Anyone Regret Not Taking Tamoxifen

xnygirl

Hi all...This is my first time posting here. I am supposed to be starting tamoxifen and I am very nervous about it. I am on heart medication for premature ventricular contractions. The pharmacy, Mo and heart Dr say there is no interaction but I have been researching this drug and found websites like drugs.com and webmd that say there is a major interaction. Tamoxifen could increase my irregular heart beat. 'm thinking of not taking and going alternative. Has anyone heard of any heart problems being on Tamoxifen? Thank you

MommaS

hi, you posted somewhere on here that your onc didn't give you any other options. I looked into different ones. Not many but here's one.You can take Lupron or something similar to put you in medical menopause and then try the AIs. Sometimes that works better. I am going to try tamoxifen 1st and see how it goes. Then will do lupron and some other ai if I have bad side effects.

Bethane

what symptoms are you having? I just started with symptoms of stabbing uterine pain and feeling like my brain and body were floating like doing a street drug (not that I ever have), weakness and shakey all over. I was taking TEVA pharm symptoms were much worse, now another one. I am only taking 10 mg because my birth mother had mini stroke young and my grandmother died of a stroke. I doubt that I will stay on it as the side effects are ruining my quality of life and my instincts are telling me not to take. My genome testing was 10% chance of return and since I believe my breast cancer may have been caused by taking. Paxil for many years and also Elmiron while in peri menopause.

Bethane

Most of those studies are done by the pharmaceutical companies. My dr can't seem to show me any study that is giving me any confidence. Also, I'm disappointed in my physician group, no one is giving me a Pet scan to see if there is still cancer in my body

jpBCfree

FYI

My breast cancer surgeon, Dr. Kristi Funk (who is amazing) has written a book called BREASTS: THE OWNER'S MANUAL which is a guide to reducing cancer risk, making treatment choices and optimizing outcomes. There is nothing like it out there. I've read a pre-release copy and it's brilliant-- so straightforward and practical-- I wish I had read this years ago and maybe I wouldn't need to be on this board! :0

She offers a free download of one chapter on her website so you can see for yourself...I highly recommend for those of us going through this BC journey as well as cancer-free women to increase odds of staying that way. It's a great mom's day gift for women in your life.

More info and pre-order here https://pinklotus.com/elements/breasts-the-owners-...

gb2115

My MO said pet scans aren't routine in early stage cancer. They don't like to expose you to unnecessary radiation unless they have to. That's probably why you haven't had one. Pet scans use a whole lot of radiation.

MO-Beth

I wish I had read this years ago and maybe I wouldn't need to be on this board! :0

jbBCfree, are you saying Dr. Funk's book addresses how to reduce the chances of getting breast cancer or of avoiding getting breast cancer? Things we don't already know? If so, please share? Thanks!

Mast2017

may I ask what ur se are??!! I've been taking it only about 1 month.

Pumpkin68

I’m actually thinking about not taking tamoxifen. My MO is going to give me two months to regroup after radiation and surgery but I am honestly thinking not doin it. The side effects scare the heck out of me. I stopped the birth control because of the estrogen that has been rough enough!!! Ugh?!?

beach2beach

Hi all,

Just wanted to chime in, yes when you read about potential side effects it's scary. Thats with all meds. Can't say enough that it may not happen to you. There are many who have had none to minimal side effects that have not decreased their quality of life. Ive been on Tamox since last Sept. Just started to experience hot flashes in the past 2months and missing period...but its been tolerable. It's very drying for me, the tamox, but I take it at night, had to pretty much give up all alcohol consumption because it dries me out more, but once again..its doable for me.

I'd say give it a shot, you never know how you will tolerate it.

Paco

Pumpkin68, I hear you. I was pretty freaked out by all the potential SEs coming along with Tamoxifen. To ease your mind, know that it's been 2 months for me and I have had ZERO problems. None of the more common side effects - no night sweats, no hot flashes, no insomnia (that I didn't already have anyway). My hair looks normal, and honestly, I think my skin looks better than it did before.

