Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.
Posted on: Nov 26, 2007 12:02PM - edited Nov 15, 2017 10:59AM by Moderators
ashaby wrote:
Dear All, (and Layne are you there?)
Got my Tamox today and will start in a week. Where are my tamoxi pals? It says weight loss for one of the side effects. Now that's a good thing. Basha
Edited by Mods to add content from the main Breastcancer.org site's section on Tamoxifen in Pill Form (Brand Name: Nolvadex): Benefits, Side Effects and More
Posts 30121 - 30150 (30,172 total)
Oct 4, 2019 08:47AM BlueGirlRedState wrote:
Runor - not a camera, but some kind of sensor that could detect how strong my muscle contractions were. Could watch a wave on the screen. Very cool. I do show some strength, but need more, and I tend not to completely relax (at least between reps when doing the exercises). Not relaxing makes the exercises a little less effective, and may contribute to frequency/urgeny
Oct 7, 2019 09:13PM - edited Oct 7, 2019 11:41PM by ndgrrl
Has anyone had the Breast Cancer Index Genomic test ran?
My Oncologist had me get the test and it came back a 2.5% chance of late reoccurrence and it said Tamoxifen is of little benefit.
I am 100% ER & PR +. braca 1 and 2 negative with a strong family history of cancer including BC. (4 of us diagnosed with BC in 9 months time) I was 44 at diagnosis. Stage one Grade 2 IDC of 1.4 c. I had Onchotype Dx of 18, no chemo(though my new Oncologist says I should have had it) I had internal Brachytherapy Radiation. I had I am 6 yrs out now.
I've had a hysterectomy, tried Armidex and Letrazol and the side effects were not good, so placed back on Tamoxifen.
My Oncologist says its up to me if I want to continue until year 10 on Tamoxifen.
He says that the Breast Cancer Index test is quite new so he is unsure of how many Oncologists are relying on it.
I am so conflicted so wondering if anyone else with stats similar to mine has tried that test?
Oct 7, 2019 09:58PM runor wrote:
ND, how do you feel about this? Do you feel it is pointless to take more tamoxifen? Do you feel it puts you at high risk for other side effects, most of them quite unpleasant? Do you feel secure going without?
I was VERY reluctant to start tamoxifen. It was a huge inner battle. In the end I didn't want to die. I see it this way. There are 4 bullets that we have to shoot this damn cancer. Surgery, radiation, chemo and hormonals. My Oncoscore 11 said there was no benefit to me to take chemo. Hooray, no chemo. Boo, one less bullet to shoot the cancer with. I mean, if you want to kill something you shoot it full of as many holes as you have bullets. I was down to three bullets. That left surgery, radiation and hormonals. So while I was not happy to take tamoxifen, to NOT take it would have removed yet another bullet from my arsenal.
You have done 5 years of the drug and if the benefit to you is low and you have had enough, then you have had enough.
Me? I have completed just over 2 years and I wonder how I will feel when the 5 years are up. Will I feel like Linus with his security blanket yanked away?
I think you need to question your doc more about why he feels you should have had chemo with an Onco score of 18. Some docs at 18 say chemo, others seem to say no chemo. I'd want to get a really clear understanding of my pathology report and what prompts your doc to make that comment. There might be information there that could help guide you about future choices. Good luck with this.
Oct 13, 2019 12:31PM Krissie2430 wrote:
I’m laying on the couch right now because my knees are killing me! I started off googling to see if I could find relief but ended up here. If I can’t find relief, I know at least y’all will understand. I had a double mastectomy 8/13 and have been on the tamoxifen for a little over a month. I’m used to getting up in the mornings and not stopping until bedtime and I’m hoping my lack of energy is from the MX and will come back at some point. The knee pain tho! If I don’t figure out a way to ease it soon, it won’t matter if I get my energy back because it hurts too bad to get up.Oct 13, 2019 01:06PM DorothyB wrote:
My medical oncologist (MO) wanted me to take 20 mg of tamoxifen daily for 10 years. He wanted me to start w/ 20 mg and then deal w/ any side effects. After lots of reading as well as talking with a few people, I opted to ramp up to the 20 mg slowly.
I have gotten up to 12.5 mg / day and was ready to move up. Since I opted out of chemo, I felt like it was really important to do the hormone therapy.
However, in the meantime, it has become harder and harder for me to do anything. It kept getting worse. I can spend 10+ hours in bed and still be exhausted. (some of that is sleep apnea - working on getting that diagnosed now) Then I get very little done during the day. I can barely keep me and my animals fed and my bills paid (without doing healthy eating or keeping budget updated or house clean).
