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Bottle o Tamoxifen

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Comments

  • TaRenee
    TaRenee Member Posts: 406
    edited October 2017

    Hi all... I started my Tamoxifen on 9/26. So far the worst side effect I have is night sweats. Ughhh (if that’s all I get... I’m not complaining!) what I wanted to chime in on is my MO told me to take 2 Tums nightly for the calcium to help with bone density. My mom and my grandmother had osteoporosis so we are trying to keep that off my list. He said Tums has the calcium and is better than most otc calcium pills. I’ve discovered that the Tums Smoothie is not terrible and I can tolerate it. Hope that helps

  • Tpralph
    Tpralph Member Posts: 281
    edited October 2017

    Cctoo - 81 and taking Tamoxifen? I would have thought they would have put you on letrozole or some other Al inhibitor.

  • ml1209
    ml1209 Member Posts: 153
    edited October 2017

    Hi all - I started Tamoxifen back in August. Since then have noticed I am having headaches. Anyone else have that as a side effect? Really that an not being able to sleep are my biggest conplaints.

    Wish none of us had to be here - Prayers and hugs all around ♡

  • lala1
    lala1 Member Posts: 974
    edited October 2017

    ML1209---I didn't have headaches but did have dizziness. I was doing ok on Tamoxifen for the first year with just joint pain which I was able to control with turmeric. But a year into it, I got dizziness, nausea, allergies, bloating, gas, hot flashes and a whole host of other complaints. I thought I was falling apart! It took about a year and a half before I got it all under control. Not really sure how i did but i do credit a really really good probiotic with solving a lot of my issues. I think mostly it's just how long it takes our body to adjust to this medicine onslaught. My suggestion is to keep a daily diary of complaints and let your doctor know. As to headaches, I've been told that is a common complaint with Tamoxifen. I think the severity of them is what should be discussed with your doctor.

  • tinker-bell
    tinker-bell Member Posts: 40
    edited October 2017

    Hi everyone

    I’m struggling with weight issues - I lost a bit of weight after diagnosis as I was so anxious but once I recovered from chemo and radiotherapy I have gained a bit - 8 lbs.

    I know it’s important to keep weight down and I’ve cut down on red meat and am eating mainly fish and chicken. I’m on anti anxiety medication and tamoxifen (first month). Exercise wise I am doing 2 hours of dance, 1 hour yoga and 1 hour strength training a week plus a daily dog walk.

    Has anyone got tips for me? I think I am comfort eating a bit, I crave carbs when I’m stressed

  • molliefish
    molliefish Member Posts: 650
    edited October 2017
    Tink* I have had really good results cutting out grains. Processed, refined, whole grains. I started out thinking I could do a paleo challenge but decided I couldn't do all that at one time. I ended up giving up grains since April and I'm pretty pleased. The next step for me would be refined sugar. It shouldn't be too hard since I rarely eat anything with sugar or add sugar to any recipe, food or drink. But I just have to take that step. I've returned to my pre cancer weight by dropping the grains and have lost the bloated belly that started after tamox. I work out but not as regularly as I should. Take good care. mF
  • molliefish
    molliefish Member Posts: 650
    edited October 2017
    Ladies, I went for my biopsy fr the endometrial thickening about 4 weeks ago. Got the results last week but it seems that the sample was too small as the gyne wanted to repeat the biopsy today. So went today prepared for the discomfort yet she now wants me to take this pill (well not take it but insert it) to meek the cervix soft to permit deeper access. Apparently she didn't get far enough into the uterus and the last sample was considered cervical rather than endometrial. So back I go next week for another appointment. I guess I'm a little peeved because every time I have an appointment with her it costs me a day at the office. And then, if it is hyperplasia but benign, we have to decide what to do about it. D&C? Watch and wait?..... What a pain.......but then again.. Clearly the tamox is having the desired effect in my body. Damned if you do,damned if you don't I'd say.
  • lala1
    lala1 Member Posts: 974
    edited October 2017

