"Tamoxifen Road" - Support and Encouragement
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Oh my gosh nutfarmer, that sounds like a difficult few years. I'm sorry you've been having to deal with all that. I also hope the next set of news comes back good and you can have some easier times ahead. It's great to be resilient and all but it's better not to need to use it all the damn time!
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Good luck Nutfarmer! I hope your biopsies are clean, and your surgery goes smoothly. A friend of mine had hers done through her cervix - no abdominal incision at all! It has a much faster recovery time than a traditional surgery. Might that be an option for you?
I know all women's experiences are different, but I was happy to have my hysterectomy completed long ago. I hope your experience will be a positive one.
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Nutfarmer, wishing you all the best with the surgery and with the biopsies, hope they are clear!
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Nutfarmer, I'm so sorry you are going through another round of cancer stress. My situation is similar to yours in that I was perimenopausal at time of diagnosis (age 54). I have been on Tamoxifen about 5 months. No period since about a year ago when chemo started. Plan I think is to do the 1 year of tamoxifen and then consider switch to another agent. Just had my first post-treatment mammogram this past week and it looked good (big sigh of relief). Good luck with the biopsies/surgery.
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In first month of Tamoxifen. Negotiated with oncologist to slowly introduce and taking 5 mg. Second month will begin 10 mg and then 20 mg in third month. Only symptom so far is in my mouth. Teeth feel a bit achy. Hard to explain but began to feel this past two weeks. Weird.
Noticed a post from Berkley, Michigan mentioned working with a Naturopathic Oncologist. Is this person in Michigan? Would love to know who this is. Thanks
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loveandjoy I'm not sure what a naturopathic oncologist is but let me know if you find one. Sounds interesting.
Good luck with your ramp-up. I just completed 4 months and so far so good except going to the bathroom a little more often, occasional dry mouth, and very slight intermittent abdominal pain and fatigue.
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Today will be my first day of tamoxifen. I am also day 7/33 of radiation. I am 43 years old and premenopausal. Hope that I can handle the side effects
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WorrythePooh - glad and envious you are in a good exercise routine! My husband and I need to figure out home exercises as I’m in CA and all gyms are shut down and we are in a Safer at Home mandate through mid-April.
Nutfarmer - I’m echoing everyone else re: sending well wishes. My cousin had a hysterectomy recently and is doing fine.
Momof2winsplus- I started tamoxifen at 43 and have been on it over a year now. I’m at 10mg and SEs have been mild or nonexistent for me. You might have some nausea the first week but rest assured it goes away - that’s your body adjusting to the new hormone and once adjusted you’re fine. Your cycle might also be wonky but it settles back to a regular cycle after around 6 months which is perfectly normal. For better or worse, I am still very regular on that time of month once a month, which just makes me glad that so far tamoxifen is NOT pushing me into menopause. Main SE for me is that it’s really difficult to lose weight and I’ve gained weight instead. No joint pain or crazy hot flashes so far.
To all the ladies - it’s great to have this community and share our various experiences and seeing how we all adapt to this. Stay safe during this time too!
The positive of working from home and safer at home - the pups love it:
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*squeeeeeee* What a happy little puppers!
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I'm back on my second attempt with this 20mg tamoxifen - has anyone had anxiety attacks? Not full blown panic ones. You'll know if you've had them! They just seem to come pretty often lately and not just after our lockdown atress. Strange and annoying. I'm having one now!
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Yes, Together, I've absolutely had them. Not recently, fortunately, but definitely since starting tamoxifen. Tight chest, heightened senses on alert, a little bit heady - but absolutely nothing alarming going on around me. Just my body acting like it was afraid, but my brain not really being afraid. Very weird.
And I was very frustrated with my oncologist because he didn't seem to understand what I was talking about at all. He suggested some sort of anti-anxiety drug, but it would have to be a daily dose with a whole host of other side effects ("may cause fatal episodes") just to manage a very infrequent and bearable (if uncomfortable) symptom. :P
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I'm going to be starting tamoxifen in the next couple of weeks. I'm trying to be positive, but I'm pretty worried about side effects. I'm starting a pretty intense masters program in July and I'm worried about the brain fog I keep hearing about. Has anyone had experience with it? Is there any way to minimize it?
EDIT: Also just wanted to say that I'm impressed with all of you that are doing this research into Tamoxifen dosing and taking half doses. After reading this thread and doing some research on my own I asked my MO about it because it made me feel better that this was a potential option if SEs are too bad. She immediately struck it down but I'm switching MOs when my insurance changes soon so maybe it could still be an option. But I wanted to say thanks for putting that out there.
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Together,
I’ve only been on Tamoxifen for a few weeks after a gradual build up. I get anxiety from it for sure. Also, in random places like out walking, driving. I try to keep busy so my mind won’t focus on it. I’m hoping I will get used to it after awhile.
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Diles, I also worried about SEs before starting on Tamoxifen. It turned out that the initial full dose was too much for me, so I have been taking only half for 2 months, 10mg, and the SEs have subsided a lot, though not completely gone. I would say it's more manageable. My MO was confident in lowering the dose in the light of new studies and because I had a Grade 1 cancer, meaning that it would grow slower. I noticed yours was Grade 2 and I'm thinking it might be the reason your MO wanted you on 20mg? I would definitely ask them about it next time. Having said all this, you could very well be one of the lucky ones who would have little to no SEs, as I know of so many women who posted on this site. Good luck and my best to you.
