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When did your Tamoxifen side effects start?

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  • minarchist
    minarchist Member Posts: 33
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    yeh that would be nice!

  • mitziandbubba
    mitziandbubba Member Posts: 18
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    Mine started right away and lasted for the first few months - insomnia was the worst one. My belly got to be huge too almost overnight! Now I don't really feel any side effects except the hot flashes every so often and my periods are very light and further apart. One thing that did happen is that I am very acne prone and my skin is much better since I started Tamox. Not only to I breakout less, it glows!

  • tovahsmom
    tovahsmom Member Posts: 8
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    It's great reading everyone's experience with tamoxifen. I've been on it almost one year and I am hating it so much. I've gained almost 30 lbs despite going to the gym several times a week and going off sugar. I get horrible leg cramps at night and hot flashes. I am hating this drug so badly but the alternative is worse. I don't want to get cancer again.

    Does anyone know if there is anything, besides the obvious, to counteract the weight gain?

  • wallycat
    wallycat Member Posts: 1,276
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    It took about 8 months before all the side effects started. I took potassium supplements (over the counter) nightly which helped immensely with the leg craps. I took magnesium to help with the horrible constipation.

    Unfortunately, nothing I did helped with the weight gain or the hot flashes. I also had really bad pain in my achilles heels which made getting up in the morning quite painful (even long walks). AIs didn't do much better for me. Oh, tamoxifen also increased my uterine lining which initiated a biopsy; several years later, I developed polyps which had to be removed.


  • Ileepak
    Ileepak Member Posts: 21
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    TreUno my heart goes out to you ... I started Tamoxifen the beginning of May 2019 . . by September my hair was falling out in droves. I sucked up the leg cramps . . . the constipation . . . the overall feeling like crap while taking it until my hair started falling out . . . . I said that is it!!! What has upset me the most is how everyone I spoke to in Sloan Kettering down played the hair loss . . . they say hair thinning to make it sound like it is no big deal . . . . they gloss over that side effect and I am so angry about that!! Ok so . . . you go through surgery . . . radiation . . . . with chemo your hair falls out but you know it is coming back . . . . with hormonal treatment they have no answers . . . because they don't know . . . and instead of saying that they say "well most people don't lose all there hair" and my favorite "IT SHOULD grow back"!!!! I have been to every doctor you can think of and researched this to find answers. I was prescribed minoxidil by the doctor in Sloan Kettering . . . . maybe a little growth but my hair is still falling out and I stopped the tamoxifen last September. I am not going back on it until I get straight answers. I went to another dermatologist today who said that if the hair loss is hereditary "androgenetic alopecia" stopping the minoxidil will stop the hair growth but she was unsure about tamoxifen, hoping that once the trigger "tamoxifen" is gone our hair should return to normal but I have read blogs where women had been on tamoxifen for years . . . . losing their hair and hoping once they were done it would grow back to learn just the opposite and losing all of it. I had one doctor say . . . think about how long you are on it . . . it doesn't stop once you start taking it . . . my questions are "did it set into motion something that cant be stopped"? I had people saying well you are premenopausal . . . sometimes its hereditary . . . thyroid . . . . I want to scream . . . . NO . . . . none of the above . . . I have had all types of blood work and it is NOWHERE in my family history for the men or women . . . they all had full heads of hair . . . . this did not start until I took the tamoxifin . . . . I wish I had done my own research before I started it! I am looking into other holistic therapies . . . . because I don't want to feel like crap for the next 10 years and not have a hair in my head for a 50/ 50 chance of it coming back . . . I will take my chances until someone can give me some definitive answers.

  • MarieTherese
    MarieTherese Member Posts: 9
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    my side effects did not start to be really noticeable until about 18 months. I had many large ovarian cysts and had to have biopsies on my uterine lining because it had become so thick. My legs cramped up and my joints were so achey. It was rough for me, but others sail through it I guess.

    I had to stop after 3 years and am considering starting again at a lower dose.

