"Tamoxifen Road" - Support and Encouragement
Comments
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I had forgotten about that one.
I was thinking about this one that ended w/ the conclusion that DCIS could be treated with 5 mg of tamoxifen daily. https://www.breastcancer.org/research-news/low-dose-tamoxifen-after-non-invasive-dx and https://www.abstracts2view.com/sabcs18/view.php?nu=SABCS18L_289
I found this also https://www.ncbi.nlm.nih.gov/pubmed/27381855
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Just saw this. Why does my oncologist say that soy is OK to eat? I now have endometrial hyperplasia as a result of the Tomoxifen. I have tried to stay away from soy, but it seems to be an almost everything, especially soy lethicin. I am so nervous about having a hysteroscopy for another biopsy for an abnormal Pap smear!
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I just got back on this site as sometimes I have found it upsetting to read the posts. Also, it never seems that people responded to my posts? Anyway, I've been on tamoxifen for over three years and not happy about it. I have uterine hyperplasia and will have a hysteroscopy for another abnormal Pap smear! I live in fear every day of this cancer coming back or wonder if it's still with me? I asked the doctor why they don't do more scans. I just don't understand it seems like you are just left out there when you have breast cancer, and that the monitoring isn't as intense as it may be with other cancers?
I have also suffered from severe leg cramps. I think they may dissipate by drinking more fluids. I'm not a big drinker, however, I may have a drink or two if I go out to dinner. I have not had any ill effects from it that I know of.
The skin on my face is wrinkled. I never had wrinkles on my face before taking tamoxifen. I have a disgusting area of belly fat, never had that before tamoxifen. I try to carry-on, but I'm so terribly depressed from this med. The oncologist prescribed Ativan. I don't want to get hooked on that. The breast surgeon prescribed Effexor. I didn't want to take that and haven’t. I don't sleep at night it's now 1:14 AM, and I'm still wide awake. I can truly say life has been one hell ride since this triple+ DX in 2015. Now they say to stay on tamoxifen for 10 years one of the eye doctors told me that that's not advisable that it really can damage your eyes. Thank you for creating this thread.
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Hey Why2015 you posted five hours ago and that's when I'm sleeping!
Here's a site that's been helpful for me regarding foods and breast cancer--these recommendations are backed up by peer reviewed research which is very important to me.
Regarding the leg cramps, insomnia and some of the other tamoxifen side effects, some of the other posted recommended magnesium glycinate, which I've just started taking. I'm having bone and joint pain even on this very low dose of tamoxifen which is not boding well for me staying on this long term.
At the end of the day, you're the one who gets to decide what if anything you want to take. If you, like me, value quality of life over living til I'm 100 but in pain and unable to do what I want, well maybe talk with your MO about reducing your dosage, or taking a break. It's your body and it's your choice to take or not take tamoxifen.
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It is so confusing! The link edj posted says soy isn't good, but . . .
These links says soy milk (in reasonable quantities) is fine https://www.mayoclinic.org/healthy-lifestyle/nutri... https://www.oncologynutrition.org/erfc/healthy-nut...
This is interesting (and scary) https://www.oncologynurseadvisor.com/home/cancer-t...
Looking at some studies:
- this seems to say that soy isoflavones while taking tamoxifen is good https://www.ncbi.nlm.nih.gov/pmc/articles/PMC34708...
- this says soy doesn't appear to interfere w/ tamoxifen https://www.ncbi.nlm.nih.gov/pubmed/23075937
- soy food consumption leads to decreased risk of recurrence or death from breast cancer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC28740...
- post-diagnosis soy consumption reduces chance of recurrence https://www.ncbi.nlm.nih.gov/pmc/articles/PMC33747...
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At the end of the day, do you eat a lot of soy? If you don't, then if there's any negative impact, your risk is slight. I don't eat soy because I don't want to, not because of studies.
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There's a difference too between eating soy in large quantities (think like a soy supplement or daily soy intake with every meal). It's important to consider the dose. Soy lecithin is a food additive that won't add a whole lot. Even if you choose to avoid soy, I wouldn't worry about something like that.
They don't do more scans because every time they do them, that's either radiation exposure or contrast exposure. My doc won't do them unless there's cause for concern, beyond the yearly mammogram. I am sure if I had symptoms of metastasis, they would scan. And it's not like scanning can do anything to prevent that anyway.
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Why2015, I recently had a D&C for what they thought was too thick of a lining. I had only been on Tamoxifen for 3 months when the 3D ultrasound picked it up. They couldn't get enough tissue in the office for a biopsy. It turned out a large fibroid had caused a false reading and my lining was fine. They feel I had always had the fibroid and the Tamoxifen started to feed it. If you have been diagnosed with hyperplasia they do not recommend you remain on Tamoxifen. My Oncologist and GYN both said Tamoxifen will increase the thickness of your endometrium and unless you have side effects like bleeding they are not concerned. I understand how you feel. Do mind me asking how old you are? and what is your BC diagnosis? I never was big on taking supplements, but now I take Magnesium, fish oil, cq10, melatonin, and others and they seem to help. Insomnia is a problem for me as well.
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Hi NoteRed.