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Diles I would forget words. I would be mid sentence and unable to come up with what was the next word. It's like I knew what word I needed it just wasn't there! And I would just stop a stare. That's frightening mental issues yes? So I went off it for two months and have been a month back on and have only had the missing word mind once - much better!!! I'm wondering if my body was still healing itself after surgeries and treatment and I started tamoxifen too soon after or something? My encouragement would be, you can always take a break if you feel like it's hindering you. I don't regret the break because I can better know what are for sure side effects now. Mine currently aremore geared to random anxiety attacks and easy to get headaches from sounds. I admire you getting your masters, I have two unfinished ones and often muse about completing one.
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Hi Everyone,
I am new to the community and this is my first time posting here. I am considered to be at high risk to develop breast cancer, but as of now, I do not have breast cancer. I have been diagnosed with ADH and have had it removed. I have been offered Tamoxifen to lower my lifetime risk, but it has been sitting in the kitchen cabinet for almost 2 months now. I am fearful of the risks that might happen. Is anyone else taking this medicine just as a preventative??
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thanks for the great responses!! For you tamoxifen veterans, how do you recommend starting out? I’m leaning towards doing 10 mg for a couple of weeks and then trying 20 mg to see what happens. This is AMA since my MO is very strict about the dosing. What do you think?
If using a once daily dose, do you folks recommend taking in the morning or nighttime?
Thanks
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Diles,
I never asked my MO, but I did ramp up the Tamoxifen. I did it rather quickly though. I did a week at 10mg, then a Week at 15mg, then 20. I take mine with my Vitamins, etc. all at once (I use a pill box so I know for sure) with lunch. I think taking it with food helps, and so far the timing has been fine.
In regards to side effects, I’m almost nervous I don’t seem to have many. No real hot flashes yet (and I’m premenopausal), occasional dizziness and anxiety, some discharge the first week. I try to keep myself busy and not think about it. I’m thinking it’s still ramping up in my body as I only started a month ago. I’m much better this week and am hopeful that I can do this. I do wonder about people that say it’s not working if you don’t have real side effects? My mother never had any and says not to believe that
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Diles, I have been taking tamoxifen for 7 years now. I take it in the morning because I diidn't want it interfering with my sleep. I do take 20mg and have from the very beginning. I have heard of women on another thread who split the pill and take 10 in the am and 10 at night. That is one way to adhere to your MD orders. Maybe your MD would approve that. Maybe that would work for you.
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I was given 20mg and I took it right away. I started on October 14th. My side effects include have a some naseau and some aches and of course hot flashes. It is tolerable to me. I am on an antidepressant, lexapro that I have been told helps with the side effects not being extreme. I do not plan on going off of it while on the tomaxifen. I thought about slicing in half but just went for it all.
Things I do to help: I am on Vitamin D, have magnesium as I do get cramps, take evening primrose (that helps with hot flashes) and I exercise daily. I find that really helps me.
Good luck.
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Hello ladies who want to get off of sugar. Use a small amount of stevia or truvia, or even xylitol. Not the unhealthy substitutes like aspartame or splenda. It really helped me and doesn't take a big amount, i.e. even 1/4 tsp. makes tea or lemonade taste great!
Wheatfields
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hi there. My wife just started tamoxifen having finished chemotherapy. Did the side effects start right away? Or does it take time? Thanks in advance.
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vidal1993, Mine started about 2 weeks after I started taking 20mg. Some women don't have any problems with Tamoxifen. I had a lot of bone pain, insomnia, dry eyes, and hot flashes. It also made me weepy at times. It is important for her to stay hydrated. Some supplements like fish oil help with the dryness. There is a lot of good advice to be found on this forum. Hoping she doesn't have any side effects!!
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It's not really possible to say - it can be anything and different for everybody.
I had side effects that started right away and some that started later. Most of them were mild and almost all of them sooner or later subsided, either on their own or with some medical help.
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my side effects were probably day 4. I took a two month break then started again and seem to be doing better - you can always try a break or less dosing if side effects prevail
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Thank you for the replies. My wife was supposed to have an axillary dissection on march 18, but it has been delayed due to the Coronavirus crisis. The anxiety is killing us, and I hear anxiety is a tamoxifen side effect. Any remedy for that? An anti depressant
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for me, I believe tamoxifen has led to anxiety attacks even. I hate them. Had one yesterday. Was offered an anti-depressant, chose not to. I take a CBD pill 20mg every morning and evening for anxiety though. Although my cancer surgeon recommended the CBD for my anxiety(before my surgery and months before tamoxifen), some online claim CBD interferes with tamoxifen absorption. We can only do what we need to for our life, you do what is right for you. I need CBD and if that messes with tamoxifen then it is what it is - I still gotta LIVE, not just exist. Good luck.
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Hi Vidal---my side effects took awhile to show up, other than the hot flashes that were present maybe a couple months in. Otherwise it really was over a year before I really had a good idea how it would be.
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thanks for the replies everyone, I decided to start at 10 and then taper up since I’m really nervous about it. I just took my first dose and I’m feeling pretty anxious, I think I’m more anxious about this than I was about the mastectomy.
Thank you all for the support and advice, there’s a lot of great info on here.
Has anyone had issues with a lot of bleeding? If so, any advice for that?
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I am 5 1/2 months in and have started having a lot of bone/muscle pain in the last week or so. At first I didn't connect with the Tamoxifen but I'm now thinking that is the cause. It is weird that it is worse at night in bed. I am trying to exercise regularly and that does seem to help. I'm wondering about switching it to an evening dose. Not sure what to do but the prospect of having this for 10 years is not fun! I have an appt with MO end of month, but anticipate they may call and postpone due to the pandemic. It doesn't help that I am now working from home 4 days a week, and don't have much to do, since everything is on hold. Any other tricks to help with the pain? Hang in there everyone!!
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