  • 1verypainful
    1verypainful Member Posts: 2
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    I start Tamoxifen in February 2012, 2 weeks after my bilateral mastectomy. I started noticing increased edema with in 6 months and by September they diagnosed me with Lymphedema in my left arm. Why is my left arm so interesting? The lymph node was taken out of my right arm not my left so why did I have increased edema there. I also started having increased fluid in my chest. I had a double mastectomy, but I felt like I was pregnant (I had already gone through menopause and I just had a Complete hysterectomy on 12/12/12) with increased swelling in my chest and pockets of fluid. By January I had severe pain in my sternum, it was horrible deep bone crushing pain - this was one month after starting Gabapentin. Gabapentin is a red/black label drug for Tamoxifen. Being on that combination gave me Gradmal seizures and Gabapentin is used to treat seizures but it put me into serotonin syndrome. I also had muscle cramps in my calfs and between my tibia and fibula in my lower legs - theses cramps were the worst charlie horse you could ever imagine. My oncologist kept asking me if I was having hot flashes - Yep I was, but that wasn't what hurt.

    Please keep telling them everything you feel. Look up Tamoxifen on WebMD and look for side effects - highlight them on the list and write the day that you get them so you can keep track and get off the Tamoxifen when you want too. I stayed on it for 8 years and my bones are swiss cheese looking at this point - severe bone loss in all my bones. We are still trying to get the Tamoxifen out of my bones through acupuncture and electro stem- therapy by my pain physician - it's been since October 2019 so 8 months.


    Good Luck

  • misskb
    misskb Member Posts: 3
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    Hello! I just wanted to post to say that I lost a lot of hair when I started taking tamoxifen. The shedding was horrendous and it was heartbreaking. I started Rogaine and it has worked incredibly well for me. I'd really encourage you to try it if you are experiencing hair loss with tamoxifen. It does take some time to work so you need to give it 3-6 months. It was so bad, at one point I actually started wearing a hair piece. This made me feel A LOT better - I'd encourage anyone down this route too. There are some great hair solutions out there - I went with a topper, and when my hair started coming back in, extensions. I think this reduced the stress which could only help the hair situation. Yes, you have to use it (the rogaine) forever, but I figure when I come off the tamoxifen I can try weaning myself off it. Anyway, if I have to put some foam on my head at night for the rest of my life, its worth it to me.

  • Ileepak
    Ileepak Member Posts: 21
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    Dear misskb,

    Thank you so much for sharing your experience. I have an overdue appointment with my medical oncologist next week. After sucking up all the other side effects the hair loss sent me off the deep end because no one had any answers on why when or if the hair loss would stop? With the Rogaine what do you mean when you say you have to do it for life? That has been one of my many unanswered questions to the doctors "does taking tamoxifen set into motion hair loss that cannot be stopped or reversed?

  • willa216
    willa216 Member Posts: 162
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    Hi all: 

    Sorry for everything you are enduring. I've been on Tamoxifen for 3.5 years.  I have the usual suspects of side effects:  mood swings, joint pain,  leg cramps, hot flashes, occasional swelling in lower legs and hair loss.   I will say these  have really come and gone throughout the years. . So for those of you who feel at the end of your rope there is hope that some side effects will eventually subside or resolve for many months at a time and give you a bit of a break. I'm sorry it's hard.   Truthfully I'm saddest about my hair. 

    Misskb: Thanks for sharing your experience with Rogaine.   Have you had any side effects such as:   dread shed,  weight gain, dizziness and vertigo, headaches?  I don't know why I can't bring myself to use it - after going through chemo/reconstruction etc it really can't be so hard to give Rogaine a try... I'm so glad it's working for you!  

    lleepak: I'm frustrated with responses from doctors about hair loss as well.  I don't think they actually have answers or treatments (other than Rogaine).  It seems to be the least of everyone's priorities (except mine).   We are lucky to be here but we do need to feel comfortable in our skin.  I wish I had something intelligent to say that would help but I don't, just that I feel for you.  I joined a facebook hairloss group - Female Hair Thinning and Hair Loss Solutions.   I'm not sure it's been that helpful except to reinforce that Rogaine does work for a lot of people and that some people have luck when they see functional doctors or naturopaths. That's next on my list.    