I experienced a great deal of dizziness when I first started taking Tamoxifen in the morning. I decided to take it in the evening instead and that helped tremendously. I went back to taking it in the morning several weeks later because I wasn’t taking it at a consistent time in the evenings. My body must have gotten used to it because I don’t experience the dizziness any longer. That’s been my experience. I hope sharing it helps
Wishing you all the best,
Faith
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I've been quite confused recently in regards to whether it is OK to reduce the dosage from 20mg to 10mg. I was going to wait till I see the onco next week, but was having such severe mood swings, decided to just cut down to 10 for a few days However I then started having doubts about whether it was OK, did a spot of googling and found some info written by a doctor which recommended taking 10 in the morning and 10 at night, to reduce side effects. So I am doing that as from today, will see how it goes.
Why2015 that's interesting regarding the wrinkles, I feel like I have suddenly aged in the last month since taking Tamoxifen, however it's hard to know if that is the cause or not.0 -
thank you for this info. I have taken tamoxifen for about 4 weeks now and have experienced dizziness as well.
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WorryThePooh,
I have found that each person responds to tamoxifen differently. Many do very well taking tamoxifen twice a day. However, in my case, as I was ramping up, I was taking a pill each night and additional every other morning. I found that I was nauseated about 24 - 26 hours after taking the morning pill.
So, I switched to taking all in the evening which decreased the nausea. That helped a lot, but still having issues w/ sleep, etc. Nausea pretty much went away about 2 months after starting the tamoxifen at the 10 mg level, then ramping up to 12.5 mg. I switched to taking the pills right before bedtime which did help with the sleep (or lack of sleep) issue.I started having increasing issues w/ total fatigue, quit having any motivation, etc, etc. So, I decided to go back down to 10 mg which has really helped my motivation and energy level.
I know for sure that my medical oncologist is NOT ok with me taking anything less than 20 mg, but I needed to have more quality of life.
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Why2015 - so sorry for all the SEs you are having on tamoxifen, and you are a trooper to stay with it even with all this concern. There's a silver lining that it sounds like you are 3 years out now and cancer free? Could you try reducing your dose to see if that helps you stay on it but minimize some of the SEs? RE: joint pain, I've heard that yoga and stretching and exercise helps overcome that. RE: wrinkles, Vitamin D is supposed to be good for your skin and maybe that can help?
edj3 - I use that FoodForBreastCancer site as well! What I like about it is that it cites all the articles and studies around each food, so you can read all the individual articles and make a decision for yourself. I've heard pros and cons on soy, haven't made a call on that yet for myself, so right now I'm neither avoiding it nor trying too hard to introduce it. If I have some soy sauce with sushi, I'm OK with that.
Faith / Mel874 - I also had nausea the first couple weeks of tamoxifen and don't anymore. My oncologist said it was just our bodies getting accustomed to a new hormone. Glad it's something that passes and did for Faith, and Mel hopefully it will pass for you too!
DorothyB and WorryThePooh - I found it, here's the thread when the studies on the lower 5mg dose of tamoxifen first came out, and I posted other related studies I'd found at the time to that too:
https://community.breastcancer.org/forum/78/topics/870153?page=1#idx_8
And these additional studies:
5mg vs 20mg for DCIS
https://www.medpagetoday.com/meetingcoverage/sabcs/76757
10mg (and other) Doses & Combinations vs 20mg for Various Scenarios
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4053098/
10mg vs 20mg Tamoxifen in Pre-Menopausal Women
https://www.ncbi.nlm.nih.gov/m/pubmed/10576237/
This article references studies that do and don't show lower doses are just as effective
https://academic.oup.com/jnci/article/95/11/766/2520250
I'm still on the 10mg dose (which I take at 8pm every day) and here's why I'm sticking with the half dose for now:
- Studies are just coming out showing the lower doses are just as effective. When tamoxifen first came out, they prescribed a 40mg dose to everyone until enough studies came out to show 20mg dose was just as effective, and now 20mg dose is the standard. I really believe that based on the current studies we are seeing, 10mg dose will be the eventual standard.
- Obviously much better to tolerate side effects on a 10mg vs. 20mg dose, and less worry about the major SEs (like uterine cancer or eye damage) happening on a lower dose.
- I'm 5 ft. My Dad is a doctor who specializes in hematology and oncology, and he was one of those rare gems who always prescribed treatment according to a person's personal case, and not a one size fits all that most doctors today seem to do. I could write a book about this, but the short version is that he is the one that recommended I be on a 10mg dose, and my oncologist really respects his opinion, so all the experts are aligned with my dosage. He's also the one that first found the study before it was even published online when it was shared at a conference.
- I had a great message exchange with someone on these boards whose wife was going through breast cancer (he wrote to thank me on some info I'd shared re: axillary vs sentinel node dissections on another thread) who happened to work at these drug companies that provide the medicine we all take. He said its common practice for the dosages to be greater than needed initially and then reduce back, and thought it was very, very smart of me to take tamoxifen at 10mg vs. 20mg. His insider perspective helped a lot.
