Tamoxifen questions
Hello! I've been on tamoxifen now for a little over a year. I had terrible side effects in the beginning so we dropped my dosage down from 20mg to 10mg. That helped quite a bit. We eventually (about 4 months ago) increased it back to 20mg because my oncologist said there's no proof that 10mg is effective. Anyways recently I've started having the awful side effects again: terrible hot flashes, hair falling out, mood swings, leg cramps. While I know I am so fortunate to be alive and to have only been diagnosed with stage 1 breast cancer 0/26 lymph nodes, I'm wondering if continued use of tamoxifen is worth these side effects that are taking over my life. Any thoughts? Suggestions? Researching tamoxifen on the internet is proving useless. I wonder if it's really necessary to continue... Thank you!!
Comments
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HI Disney, I would have a good chat with your MO about any alternatives or if there is anything you can take to reduce the side affects. What about acupuncture.
I've been on tamox for just over a year and really have been very lucky with very little side effects. First couple of months I got headaches and my hips ache... but nothing that interferes with my way of life (I wont allow that).
Sorry you are hurting - really hope you have a good MO who listens.
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I've been on tamoxifen for just over three months. Every joint in my body is in constant pain. I can barely move when I get up. I have horrible hot flashes and night sweats. My ears won't stop ringing. I've gained some weight. I've become very irritable. I was also only stage 1 and very lucky. I'm starting to not recognize myself though and it really bothers me. I'm having more surgery on 1/29 and have yo be off it for two weeks. Can't wait to see if it helps. Are you premenopausal. Keep me posted!
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I have been on Tamoxifen for almost two years now and have found the side effects do ease off some over time. I have also found that if I walk or exercise regularly the calf pain does not occur. Course if I skip too many workout days, it comes right back. Doesn't have to be hard core work outs, just walking will do.
Hope your side effects ease up soon.
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Tamoxifen reduces your risk of recurrence about 40%. BUT, everybody has a different recurrence risk. So, for someone whose risk is already low, that might not mean that much. E.g., if your risk was only 4%, it might not be worth putting up with a lot to get your risk down to 2.4%. But if your risk was higher, like say, 30%, it might be very worth it to get it down to 18%. And each person will have a different threshold as to what they will put up with for what amount of risk reduction.
Your best bet would to be to have a conversation with your oncologist about exactly what your personal risk is, and how much Tamoxifen reduces that. Then you can start evaluating whether the trade-off is worth it to you personally - it's not something any of us will be able to answer for you.
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I just started Tamoxifen two days ago. I know each person responds differently so I'm hoping not to get the nasty side effects I've read about. Reading about those people who have few, if any, gives me hope. I am doing this as a preventative measure. My doc said to give it 6 months to get through most of the side effects, which should ease up after that. After my first abnormal mammogram in November, they found I had LCIS and I had a lumpectomy to remove it. They got it all and found that it did not invade the healthy tissue surrounding it, however I am at a much higher risk of getting invasive breast cancer because of it. My breast nurse specialist said if I can do this for 5 years, it will greatly reduce my risks. She also told me that I shouldn't beat myself up about it if I find that I can't tolerate the side effects and decide to stop taking it. She said I will still be monitored every 6 months with alternating mammograms and breast mri/ultrasound. So, I'd like to follow this thread to see how others are dealing with Tamoxifen!
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I have been on Tamoxifen for almost 5 years now. My SE include bone pain, hip pain, joint pain, hot flashes, weight gain, hair loss and forgetfulness. I also had thickening of my endometrial layer and had to have a D&C. I stuck with it because I was afraid not to.
So for almost 3 years I had all of those SE and have found that they did subside. I hope your journey on tamoxifen goes much smoother than mine.
I am working on weaning off now. I see my oncologist next Tuesday and I am very excited! I am nervous about the SE of coming off of it, though. Thankfully, my 5 year is near!
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I am on my second Tamoxifen journey of 7 months. (Took Arimidex in between for 3 months but could not deal with side effects). The first few weeks on Tamoxifen were awful. My head felt like cotton balls, I was nauseous, tired, crabby, emotional. Both times though, after 7 months of use, I feel better. Yes, I have hot flashes all night long, but I allow myself one half Ambien once a week to get a really good nights sleep.
