Any positive or "OK" experiences from Tamoxifen?
Comments
-
Welcome, dabbllle! We're so glad you've joined us here, so you can get many different perspectives and hear from many different people about their experiences. We know it's a scary time, but to be able to see that there are some positive stories out there can be invaluable! We hope your experience is positive as well!
The Mods
0 -
Cyborg: I have been taking 20mg of Tamoxifen since April and have, so far, had no side effects at all - no hot flashes, no pain, no depression, nothing. I think that you will see a lot of comments from people who have had side effects as they are sharing their experiences, but I am sure that there are a lot of ladies who, like me,are having no side effects. I feel very bad for people who are having problems with Tamoxifen, but don't assume that it will be a problem for you based on the comments that you read.
0 -
I also have been taking 20mg of Tamoxifen since April and have had some minor side effects like randomly hot flashes, wing mood, weight gain, irregular white discharge that I talked to my onco and requested a gynecological exam but he said that it's not necessary that it's because my hormone level has been changed by Tamoxifen and the problem would get improved over the time. So far, I haven't seen any irregular white discharge. Look like my vagina is back to normal. lol.
However, recently, I have gone through some joint or bone pains easily and more usual. I have had neck and shoulder pains more usual after I wake up. I don't know if it's caused by Tamoxifen or I did some wrong positions while sleeping. I have a good pillow supporting my neck and shoulder.
Anyone experiences the same matter like mine?
0 -
TammyKh---Five year on Tamoxifen and spent pretty much the whole time dealing with joint and muscle pains, vaginal discharge, weight gain, hot flashes, mood swings and pretty much anything else you can dream up. I found lots of water and regular exercise to be the best remedy along with turmeric for the joint pain. After I did my 5 years it all pretty much cleared up. Took almost a year but I feel close to my pre BC self so hang in there!!
0 -
I am glad to add my experience to this thread - as I read all of the bad experiences on this forum before I started Tamoxifen and I was scared. I have been on it for a few months and in the beginning the side effects were horrendous - mood swings, big time anxiety, night sweats and THE WORST was the insomnia. Every night I slept the entire night without waking up was a big victory. I had to basically exhaust myself at the gym if I wanted to sleep even 5 hours. Now it has all settled down and I am feeling great!
One funny benefit that I am so grateful for...I have had problems with adult acne since my mid 30s (I am 48) to varying degrees. It has not been so bad the last few years but I have basically always fought with my skin. No more! My skin looks so great and I haven't broken out with a single pimple in ages (which is a big deal b.c. I used to get new ones daily at one point), even during my period - which I still get. My skin also has a nice glow to it that I didn't used to. I haven't changed anything else so I really think Tamoxifen is helping my skin.
0 -
lala1--- It's great to know that the side effects you had gone through were finally gone. I hope mine would go away after 5 years of taking Tamoxifen like yours. I also drink a lot of water (2-3 litters/day) but it causes me to go to pee a lot, particularly in the evenings when I have to wake up and go to pee 2-3 times/night. I am doing yoga and running that help keep my weight stable, not to gain but not to loose. I don't have any problem with yoga but after running, I recently have had joint, muscle and bone pains that haven't been so bad but very uncomfortable. In general, my life with Tamoxifen hasn't changed much, but I have felt and gone through some "irregularities" in my body sometimes.
mitziandbub… Although I have had many its side effects, a benefit that I don't know whether I should be thankful or not... My periods are getting more regular and lighter. I always had have irregular menstruation since I had it in the first time and it lasted 7 days. However, since I have been on Tamoxifen, my periods come regularly and lightly and last 4-5 days. I also don't have breast pain/tenderness when periods come in.
0 -
Thank you so much to everyone on this thread! I wish I'd known about it before I started my prescription. I'd read some scary things elsewhere.
Today is day 3 for me and I've felt a little bit woozy and lightheaded but so far nothing unmanageable. I hear it can take a long time for SEs to really kick in but I tell myself that every day they're not so bad is one less day I have to take the pills.
Thanks for the tips about turmeric and vitamins. I'll definitely add that, along with exercise, which I should get more of anyway.
0 -
I also felt a little bit woozy and lightheaded in the first months but they were gone away. In contrast, I have felt more and more hot flashes and fatigue without doing anything recently. I guess that it' s time for SEs to really kick in me.
0 -
I am on week two of Tamox. So far, I have a decreased appetite and feel more full very quickly when eating. I'll take that as a side effect. Maybe I'll be able to lose some weight.
0 -
I’m glad I found this thread also. I am going to be having BMX soon, probably in January. Just found out I will not be needing chemo or rads which made me so happy. My oncologist did say I will have to take Tamoxifen for 10 years. I am otherwise in very good health, take very good vitamins/supplements, and exercise, so I’m hoping SE’s won’t be too bad. I know everyone’s body is different, but was wondering when it’s time for me to start this, what is the best time of day to take it? Does it even matter? And is there a big difference in SE’s between 10 and 20 mg? I don’t know yet which one I’m going to be taking.