After re-looking at the research and various projections and discussion w/ a friend, I decided to go back down to a flat 10 mg / day.
Fri was a 15 mg night, but took just 10 mg since that is what I am doing now.
Sat I realized that it would take me until Dec 1st to get down to 70 mg in my system if I just starting taking 10 mg / night. So last night I didn't take any tamoxifen at all. Then, since the effexor is to help w/ side effects of tamoxifen, I decided to just not take that either. (will see if that was a mistake as time goes on)
When I woke up this morning, my mind was clearer than it has been in a long, long time. It is like I felt like I could do things. I am still a little tired, but my mind is totally different! My blood level now that I skipped a pill is almost 72. It will be 70 if I stay at 10 mg / night. The last time it was below that was Aug 12 when I was in Panama. The metabolite level is over 10% of where it will be eventually, but is the lowest it has been since the beg of Sept. I'm hoping if I keep doing just 10 mg, I will keep feeling like this. I knew I was getting less & less effective at doing anything other than feeding animals & me, but didn't realize how much it affected me because when it was lower in Aug & before, I was still recovering from radiation and coming to grips w/ having cancer, etc.
Oct 13, 2019 02:25PM - edited Oct 13, 2019 02:26PM by edj3
I've stopped taking tamoxifen, at least for now. I've posted elsewhere that on about the 10th day of taking tamoxifen, I noticed my heart rate spiking a lot during my runs. As I see it, there are probably three possible causes to this (which has only gotten worse):
So that's where I am now.
My run this morning was a disaster, I spiked to 187 within 1 1/2 miles (believe me, that's not normal--my normal heart rate on my runs is about 154). That's dangerous. So tomorrow I'll drop a note through the portal and let my MO know what's going on. I'm sure my concerns will be dismissed, but maybe not. In the meantime, this drug should be out of my system in a couple of weeks so that will be a good way to check also.
Oct 14, 2019 06:25AM Lezza13 wrote:
Krissie2430 Sorry to hear about your knee pain.. I take Move Free Ultra as a supplement for my knee pain. It seems to do the trick and I have been taking it for years. It would not hurt to try. I did not think glucosomine worked at all. I put tumeric on my food as well. Also take it easy since you are only 2 months out. This is my 7th year on Tamoxifen 20 mg. Perhaps you could split your pill like so many women on this thread have done, 10 am and 10 pm. Besides my knees, the only other pain I feel is in my wrists at night. Oh, and those stupid hot flashes. Hang in there and take care
Oct 15, 2019 08:15AM kcrd4766 wrote:
Yes, sorry to hear about your knee pain. One thing to note is that turmeric taken orally in a hydro-soluble form absorbs better than forms applied topically or on top of food.
Oct 16, 2019 12:58PM DeeBB wrote:
Good afternoon!
Has anyone stopped taking Tamoxifen for several months and still experience fatigue? Not so much being tired all the time but a weak feeling.
Oct 31, 2019 01:15PM lynae23 wrote:
Hi ladies,
First let me say HAPPY HALLOWEEN :) Well I was tired of being tired and fat so I stopped taking my tamox for a month and honestly I did not notice any difference & it did make me nervous not taking it....soooo I just started back a few days ago. I am just tired of being tired all the time which then keeps me from wanting to workout before or after work. I have also put on about 15lbs in the last 2 years from all this and I am just like BLAH lol. My doc wants me to stay on it for TEN years...ugghh...then I will be 51. It's so hard to know if it's worth it or if you will be okay without it...I really struggle with thinking that sometimes myself. I had a full hysterectomy after my double mastectomy so I think my body is just all out of whack and my stomach has gone from being mainly flat to nice and hard and round :( I heard commercials about taking Estroven which is supposed to help with the menopause symptoms (and I assume may help with the tamox) so I am getting some today and will try it out. Have any of you taken any menopause relief pills that worked or helped ease some of the symptoms?
Oct 31, 2019 01:18PM DorothyB wrote:
I was only up to 12.5 mg / day and skipped one day. I could tell a HUGE difference in fatigue and mental clarity.
I'm still doing 10 mg / day
Oct 31, 2019 01:58PM Pi-Xi wrote:
I went off tamoxifen two weeks ago for surgery and within 48 hours of the last pill the difference in mental clarity and energy was astonishing! I will be starting up again in a few days, but it is going to be tough. I’m still me under all that craziness. 😢
Nov 1, 2019 12:27AM WorryThePooh wrote:
Pi-Xi, yes we're all still 'us' in there somewhere. I find that comforting to reflect on when I'm feeling a bit Tamoxifen crazy.
