"Tamoxifen Road" - Support and Encouragement
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AIs were terrible on me so I'm on T probably for life with my profile. Thankfully ses are not a big issue. Being on something is better than nothing if only for peace of mind, imo.
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Good morning friends,
Just wanted to update. I've now been on Tamoxifen for a month. I went ahead and took my MO's advice and went in at 20mg to see how it goes. I also followed the advice of many here and am taking it at night before bed. So far, side effects have been minimal. Hot flashes for sure, and night sweats. But I had those before, so whatever. They suck, but they don't last long at least. That's it, except for:
Dizziness. Like serious, I'm going down if I don't sit down dizziness. It doesn't happen often. But it's happened twice in a month. Last time I came inside and googled and sure enough dizziness is a side effect. I can live with it, so long as it doesn't get worse. We shall see.
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mom2bunky Thanks for the first month info, I start at 20mg next week, Iappreciate your insight!
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I have been taking 20 mg Tamoxifen for 2 years and have managed very well on it with few side effects apart from a very gradual hair loss which is now really upsetting me.
Luckily I had very thick hair to start with, but it is now half as thick as it used to be and my friends are now noticing the difference too.
Has anyone else experienced the same problem and have they found any supplements or treatment i can try to stop this hair loss?
I spoke to my consultant but he was not very helpful and was unable to suggest any treatment.
I have read that the following help with hair loss - vitamins C and D, hydrolyzed collagen, biotin, omega 3, but I am scared to take these incase they stop the Tamoxifen from working properly.
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Orianthi I've only been on Tamoxifen for 6 months and have had gradual hair loss. Like you I have thick hair to start with so we will see. My MO recommended a shampoo with collagen and biotin it supposed to help you have thicker, fuller hair. I also went with a little shorter hairstyle because it seems easier to manage the hair loss.
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Orianthi---those things should be fine to take with tamoxifen!!!
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Orianthi - my MO suggests looking at mskcc.org which is Memorial Sloan Kettering's website. They have a comprehensive listing of vitamins and herbs and list interactions.
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If you're in menopause imo hairloss is inevitable. I had issues before cancer. It's now going faster. Nothing I can do. My hair was nice but not for several years now. If I stop T I'm even higher risk to mets so I suck it up.
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Took my first tamoxifen two nights ago, starting at the 20mg. I'll see how it goes, I had some severe side effects with other hormone meds in my life. It sounded like there's no alternative to tamoxifen??? That's a bit jarring. Anyways I also take CBD gel tab 20mg twice a day. I'll try to post updates because I know I appreciate that you all do. Thank you!!
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cbd interferes with tamoxifen..
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Thanks Flashlight, Goldfish488 and Monicahey for your replies. I have been on Tamoxifen 20mg since the 6th of September, so almost 3 weeks. I have found an improvement in regards to the knee pain. It's not gone completely but definitely better. My main problem now is feeling flat, a little depressed some days, other days just sort of blank and no zest for life, plus hot flushes and mood swings, and feeling very insecure as well, which I'm not sure is a direct result of the tamoxifen or due to all of the above!
Seriously, I know I am very fortunate to have found the cancer early, but with all these side effects affecting my mood, I find that sometimes I feel a bit irrational, and even a bit angry with my doctor for never having told me I should not be taking HRT for so many years. They just kept writing out scripts when I asked for it, without any advice. I do think that if I'd gone off them years ago this may never have happened. Of course it is what it is and there's no going backwards. I'm glad you guys are here to vent to when needed. Thanks for listening!
Oh, after reading your post mom2bunky, thinking I might start taking it at night from tomorrow, see if that helps...0 -
Not sure if taking it at night has made any difference, as yet that I can detect.
I'm having a lot of trouble with mood swings and hot flushes so far on this drug, much more than I did on anastrazole.0 -
mom2bunky - I had a little nausea the first month of taking tamoxifen and then it went away, so the dizzy spells hopefully are a temporary thing for you. My oncologist said it was because the body was adjusting to different hormones.
Orianthi - I take vitamins C and D anyways (I've ready both are cancer fighting) and I haven't seen significant hair loss yet, it's been almost a year in tamoxifen. I'm pre-menopausal though so don't know it that also has something to do with it.
Worrythepooh (love the name BTW!) - I also take tamoxifen at night around 8pm and SEs have been pretty good for me so far in that there are none right now. Maybe a little warmer at night and that's it. I'm on a 10mg dose though. Maybe try lowering your dosage, see if that helps?
Here's a just because throwback photo of Domino, Kit Kat and Tucker!
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PebblesV- love your animal friends!
Thanks everyone for posting here. I start mine soon...
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Thanks PebblesV, my doctor prescribed 20mg. I will keep going on it for now, as I've only been on Tamoxifen for a month, (after 5 months, 5 days on Anastrazole). I want to see if I adjust to it gradually.
P.S. your dogs are gorgeous!!
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It's been almost three weeks and now I have a horrible headache that won't go away with prescription strength ibuprofen. The pain stays on one side of my head but moves around that area. Called oncology office who said I could go off tamoxifen to see if it caused my headaches but tamoxifen is the only drug I could take as premenopausal. If this three day, incredibly painful at this point because each day hurts worse, head pain is from tamoxifen, will it go away as my body gets used to it? I guess I'll find out. I still can't believe there is only one sole option for premenopausal. Since I'm only 45, I feel like I have to keep taking it since I could still have decades left to live
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I realized today that I haven't felt nauseated for a few days . . . I am still doing 12.5 mg / day but will up it to 15 mg soon.
