"Tamoxifen Road" - Support and Encouragement

PebblesV

lknewit - I’m 44 and pre-menopausal and hopefully I can provide some reassurance. I was also super nervous about taking tamoxifen as my husband and I only got married a few years ago and I feel much too young to have to worry about menopause (I know 44 isn’t young but you know what I mean!). The reassurance is I decided to give it a go, have been on tamoxifen for almost 11 months now and I’m fine. I still get that time of month regularly once a month for better or worse. No joint pain, I do get warmer at night after I take it but no sweaty hot flashes like others describe. When I met with my MO he theorized I’m faring so well on tamoxifen BECAUSE I’m premenopausal - and so far away from menopause that tamoxifen is not pushing me into it. Remember, tamoxifen is a hormone replacement that acts like estrogen in near every way EXCEPT making breast cancer cells grow and that’s why it’s recommended for premenopausal women.

A couple notes in case it’s relevant to why I’m faring well on tamoxifen with minimal SEs:

- I take a 10mg dose, not 20, which my MO is fine with

- I take it at night

- I try to do yoga and work out and stretch - whether that’s a reason I don’t feel joint pain who knows, but my joints feel the same now as before I was on tamoxifen

- I did have some nausea the first week that went away. MO said it was my body getting used to the new hormone.

- It did take a few months for me to get back to a more regular schedule on my period. My MO said that was common. Again, the body adjusting. I actually wouldn’t have minded having that time of month less often lol, ohvwell.

My suggestion is to just give it a try when you’re ready. And at the 10mg dose to start with. You can then always go up or down on dosage depending on how you feel.

Best of luck!

Mymomsgirl

Iknewit I'm in a similar boat as Pebbles except a few years older, but I'm taking 20mg, 10 in the morning and 10 before I go to bed. I also started with just 10 for 2 weeks, taking it before I went to bed. Good luck!

ipenelope

iknewit- have you had any chemo for your BC? I had AC T treatment then started the Tamoxifen. I think i have been very lucky as I've had minimal side effects compared to many of the ladies on the boards. Im 43 and have been on Tamoxifen since June and I get hot flashes, but nothing different then when on chemo, some increased joint pain, headaches and mood changes. Nothing really bad through. Wishing you the best of luck!!

I hope everyone is doing good and have a great day!!

~Katie💗

32B

Just took my first ever dose after putting it off a long time. Now I'm sitting and waiting for the side effects to take hold. I feel silly for being so scared but I am. Thinking of all of you. Gentle hugs.

Togethertolearn

32B I was worried too, mostly because my doctors, even when asked, gave me NO other option except Tamoxifen. It has been tolerable for the first two months. I treat it as each day could be a different reaction and I'll just have to deal with it. That's a lot less positive than how I usually feel about things. But that's all I can give it, realizing I have to take it for years without any other option.

gb2115

32B....it took me months and months, like over a year to get side effects besides the typical hot flashes and irregular periods. So if you are wanting for side effects, it could take awhile!!

Mahteacher

I would love to have this support down the Tamoxifen road

Moderators

we are so glad to see you all here, supporting each other. Mahteacherl please keep us posted on what decide and how we can best help.

PebblesV

32B and Mahteacher - I was also super nervous about side effects. Am 11 months in and doing fine. I’m at a 10 mg dose which is what might be helping and take it at night.

Mistymn

I am 43 years old I had my lumpectomy on 9/26, SAVI brachytherapy ended 10/25 and my MO wants me to start taking 20mg tamoxifen around 6 weeks after radiation. I filled the prescription for tamoxifen but I am TERRIFIED of the side effects. Everything I've read on this thread seems to show that 10mg works much better for people than 20. I am premenopausal, still like to socially drink and I'm not that big on exercise. I had a 9mm tumor that was extremely slow growing so I'm not sure if it's even worth TAKING the tamoxifen. I was already told if I do nothing else (which she said she doesn't recommend) then I have a 90% chance of no recurrence. If I DO take the tamoxifen she said I'd have about a 97% chance of no recurrence. I'm just so confused and have no idea what to do. The risk of uterine cancer is very high while taking tamoxifen so I'm not sure if the risk is worth it. Also, depression runs in my family in a big way. My father and brother both committed suicide, my mother and grandmother have been on antidepressants and I was on antidepressants most of my life as well. I'm no longer suffering with depression the way I used to but I'm afraid these pills will trigger it again. Any advice would be helpful!

