Tamoxifen Blues …

About a month ago I started taking Tamoxifen. It’s the final piece of the puzzle in my quadfecta of treatment for breast cancer:
#1 Mastectomy
#2 Chemo
#3 Radiation
and finally #4 Tamoxifen. A daily dose for 10 years.

It’s an interesting medication and the doc told me to expect side effects. Hot Flashes and early menopause were the only two that she said I would have issue with although she listed a few more that happens in rare cases.

I’ve been trying to think of the Tamox as a vitamin. A vitamin that slows or stops the growth of cancer cells that are already present in the body. It helps keep the original breast cancer from coming back and helps prevent new cancer in the opposite breast. It also reduces the risk of breast cancer in women who have a high risk for this disease.

I did my research. It’s a medication I feel comfortable taking but I wasn’t expecting how severe the side effects would be.

Menopausal-Symptoms-21Within a couple hours of taking my first pill (which I took with food) I got gut-rot. It just got worse from there. Nausea all the time. Bloating. My mouth tastes like pennies. No interest in food. I’m SO thirsty and I can’t seem to get enough water into me even with drinking about 2+ liters a day.

I called and talked to the pharmacist and the nurse hotline a couple of times to talk about my side effects and they assured me that the nausea and other symptoms would pass if I could just tough it out for a few more weeks.

The other thing about Tamox … and I don’t know if this is true … but I feel like it’s snuffed out my light. I know when you go through menopause that things get emotional but this is beyond that. My anxiety has grown from a 4 to an 11. I’ve been bawling my eyes out every night for no reason. All my sassiness has been replaced with sour. It’s been rough. 🙁

When I popped into the cancer center to have my port flushed last week I bumped into one of my favourite nurses and told her all about my woes. She suggested I break my pill in half and take half in the am/pm. It helped with the emotional stuff … I didn’t feel like I was on a roller-coaster of emotions but the rest of the symptoms stayed the same. And my poor sad knees.

Well … after 4 weeks of daily Tamox … I am giving up. My knees are SO sore that I am finding it difficult to walk. I feel like I’m 90 years old.

I’m a tough chick. I take a lot of pain and suffering before I give up … but when the doctor suggested I limit my activity for a while I said “You’re joking right?”

Ummm. I need to be able to walk around the block. Or walk up a flight of stairs. I need to be able to stand to brush my god-damn teeth. Being in this kind of knee pain is not acceptable. No amount of resting or pain meds would give me relief.

So my doc is letting me go on a “medication vacation” for 30 days. She wants to see if the joint pain is from something else or from the medication. I know in my heart it’s from the meds because prior to starting them I was walking the beach every day for 45 minutes and not having any issues. I was feeling great. Sassy even.

I have an appointment with my oncologist first week in March to see how I’m doing and for us to come up with a new plan.

Any of you struggle with Tamoxifen? I’d love to hear how you managed because for the LOVE OF DOG there has to be a better way.

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45 Responses to Tamoxifen Blues …

  1. ArianeK says:

    Oh Sarah, this is so sad to read 🙁 the worst was supposed to be over! Medications never seem to be as simple as they’re supposed to be… At least not for sensitive folks. I hope they can figure something out so you don’t have to choose between life and quality of life in such a black and white fashion. <3

  2. Jenn says:

    You’ve been so very brave and honest throughout this whole process. Thank you for being so realistic and for talking about the things no one else does. I hope that you find relief soon!

  3. Michelle Brand says:

    Sarah this sucks! I don’t have cancer but am a sensitive vegan person on meds for other issues, with severe joint pain as a rare side effect that just wouldn’t go away. At some point you have to decide what you can live with and what you can’t. Just my bit of advice – have you been seeing a naturopath? I know a wonderful one in Victoria. Sometimes the right homeopathic remedy can help alleviate the side effects of the different stages of treatment without interfering with it’s effectiveness. Walks to the beach with your sweet Fergus would be a horrible thing to have to compromise… I hope knowing that so many of us send you loving and healing energy (from all over!) every time you post something. xo

  4. Lushlynnie says:

    I’m starting tamoxifen soon, dreading it.