You might want to try it and see how it goes for you and then decide. Everybody is different and so far, I can say that I feel fortunate that it's been good for me.

legomaster225

Pumpkin68, I started tamoxifen last October and really have not had any bad side effects either. I do feel more thirsty and have had an occasional minor hot flash ( I’m mostly cold actually). I am 52 and my periods stopped as soon as I started preadjuvent chemo. Kinda forced me into menopause I guess. I know you read a lot about the bad side effects, and they are very real for many women. There are many that do not have serious ones though and maybe we just aren’t as vocal -perhaps out of empathy and kindness for those with se’s Every body is different though and you need to find what works for you. You could always try tamoxifen and stop if it doesn’t agree with you.

Pumpkin68

thank you thank you xoxo!!! This helps... I’m really mulling it over.. I told my doctor the surgery and radiation didn’t bother me it was these damn pills.. I may just see how I do!!! Thanks Ladies!!!

Michelle_in_cornland

Pumpkin, give yourself a little bit of time to recover from surgery and radiation. Maybe until summer's end, then start 10mgs of Tamoxifen for a month, add the second 10mgs of Tamoxifen a couple of hours later at bed time. Your body can adjust slowly to the medication and you will feel better about taking it. Have a plan, and then try. I ended up finishing radiation Nov 6, 2016, had an oopherectomy//hysterectomy in Jan of 2017, started Tamoxifen late January. You can spread out the timeline a little bit, to get mentally ready to undertake a new med. Remember, it is not how you start something, it is how you finish.

SCGirl50

I have been taking Tamoxifen for a year. I mostly have insomnia, hot flushes and chills. I am considering stopping but I will discuss with my Oncologist next month. I have had a recent revelation that as long as I am taking it I may not have recurrence, but IF I am going to get another BC once I stop it.......why not sooner rather than later? Idk I feel like I could fight it better when I am younger. Maybe I am just putting off the inevitable. Happy for input.

mbf

It’s been over 5 years now since my original post and I want to share with all of you kind women that posted or asked questions on this thread what my experiences have been in hopes that I can help in some way. First of all, I made it! I stayed on the tamoxifen and made it to about 5 1/2 years (considered trying for 10 like my onc said I should since data suggests 10 is even better, but there is just no way).

My symptoms remained the same for the most part throughout my course of treatment. Once I accepted that I had a new normal as they say, I was at least able to better cope with things and move forward. I had to. I had three my three kids that it really mattered to that wanted to see me stay the course. So, over the past 5 years I experienced joint and bone pain/stiffness, intermittent discharge that forced me to wear a panty liner daily, hot flashes that eventually did decrease, insomnia and tiredness. With lots of exercise and a drastic change in eating habits, plus some life stressors, I did lose weight. I have alopecia areota that has been continuous over the past 2 years or so, but am not positive that that is a result of tamoxifen. I had a total of 3 endometrial biopsies due to thickening of my uterine lining and other symptoms. The third was recent and due to bleeding I was having (have been post menopausal for 3 years so the bleeding was very concerning). I was diagnosed this spring with IBS and since going off tamoxifen my stomach symptoms have improved greatly, so I’m very happy about that because the issues have been a struggle for over two years. Since going off the tamoxifen though my weight has been climbing and daily headaches have been a new experience, plus increased hot flashes. I’m hopeful that these symptoms will lessen though over time and that they are just a result of my body readjusting.

I would say I’m thankful that I lasted the five years, and hopeful that I can now move forward with my life as a regular person and not a cancer patient. This board has been such a support for me and I am grateful to everyone that is on here

vampeyes

mbf - thank you so much for coming back and posting an update. It means a lot when women or even men who are a few years out since diagnosis check back in. I do hope that your new symptoms subside soon!

{HUGS}

becca953

Thank you for the update. Your post is very helpful to those of us who are struggling with it and are new.

katcar0001

I had various SEs that started accumulating the longer I was on Tamoxifen.The SEs were manageable until the end when my mood swings got scary. That was after 2.5 years on it, and then I switched to Arimidex--no more mood swings, crying fits, etc.

Monl

Would you recommend Arimidex over Tamoxifen?

I am dealing with lots of moodswings. Only have been taking Tamoxifen since 6 months

peregrinelady

I have been on both. I was depressed on Tamoxifen until I started taking magnesium. The Arimidex causes muscle and joint pain, but over time that has improved for me, but periodically flares up in different parts of the body.

Monl

Thanks for sharing. Will check on magnesium

peregrinelady

I take it in powdered form (Natural Calm) from the health food store. I believe it also helps with leg cramps.