    Take care everyone.

        

  • Momgr5
    Momgr5 Member Posts: 13
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    I am with you. The weight gain is horrid. Mostly my stomach area. I have never been told of any foods to eat or not to eat, but I have read weight gain is a added factor for breast cancer. Well how does that work with a drug that is causing the weight gain? The weight gain is a issue for me. I know, cancer coming back would be worst. But weight gain, causes anxiety, depression, low self esteem and the list goes on.

  • Ileepak
    Ileepak Member Posts: 21
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    Thank you Willa . . . yes, you are so right! I thing that bothers me the most ... I feel like they gloss over that side effect like it is no big deal!! And it is a big deal! I think they look at it like it is a "vanity" issue but it is so much deeper than that! Its the not knowing if or when your hair will stop falling out. At least with surgery, radiation, and chemo, you know what the outcome is. I started Rogaine last October and stopped taking the tamoxifen . . .. it has helped a little but my hair is still falling out!

    It is funny, I sucked up the other horrible side effects but this sent me off the deep end. I will be talking to my medical oncologist next week . . . I will keep you all posted. Good luck everyone.

  • flashlight
    flashlight Member Posts: 311
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    from dr.oz site:

    My Problem Is With Hair Loss Specifically

    "With hair loss, the key is to stop the shedding cycle," says Dr. Pritzker. There are ways to do this naturally by helping yourself de-stress through meditation, good sleep, exercise, and anything else that calms your mind and eases your anxiety. In more extreme cases, consider consulting with an expert via telemedicine for an oral supplement. Check your Vitamin D level.

    I know easier said then done. It's the same with hot flashes reduce your stress reduce hot flashes. How do you do this?


  • willa216
    willa216 Member Posts: 162
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    lleepak: wishing you good luck next week at the onc appt.   

    May I ask if you've had side effects with Rogaine? 

     I'm wondering if you're  planning on sticking with Rogaine for a year. I've heard it's good to give it a try for that long before deciding it's not working well.  The real reason I'm writing though is I ran across a few studies that link daily aspirin or low dose daily aspirin with decreased chance of Rogaine success.  I take low dose aspirin with tamoxifen due to potential blood clotting issues and am thinking perhaps others here do too.  (as I'm writing I'm remembering you stopped Tamoxifen, though).    To answer your q above, if you stop using Rogaine eventually the hair you've gained will be lost, that is unless you have telogen effluvium as opposed to hormone related hair loss.  

    momgr5 - I'm so sorry for your feelings of low self esteem with all the side effects of treatment and the worries about how to stay healthy.  Not sure how long you've been taking Tamoxifen but as with everything there are ups and downs. Sending good vibes to you. 

    Flashlight - thanks for sharing the info from the dr oz site.  I will say that I feel a big difference in number/severity of hot flashes and ability to sleep when I regularly do yoga and/or pilates.  Not so much just regular exercising, though.  The hair is a different story but everyone is different so it's great to try anything that makes us healthier overall while we also hope for the good hair :). Best wishes to you. 


    Love to all.  


     

  • JDB1965
    JDB1965 Member Posts: 4
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    Minarchist, I have started and stopped Tamoxifen twice. I started having hot flashes, could not sleep, brain fog and just frankly felt very down and depressed on it and those side effects started within the first week of taking it. I stopped it and was urged to start it again, which I did, repeat and I've stoped all together. Sounds like if you are not having any side effects by now you may be in the clear. I met several women doing treatment who we keep in touch and none have had any side effects other than slight sleep issues falling asleep and mild hot flashes.