  5. Denise O says:

    I don’t know much about this medication (other than what you have described) but you are right, there has to be a better way. To have to endure that for a month to 10 years is not really acceptable. I hope that the knee issues clear up! I know these words might not mean much but you are my vegan superstar! A proud vegan trooper! Super trooper (ala Abba)

  6. Heather says:

    Sarah –

    I have not personally taken Tamoxifen, but my grandmother did after her mastectomy, chemo and radiation. I lived with her at the time and we were very close. What you are describing is very similar to her symptoms. Instead of pain in her knees, she had it in her hips and shoulder. She couldn’t sleep because nothing could dull the pain. Her mobility was compromised, and her mood was off the chart. My grandmother was the most positive person I’ve ever known. Even through all of her treatments and her sickest days if you were to ask her how she was, her response was always, “Perfect” and with the biggest smile she could muster. She was convinced that a positive attitude is what bests cancer. While on Tamoxifen she became a dark person. One day, I didn’t fully close the front door to the house and she proceeded to grab my belongings and throw them out of the house. She then locked me out. It was as if she had no control over her emotions and actions. In a lucid moment she realized what was happening to her and told the doctor “No more!” She fought off her cancer for 22 years and never took Tamoxifen again. I have always been convinced it is an evil medicine and I am sorry you have had to experience it. Good for you for speaking up and being so in tune with your body. I’m sending you as much positive energy as I can muster…I have experienced its power!

    • Sarah says:

      That’s exactly what happened to me. I felt like someone switched off my light. 🙁

      I’m not sure what I will do when my “holiday” is over.

  7. Lynsee Bartnik says:

    I have experienced everything you have listed above. Both the emotional side effects (which I personally think are worse) and the physical ones. I was prescribed Tamoxifen about 6 months ago, ( not for breast cancer but for an existing non cancers tumor)I had to stop working at first. I was dizzy all the time, exhausted and sore. Not to mention I also had a hard time eating.Then as a 22 year old female , I experienced hot flashes for the first time. That’s was fun. I differently have days where I don’t even feel like the same person, you cry just because or you snap at the smallest things. As far as managing it goes I just take everyday one step at a time , and have a lot of support from my boyfriend and family. I wish you all the luck in the world. I’ve been watching your journey from the very beginning and although you and I are battling differently battles, your spirt and strength encourages me to fight the good fight.

    Keep it up,


    • Sarah says:

      Yes! I felt all those things. Ugh. You shouldn’t feel like that when you’re 22. That’s not fair. 🙁

      I’m glad you have so much support. 🙂

  8. Sheila says:

    I’ve been following your story and know that you are a strong, confident woman. You must continue to be in charge of your own health and listen to your body. If you feel that taking Tamoxifen has snuffed out your light, there must be a reason. I had breast cancer 13 years ago, and I know some of us are more sensitive to the effects of medication than others. It looks like you are doing the research and weighing the benefits and risks. It also sounds like your doctor is listening to you, so keep being your own advocate and you will find the solution that is right for you.

  9. Mrs. V says:

    Hi – I just read your comment saying that you dont know what to do when your ‘medication holiday’ is over….

    I am on Methotrexate for another condition (by far not as severe as yours, but I am just making the similarity along the lines of ‘medication holiday’).

    I had a huge bad reaction being on MTX and my doc put me on a med holiday for 1 month, too and for some reason, it was not as bad when I re-started after the vacation. I did not do a lot different in these 4 weeks of pause, but a little bit of getting ‘fitter’ made my body not react as strong 4 weeks later.

    • Sarah says:

      Interesting… I’ve been walking 45 minutes on the beaches it’s every day for months. Once I started the Tamox I rapidly declined. So much joint pain. 🙁

  10. Beth says:

    A friend who knows I’ve been struggling with Tamoxifen told me to check out your blog. I’ve been taking it for 14 months now, and have had some awful side effects. The most current is leg cramps in my calf so sudden and severe they’ve caused me to fall a few times. Loss of libido, extreme vaginal dryness, my hair came back very very thin, depression, and major hot flashes. (I have to take both gabapentin and effexor to manage the hot flashes, but I still have night sweats.) All of this, plus painful lymphedema in my armpit and upper arm. Not where I saw myself at not-quite-40.

    I’m glad your doctor is listening to you. My med. oncologist blows off everything I tell her, and my rad. oncologist sent me to another doctor about the leg cramps who just told me to drink gatorade. I’ve considered taking a “medication vacation,” but my tumor was 98% ER+, so I always just take that damned pill in the morning.