    Question for all....So I've been on Tamoxifen for almost 5 years. In the beginning I had the usual joint and muscle pains which I use magnesium and turmeric for with great success. About 4 or 5 months ago I started getting pain in my shoulder, almost like a rotator cuff injury which would be worse after yoga or weights. It would also bother me at night when I would roll over. So I cut back on those exercises and it got better. Then I spent the summer doing a lot of swimming and it slowly got worse. Now that summer is over, I decided to just walk/jog for a while. This has helped but it's still not gone. And in the meantime, I now have a new pain in a knee!! Maybe from too much walking?! I'm just wondering if others have had these kinds of injuries while on Tamoxifen? I know it sometimes causes my muscles to ache but these "injuries" are new to me. Should I just keep minimizing my workouts? Maybe find a doctor (who I'm sure will want to do an MRI or something) and see what they say? Of course, my mind wants to go to dark places about this but then I remind myself that sometimes nothing hurts for a day or two and it's not terrible pain, just annoying pain. Anyway, Tamoxifen known to cause these types of injuries?

  • Andraxo
    Andraxo Member Posts: 168
    edited October 2017

    lala1 - I don't think tamoxifen causes these musculoskeletal problems, but I think it affects how well we heal from them. I am a PT, been on tamoxifen almost 1.5 years, and almost 50. Age also factors in - It is easier to get tendonitis now (takes much less trauma/stress to trigger) and harder to get rid of it, even harder on tamoxifen. I'd rather go through more chemo than have some of these injuries that don't seem to heal on tamoxfien. That says a lot. At least during chemo I could actually run 6 miles every other day and up to 12 on weekends, and do other vigorous exercise on the other days - I was super fit though it all. I've been a runner for over 30 years (also bike, hike, snowboard etc) and had many injuries over the years. None have sidelined me like I am right now and I think Tamoxifen is to blame for not recovering well.

    - xo

  • tinker-bell
    tinker-bell Member Posts: 40
    edited October 2017

    Hi Molliefish thanks for that! Grains including wholemeal ones - and bread as well? Does that include pasta and rice too? Did it make cooking hard work or was it OK?

  • Goofycat
    Goofycat Member Posts: 9
    edited October 2017

    I started taking tamoxifen on October 11 and the main side effect I have had is nausea. Have any of you had this issue and what do you do?

    Anyone change generic brands?

  • trvler
    trvler Member Posts: 931
    edited October 2017

    I have an issue with my rotator cuff. I think it is a combination of A) scoliosis B)mastectomy/recon and 2 lymph nodes removed in my armpit (scar tissue) and c) tamoxifen. I think tamoxifen caused cramps in my upper arms that cause me to work out improperly with weights. My back has a big knot in it. I have been going to PT for 2 weeks now but she says if things don't improve, she is going to send me to a shoulder doctor.

  • molliefish
    molliefish Member Posts: 650
    edited October 2017

    @tink Yes all grains. Whole grains, refined, pasta, bread and rice. it does make cooking a bit of an adventure some times. And I do get mad cravings now and then. I will substitute potatoes for a lot of my starches. It helps that I love sweet potatoes. So grilled, fried, baked, shredded... You can make lots of things with them. And I eat lots of nuts, bake with almond flour, coconut flour, coconut oil, and I use a lot of fresh fruit and yoghurt. You don't have to do it cold turkey either. You could start with bread,cookies,cereal, cakes, small steps . All the best. mF

  • lala1
    lala1 Member Posts: 974
    edited October 2017

    Andraxo--Thanks for that. I have also been told by one of my doctors that one school of thought is that Tamoxifen may not CAUSE some issues but my EXACERBATE them so that would dovetail with what you are saying. I've only started working out since my diagnosis 5 years ago but I'm pretty committed to it. I regularly do 6 days a week and include the treadmill, yoga and weights. I've been thinking that I was working out wrong like Trvler said. Last year I was getting a massage every couple of months and the guy commented on how he hadn't ever seen someone with such knots in their back. He was a big fellow and it took a lot for him to "unkink" me sometimes. I also think that's another "gift" from BC :( Anyway, thanks for the advice. I think I'll book an appointment with a shoulder doctor and see if I can at least get some PT sessions through my insurance. That should help.

    Also to Goofycat--About a year into Tamoxifen I developed nausea and dizziness. It took me another year to work through it but I feel like probiotics were what helped me. I made sure I bought a good one that was kept refrigerated and had multiple strains. The one that worked the best was Primadolphius Optima in the yellow box. I buy it from my local Vitamin Shoppe and put it in a cooler till I get home so I can make sure the bacteria is still alive. Hope that helps.