  • striveforhealth
    striveforhealth Member Posts: 59
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    Here I am hitting another forum here.... SickTired

    gb2115 and deweygirl19 - I searched for leg pain, muscle, tendon, ligament issues related to Tamoxifen and found your posts.

    I started Tamoxifen mid-May with hot flashes trouble sleeping and staying asleep long enough. I'm handling this. About 3 weeks ago I started noticing knee pain and stiffness which turned into significant pain that started behind my left knee. Then I realized that my knee has become unstable...kind of feels like whatever holds it in place isn't doing it's job. I'm having trouble putting weight on it so getting up from sitting, standing and walking has been awful. I am limping around. Getting to sleep at night is an issue as any movement to get comfortable is painful.

    I've never had knee problems previously so I feel like it has to be a SE from Tamoxifen but the nurse at my MO office didn't think so. I feel constant pain in my left leg above the knee to the calf. I was so concerned that I called my MO and she ordered an ultrasound to rule out a blood clot. I had that done last week and the good news is... NO clot. I'm grateful for good news but still concerned about what's going on that is causing my pain and unstable knee. My MO appt isn't for 3 weeks but I feel like I can't wait. I'm going to call the office again tomorrow. I will ask if this could be ligament laxity. Would an MRI detect something like this?

    I'm hoping to get some clarification soon because the pain is getting horrible.

    Update on 7/23: MRI is scheduled for left knee today and ortho visit is set up for next Thursday. Pain gets worse by the day and I'm struggling to just get from one day to the next. Ugh!

  • macb04
    macb04 Member Posts: 756
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    I am one of the unlucky ones. Had a ton of side effects, in no particular order, Ovarian cysts/incontinence/vaginal atrophy/mood swings and violent rages/insomnia/dry skin and sudden menopause.

    I took tamoxifen for 9 awful months. Oh, and don't want to forget to mention the bodyaches like I was 100.

  • Blue311
    Blue311 Member Posts: 4
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    I am taking Tamoxifen for over 3 months and its hit me on my 2nd month with many side effects, I started experiencing hot flashes, trouble sleeping, hair loss (which is really getting me down), mode swings and just feeling tired at times. I used to take my pills at night and my nightmares and hot flashes were horrible, so i switched to taking the pills in the afternoon and it has helped with the nightmares and the hot flashes somewhat. I am feeling somewhat depressed and was feeling the same when i got diagnosed back in November of 2019, it might have to due to the fact that I worry because of the current situation and the medication has a side effect of depression.

    I am very happy I found this forum and happy to have a community of people who have helped feel less alone in my situation.

  • Ladyofthelake
    Ladyofthelake Member Posts: 13
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    Hi everyone. I've been taking Tamoxifen for 18 months now. I thought I was the only person suffering from an itchy scalp. I told my MO about it, she didn't think the Tamoxifen was causing it. I tried all the itchy scalp shampoos and nothing helped. Then I saw a Dermatology Nurse Practitioner who gave me a steroidal lotion to use, which helped a little, but could only use it short term. Thankfully it has improved over time, and my scalp just feels tender to the touch now. As far as the other side effects go, the hot flashes started almost immediately. The weight gain is slowly creeping upwards and lately I've noticed I'm having a lot of muscle cramps, feet, calf, ribs and back muscles. That's about all for me, so I guess I still got off fairly lightly?

  • wulfgirl4
    wulfgirl4 Member Posts: 20
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    Hi there striveforhealth

    Did you ever find out the cause of your knee pain? I've had pain in my left knee for about a month now. It swells up and aches, hurts to walk. I went to the ER, worried it was a blood clot. They did X-rays and examined it and said it wasn't a blood clot. They told me to wrap it, elevate it and ice it and if it didn't get better to come back. Well, it got better but then as soon as I walked for any distance, it flared up again. I don't remember injuring it in any way.

    After seeing your post, I'm beginning to wonder if it's a SE of Tamoxifen. I'm trying CBD balm on it now. It helps some. Next step is requesting an MRI but I'm fearful that will be a waste of time if it's all just Tamoxifen related.

