy about tamoxifren.

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  • adina65
    adina65 Member Posts: 24
    edited September 2020

    I looked at your bio. and I didn't understand if you just had radiation in right breast or did you get a total mastectomy in 2014? Ive been on Letrazole, Exemestane and Tamoxifen. I was supposed to get off totally last month and my oncologist wants me on Tamoxifen for another 4 years. Because of the night sweats and leg cramps I said no and I've been off for about a month. Of course, I'm always got that fear in the back of my brain," am I safe", but I needed a better quality of life in my older years. Don't know if this helps, but good luck in whatever you choose to do.

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