0 -
Grayskies, we're in this together! I'm also on week 2! Would love to be buddies, haha.
Teslafied, a lot of people say they take it at night to sleep through the worst of the SEs but I've been taking mine at 10AM which has been working well for me so far. Too early to really tell much though. I'm on 20 mg and feeling ok other than occasional wooziness and hot flashes.
Happy Thanksgiving to all!! I'm thankful this year to have found this community, and to be in relatively good health. I hope you all have a peaceful day.
0 -
Been on 20mg T since June 2016 with a failed 5 weeks on letrozole due to debilitating ses. I'm doing ok. I used to have frequent warm flushes and now it's not often. Strange because I'm in menopause since 2015 chemo. My fingers can be a bit painful at times but it may be lingering letrozole effect. Fatigue is the big one. I never got any mojo back after txs and now feel slammed much of the time. I adjust my to do list accordingly. If I feel not bad then I will take care of stuff in case tomorrow sucks.
Ses can show up at any time or come and go or stay or go. No way to tell day to day what it's going to be. I'm on the over 10 year plan with my profile especially since I can't tolerate the AIs. I'm thankful while fatigue is nuts that I can tolerate it. Really have no choice. I live alone.
0 -
Hi ladies,
Originally, I took Tamoxifen before bed, around 10pm but I had experienced sleep disturbance, short sleep circles, hot flashes during sleeping and other SEs. Then, I switched to take it in the daytime at 11am and it has improved my life and my sleep.
0 -
Hello there,
I just came across this thread and wanted to share my experience, because it's been for the most part postive. I have been taking tamoxifen for exactly a year and have had relatively few side effects. The side effects I've noticed are hair thinning (not sure if this is because of the tamoxifen) and difficulty losing weight (luckily I have not gained weight). I also have some leg cramps at night, but they are not too bad. Overall, I really cannot complain.
Has anyone taking tamoxifen had any issues with their eyes? I've read somewhere on this site about some people who experienced trouble with their tear ducts from the tamoxifen. My eyes have been feeling different, so I've scheduled an appointment to get them checked out.
Also, if anyone has any tips about hair, please let me know!
0 -
Hi Agnes, I have been on tamoxifen for a bit...will be three years come March. I have dry eyes and thinning hair. I use Retaine drops for my eyes ($$$ but it helps). Haven't figured out the hair thing but I have a lot of hair so I still look the same so far. But the loss is evident in the vacuum cleaner, lol.
0 -
I have dry eyes, but eye exam last month said all fine other than that
0 -
Thank you gb and Dorothy. I think it's only a very small percentage of people whose eyes are effected by tamoxifen. I am glad you have a lot of hair! If this is our biggest problem, we really cannot complain!
0 -
1 month in and happy to say I've had almost no SEs for the last couple of weeks. I know it's a long road ahead and SEs often manifest last, but so far I'm feeling encouraged and thankful. Happy holidays to all!
0 -
It seems too good to be true, but so far the only side effect I have experienced with Tamoxifen is clear, viscose vaginal discharge. Before Tamoxifen, I used to get similar discharge around the time of ovulation. The rest of the month, no discharge. Now the discharge is there all the time. But it does not bother me at all and probably makes for great lubrication. Soon I plan to start ovarian suppression. I am nervous about side effects with that. But with Tamoxifen, nothing--thank God. I take 20 mg per day, usually just b4 bedtime. When I first started Tamoxifen, I would cut the pill in half, taking 10 mg at breakfast and 10 mg in the evening, because I read that a divided dosage was less likely to cause side effects. I was afraid if I swallowed the entire pill at once, side effects would appear. But I finally got the guts to switch to swallowing the whole pill once per night and still, no problems, thank God.
0 -
hello all I took Tamoxifen 43yrs old after treatment for 5yrs some hot flashes gained some weight but all in all not bad. Praise God now 25yr Survivor this past yr. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast adriamycin cytoxin 5fu. Got married was planning our 2nd marriages at diagnosis. Then 7wks rads and 5yrs on Tamoxifen.
0 -
thank you so much for making this thread! every step of the way since my diagnosis the internet has convinced me im already dead, im going to get lymphedema, my breast is going to burn off from radiation, my endiometrial biopsy was going to hurt so bad id wish i was dead, and now that tamoxifen is going to be so terrible that recurrence will be preferable to taking it
i am holding out hope that like with each of the other things ive gone through so far the tamoxifen will not be too bad and this thread is really helping me to stay positive!
i wish there was an all-positivity thread or forum somewhere, because i understand that people dont come on the internet to tell forums "hi! year two of tamoxifen! still fine, no SE! bye!" it would be really nice to find a place with positive or at least not DIRE experiences to gain a little HOPE from sometime
0 -
I'm 3 months in and so far side effects are negligible. I know sometimes they worsen after a period of time, but I'm still thankful to have gotten this far feeling ok.