I haven't had my soy milk smoothie for several days, so first I want to start doing that again and see if the nausea stays away. I did have nausea before smoothies, but I guess there is a chance that the soy milk might not agree w/ me.0 -
Where is MIchelle in Cornland? It has been quite a while since she stopped by to say hi on this thread. I hope all is well.
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Togethertolearn -> Im sorry about the painful headaches. I get Migraines so I know how debilitating that type of pain can be. If Tamoxifen ends up being the cause of these headaches and the headaches don't eventually go away after your body adjusts there are other options. I totally understand the fear and concern about not being able to take the pre menopausal medication treatment. I was only 41 when I was diagnosed and I'm 42 now. You're not alone in that fear.
You might want to talk to your team about medically suppressing your ovaries with Lupron or zoladex if Tamoxfien end up affecting your QOLtoo an unmanageable level. With ovaries medically suppressed with monthly injections premenopausal women are able to take any of the number of postmenopausal medications like Arimidex.
Tamoxifen didn't work for me. I had zero quality of life, but it works for many women. I tried the hormonal suppression route but unfortunately I'm one of the rare people that are allergic to them! So that wasn't an option for me.
Hopefully if these headaches don't go away you will be able to talk to your team about other options. Good luck and keep us posted.
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32B and WorrythePooh - you’re welcome and glad you are enjoying the pup photos!
TogetherToLearn - I also had headaches my first few weeks of taking tamoxifen and they went away when my body adjusted. I also made sure to eat around the time I took the pill as it helped with nausea. I think DorothyB who had nausea at the start too said they went away recently so that’s a good sign. You might try lowering your dose and then gradually working your way up to adjust.
FYI I’m 44 and also premenopausal. Spoonie is right that there are other options as outlined - for me personally, if I could tolerate tamoxifen I prefer that as it’s less drastic than shutting down my ovaries. Tamoxifen acts like estrogen just without the breast cancer causing part, so frankly, also being married 4 years and still feeling like I’m in that newlywed phase with my husband, I prefer to keep some estrogen and have a hormone replacement that acts like estrogen without the bad... and stay premenopausal as long as I can. Shutting down ovaries is an option, my MO also says it pushes you into menopause quickly vs gradually, so while I respect others who have chosen this option, it’s just not for me today. Instead, I’ve researched ways to combat potential SEs so I can tolerate tamoxifen. Eating and taking it at night helped me overcome the nausea.
Runor - I’d love to see Michele in Cornland back here too!
For 32B, worrythepooh, Spoonie, Michele in Cornland, meow and anyone else who enjoys the paw photos... meet Finley, our newest paw family member...
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Pebbles, are you still doing the 10mg dose of tamoxifen?
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kec1972 - yes, AND I just had my mammogram on Monday and it came back normal! No signs of cancer!
I’m going to have to dig it up but there were studies showing a 5 mg dose was just as effective as 20 mg in early stage no node cases. Came out very recently which was why my onc was fine with 10 mg for me (I’m also 5 ft, smaller than average...)
Another paw pic to celebrate...
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I've been on Tamoxifen for 3 weeks and am SO fatigued. I'm going to start taking it at night to see if that helps. I'd love any other tips for getting some energy back.
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No tips yet, it's not going so well for me. I did start taking magnesium glycinate based on the recommendation of some of the posters here. Hoping it helps with the bone/joint pain and the heart rate spiking during my runs.
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AskMissa - I take mine at 8pm and have not been fatigued. Yoga or some other moderate exercise also seems to help. I tend to exercise mid-day and it energizes me!
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The study was on DCIS, not IDC - although these two make me wonder if 10 mg / day might be enough. I'm still on 12.5 mg / day with plans to increase to 15 mg / day after I return from a trip later this month.
Study saying 5 mg is enough - I know I have the link - still looking for it . . . found references to the study here https://www.medscape.com/viewarticle/906170 and here https://www.breastcancer.org/research-news/low-dose-tamoxifen-after-non-invasive-dx
This pdf discusses "Effect of Blood Tamoxifen Concentrations on Surrogate Biomarkers" with conclusion that "An 80% reduction in blood concentrations does not seem to affect the activity of tamoxifen on biomarkers of cardiovascular or breast cancer risk and may in fact have a more favorable safety profile. Additional studies are warranted to determine the most appropriate dose of this agent." https://www.researchgate.net/profile/Aliana_Guerrieri-Gonzaga/publication/12740517_Effect_of_blood_tamoxifen_concentrations_on_surrogate_biomarkers_in_a_trial_of_dose_reduction_in_healthy_women/links/02bfe50f8292020315000000.pdf
Effects of low-dose tamoxifen on breast cancer biomarkers, etc0 -
askmissa - I take mine at night and it usually helps me sleep, anxiety often would cause me to sleep badly, so tamoxifen has been helpful in that way.
I was put straight on 20mg - some are on less?!?! Well I'm gonna ask about that at my appointment! Especially if it may be just as effective. The less drug in my body the better imo.
I learn so much on this site I'm so grateful.0 -
TogetherToLearn - unfortunately, there haven't been any studies on anything other than DCIS that shows a lower dose is as effective so many MO's will want their patients to take the 20 mg if at all possible. My MO wanted me to start at 20, but I refused.
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That's right, I'm on less because that's how I wanted to approach this--a gradual ramp, probably the slowest ramp in the world. I think my MO is glad that I'm giving the drug a try. Plus it's my body, my choice.
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DorothyB: Is this the trial you were looking for?https://academic.oup.com/jnci/article/95/11/779/25...
This study was done in a pre-surgical environment, but has shown that in 1 month of treatment 3 different doses of tamoxifen (1 mg, 5 mg and 20 mg) have been equally effective in reducing the ki67 of invasive carcinomas ... and the dose in mice equivalent to 1 mg for humans has proven effective for prevention.
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