Nov 1, 2019 05:28AM edj3 wrote:
Still on pause while my heart rate issue gets sorted out. My PCP has ordered a stress echocardoigram. And I noticed that my blood pressure has gone nuts--historically I have low blood pressure but in the last week, it's been in the 140s (I'm usually 110) for the top number. Now I wonder if the Prolia is affecting me there, an increase in blood pressure is a common side effect.
This just sucks.
Nov 1, 2019 02:32PM DeeBB wrote:
lynae23: My MO advised taking a pills that are called 'AM PM for menopause. They did seem to help, I had to get them on Amazon or Walgreens did say they could order it
Nov 1, 2019 06:40PM WorryThePooh wrote:
I've been on Tamoxifen only one month, but I find it makes me need to pee more often and more urgently! Very annoying in the middle of the night, plus on road trips. Going on one tomorrow and feeling a bit anxious about this issue.
Nov 1, 2019 11:05PM runor wrote:
WorryThe Pooh, ugh, the pee thing. Lately by the time I realize I have to pee, I AM peeing! My bladder just gets on with the business at hand no matter where I am. Pisses me off. Ha ha, bad pun.
Nov 2, 2019 05:14AM DLRF wrote:
Hi everyone - this is my first post.
I am 43 and just told I have an almost 1/2 chance of lifetime cancer (technically 43%) due to a robust family history, many pre-menapausal (two great grandmothers, two grandmothers, two aunts). My BRCA 1/2 tests were negative and my last genetic test showed nothing else causative (although a new test is pending).
I'm a widow and recently remarried to a wonderful widower. As you might imagine, I want to be around as long as possible for him and or my son and step-kids. I also have two friends (my age diagnosed with stage 4 cancers this year).
I saw my first BS this week and she is wants me to consider tamoxifen - as does my mother who was in the trials in the 90s. I have been living with this specter since I was about 15 and realized the cancer in my family was more than most and that meant I had a good chance of developing it too....I know this is going to be challenging, but I feel like I have finally been given the green light to be really proactive and I need to do that for my own mental health.
So....
DLRF
Nov 2, 2019 05:38AM Cpeachymom wrote:
dlrf- wow! Those are some scary numbers! You say cancer but did not specify if those were all breast cancer or other cancers too. Cancer also runs strong in my family, and I always assumed I’d get it, just never expected it to be breast cancer, and not at 39!
Anyway, assuming those are breast cancer, it makes sense to at least try the Tamoxifen. You can always stop if you develop bad Side effects. There are a few serious side effects like blood clots and endometrial cancer to be aware of.
If it was me, my logic tree would be something like-
If I don’t take it and then get cancer- how will I feel? If I do take it and then get cancer- how will I feel? If I try it and then have to stop- will that make me feel better? Etc...
Keep in mind Tamoxifen is not a guarantee, just an insurance. I wish you the best and may those odds fall in your favor!
Nov 2, 2019 05:47AM Rah2464 wrote:
DLRF sorry you have such a strong family history - my fam is riddled with cancer as well, all types. Really glad you are thinking proactively.
For me, Tamox is a very difficult little white pill. I have a complex relationship with it. I would be very interested in what your MO has to say about dosing levels. Can you get the preventative effect with a very low dose so as to avoid a lot of the side effects (some lucky souls don't have these)? 20 mg is a beast for a lot of us. Heck for some 10 mg is rough it is so individual. You may want to discuss genetic testing to see how well you would metabolize T as a lot of medications utilize the same pathway. I am an intermediate metabolizer so I have to really watch any additional medications. I would also want to know how long would the plan be for this protocol. 5 years? 10? until you hit menopause?
The other thing I would be curious about is what is your monitoring plan. Would your MO consider having a baseline MRI to check your breasts thoroughly. Not sure if you have dense tissue or not, but mammos and ultrasounds are not 100% diagnostic. And would increased monitoring perhaps even offset the need for tamoxifen? Or perhaps reduce the dosing to a tolerable level?
I wish you the best at this meeting with your MO, and I hope you find a strategy that works for you.
Nov 2, 2019 06:39AM flashlight wrote:
DLRF, If you are on birth control pills ask how long you need to be off them before starting Tamoxifen. I agree with Rah2464 ask if you need to take 20mg.