    Sorry for venting, it’s a relief to know I’m not alone in experiencing so many side effects. I’m glad you have a more understanding medical team. I’ve just read through your blog, as well, and want to thank you for sharing your experience. <3

    • Sarah says:

      Sending you lots of love (and cool breezes during your flashes).

      Remember that you are the captain of your ship. Tell your doctor you need more support.

      It made a big difference when I told mine I felt like I was in the weeds and needed more help.


  11. breathshare says:

    That hurt so much to read that… even just the title…i was given a 10 week program of antibiotics 4/day…after a week and a half of nausea fatigue and headaches i stopped…resumed my meditation ashtanga practice(was painful but i felt good after ) and i recovered…at least so far :)…it’s great to return to what you love..for healing
    You are a great inspiration for me and my transformation to vegan for so long

  12. Sneaky says:

    The first week I was on Tamoxifen I felt like I was back in the chemo unit getting a dose of AC. Within a couple of days things improved, but only slightly. I experienced everything and more that you described. After 2 weeks without any further improvement, my MO suggested that I was one of the few who were really sensitive to it and that we should take a break from it then re-start more gradually. I was only supposed to take a 2-week holiday but I felt so damn fantastic during my holiday that I extended it to 3-weeks. I went back on it, starting at half a pill every second day and worked my way up to full dose after about a month or two. Things were better, but not great. I switched brands from TEVA to Apo because I heard from others that fillers differ between companies and sometimes this can make a difference. The BCCA pharmacy was happy to oblige my request for a change. At first I thought it did help because I was still improving, but perhaps it was just that I was getting used to Tamoxifen in general. There are alternatives to Tamoxifen for pre-menopausal women, but it can be hard for the pharmacy to get in and the BCCA to pay for it. This said, my MO is willing to try something else for me if it is still an issue after 6 months. Why 6 months? Cuz people like you and me who report these types of side effects from Tamoxifen often get over them after 6 months. I’ve been on full dose of Tamoxifen for almost 6 months now. I swear I was getting better, then things went downhill in a big way, like bedridden kind of bad. But it turns out that my thyroid died following radiation and I was going hypothyroid so I may have just felt like crap because of that. I’m on synthroid now and feel amazingly better, but I’m definitely not 100%. I can deal with having this metallic/burned taste in my mouth (yes, it’s still with me 24/7) and I hope I get better still, but even if I don’t I’ll keep using the Tamoxifen or entertain an alternative my MO suggests. My gram didn’t take her aromatase inhibitor (kinda like tamoxifen, but for postmenopausal ladies) following her mastectomy for the exact side effects I’ve experienced with tamoxifen and, unfortunately, her breast cancer metastasized to her liver. I think of her everyday I swallow that dog awful pill. Try going back on the Tamoxifen more gradually like I did. That really did make a difference for me. And be sure to track your TSH… I’ve heard from a rather large number of women who’ve lost thyroid function following radiation. Hang in there, Sarah. We’ve gone so far, we can make it past this.

  13. Jodi Hayes says:

    I am 2.5 years into my tamoxifen treatment. Just a couple days ago I had the most painf uterine cramps ever, so I went off of them. I have a doctor’s apt in a week. I don’t know what I’m going to do.

  14. ~Sz says:

    Sarah, I’m sorry to hear that the Tamoxifen is not agreeing with you. I’ve been on it for 4 years, during which the protocol changed from 5 years to 10. Around year 3 I was thinking, I can get through two more years. I feel like if I were to stop taking Tx that it would be the equivalent of having performance-enhancing drug. Then I got confirmation that 10 years would be best for me. Blargh.

    Alas, Tx is a good drug for what it does and I’m going to keep on it for 10 years. I ache and I have menopause symptoms even though I am not yet menopausal. Effexor helps with that. I hate taking Effexor, but I have to admit that it helps. Maybe talk with your doc about the studies and protocols. I’m on a minimal dose but lately it doesn’t feel like enough and I’ll be chatting with my onc about this soon.

    There are other drugs out there, and we are all different, so there is really no need to suffer when there are options out there. I know what it’s like to be achy and unable to do what I am used to doing. I had a nutritionist who told me to push through it and that was the right advice for me. It was going to hurt either way, so I might as well try and become stronger. That worked for me but it has been a real challenge. For every “push” day I end up on the couch after in a recovery day. I managed to get a degree of fitness back though, and I’m proud of myself for that.