  • lala1
    lala1 Member Posts: 974
    edited October 2017

    Well my BCI test came back high risk recurrence but low benefit with continuing hormonals. My MO seems to not be worried as he feels my number, although in the high risk category, is on the low end of high risk. He's suggesting no more Tamoxifen come Feb when I hit 5 years. I'm a little freaked out about going off. I do pretty good on it so now I'm wondering if it even has been giving me benefit. My MO put it this way....my recurrence risk is 7.5%. If I continue Tamoxifen I MAY get a 1% reduction (due to margin of error) to 6.5%. He says take that same 7.5% and throw in the fact that I exercise daily and my risk goes to about 4.5%. He said if I lost the 10 pounds I've gained over the last 5 years of treatment I'd probably drop my risk of recurrence to around 1%!! He feels that exercise gives me WAY more benefit than Tamoxifen without the possible bad SEs, especially blood clots. So I may stop in Feb for a month and see if my worrying brain will allow me to still sleep at night.

  • trvler
    trvler Member Posts: 931
    edited October 2017

    That's great, Lala!

  • runor
    runor Member Posts: 1,615
    edited October 2017

    Lala, I worry about this damn tamoxifen every time I take a pill. I worry because no one suggested I should have an abdominal ultrasound to get a baseline and watch for changes. I worry about blood clots and all that other stuff. And I worry that the day 5 years from now I am finally done that I'll feel naked and exposed and at risk without the damn pill !!

    THese are my thoughts only, not medical advice. But having read some studies on the effectiveness of low dose tamoxifen and knowing that for some women they want them to take it for 10 years (!), I think it would be reasonable to stay on some tamoxifen, at a much reduced dose, for a longer time if it made you feel more secure. As long as you were not having any major side effects from it, why not drop back to 1/2 a pill every other day? Or even 1/4 of a pill every day or every other day?

    It seems to me there is too much the idea that there is only ONE WAY to use this drug. 20mg, every day, come hell or high water. I disagree. I think 20mg was settled on as the most tolerated dose, NOT the most effective dose. Therefore, this is open to fudging in my opinion. So if you worry that you will not feel secure, tell your doc that you want to drop off on the dosage, but not entirely. You get to make these calls, unless he has hard evidence to the contrary.

  • lala1
    lala1 Member Posts: 974
    edited October 2017

    Runor---Thank you for that. I'm a worrier and I know stress isn't good for me so I try to do things that don't stress me. I like the idea of a reduced dose, at least for a while. My MO downplays much of my diagnosis but I still can't shake the fact that my tumor was grade 3 (he says if he gave my tumor to 10 pathologists, they would all have a different grade so don't worry about it) and my ki67 number was elevated (he said they looked at that number in the "old days" but no one pays any attention to it "these days"). And then of course I come back high risk, which he again downplayed to "only 7.5% recurrence risk. That's 92.5% it won't come back. I'd say those odds are damn good." He said Tamoxifen would just be a placebo for me but we all know that sometimes the placebo effect can be really good for us, especially if it keeps stress down. I've got a couple more months to ponder this issue so we'll see how it goes.

  • runor
    runor Member Posts: 1,615
    edited November 2017

    I do not get how you are considered high risk for recurrence at an Onco score of 15? That is not a high risk number. If you had been high risk you would think your doc would have pushed for chemo? Unless there is something about this whole Oncotype thing that I am completely misunderstanding.

  • lala1
    lala1 Member Posts: 974
    edited November 2017

    I'm not high risk from the Oncotype test but from the Breast Cancer Index test. That's the one that tells you whether or not you would benefit from 5 more years of hormonal therapy. I really thought with my low Oncotype I'd have low risk of recurrence and even my MO was surprised. But like I said anything over 5% recurrence rate is considered high risk by the BCI test and he thinks this cut off is too low. But he and my MO friend both say the BCI test is accurate to 99.99%. I'm going to try to focus on the "zero benefit" of Tamoxifen instead of the high risk part. :)

  • TWills
    TWills Member Posts: 509
    edited November 2017

    Hello all, I should be gitting my script for Tamoxifen this week or next as well as Ibrance if I'm randomized for the trial. Just wanted to ask what everyone might be taking for SE's? Not "planning" on having any but I'm also realistic. Also wondering if it's good to start some remedies before I start the meds, things that might be good for me anyway. I already have some joint pain, maybe from chemo, not sure so I thought maybe anything for that might be helpful anyway. I know there is a lot of remedies listed throughout this thread but it's pretty vast. Thanks in advance!!