Nov 2, 2019 11:48AM DLRF wrote:
Thanks Rah2464 and flashlight
Apologies for leaving out some of the details -
Family history of breast cancer includes 2 great grandmothers diagnosed in their 50 assume pre-menapausal - 2 grandmothers both diagnosed in their 40s - one had a second primary site later. My two paternal aunts, one was early 50s and pre-menapausal and the other was post in her 70s. Family history also includes some melanoma (dad, grandfather), colon (one of the grandmothers) and esophogeal. Lordy - its a lot.
The BS is definitely upping my monitoring quite a bit. I will be getting an annual mammogram (which I have been for the last 5 years or so), an annual MRI, and a bi-annual breast exam with her. Re: density, I am "super" dense and fibrocystic. In fact the BS made sure I was clear that she does exams all day long and I am on the top end of the spectrum.
I also failed to mention I had a hyperplasia years ago removed. It was not atypia.
The BS said the tamoxifen would reduce my numbers by half if I stayed on the full course. I guess I'm wondering if this is the right path...if I will still be 20+ percent. I know there are more radical options which are also not perfect solutions....
Anyway, thanks again for the advice...
DLRF
Nov 2, 2019 02:39PM flashlight wrote:
DLRF, If you have been treated for hyperplasia ask your GYN if this is considered a diagnosis for you. If so, you can't take Tamoxifen. Tamoxifen causes your lining to thicken. It sounds like you and your doctors are on top of things. I understand about the radical options and I think you can question it and get a thread of others making this decision on this site. Wishing you the best with this difficult decision.
Nov 2, 2019 03:15PM Beaverntx wrote:
runor, re the "pee thing" you are absolutely correct! I've given up and wear a pad every day, got tired of having to change clothes. Some days don't need the pad, others have to change it once or twice. I can deal with this, so far. My bad days are when the fatigue and brain fog hit together and I am so lethargic that practically nothing gets done and I don't even care (until the not getting done catches up with me)! Those are the days I seriously consider quitting but have not done so yet. Will be having a discussion with my prescriber this month when I see her.
Nov 3, 2019 09:21AM rljes wrote:
Hi Everyone, I still have not started Tamoxifen. Its been a year since I've finished Herceptin/Chemo. My Hot Flashes are so horrific so violent they are controlling my life.. I had a hysterectomy over 30 years ago. Took Estrace pills until DX stopped Estrace immediately- that's when Hot Flashes began.
iynae23 - I would like to hear how ESTROVEN works for you. From what I have read (mayo Clinic) that Estroven contains Black Cohosh which interfere with action of Tamoxifen. I guess I'm being a little selfish, since I'm not on Tamoxifen, I am wondering if it helps your hot flashes. I have been given : Paxil/Effexor/Gabapentin, Oxybutinin & Clonidine - which none worked.
I've been approved with my Health Ins for SGB injections (stellate ganglion block) (Google MayoClinic) its to reduce hot flashes - the only DR that is qualified in my area is too far away. My OBGYN suggested BELLADONNA but it sounds pretty scary. (via Amazon.com)
I think I will go to the Health food shop and just buy the Black Cohosh.
Everyone's advice would be appreciated!
Nov 3, 2019 01:29PM Mymomsgirl wrote:
DLRF I saw that you mentioned genetic testing, I have found a lot stop at the 2 main Gene's. I have a family history as well and was just waiting for that shoe to drop. When I was diagnosed I had the 9 high risk Gene's tested and 38 mid risk Gene's tested because that would impact my surgical decision. Ironically I'm more apt to get colon cancer versus breast cancer. Hope your appointment goes well.
Nov 5, 2019 01:32PM FindingOptimism wrote:
Looking for some insights on Tamoxifen driven hair loss. The website suggests that it slows down markedly after 1 year on tamoxifen. I wondered if people had found this to be true? I am getting a bit tired of the vacuuming and it is a bit unnerving.
Nov 5, 2019 02:56PM Beaverntx wrote:
Can't say I noticed a slowdown until several months after starting to take Biotin. It does seem to be a bit better now.
Nov 9, 2019 08:35AM Lezza13 wrote:
riles I think you should try Black Cohosh or Estoven. It works for some for awhile. I tried it for a time as well. Please return and let us know how the injections work. That is new info to me. Perhaps you could start on a small dose like some of these ladies. If not I understand until those hot flashes ease up. Have been on Tami for 7 years now and I do not like the hot flashes. None of those drugs you took worked for me either. Good luck.
Nov 14, 2019 09:03PM molliefish wrote:
Here is an interesting tidbit from Canada. Apparently there is a tam shortage in Canada and our gov't had asked for and will be receiving a bulk supply from the US to see us through. Guess I best count those tabs that I have left.