    There’s a balance out there. Keep on fighting. Explore options. Be well.

  15. Noodlegirl says:

    Thank you so much for posting this! Since Jan 20th, I was suddenly exhausted again, with achy knees, back pains, cramping, CRANKINESS, etc as you listed. But I had been on Tamoxifen for 30 days prior without ANY side effects (except hot flashes during night which I now manage with black cohosh), not even the first week. I thought, it just can’t be from the Tamoxifen, I’ve been on it for over a month. Then after weeks thru my chemobrain fog I remembered the Pharmacist telling me the pill looks different but it’s the same. OH! It’s a different brand! The things “they” don’t tell you. I’m back on the TEVA brand and am looking forward to saying goodbye to pyscho sally my PMS aka and the rest of the horrible side effects.

    • Sarah says:

      That’s interesting about the difference between brands…

      • Barbara Bossy says:

        Tamoxifen Apo causes me big time hot flashes, insomnia, depression, crankiness, sore bones, and unbelievable tiredness and Edema. After a mastectomy in December, in January I started tamoxifen Apo. I had all the above side effects and I was told my body would probably get used to it after a while. When it was time for a refill, my pharmacist switched me to teva. When I inquired they said it was just a generic name. The teva was much better for me. The side effects were gone. Only the edema is worse than with Teva. I just received my new refill and it is apo and after a week I am back to all the above side effects. I am going to trade the apo in for Teva. Big differences for different brands. Don’t know why. Only know how they make me feel.

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  17. Angie says:

    Maybe this might help with the hot flashes. …..

  18. Shannon says:

    Hi there. I just found your site while researching Tamoxifen. I know of two other people, thus far, who’ve had horrible reactions to Tamoxifen… constant crying, personality changes, extreme depression, raging, etc. So, don’t feel bad. It’s more common than you think. The doctor wants me to take it, but I’ve been putting it off. I’m terrified to subject my body to it. I’m researching natural healing to see what I can find. Good luck to you!

  19. Shannon says:

    And, btw, one of the women has been cancer free for seven years! She took Tamoxifen for three months and said she was done.

  20. Lisa says:

    I’ve been on Tamoxifen since late Feb 2014. After about 2 months I started having miserable hot flashes, and I was definitely more emotional (though wether that was caused by the drug or just dealing with all the chemo, surgery etc I’m not sure). I didn’t have any joint, or muscle pain at all until about 3 weeks ago. Which coincided with me stopping taking any Benedryl. I was using it probably 4x a week to help me sleep. It turns out that Benedryl inhibits the body from processing Tamoxifen into its active form, so basically, I was getting a reduced effect from the Tamoxifen. After I ended the Benedryl I began having an aching lower back and some pain in my knees. For me, a couple tylenol 2x day diminished the pain to minor discomfort. Sarah your post was quite awhile ago, so I hope you are feeling better by now!

  21. angie says:

    Really wish I would not have seen this blog..damn google! I’m starting tamoxifen tomorrow and beyond scared! Ugh!

  22. Michelle says:

    This past May I had been on Tamoxifen for 3-1/2 years and had only suffered mild side effects like hot flashes and night sweats for the first 3 months or so. Suddenly I began to have terrible knee pain. Just as many of you have said, I feel like I am in my 80s, not my 50s! Getting up out of a chair is painful, going up and down stairs is a nightmare and now even walking is becoming difficult. My general physician seems to think it is some sort of knee condition but an acupuncturist suggested that my knee pain might be related to being on Tamoxifen. The thought had crossed my mind but I hadn’t really done any research. Now online I am finding story after story of women like me feeling old and crippled before their time! I have an appt with my oncologist soon so I will be asking about my options!

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  24. sheilaM says:

    Started Tamox Dec 2014, experiencing knee pain in left knee and right hip that can be excruciating. The pain started 2 weeks after starting Tamoxifen, and I feel like oncologist and even support groups are brushing it off. After sitting or laying down on my side I cannot put any weight on my knee, the pain is so severe and for both my knee and hip, after moving the joint a while I can almost be normal but it takes some time. Appreciate you ladies speaking up, because it is so frustrating to hear “It’s just part of getting old”, I’m 46 and didn’t experience a bit of pain in my knees or hips. Before the BC I was working out regularly and studying TKD – so I just don’t buy the ‘ageing’ thing.