  • flashlight
    flashlight Member Posts: 311
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    wulfgirl4, Just before radiation, before starting Tamoxifen, I had the same symptoms as you with pain in my left knee. I had an xray, but later learned the xray has to be taken as you stand for best results. As my knee continued to swell the Ortho doctor finally ordered a MRI. It turned out I had a meniscus tear and a fracture. A meniscus tear was ruled out by my primary. She had rotated my knee/leg and so did Ortho. I was too old to have a repair done and now I have osteoarthritis in my knee. I feel the Tamoxifen does cause some leg/ankle swelling and this bothers my knee at times. I would get the MRI. I wished they would have offered it to me at the beginning of this journey.

  • wulfgirl4
    wulfgirl4 Member Posts: 20
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    flashlight,

    Thank you! I'm making an appt this week to see someone and hopefully get an MRI. I really appreciate your insight!

  • Stronghold
    Stronghold Member Posts: 1
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    Hi, I need some direction. I am taking radiation to avoid having to use Hormonal Therapy, or so I thought. I was diagnosed with very early stage 1 IDC and stage 0 DCIS. I had a "partial mastectomy" or lumpectomy. I have a history of low progesterone. Because the tumour was both estrogen and progesterone positive, my oncologist and my naturopath recommended no longer taking the progesterone (NOT the same thing as contraceptive progestin). Anyway, for the past two months I've not ever completely quit bleeding since no longer taking the progesterone and now am having a follow up for thickened endometrial lining. From all your comments, looks like tamoxifen is definitely not what I want. Can you give some ideas?? I already was leery of any of the hormonal therapy drugs because they are endocrine disruptors and i have a wonky thyroid to begin with.

    Thank you.

  • moderators
    moderators Posts: 8,067
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    Stronghold, sorry for what you are here, but glad you found us and decide to reach out to our members. Hopefully you'll get responses here soon, but if you want, you can start your own discussion on a new topic under this same forum. It's easy to do: just click the link to the forum, select Start a New Topic, fill out the Subject and Body of the post, and click Submit. Don't forget to select the thread as a Favorite, so you can get notifications when someone responds to your post! Good luck! We look forward to hearing more from you soon!

    Warm wishes,

    The Mods

  • flashlight
    flashlight Member Posts: 311
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    Hi Stronghold, because you have a low level of progesterone it is common for you to have a thickened lining. If your Gyn diagnoses you with Endometrial Hyperplasia then you shouldn't take Tamoxifen. This is something you need to talk about with your Gyn and MO before making a decision. Good luck!

  • MsPrecious
    MsPrecious Member Posts: 16
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    Hi,

    I started tamoxifen in November 2019 and the journey hadn't been too bad. The only disturbing issue is joint click and i practically hear the clicking sound. About a month ago, I noticed that my right thumb was starting to have the click sound when I bend or straighten my thumb and if I bring my thumb close to your ears, you can hear the sound. Now my thumb hurts with the clicking sound. I don't know if to call it stiffness but it hurts even to pick up something. The pain stays the same day and night. Please has anyone experienced such with tamoxifen? I still feel the joint clicks in other joints like wrist, ankle, shoulder but no pain in any of these. I'll like to know if it's common with tamoxifen before subjecting myself to imaging.

    Thanks

  • Danforth
    Danforth Member Posts: 1
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    hi group, I am very new to this site and forum, not good at navigating yet.

    Does anyone experience strange breast pain or ache while on Tamoxifen. I’m on this drug now 6 months. i just started getting this pain in my middle back mostly towards the inner body and then into the left breast area.

    I am able to function fine. It’s not stopping me from anything but it is with me constantly for the last three days. The pain responds to Tylenol if I remember to take it. I haven’t noticed major problems with this drug other than early morning sweating that sometimes wake ps me up. I had a lumpectomy in my left breast.