Has anyone felt BETTER on tamoxifen?
Comments
-
Miss m-Great news! Such a relief to get through a yr. This consumes so much of our time and minds. Big giant HUGS all around!
0 -
Congrats ms m ! Mine is coming up in september so hoping for the best as well !
Well I have been on tami for 3 months now - good news is side effects are not severe but they are annoying . One positive result is that I have clearer skin ! I've lost weight but that is mostly due to my road cycling 2 x a week and walking 2.5 miles every day I don't cycle .
Bad effects are I wake up in the am feeling very stiff . I also have the typical hot flashes - mostly at night but a few doozies during the day occasionally . Overall I am thankful of a medication that can help me ! Wishing all of you good health and fun times
0 -
Sandra60,
Good luck! I am also hoping you have get good news in September! My skin cleared up as well! I am glad to hear it wasn't just me. Yeah, the stiffness in the morning does stink! A hot shower seems to help get things moving smoothly again! Aleve helps me on a really bad day.
One question for all of you..
When you have a hot flash during the day, do you have to sit down for a few minutes and get you balance again? Sometimes I get a little dizzy with them.
0 -
miss-marsha-Yes, I have felt light headedness and a little dizzy with a hot flash especially at work. At home I can sit and recover but I am a nurse in L&D and not always able to catch my breath. I try to get away but in a delivery I can really get hot fast and just try to get through it. I have noticed a decrease in the number of hot flashes lately. I am 3+ months in now and think the SE are decreasing. But, have not had period since starting Tami. Don't know if I was just going into menapause any way(54yo) or bmx and Tami decreased the estrogen that stopped the periods?? Not complaining, just wondering if it will sneak back up on me or not.
I have some stiffness in the AM as well, really blamed the TEs and not sleeping well or able to get comfortable at night, never thought about the Tami! Aleve works for me as well, less meds to take while at work too. Overall not much difference. Still loosing wt about 2 lbs a week. Needed to loose some anyway, new clothes and bras are in my future!0 -
Find this thread very interesting. I dreaded starting Tamoxifen 6 days ago, but to my surprise I felt almost instantly better. I had been absolutely exhausted post-rads, but my energy levels have experienced a big boost. The only real side effect so far is night sweats. Great to hear from those of you who are at least several months out and still doing well! I'm taking the Watson brand of Tamoxifen, by the way.
0 -
Caitlin61-Welcome glad you joined us. I like this thread as it gives everyone a good persective on tx-Tamoxifen. I was scared thinking it would be another thing to battle in this fight but with the positive things but when i read others were fine, I gave it a try and have been ok with it. Night sweats are the most annoying so far and I can live with it.
0 -
I am 4 plus months in and on 75 mg Effexor - hardly any nights sweats now. Also no period since May - hooray!
0 -
The good news is for you ladies who just started: a lot of folks have flashes that wax and wane. Mine will kick up for a bit, then I get respite for a few months. I've been on Tamox for 2+ years now, might go for the 10 years depending on what they say at my 5 year mark. I'm a youngish survivor, I bet they will recommend I motor on.
I feel better mostly because I can sleep at night knowing I'm doing something to address my cancer.
0 -
Hello everyone....so happy to find a positive site re: Tamoxifin. I have been on Femara since June 2012 & by November 2012 was having constant pain. We winter in Florida so I put up with it until returning home this spring. By the time I saw my new MO I could barely walk I was hurting so much. Took a month vac from the Femera & became my old self again....painted our entire condo in a week & have all my old energy back. Have started swimming again (my exercise of choice) & have been so much happier. Makes me want to take my chances & swallow nothing.
My MO has started me on Tamox. & tells me I will have no pain. So far, although it is very early, only day 4, no changes other than being a little tired & stiffer than usual in the morning. Once I am up & moving around it is not too bad. Have not even had a "heat wave" although they were not serious on the Femara.0 -
Not starting tamoxifen for another month or so and I was VERY nervous about it ... Thank you for this thread. Makes me feel a little better!
0 -
I'm still having very few problems on Tamoxifen after 3 weeks. Certainly I have more energy than I did previously, but some of that is likely due to recovery from chemo/rads.