  25. Mandy says:

    I just started a Tamox vaca and feel great after 4 days. I’ve been on for almost 2 years and I never knew about taking breaks and how good I could feel… I don’t want to take this med anymore and I plan to tell my doctor this. Quality of life is so important. Sarah are you back on the Tamox now? Feeling ok?

  26. Jacki says:

    Been on Tamoxifen for 4 years now. Have used varying brands as local pharmacy says he can’t order in specific brand. Have had loads of issues over the years from : skin rashes, genital itching, blurred vision, muscle/ joint ache, thrush, cramp and’ flat lining'( totally unemotional generally but totally emotional when things got too much)
    Have finally found an independent pharmacy who are happy to order in specific brand for me. Have been reading many many positive reports of TEVA brand so am going to try them for the first time…… Watch this space Have to continue with Tamoxifen for another 6 years so hoping this one will suit better.

  27. Barbara Bossy says:

    Couldn’t get the teva. Low in stock in Canada. Don’t know when they will be able to get some. Must put up with apo side effects.

  28. Laurie says:

    After being on tamoxifen for a month, I have elected to take myself off of it. I am 48 years old and in the last year I’ve had a lumpectomy, mastectomy and axillary dissection, 4.5 months of chemo, 25 rounds of radiation and finally tamoxifen which was supposed to be for 5 years. Although my cancer is er/pr positive I won’t go back on this drug. The last month I have lived with debilitating depression and insomnia, which I’ve never suffered from before, I honestly thought I was losing my mind. I was prescribed Effexor to deal with the night sweats and insomnia, and after 2 days stopped taking this as well as I hated how “disconnected” it made me feel. There is something wrong that you have to be prescribed antidepressants to manage tamoxifen side effects. I’m attaching a very provocative article which makes me think tamoxifen is not the “silver bullet” it’s touted to be. I have made an appointment with a naturopath and will manage my health on a holistic level going forward. The irony is that before breast cancer I was a healthy, active, non-smoker who consumes wine only socially. Who knows why I got cancer? I do know though that there has to be quality of life and tamoxifen is only compromising that.

  29. Anita Rollins says:

    I was on tnis toxic drug for eighteen months. I stopped taking it in october….it caused me to gain 30 pkunds…its twoxic to the liver…can cause ovarian cancer…damages your joints…categoriesses lymphedema…causes inflamation….I take alternatives suppements….ground flax seeds are just as effective and I take sea cucumber that s cancer cells naturally as well as chemo…. it takes
    sux months for the drug to wear off. im losing my weight bit still hurt but nothing lime before….I will mever go nack on that drug….plus tamoxifen damages the brain….good luck to all who is tiughing it ojt…I couldnt…god bess

  30. Belle says:

    Sarah try vitamin D3 without it the pain in my hands is so bad I can’t hold a pen 2x high strength tabs every morning and I’m back to crafts and no pain, I too am vegan. Keep it together, stay strong and be kind to yourself
    Feel well soon

  31. gone2thedogs says:

    I had a unilateral mastectomy in March 2016 for Stage I, grade 2 breast cancer. Lymph nodes were clear, MRI showed other breast and liver to be clear. No chemo, no radiation, as the three tumors were removed with the breast. Oncotype “0,” ER+ PR+ HER2-. I was prescribed Tamoxifen by oncologist and asked to “give it a try” over my very strong concerns. A family member had been on it for ten years and has always emphatically wished she had listened to her gut and not taken it. I lasted four months and then stopped taking it: severe hot flashes 20x per day, sleeplessness at night for hours and hours on end, urethritis that felt like someone was jamming a catheter into my bladder, bladder infections, eye infections, suicidal thoughts daily, agitation, morning time confusion and difficulty retrieving words and ideas, loss of libido, joint pain. I am comfortable with my decision and grow more assured of it every day. I will not be threatened by fear. My calendar is marked for February 2021, and I will look back on the intervening years at that point. If a recurrence comes, I will cross that bridge when I come to it, and I will decline hormone blocking meds again. At 60 years old, the next ten years of my life are much more important to me than living to 80 or 83.5. As for people who ask on these boards, “What should I do?” you have to do what you can comfortably live with. For some, that will mean taking the meds to stave off fear about recurrence. For others, it will mean not taking the meds and feeling peace with that decision.

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