Bottle 'o Tamoxifen

Annette47

Also (for Josie) some oncs won't prescribe AI's for DCIS as that would be off-label usage. So far only Tamoxifen is approved for use in DCIS, although there's no reason to think the AI's wouldn't work ... it's just that the testing isn't complete yet. Many oncs will do it anyway, but some won't.

Mine said for my diagnosis that the Tamoxifen was up to me and that if I found the SE's unbearable he would support my decision to stop taking it, but so far it hasn't been too bad.

LiLi-RI

Hi Strong and Wise Women: I finished rads about 3 weeks ago, and I will start Tamoxifen on Monday. It is the Watson brand...20 mg. Should I take it in am or pm? I am still tired, but I am returning to work FT on. Monday. Thank you for suggestions. Lisa

RunFree16

Lisa, congratulations on finishing rads and going back to work! I take my Tamoxifen in the morning because I'd read that a number of people have sleep problems if they take it at night. Others take it at night because they get nauseous if they take it in the morning. And many people have neither of those problems. I was willing to change to night if I had tummy trouble, but I haven't, so morning it is for me.

josie123

Chevyboy, thanks for letting me know that about someone else taking 1/2 dose tamoxifen.Your right unless you have serious SE' s the oncologist don't want to admit it has to do with Tamoxifen.

Gemini and Annette thanks for the info on Arimidex.I thought that would be an alternative.I don't know if I'm menopausal or not.I had a partial hysterectomy in 2011.But they of course only took my Uterus and cervix.I guess I could have a blood test to see.

Chevyboy

Yes, you are welcome...! Her Name is Kaara, and she is on the Older Womans" thread.... she has been taking 1/2 dose for over 1& 1/2 years.! Just make sure you ask your Onco, THEN see what you decide.

If you are like me, there is a certain point, or reason where you have to make up your own mind..... Take good care!

Annette47

Lisa - I think you just have to kind of experiment and see what works for you. Personally, I take it at night because a) it's easier for me to remember as I am NOT a morning person (which is why I always take my multi-vitamin, allergy pills and way back when contraceptive at bedtime, LOL), and b) I was thinking that if there were any nausea or other immediate unpleasantness I would be able to sleep through it. As a previous poster said though, some people seem to have sleep problems from it. I've actually been sleeping much better since starting on it - very vivid dreams though!

GrammyR

After return. of ER pos BC this summer I was just restarted  on  Tamox ( final try )I  had started it at same time as Rads and had to stop it when I got terrible belly pain ,nausea, loss of appetite.  I did get some SOB that seemed to get less a few weeks after Rads all completed . The RO thought related to anxiety. Only been back on Tamoxifen  3 days and already cannot sleep. I have been on Zolpidem for years so do not think.Melatonin would help. I am on two 10mg per day which I spilt am and pm but think I will have to take them both in the am I guess. MO says only  alternative is Faslodex shots monthly, as I  had terrible joint pains /stiffness on the other 3 po HB. So am crossing fingers that I can keep going on Tamox.

I think everyone has different SE, my forner MIL was on it for years no problem. 

new2bc

Josie,

What company makes your Tamoxifen? May be if you switch to the other company, your side effects will be better.

Lenn13ka,

Can you give us an update after you talk with your MO regarding melatonin?

krissy42

Topical Tamoxifen???  Has anyone hear of the study and the results of Topical Tamoxifen?  It is supposed to work without having high levels in your system. This would cut down on the side effects. If you have heard of this, I would love to hear from you.

Krissy

gemini4

Hi Lisa, welcome! I hope you have an easy time on tamoxifen. I haven't had much trouble, only hot flashes, but they started before I began the medication, so I don't know how much I can blame them on it.

I take my tamoxifen pill in the morning most days. Occasionally I'll forget and remember to take it in the evening. I don't notice any immediate effect any time I take the pill. Fortunately I've never experienced nausea or insomnia from it ... And hopefully the same will be for you!

Loral

I take my 20mg Teva brand Tamoxifen after dinner, and 6mg melatonin at 11pm. Keeps me asleep for 5-6 hours without waking, that's great for me.

LiLi-RI

Thank you Ladies! I understand each experience is different. I think I will try a morning dose at first. I am so hesitant to get started since last week I finally felt ok. One thing which concerns me is that I have not seen or spoken to MO since August?? I just feel so alone in this process. My appt with MO is December?

RunFree16

Hi LiLi--Does your MO do email? If not, you could try to get a call in. It might make you feel better to touch base, along the lines of, What things should I look for as I start Tamoxifen, are there any foods or medicines I should avoid, and under what circumstances should I call you even before my December appointment? That is, if they didn't go over this with you before. My MO said most side effects appear only after a few weeks, so a December appointment might be about right. I'm sorry you feel alone in this process--that isn't the way it's supposed to be. Your MO might also have a social worker, care manager, nurse navigator, or some other person who could be an easier point of contact to reach.