I counteracted my initial s/e's with Ibuprofen (Motrin 800mg) and very low dose Xanax (0.25mg) in the morning if I just felt like quitting. I felt so out of touch and strange, and the medication really helped me to stick to the Tamoxifen. At first, I took 5mg in the am and 5 mg in the pm, and then worked up to 10mg twice per day and after about 3 weeks I took 20mg at night.
I no longer need the Xanax during the day and only take the Motrin occasionally. To all of you who are as scared of this drug as I was, there is a good chance that side effects will get better. Give it 7 months at least. It can be tough but it got better for me and I hope it will get better for you. I also started meditation and accepting what is rather than wishing for what is not. I am at peace now and enjoy my days knowing that nobody can predict the future for us. I may be cured, and I may not be, but for today, I am well. All I have is this moment, and it is okay.
Hugs to all of you out there.
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Hello Everyone - there are so many good posts here!
I have been on tamoxifen for six months and I too have horrible leg cramps, in addition to gaining weight and losing my hair. The leg/foot cramps come at night, and I am awakened 4-5 times a night. It is so bad I hobble into the bathroom and soak a washcloth with hot water and apply, which brings some relief. Before I go to bed I take magnesium, calcium and potassium, b/c I read that was good, but to no avail. My question is, do you have any wonderful remedy for these leg cramps? I mentioned it to my doctor and he suggested reducing to 10 mg but I am afraid to do that b/c this is my second bout of BC - the first was ER-PR-HER+++ but when it returned it was ER+, and both were Grade 3. So I want to continue, but darn, these cramps really hurt! Thanks for any input
Mausie
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Mausie,
Hate to tell you but exercise really helps the leg cramps.It doesn't have to be overly strenuous but simply walking 15-20 minutes per day. I have horrible calf pain if I slack off too many days in a row but do fine otherwise. Also a banana several times per week helps too.
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Make sure you are staying well hydrated as well. Dehydration can cause leg cramps.
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I started with Tamoxifen right after finishing chemo. I am a runner and yogi; those activities are very important to me. So, when, three months later I could barely get out of bed & my hands were cramped into fists, I told my onc "no more!" She asked me to try Aromasin; that lasted two months before I gave up. Tried Tamoxifen one more time; three months later I was done. It was a difficult decision that I still wonder about given my RS of 23-25% without Tamoxifen. I had to be prepared to have no regrets if my cancer returned; I was told by my MO that Tamoxifen was only lowering my RS to 18% and it wasn't a guarantee. I highly recommend taking Tamoxifen if you can, but truth is not everyone does. For me, I survived chemo, and I wanted not just to live but to Be Alive. I made a conscious choice, and I do not and will not have any regrets.
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Hi ladies. I am now 2 weeks into tamox and have had no SEs except very tired and can't stay asleep at night. But the last 3 days I have been having weird feelings around my ribcage / chest. Its like everything is expanding and I feel like my breasts are balooning out (but they aren't). Its awful when you are wearing a bra. This evening it has moved away from the chest area and feels like its in my upper back. Last night i was at a bday party and felt like a hot air balloon. Very strange.
Not sure if this is worth pointing out to my MO or just wait it out a week or so - or if anyone else has had this. Other than that, tamox and i are doing ok thus far.
Thank goodness today I granted myself a pyjama day lol.
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MrsDarcy,
I would recommend mentioning it to your MO. I have been on Tamoxifen for almost three years now and have all the usual side effects but never heard of that one. Sounds more like lymphedema but please check it out and let us know. Wishing you the best.
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Hi Odie - I did speak to him (via email) this morning. It "could" be the Tamox but we aren't sure. I have a call into my BS and if he doesn't get back to me, I have an appointment with a physiotherapist on Wednesday am. Today is a bit better - but still not 100% .. I will do some exercises and massage movements that I was taught after my lumpectomy tonight - that's for sure
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Hello! I am new to this discussion board, so bear with me! I am freaking out right now. I have been on Tamoxifen for 9 months. I have dealt with the side effect of mood swings and have sought therapy to help with this. Now I am 5 days late. I have been pretty regular up till now. I am scared. We use protection, but yikes!!!! Work me through this, folks! I realize I could just take a test, but am too scared. I see MO on Thursday. I am bloated and cramping, and feel like I ready.
Send me some strength!!