0 -
Honestly, I don't remember how tamox made me feel, I know that it didn't work for me and my hot flashes were horrible, still are. I stopped having a period just a short time before my first treatment. I am on cymbalta, and it helps with depression and pain. I seem to manage it quite well. I just had my first treatment of the "red devil" this past wed., haven't been feeling too good though. Has anyone else been on it, and did you lose your hair. I have been battling for 5 yrs, so I've lost my hair before, and I actually liked it, went comando, didn't care what anyone thought, besides I live in Tx, it's hot! This time though, I was hoping to keep my hair.
0 -
lilsiskathy, I was on TAC, where A is the red devil. I did lose my hair... everywhere. There are advantages to never having to shave. Hang in there!
I feel better on Tamoxifen than on Femara, but hot flashes are worse. It could be because I am only on the 10mg dose, the feeling better, that is. Or because it's been years since chemo.
0 -
I've completed 4 months of Tami and haven't had a period yet! Was probably close to ending them anyway. The fatigue is the worst, SE. Had more hot flashes to start but have decreased some now. Noticed more joint and muscle weakness, making me more fatigued. Overall not bad SE able to make myself work through it. Want to get better and never have BC come back!
0 -
Mamasixtaz - same here - no period since May!! Yay! I definitely have some big time joint pain, but could be due to showing my 3 yr old granddaughter how to hop scotch. Very bad idea. Someone else said that were choosing to ignor any SEs. Me too!
0 -
No I doubt anyone has felt better on Tamoxifen. I just went back on it and already feeling some side effects. Loss of appetite mostly which I believe others have complaio ned of weight gain. I too suffered from migrains that came right after my periods. Going into natural menopause at age 45 totally got rid of the migrains.
0 -
Hello Ladies,
I am new here but wanted to chime in. I am not on tamoxifen right now. Had to come off for chemo and rads and will start back after that. Way back at the beginning (it was only last April, but seems so long ago this started) it was decided I would do surgery before chemo since lobular usually doesn't shrink from chemo. Trying to get a date that the BS, PS and I could all be in same place at same time took a while so I asked to gnomon tamoxifen while I was waiting. I was going nuts not doing anything. If they told me to take a tic tac and it would help I probably would have!
I was on for about 7 weeks before surgery. I didn't have any SE to speak of. I did notice however that the tumor/lump was getting softer and smaller. My husband and surgeon agreed and assured me I wasn't losing the rest of my marbles! My surgeon also told me after my mastectomy that the cancer was being changed by the tamoxifen. I like to think of it as choking and starving it to death! My pathology numbers were better than the original biopsy also. The Ki-67 (proliferation rate) had even dropped.
So my long winded message is to say that some of the SE suck and are really bad for some but hopefully that means it is doing its job well.
Great weekend everybody!
Lynne0 -
Lynne - That is so awesome! I'm so glad you shared that. Thank you. When I get a really bad hot flash I say to myself "Yay! It's working!"
0 -
Thanks! Right now I am not on anything because of surgery Wednesday and then rads. It is driving me crazy because even if I am just swallowing a pill once a day I feel like I am fighting back. That is if there was anything left in there to fight, which there is not!! I have complete faith the surgeon put it all on ice and the chemo swept up the crumbs! But I still am ready to start taking it again.
Hope everyone is having an awesome weekend0 -
4sewwhat-Thanks for the encouragement! I have been taking Tami since May and have had more SE in the last month. Increased spotting periods returned so went for the endometrial biopsy
, but wasn't too bad. All was ok just hormonally depleted cells, figure that! I figure it is worth it too as I never want to have any chance of recurrance. You are an inspiration! Wishing you the best on your coming surgery and happy returns to the Tami.
0 -
Good luck on Wednesday, Lynne!
I've been on the Tami since April, and started noticing more side-effects about a month ago too, but nothing too bad. Mild hot flashes, occasional vaginal dryness, and I've been shedding more than my dogs! Fortunately I started with pretty thick hair, so the thinning is only noticeable to me - that plus my nails have started breaking more easily. I have noticed though, that after about a month of this, the hot flashes and dryness are becoming less and less frequent, so I'm hoping the hair/nails gets better soon.