32B

Thanks everyone. I so appreciate this community.

PebblesV how did you luck out and get the 10mg prescription? I asked my MO and he said it wasn't a good option in my case.

Mistymn, I've heard that if you're premenopausal the risk of uterine cancer is much lower because your body naturally sheds any abnormal tissue.

I'm on day 2 of 20mg (only 1,826 more days to go!) and I feel a little head achy and woozy but nothing too bad so far...

DorothyB

Mistymn - do some research on the benefits of doing both cardio and strength training exercises. Doing both has been shown to reduce the chance of recurrence. I've never been into either one, but have committed to both. My blood pressure is going down Also, check your local YMCA for Livestrong which is a free program that I have really enjoyed and has helped me a lot.

32B - I told my med onc that I wanted a prescription for two 10 mg pills per day instead of one 20 mg pill. He did NOT think it was a good idea and said that I would have less in my system splitting the post. I researched later and found that I would have 2% or 3% less in my system - NOT a big deal to me. But, he did give me the 10 mg prescription

TammyKh

I have been on Tamoxifen road for more than 7 months and fortunately just get some minimal SEs:

- Hot flashes that is getting more usual now than the first months.

- Weight gain. But I do yoga 6 days and run 3-4 days with 10k-15k per week to keep my weight stable. I don't expect to loose but not to gain as well.

- Mood swing.

- White discharge.

- Sometimes fatigue, tired, no power, no energy

I don't know whether I can say that Tamoxifen has a benefit that causes my periods more regular. I had irregular periods since I got it in the first time but since I have been on this medication, my periods comes in regularly, exactly 30-32 days, not 35-40 days like before.

32B

I've got another question for those of you who take your pills at night. What time do you do that? Just before bed, or with dinner so you have some food in your system?

DorothyB

32B - I used to take the pill w/ dinner, but I was having a tough time going to sleep at night. So, I started taking it immediately before I go to bed (which means 30+ minutes before usually). I do have something like an animal cracker or a very small handful of nuts when I take the pills. Not sure yet if it helps taking it later.

Vargadoll

I take my 20mg Tamoxifen with dinner.

Togethertolearn

mistymn I also have struggled with depression on and off, and still daily with anxiety. I've been on tamoxifen two months 20mg. I don't notice a difference that I wouldn't see this time of year (SAD) anyways, so it's not be worse. I started vitamin D and a multivitamin, butthe gloom has only begun outside. But I'm encouraged I don't feel even worse!

WorryThePooh

I have also been having trouble getting my tamoxifen scripts filled, traipsing around and being told they have no supplies. Finally found some at a chemist where mainly older people go, so I am now well stocked!

My specialist last week expressed some doubt about whether dividing my dose into 10 morning and 10 night was any use, due to the half life. However he then added it is possible though that symptoms could be worse if taken all at once, due to the concentration at its peak, or some such thing! Anyway I tried taking the 20 for a few days in one hit and wasn't actually expecting any problem, as I'd talked myself into thinking my body has adjusted anyway. However I started getting horrible mood swings and feeling down in the dumps again! Just like before I split the dose. So I'm back onto 10 morning and 10 night again.

32B

Thanks, Dorothy and Vargadoll. I took mine mid morning today and felt ok.