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Hi,
I've been on Tamoxifen since June. I had the bad leg cramps and some general muscle cramping. My onc recommended taking magnesium. I started a Cal/Mag and that helped. I recently got additional straight magnesium that I take sometimes as well. It really has been much better since I started it. I haven't had one of those wake-you-up -in-the-middle-of-the-night-charley-horse leg cramps in a month perhaps. I also am doing yoga, walking, and have recently finished Herceptin- all of which may help. I do get mild hot flashes. Again, I think exercise, and acupuncture (which I did during chemo and rads) can help as well.
But everyone is different. I hope you find something that works for you. Quality of Life is truly important!
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Reenie, how old are you? I've heard that tamox can mess with periods. I can't say for myself, I'm 50 and mine haven't come back since chemo stopped them.
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I am 44, will be 45 in April. I have taken 2 tests, and both were negative. Hoping Tamoxifen does not effect home preg. tests!
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Oh no, surely it could not affect that.
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Jennie, should I detect a tad bit of sarcasm! I see MO tomorrow!
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So it looks like I am going to the ER after work tomorrow ( new job - can't leave during the day ) to see what is going on. The lump near my breast incision is visible now. I have a purplish line under my breast too. Just swollen and yucky. Tried to reach my BS , to no avail. No return calls. MO doesn't answer either. Weird. I am the only breast cancer patient I know that has a 15 minute follow-up with hersurgeon in May and that's it. Haven't seen my MO since November. No blood tests or anything. I feel forgotten. So I am going to another hospital ER tomorrow. Enuf already
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Reenie 44,
Tamoxifen can really make your cycles wonky so try not to worry too much. Sometimes I skip months which my doc says is normal.
Sending hugs to you MrsDarcy. Hope you get some answers..
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MrsDarcy, let us know how it goes, please.
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I saw MO yesterday. He thinks I am fine, and missed cycles are related to Tamoxifen. I did have a blood test to confirm, waiting for those results.
MrsDarcy, please keep us posted!! I am sure you are nervous. I am not sure how others are being treated, but I see my MO every 3 months, my RO every 4 months and my surgeon every 6 months. I have blood work for most MO visits, but that is mainly because I am iron deficient. I will say a pray for you!
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Just heard from Dr. For sure not preggo!
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Good evening ladies
I didn't go to the ER after all .. wayyyyyyyyyy too many people. I am convinced its LE in the breast - and I have an appointment on Tuesday with a specialist in massaging / draining, etc .. for LE.
If SHE decides I need to see someone because the seroma or hematoma (no clue what this lump is) at the incision site is indeed visible now and pulling on the incision.
I had the best care up until my surgery. Then, downhill. MO forgot to tell RO I wasn't having chemo - I had to be the one to tell the RO and then they waited till 11.5 weeks post-op to start rads. Was never informed of my radiation therapy sessions (length, how much, what, etc ..) and when I asked the RO, she never had my file.
MO answers my emails once in a blue moon with a "I will write to you later" - and never does. So now I am trying to figure out how to transfer my file from one hospital to another - which isn't an easy feat in Quebec
Thanks for your concerns .. I am not out of the woods yet but a little more at peace this evening with what this may be ..
Reenie - thank goodness .. and at the risk of sounding totally silly .. it reminded me of the movie "Grease" when Rizzo tells Kenickie "Hey Kenickie, false alarm, Doc says no baby" ..
Hugs to allp.s. - Tamox and I seem to be getting along fairly well - minus sleepless nights
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What is LE? Your post made me sad. Sorry to hear that your medical team has not been as attentive! Keep us posted!!
Total false alarm, and relieved!!
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Reenie - I put LE for lymphedema. I hope I didn't use the wrong abbreviation. If I did, I blame it on tamox LOL !
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Hi Odie and BayouBabe
Sorry I am replying so late. I am not so good at maneuvering on these discussion boards, and after I posted something, couldn't find where I had done that. Thanks for your patience.
Yes, I do get regular exercise (I actually like exercise) and stay extremely well hydrated, but I still get cramps. I do a whole bunch of things now, all of which seem cumulatively, to help a little bit, but I am still getting cramps. I think I am prone to cramps, and that is just the way it is.
But I do appreciate your answering my post and thank you for the time you took to try and help me. These discussion boards are great and I depend on all of you. I have learned so much here!
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mausie, bananas might help
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