Has anyone felt BETTER on tamoxifen?
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Thank you to whoever started this thread. It helped me overcome some reticence and get started. It's been a little over a month now and few side effects, and mild at that.
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Thanks, lovestorun! I started it because I wanted to hear from those who might not be having too hard of a time. I don't want to minimize the fact that tamoxifen can be a nightmare for some. However, perhaps going in to it knowing that it's not a bad experience for everyone might help.
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Gemini4
I was very anxious about starting tami too. I read your thread and it really helped alleviate my anxiety. Thank you! I've been on it for a month. No side effects yet😊0 -
Yay, Gertrude! Hope it stays that way for you. I have had success treating my hot flashes with acupuncture, so keep that in mind if you have side effects.
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Just checking in to keep the thread going - been almost 3 months now and still doing well. My menstrual cycle has become irregular (several longer than usual intervals followed by a really short one, and now this month is longer again), but other than that, everything else is either unchanged or improved (sleeping better, less cyclical breast pain).
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Glad to hear it's going well Annette. I finished day 11 of rads today and will start tamoxifen when I have finished 30.
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For people who do report unpleasant side effects, does anyone know when they tend to occur? I thought I remember several people saying the first few weeks were the worst, adjusting to it, but can't remember where I read that. If bad hot flashes/bone pain/weight gain/whatever happen, can they take awhile to appear?
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Youngwithbc,
I've been taking tamoxifen close to 9 months now, for me (of course we are all different) my SE's showed up after about 3 weeks and lasted around 5 months. The worst ones for me were night sweats and constipation. All seems to have settled down. I haven't had a night sweat in at least 3 months and no longer need Dulcolax 3 times a week! I still have a few un-pleasant SE's mainly cramps in my feet and hands.
My weight was up and down and up again. It has now leveled off and I'm at a decent weight again and able to maintain it.
One positive SE for me is clearer skin than ever! I have always dealt with a certain amount of adult acne. In the last 9 months my skin has cleared up very nicely!
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Thanks Marsha. I've actually noticed I've been breaking out a bit, which I assumed was a SE of the tamoxifen because it happened pretty much a couple days after I started it and normally doesn't happen. Weird. Hopefully that is just an adjustment period thing and not a permanent effect! It could also be from about a dozen other things so who knows! I've done almost one week now, and feeling fine
I have had night sweats the past couple days, but I've noticed they're different than the hot flashes I got with chemo where I'd wake up several times a night and feel like I was on fire. Very uncomfortable. This doesn't seem to bug me, I just wake up and realize I've soaked through my shirt.0 -
Youngwithbc,
I'm happy your doing well so far. I was lucky not to have to do chemo, I've heard those hot flashes are really bad! So, maybe the SE's will continue to be mild after that much trauma already! The week after I finished rads I broke out REALLY BAD! My RO said some women do in the month after, she said it could be nerves and our bodies trying to force out all the toxins. I gave myself a week between rads and starting tamoxifen. ( It really bothered me, I've only had to take rx drugs like antibiotics until now!) After I started the tamoxifen my skin continually became clearer. I'll bet in 2 weeks all you will show no evidence of the current break-out!
I don't like having to take this drug...but! I'd take it 3 times a day if it meant I'd never have to schedule for another biopsy or see the inside of a rads room again!
Is it rude of me to ask your age? I am 42 1/2!
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I think Tamoxifen is very important in our breast cancer battle although it certainly has not made me feel better! There is a huge difference between feeling better and getting better - I'm definitely getting better but I feel pretty lousy on my hormonal regime of Tamoxifen and Zoladex. However, I'm only a year into it and hoping it will get better as time marches on. I was pre-menopausal prior to diagnosis and treatment and that makes a difference to response to hormone therapies. I wish you all the best in your treatment. Take care.
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Hi Marsha - yes, everything is relative! Compared to chemo, most things feel like a breeze to me. Even radiation sometimes feels like a fun daily activity because the side effects are so minimal compared to feeling sick all the time. My stats are pretty similar to yours, it looks like. I'm doing Herceptin now for the Her2 aspect.
And no, it's not rude to ask my age
I am 28.0 -
Youngwithbc,
Thats pretty young! Hope all goes well for you and you live a long cancer free life! Wish there was a like button on here like on facebook!
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Hello Ladies!
Its been another month so I thought I'd update and see how everyone else is doing. I've been taking tamoxifen for 9 months now.
I am happy to say all of the bad side effects I experienced in the beginning months have all gone away. Aside from some random but frequent cramps in my feet. I feel really really good! Like before my diagnosis! My periods are more regular than they were before and shorter too. I like that!
Finally! My sex drive is coming back! (It went away after I started rads, so I cant say its tamox)
Next wednesday is the first mammogram since it all started. My diagnosis date was July 31st 2012. I know statistically speaking it shouldn't be back. I'm still terrified!
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Hi Marsha - My night sweats and hot flashes have gotten pretty bad now, even with the Effexor. I think it's made worse by the miserable heat outside right now. I'm almost a month into my first pack of pills, so it took a few weeks for the sweats to really get bad. I know you said yours went away after awhile? That would be awesome... I will hope for that because I don't really want to deal with this for 5 or 10 years!