Vargadoll

I have been taking Tamoxifen for 32 months (all but 45 days where I was put on Anastrozole long story) and I have had no major SE. The forgetfulness is the main issue and it was never before. (Have I told you that before I forget 🤣) Anyway, I have had 2 shitty weeks of scans abs test. If you are taking Tamoxifen it is important to have regular eye exams. My eyes are super sensitive to light. (They are also blue and this is common in blue eyes) I started getting my eyes check after I had been on Tamoxifen a year so there's my baseline. I went to my yearly visit 2 weeks ago and was diagnosed with Glaucoma! No one in my family has ever had Glaucoma. I doubt the Tamoxifen has anything to do with it but I sure want to blame it!! Then the next week I went for a pelvic ultrasound and transvaginal ultrasound. Shitty results! The small fibroid that was noted last year has grown and I either have a ovarian cyst or an abscess on my ovary. It will be 3 weeks before I can get in with the OBGYN that I want to see. So while I wait I have to watch for fever, chills nausea or pain. If I experience any of those symptoms I an to go to the ER. Tamoxifen could contribute to the cyst (if it's a cyst) and fibroid. I have a call into my MO and will wait for more information....damn....I was cruising along just fine to good to be true😫

32B

Good luck Vargadoll! Keep us posted!

Babasmom

Hi All,

Has anyone had significant pain in their limbs?

I had bmx 2yrs ago - no lymph node or radiation. Been on tamoxifen for just abt 2yrs as well.

Over the past month I feel like I'm losing feeling in my limbs. Currently pain is pretty bad in my left arm (not the side I had cancer). It almost feels like a circulation problem.

Has anyone ever heard or experienced anything like this? Could it be pain from tamoxifen? I hate to call my Drs every time I have pain.

Thank you in advance for your replies and advice!

Mymomsgirl

Worrythepooh I'm doing the same. I moved to 20 in the evening and the side effects kicked into overdrive so I moved back to 10 in the am and 10 in the pm and my MO is good with it.

flashlight

Vargadoll, I had a D&C this past August the Tamoxifen fed my old fibroid and it turned out to be the source of my GYN issues. Good luck to you.

Togethertolearn

Vargadoll Three weeks?!?! Hang in there, sounds awful. Sorry you have to wait to see the doctor.

loiswb

I am about 3 weeks in taking 20 mg daily. I was still having periods before starting chemo, at age 54. I am hoping to be done with periods now, and MO seemed to think the chemo and then tamoxifen would "push" me into menopause. I definitely noticed some headache at first, but now it seems to be less of an issue. Hard to say about joint pain. Nothing lasting or severe but perhaps a little bit more than I was experiencing before. I am having hot flashes that are a bit worse (stronger and longer) than before. So far that's it but obviously still very early. Hang in there everyone. I would encourage those waiting to start, to go ahead--the good thing about medication is that it can be stopped if side effects are intolerable, and what constitutes intolerable is an individual choice. But if you don't even try it, you won't know, and you might be lucky and not have significant side effects.

32B

I second loiswb's thought to just try it if you're scared. Every pill you take is one less you have to take in the future! At least that's what I keep telling myself...

Vargadoll

Togetherwelearn- what's the recoup time for D&C? I'm a busy girl I don't have time for this nonsense! I'm not in any pain I just know it feels different. I just don't know what to expect! The cyst or possible abscess scares me!

WorryThePooh

Vargadoll, sorry to hear about the glaucoma and fibroid. if you have a d&c you will be able to do normal activities after one of two days. Just wondering are you pre or post menopausal?

I'm feeling a little anxious about the endometrial cancer risk I just read about, as I am post menopausal. It's probably a very small risk, but I would have appreciated being told about it by my doctor.

Togethertolearn

vargadoll I've had three separate d&c for polyps and also a separatesurgery for ovarian cyst - the day of I was a blob from the drugs, but totally fine the next day. These were all before cancer, I'm 45, so the surgeries I'm reffering to are over 10 years ago. Maybe recovery day of is better now?!