0 -
Update: today is my 6 month Tamoxifen anniversary and I'm still feeling pretty good. My hair is a bit brittle and falls out easily when brushing, but I'm thankful that I've had a successful run so far.
0 -
vmudrow, hello this is JCP. I was dx late 2005 at 42 years old. I was premenopausal at the time but the chemo stopped by periods. They had to be sure so they put me on tamoxifen for probably 10 months and then changed me to femara which I had for another 9.5 years. I did not want to come off it at all but it caused osteoporosis and osteopenia and was getting worse. So I came off. Now I'm reading all over these boards that some postmenopausal women are on tamoxifen. I am kind if upset bc it wasn't even offered to me and my oncologist knew how upset I was about being taken off. I had few side effects with either one. No joint pain or hot flashes or anything except some hair thinning I believe w Femara but it wasn't too bad. What state does your mother live in? Was she premenopausal when diagnosed and was on Tamoxifen to begin with and didn't change her over to the general AI for postmenopausal? Thank you for smy help you can give me. I have a chest CT scan tomorrow at 3:30 for area or nodule of calcifications found on chest xray. My asthma dr referred me to pulmonologist who ordered this so she can see it better. I'm afraid but I know that went help. Please say a prayer for me if you don't mind. Any info is helpful! Thank you! JCP
0 -
Cyborg, I had very little problems with tamoxifen . I was on it fir about a year bc the chemo I had back in 2006 put me into postmenopausal state. Then they switched me to femara. Anyway, I had very little side effects on either drug. With the femara I had a little hair thinning but not bad. That was it. No pain with either drug or stiffness or anything. You'll do well if you choose or need to go on it! Good luck! JCP
0 -
singlemom, I hope you find that special guy for you and your child! It is very possible! I have a question to ask you if you don't mind. I have a CT of chest bc they found calcifications on my chest xray. It is tomorrow. How did you know about lungs? I will pray for you and your child. Sincerely JCP
0 -
Abbey11, hello! This is JCP. I am wondering did you go off the femara or whichever AI you were on in April 3019 after 10 years? My onc said I had to go off due to osteoporosis and osteopenia caused by the med and it got worse. I was very upset as I wanted to stay on it . Now I'm reading more older ladies postmenopausal like I am now are taking it and it doesn't cause bone loss. I'm just wondering what you did or not. My onc never mentioned it as an option and I had always thought it was only for premenopausal women.Any thoughts would be great! Take care! JCP
0 -
Been on tamoxifen since 9/2017. It dries my skin out. I was pre-meno and it has thrown me into meno..from never having fluctuating weight I have gained 15lbs in 3yrs. I'm tall so it doesn't show to anyone really but me. The muffin top has arrived and seems to have settled in for good. I also noted that my blood pressure from always being low to normal, has since been high from about 2months after I started tamoxifen. My estrogen numbers are still to high so not officially menopausal.
All in all, doable.
0 -
I know this is an old thread, I read the entire thread,but I’m supposed to be starting Tamoxifen soon (when I’m mentally ready) any recent positive experiences??
0 -
Hi Msespo,
I am premenopausal and was diagnosed with IDC with two involved nodes back in December. Instead of rushing me to surgery, my doctor chose what many doctors are doing in Europe now, and gave me Tamoxifen first, for several months, then surgery. Advance hormonal therapy gives an opportunity to see how the tumor responds and an opportunity to shrink it down before surgery. They checked me every six weeks with an ultrasound, and the tumor and nodes both responded favorably and decreased in size, especially the lump. It was a sneak peek of what I'd be taking for five years.
I have had zero problems with tamoxifen. Even my integrative doctor surprisingly is fine with my taking it. Her cancer patients on it haven't had issues and she doesn't think I'll have any either. I do drink plenty of water daily, I am low carb, no sugar, Juice Plus powdered fruits and veggies daily, daily exercise, I don't eat early am or late pm, etc. I am careful about blood clots when flying or on a long road trip. The ON told me to stop Tam three days before flying, then resume a few days after. I wear a compression sleeve on the affected arm as well as compression stockings, and take systemic enzymes (like Vitalzyme or Vascuyme) which have blood thinning properties and help reduce risk of blood clots from air travel.
I haven't noticed anything at all except hot flashes. Those are annoying but liveable. They might be from the Zolodex (ovarian suppression) they put me on at the same time I started Tam. I just stopped Zolodex a few weeks ago, so we'll see. My integrative doctor wants my periods back for all of the longterm health benefits, and I researched that Tam + Zolodex yields no greater recurrence reduction than taking either alone. I have high estrogen with low progesterone which has caused irregular spotting, so I am now on natural progesterone (Prometrium) on days 15-30 of my cycle which will help clear that up.
That's my long explanation but I hope that helps!
Blessings,
Esther
0