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I too have been terrified to start Tamoxifen. I filled the script 3 weeks ago, the day I finished rads. I am still recovering from rads and wanted some time to feel like myself again. Aside from all the known side effects I have PCOS and the MO is unsure how the med will effect it. It is a comfort to read all these positive posts. Can anyone tell me if the side effects like hair loss and bone pain are reversible?
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Hi youngwithbc
I think the night sweats were the worst around the 2nd-4th month in. Then they started to become less and less frequent. I don't think I've had one for at least 3 months. A fan can help, I bought the cool pillow at Sam's club. It helps a little but only for about 1/2 the night.
I've been having a few hot flashes lately, but it's been 98 for the high in Kansas for the last 2 weeks. I think the heat is a contributes there. I don't think it will be this way for you for 5-10 years. I think once your body has more time to adjust you'll feel continually better.
Hi Clynn2,
I say just jump in and get on with it. Every body is different for me it was a good 6 months before I didn't need 9 hours of sleep every night.
I personaly have not had bone pain or hair loss at all. Just joint pain and muscle cramps, and those are also much better. I really do think the SAM-e helps with mood and joint pain. And they do have topical solutions to stimulate hair growth.
I hope you adjust quicky!
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Good to hear an up date! I started in May so have made it thru 2 Months and the sweats are the worst. Stopped my periods but menopause was looming so who knows if it was tamox? Fatique is my worst enemy but still with surgery,bmx, lat flap recon it may not be all tami...time will tell, still not unhappy I decided to take it. Hope these small SEs if any resolve over the following months, good luck to all!
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Good morning ladies! I am about 3 1/2 months in and the only se I have are a few hot flashes and a few night sweats. Neither are that bad. I've not had a period since May, but menopause was looming for me as well. I was getting very irritable so I asked my onco to up the Effexor to 75mg. Worked like a charm! Take care everyone!
Miss Marsha - Welcome to year 2!!! Hooray!!!0 -
It's been 3 1/2 months for me, too, and so far so good. Periods are mostly farther apart than they had been (and lighter), but I did have one that came 10 days early - that was a bit of a shock, LOL.
The only other thing was some crampy achy legs, which I don't know for sure was the Tamoxifen, but I started on a B complex and it helped immensely. Oh, and I seem to be a bit more tired at night than before, but on the plus side I'm also sleeping better. Don't know if the tiredness is from the Tam or is left over from rads ... I guess time will tell.
No hot flashes, or other issues at least so far ... knock wood.
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Hi Annette47
It took 6 months for me to get past all of the tiredness and fatigue. Rads totally kicked my butt! I feel great now!
Also one thing I did and hope all of us will do is be kind to ourselves and our healing bodies. I decided to give myself permission to be gentle on myself. I took more naps, went to bed earlier, concentrated on eating well and let my Man pick up more slack. ( OMG!! He was SO wonderful!
) We have all had a rough time and blows to our immune systems. Nobody has to be SuperWoman right now!0 -
I started taking tamoxifen 9 months ago so far the only side effect I have experienced is
Leg cramps. I went on the Internet to see if there was anything I could do about the cramps. One site said to put a bar of dove or ivory soap under the sheet and I tried it thinking oh yeah this is really going to work. But I'll be damned it actually has stopped the cramps.
As for the hot flashes I went on Effexor and that has helped tremendously I take 75 mg before bed. I take 10 mg of tamoxifen in the morning and 10 in the evening.
Another thing that works great for leg cramps is mustard or pickle juice.
Thanks for all the great info on the brands of tamoxifen, I am on the Watson brand
Dayna0 -
Do you all tend to take your pill at the exact same time each day? I try my best but sometimes am a bit off depending on when I go to bed, because that's when I take it.
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Miss-marsha - Thanks for sharing your experience with the fatigue ... makes me feel better to know it might be the rads instead of the Tami, as that way it would hopefully go away sooner!
Youngwithbc - I usually take mine around 11:30pm, but could be closer to 11 or 12 depending, so around the same time, but not exactly. It's the last thing I do before hopping in to bed, LOL.
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Hi there! I just joined yesterday and am about to start Tamoxifen next week. Did anyone have a positive experience with starting the dosage gradually? I plan on taking a quarter dose for two days and moving up or down depending on how my system reacts.
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I started gradually. A 1/4 pill for first five days, then 1/2, then 3/4, then a full pill after 3 weeks. It really did seem to help lessen any side effects, although I have nothing to compare it to!
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ive been on it for 6 weeks now and feel great. Finished rads today. I finished chemo in April.. i am getting some sweats but not bad ,I had a bit of constipation but that is getting better. I have lost about 16lbs without trying and wasnt over weight so a bit worried about that, but my fitness routine is back to pre chemo normal maybe that is it. I see onc this week so will ask her about the weight loss. im on teva brand.
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I have lost weight since starting it as well... after all that panic over putting on tons of weight! I feel maybe my appetite hasn't been as strong on it so that could be it. But since I'm thin, I don't really want to lose anymore so I'll have to keep an eye on it.
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Heeeyyyy ladies!
Just thought I'd let you know my 1st mammo since BC came out all clear! No cancer or calcification! YAY!
God is Good!
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Congrats Miss Marsha!
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