  • legomaster225
    legomaster225 Member Posts: 356
    edited November 2017

    I started tamixifen two weeks ago. So far I have had aching joints in my hands that seems to be subsiding and one weird day of crying or feeling like I could cry if someone looked at me wrong. That was (hopefully) just a one day deal. I might have taken Tylenol or ibuprofen but have not needed anything really. I know it’s still early for me though. I take it at night based on others suggestions here.

  • Maui-Jen
    Maui-Jen Member Posts: 5
    edited November 2017

    Lala- I have shoulder and knee pain too. I've been on Tamoxifen for 4 months, and in the last 4 weeks or so both my shoulders and upper arms are very painful. It's painful to lift my arms out to the sides or even reach for things. I used to work out regularly before my double mx. Now I'm lucky if I can do a barre workout. Then the next day my knees hurt...especially walking down the stairs. As far as my shoulders, I can't think of a specific thing I did. It's gotten progressively worse. So I wonder if it's from the Tamoxifen or from having tissue expanders. I see my oncologist tomorrow. So I can bring these up to her.

  • eastcoastts
    eastcoastts Member Posts: 352
    edited November 2017

    Twills and Maui-Jen:

    I don't have joint issues (yet, anyway) but some I have read on BC.org feel that Turmeric helps. I take Turmeric but not for this necessarily.

    Maybe worth a try?

  • MexicoHeather
    MexicoHeather Member Posts: 147
    edited November 2017

    Hi everyone. I started Tamoxifen July 3rd. There were some SEs, but what I really noticed was vaginal thinning. This compounded pelvic floor muscle weakness from chemo. I was falling apart! The Gynecologist has been THE good person with the best advice, not the oncologist.

    To make it short: 1) Had pelvic floor physical therapy for 6 weeks, then a 2) total vaginal hysterectomy and 3) the ovaries and tubes removed 4) put in a urethral sling.

    Result: I can switch to an AI in 2018. The Gyno says he is so happy that I will not have to think about thickening uterine walls or ovarian cancer. Basically I told estrogen that it's not my friend! And I can jump up and down about that and not pee my pants! HahahaMedicating

  • shelabela
    shelabela Member Posts: 327
    edited November 2017

    just over 3 weeks since I've started Tamoxifen, has anyone else had vaginal discharge? There are times I feel like I peed myself. Calling my MO today just thought I'd get others input

  • TWills
    TWills Member Posts: 509
    edited November 2017

    Sheabela,I have read many times that can be a side effect. I've got an appt later today to see my MO and get my script:/ Mixed feeling I supposed, I'm thankful it's an option though.

  • trvler
    trvler Member Posts: 931
    edited November 2017

    I was told vaginal discharge was a side effect but I haven't really had it.


    Jen: I am having problems with my cancer side shoulder and I think it is because of a combination of scoliosis, scar tissue from having 2 nodes removed in my armpit and the tamoxifen. I think I have lifted weights incorrectly to compensate for the muscle cramps I get from the tamoxifen. I am in physical therapy now. Frozen shoulder is very common in mastectomy patients. As your doctor about PT.

  • lala1
    lala1 Member Posts: 974
    edited November 2017

    Maui Jen--I've decided it has something to do with the surgery. I'm thinking that we get so "tight" in our back and shoulders and then develop these other issues. My BS told me from the start to make sure I stretch in the doorway every day. He said we have a tendency to hunch over after surgery (a protective thing) and stretching will help. I've also had massages and been told my muscles were more knotted up that most of the people they treated! And then I think Tamoxifen exacerbates these things. Anyway, those are just my thoughts so I think I'm going to get a script for PT, try a massage and then get a personal training session at the gym to see if I'm lifting weights wrong like Trvler suggested. Surely one of those things will help!!

  • legomaster225
    legomaster225 Member Posts: 356
    edited November 2017

    Shelabela, I have vaginal discharge as well. I have not needed even a panty liner since last January when I started chemo but have started using them again since I started tsmoxifen. It is clear and thin with no odor so I just chalked it up to the tamoxifen. I see my MO in a couple weeks and my GYN in a month I thought I would just ask then.

    My shoulders are stiff sometimes as well. Mostly when I try to reach behind me. I have just been stretching and it seems to make a difference. PT is a good idea Trvler andLala.