- I don't have side effects on tamoxifen. No joint pain, no trouble sleeping, I do get warmer at night after taking it but not the sweaty, intolerable hot flashes I've heard others complain about. Maybe it's because I'm on a 10mg vs. 20mg dose. My oncologist also thinks I'm faring better because I'm pre-menopausal and so far, NOT getting pushed into menopause by tamoxifen.
- Look up Shirley Temple's story and how when she was first diagnosed with breast cancer, the doctors at the time recommended a full masectomy that takes out most of the chest cavity which is what they did in those days, before today's modern masectomy that only targets the breasts. She insisted on the more moderate vs. radical surgery, even though in her days it went against all the norms. So, she defied the doctors then, but what she insisted on back then is standard practice today.
Medicine gets better everyday and I wouldn't be surprised if 10 years from now, 10mg tamoxifen is the standard dose vs. 20mg, just like 10 years ago 40mg was the standard dose and now its 10mg!
I still might try the 20mg dose and see how I fare, but for today, I'm good on the 10mg dose. My oncologist is not pushing that I go up... and he knows I want to get to the right weight before I try 20mg as its harder to lose weight on tamoxifen, so there's that too.
Whew! That was a long post. Here's a pic of Finley to reward anyone who made it through to the end of this post LOL.
Michelle in Cornland and Meow - hope you are doing well!
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OMG those puppies!!!
Just checking in ladies. The dizziness has subsided. Interestingly, it subsided as soon as the infernal heat broke. Seem to be related, but who knows. I took my blood pressure a couple of times during bad dizzy spells and it was very low. Beats me. It's better now.
2 1/2 months and doing fine.
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PebblesV thanks so much for all that information, very much appreciated, including the pic of Finley! I am definitely going to raise the topic (of the dose, not Finley) with the oncologist on Monday. I find her a bit intimidating, keep running through in my head how I'm going to ask her, lol.
mom2bunky that's good to hear you're feeling better.
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PebblesV, Finley is like a little cute pokemon... what a lovely thing ❤
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Does anyone know if Tamoxifen could possibly make an existing joint problem worse? I've had some swelling on my right ankle for literally years, but only since I've been on Tamoxifen, it has got a lot worse, to the point it often aches when I am either sitting down or in bed at night, even keeping me awake. Not sure if the timing is coincidental, or another side effect.
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Hi WorryThePooh, I would bet it can. My MO said it can mess with joints. Sometimes I get joint pain but usually I feel it in the muscles and tendons. She suggested magnesium but I haven't figured out how to take that without getting diarrhea.
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gb2115 I get my magnesium in my calcium chewable. I need the magnesium to offset the constipating effects of calcium with the plus that it also seems to help with the muscle and joint pain.
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Gb2115: I also have diarrhea problems with magnesium. It seems better to take small amounts several times a day than a greater amount once a day. Another way is to apply magnesium oil to the skin. It is well absorbed and does not cause diarrhea. Good luck!
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I actually think I have IBS...everyday is a big colon experiment, lol.
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Thanks Pebbles - will be reading some of the links you posted.
I'm still getting hot flashes w/ 10 mg / day but other side effects aren't as bad.0 -
Just found this forum and I am not sure if the forum is still active but
I have been on Tamoxifen for 1 1/2 years with almost no side effects until now.
20 mg per day the whole time and now Im getting horribly foggy headed, crabby, fatigued.
Just as a test I stopped taking it a few days and low and behold felt better, foggy head gone, not so crabby and not so fatigued also slept soundly through the whole night.
Does anyone have any information or experience as to why no side effects until 1 1/2 years into the treatment.
Does Tamoxifen keep building up in your system?
Thank you so much
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LJDH I've only been on Tamoxifen for 7 months with minimal side effects, but my MO already warned me if things start acting up I might need a break for a couple of months. So maybe you need to chat with your MO.
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LJDH0709, I would guess that if you have had no side effects until 1 1/2 years into the treatment, it is unlikely to suddenly change, so it seems more likely your foggy headed, crabby, fatigued feelings are not related to the tamoxifen directly? Could possibly be a virus, or environmental causes such as hayfever?
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Thank you I think your advice is good. Yes I think I'm going to have to put a call in to the office.
Thank you
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Well I did a test... stopped taking the Tamoxifen for several days and the side effects cleared up so
I think its related to the Tamoxifen. Someone suggested that different manufacturers use
different fillers etc and that may be a cause of side effects. Going to have to check on that!
Thank you
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LJDH0709: Perhaps you might consider taking a dose of 5 mg for a while instead of stopping it completely? Possibly the accumulation of metabolites in your system is what is causing those SE. In studies that tested a dose of 5 mg against a dose of 20 mg, it was proven that both doses worked well, but the 20 mg dose had more SE. When you feel better, you can take 20 mg again ... it is an idea, so that you are not unprotected. Good luck!
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Thank you so much Yndorian1. It does seem to make sense that 5 mg is better than not taking any at all.
I am not familiar with what the Tamoxifen metabolites are. I will have to do a search to learn more about them. So it seems like the Tamoxifen then keeps building up over time in your system. After 1 1/2 years of almost no side effects at all it certainly is an unexpected surprise. Thank you again
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It may also be your body really missing the estrogen.
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