Tomoxifen-Terrifed!!!!

Anne2871

Hello, Tamoxifen was prescribed to me last week after completing radiation almost a month ago, but I’m scared to take it! Given the social isolation and difficulty with emotions, I’m concerned for my mood and possible sudden menopausal symptoms. Also, I am concerned that if I have any issues, I don’t want to go to a doctor’s office. I am probably kicking the can and procrastinating. Additionally, my med onc prescribed it, but I didn’t go to my post-rads appt bc of virus scare. Doc cancelled all non-urgent appts. Does anyone know how long I can procrastinate and still be in the window of effectiveness? I have a low oncotype score (16), lumpectomy removed with clear margins. (6mm IDC tumor). No lymph activity. I still want to take hormone blockers. Peri menopause, so tamoxifen it is. I would like to wait and see my med onc (or video session), but that’s not going to happen for a few week. Anyone else delay? Help!

Palesa2018

I understand your apprehension especially under the current pandemic circumstances. You might not have SEs or they could be very mild. I personally have only had hot flushes (I am also on Zoladex) and no ther SEs. There are others who have had a tough time and eventually settled and others who didn't. But it is the standard of care and has saved many lives so give it a try, use these few weeks so that you have feedback for you MO. My theory is to starve any CTCs of any estrogen.

Take care and all the best.

Anne2871

Thank you! Maybe I will take tomorrow. Do you take in the morning, afternoon, or evening? Why do you take both Zolodex and Tomoxifen?

Thanks for the info. I have to stop with google

Palesa2018

I take Tamoxifen in the late evening just before I sleep. I get a Zoladex shot every 3 months. I am 40yrs old and not menopausal hence the Zoladex. Remember Zoladex is for ovarian suppression to stop ovaries producing estrogen, all in the attempt to reduce overall estrogen in the body. Tamoxifen on the other hand prevents cancer cells from absorbing estrogen, wherever it may come from. So the two serve a different purpose and multiple studies have proven the effectiveness of the two prong approach. Ask your MO about it next time.

Take care

gb2115

I've been on tamoxifen for 3 years. Honestly I would not be afraid to start taking it based on the reasons you stated. If you get a side effect you need to discuss with them you can probably just handle it over the phone. Or you can just stop it. Tamoxifen doesn't need to wean or anything you simply stop taking it.

Not everyone is the same but I didn't have SE until a couple of months in, and that was just flashes and oddly timed periods. Neither a big deal. The SE that bug me (but I can still live with) took over a year to manifest.

You're going to be ok!!

Rah2464

Anne bless you I hope you give the medication a try. You won't know what side effects ( if any ) you will experience until you start it. I am on month 21 of the meds and doing ok. My oncologist wanted me on it within four weeks of my surgery. I take mine at night just before dinner. I wish you well!

Ingerp

There’s a bunch of us on another thread who started an AI around the same time and many of us started at half dose, or every other day for a few weeks. That seemed to help with SEs. My MO wasn’t in any rush for me to start—given you’ll be on it for five or more years, I don’t think it’s that important.I finished chemo in early August, went through rads, and started the AI in November. Some women tolerate it better with food, and some have reported sleep issues when taking it later in the day, so I take the AI with my first meal (late morning). I know it’s a little nerve-wracking, so pick a day when you’re going to take the plunge. How about April 1st?

Anne2871

Thank you so much, ladies. I will be taking it this evening! I understand that the benefits outweigh any potential risks. I was being an alarmist, and worried about having a blood clot (I have a bleeding disorder, but hasn’t been much of an issue unless I have surgery) or a stroke (I have hypertension, but it is well controlled with meds). I don’t want to be near a hospital now. I think that I was looking for excuses, and no time like the present. I live in Miami, so I’m used to being hot. I’m already gaining weight due to being on lockdown. Cranky from being with kids 24/7...so I may not notice any potential SE!! Thank you so much for taking the time to respond to me. 🙏🌸

Badluckbdaygirl

I too was terrified to start it partly because I’m prone to anxiety. I waited (delay in Oncotype), a few months after surgery and the MO said that was fine. Our tumors seem similar so a small delay shouldn’t scare you.

I started with 10mg for a week, then 15mg for the next week, and am now on 20mg. Knock on wood, no real side effects yet. I’m only about 5 weeks in though. Maybe start by taking half? I didn’t ask my MO, I just did it😂

ReeaRite

I am starting tomorrow on 20mg Tamoxifen, now thinking I might cut the pill and go 10mg for a week or two and then start the regular dose. I will take in the evenings as I usually skip breakfast. I was really worried about taking it, but rads are delayed until summer for me due to the virus situation.

Lezza13

Just my opinion: I have heard reading other threads thatsplitting the dose, 10 in the am and 10 in the evening was a benefit for most women. I have been on 20mg a day for 7 years now. I take it in the morning.First I was afraid but I realized I had to. Then I found out the hot flashes are the only SE that is annoying. There are other threads you could look in to lessen all fears.

Badluckbdaygirl

I made myself terrified by reading the negatives. I knew I wanted to get to 20mg at once because it seems the most effective. I see people ramping up for months. I thought I could ramp up, just in a shorter fine frame. I know this pill affects every differently. I try not to think about it and keep moving throughout the day. I also don’t eat breakfast, so I take it with lunch.

Salamandra

I think it's a good idea to start on a lower dose of tamoxifen and ramp up.

For some women and some side effects it won't make a difference at all. For others it will be helpful for better understanding and accommodating their body's response to tamoxifen. I don't see how it can hurt.

I leaped straight into 20mg tamoxifen because I've never really had bad side effect issues with other drugs. And I did it while starting radiation. It turned out that the two main side effects of tamoxifen for me were also pretty common radiation side effects, and it took me way to long to realize that I should blame the tamoxifen instead. I think that if I had started differently, it would actually have taken me less time and fewer wasted months of struggling for minimal functionality to figure out that I basically cannot deal with tamoxifen at any dose that's even available in solid form.

Wyfreak

Be careful Tomoxifen my mom took for 4 years and now damaged her uterus she has a thickening caused by it now she is off of it. Read warnings it can cause endometrial cancer . She is having a hard time cause tomixifen kept her from breast cancer reaccurance . There are many other options for hormone blockers. Talk to Dr about other meds and do research.n

AliceBastable

Wyfreak

And other estrogen blockers can cause other problems like bone deterioration. Nearly every medication has possible risks and/or side effects, and the patient and doctor need to discuss those before starting any prescription.