Seems like what few SE's I've had are going away, and even if they don't, it's still nothing bad enough to make me want to stop taking it. I still have the benefit that my menstrual cycles have gotten lighter and longer, and getting rid of the cyclical breast pain was a good thing ... oh, and the anti-cancer effect is good too, of course
0 -
Thanks Annette! Have a great week :-)
0 -
bump
0 -
Hello Ladies!
Just thought I'd check in for an update.
I have now been on tamoxifen for 15 months. I think I have experienced all of the side effects at least once now. I am sorry to say even the "labial cracking"!!!!! (Gahhh WTF?!! ) If this happens to you I recommend Replense it is OTC usually near the sanitary products. When it first happened I went to my GP an got the "Lets treat it like a yeast infection run-around" The topical cream helped very little. After talking to some of my older girlfriends I tried replense. I suppose it makes sense that replacing the moisture will treat the cracking.
I am also happy to report to all of you that side effect did not last too long! The hot flashes and night sweats come and go. We've had some really cold weather here in Kansas this winter, I've actually had a few well placed hot flashes! (LOL! There's my silver lining!) My periods are pretty irregular, and pretty heavy when I do have them. Being 43 I expect it will continue to be like that for a while. I suppose if the cancer doesn't come back, it's gotta be worth it!
I have not experienced excessive weight gain or loss and my hair has not thinned. Kind of relieved about that!
Lets hear how the rest of you are doing!
Marsha
0 -
My onc did some test to see if I am post menopausal but I guess not yet . I'm glad about that because I'd really miss my tamoxifen dreams. It's like going to the movies every night!
0 -
I've been taking Tamoxifen for a little over 3 weeks now. Previous to starting Tamoxifen I did 5 months of ovarian suppression with Lupron as a way to try to protect my ovaries during chemo (I'd still like to have kids someday). Compared to the side effects of the Lupron, Tamoxifen has been a breeze. I had night sweats, hot flashes (hourly, I'd say), major vaginal dryness and dry skin while on Lupron. It was a difficult experience to go through, especially while dealing with the chemo. The only upside was that I felt more emotionally put-together without all that estrogen running through my body. It just improved my mental functioning and I was able to think more clearly.
With Tamoxifen I've only had one side effect, which is some bloating around my stomach. It's not terribly bad and I've noticed that drinking dandelion tea seems to help resolve it but it's the kind of bloat I used to get from PMS. Other than that, no other issues to report as of yet. As with the Lupron, I feel an improvement in my emotional health since starting Tamoxifen. I didn't realize how much my hormones had impacted my emotions all these years but now I can see the difference. On Tamoxifen I've not had any of the problems with joint stiffness, hot flashes or vaginal dryness that I had with Lupron but I suppose these drugs work in different ways - one shutting down the hormonal system and one just blocking the estrogen - and I guess that makes the difference. Shockingly, I got my period two weeks after starting Tamoxifen (it's only three months out from my last chemo and I thought it would be a longer chemopause than that) and it was what I would describe as my normal period.
I'm hoping that if I haven't had many of the side effects of the Tamoxifen yet, I may be able to avoid them. I had read that most people get the most significant side effects early on and if you don't experience them then, you probably won't later on. I hope that's true. I wanted to share my experience here because I was very scared and sad about starting Tamoxifen. I expected the worst but it's been none of that. When I was first diagnosed I was overcome with fear about every step of the journey - surgery, chemo, radiation, hormonal therapy. What I have found is that all of it was easier than I expected, at least the physical part of it. It was still hard and chemo was really difficult but it wasn't as horrible as I had anticipated in my mind. What I've learned is that maybe you should prepare for the worst but not expect it because it may never come to pass. And if it does come to pass, you can deal with it then.
0 -
gildedcage, I'm not surprised you had a period after starting tamoxifen. My understanding is that it works like an estrogen in the bones and uterus but blocks the estrogen receptors in BC cells. So it probably "woke things up" after the suppression from lupron. Glad you're having an easy time of it!
0 -
Ah, that makes sense, gemini4! I've never been so happy to get my period, let me tell you. I guess that's another thing I can thank Tamoxifen for. I'm getting my FSH levels checked next week and I'm hoping this period is a sign that I'm still fertile. Thanks for the info!
0 -
I've read more than once that tamoxifen has been used to boost fertility, so it's important to use birth control (non-hormonal of course) if you don't want to get pregnant just yet. ;-)
0 -
bump
0