Annette47

I think RunFree gave good advice, but if it makes you feel better, I first met my MO in January, and he wrote a prescription for Tamoxifen with the instruction to start it a month after finishing radiation, which ended up being the beginning of April. I saw him again in May as he wanted to see me after I'd been on it for a month as that's when most SE's would have shown up (or so he said - the mild hot flashes I've had didn't start until about 4 months in).

Point is, the schedule you've been given sounds about right to me.

jo1955

Krissy42 - Topical Tamoxifen??? Never heard of it. I just did some searching on the internet and read that it is still in clinical trials and is being tested on women who have been diagnosed with DCIS. I didn't see in any of the articles if or when topical Tamoxifen in gel form would be available. It may be years down the road. Heck, I have 2 years and 2 months as of today. Yeah!

Lacey12

Jo, I just always love your countdown report! You're ahead of me by a year.....oh the envy!!

I do think the cr melatonin is helping me stay asleep.....inexplicably, tho, I still wake up tired and am fatigued during the day, even with my regular exercise regimen. My pep is altogether gone. But I guess I will take comfort knowing that my body is no longer fighting sleep all night...that feeling was terrible...and exhausting.

jo1955

Lacey12 - I should have said after my countdown - But who is counting? hahaha I will be so very glad when take that last pill.

dragomirova

Havr been om tamo for 1 week- no symptoms yet!  Today was my 4 week post rads follow up- next visit at 6 months.  They already called me for my next mammo!  I told the doc, if there are any more lumps, they can stay in there....

 

Best to all....

Lucy2941

I've just started taking Tamoxifen and bought a bottle of Melatonin + L-theanine which is made up of herbs which are a component of green tea. Says it helps relax the mind. My question is, will it interfere with the effectiveness of the Tamoxifen? When I was on chemo, my doctor recommended staying off any herbs because no one had any studies on the combination of the two. At the time I bought the Melatonin I didn't think about the extra ingredients. Any thoughts? Thanks!

jo1955

Lucy2941 - Melatonin is okay to take with Tamox. A lots of us have been taking it for a long time. I did ask my MO at one time about it and he told me to go for it. If it works, it is better than a prescription sleep aid.

Lenn13ka

My MO is checking on Melatonin for me with her pharmacist and said she would get back to me in a couple of days. I think the concern is not that it interferes with Tamoxifen but that it alters estrogen levels in ER positive cancers.

Lucy2941

Thanks for the info jo1955 and Lenn 13ka. It's something to think about and I am always on the lookout for things that work.

gemini4

Lenn13ka, can you report back with what your MO says about melatonin? I've been avoiding melatonin because I've read conflicting information about its effect on estrogen. Thanks! :-)

Lenn13ka

Gemini- my mo is having an MGH pharmacist check on it. She said she would get back to me tomorrow. I will let you know. I am still taking my 3 mg .. But will stop if she tells me to. Like everything else with BC- so many conflicting theories/reports

smo23915

Here is my email from the Pharmacist at MD Anderson on Melatonin, DIM, & Tumeric:

I do not see a problem taking melatonin as a sleep aid. I do not recommend that the patient take DIM, as it is reported to have some estrogenic activity. I did not find data saying that turmeric interferes with the absorption of tamoxifen, but I did find that some in vitro studies indicate that it can act as a weak phytoestrogen; therefore I would recommend the patient not take turmeric as a supplement.

ndgrrl

Hi all,

Does anyone know if Tamoxifen makes white counts go down? My cousin went to her Onc today adn they did a blood test to check her counts. Is this normal? I have only been on Tamo since Sept 25th so have not had any blood tests.

Does Tamoxifen cause ovarian cancer? I know it can make the uterus lining thicken and can cause cancer but does it also effect the overies?

Thanks

lahela

ndgrrl, I think it can lead to an increased occurrence for ovarian cysts, but not ovarian cancer.

jo1955

ndrgrrl - Ovarian cancer is a rare side effect of Tamoxifen. Yes, it can cause the uterine lining to thicken. I can speak from experience. I think everyone who is taking Tamoxifen should ask their GYN to do a transvaginal ultrasound.

taguekids6

ndgrrl,

On first page of my side effects it says: Tamoxifen can stop menstrual periods or cause irregular menstrual periods, ovarian cysts, uterine polyps, uterine fibroids or endometriosis. In rare cases, tamoxifen can cause cancer of the uterus. Tell your healthcare provider immediately if you have abnormal vaginal bleeding; irregular menstrual periods; changes in vaginal discharge, especially if the discharge becomes bloody, brown, or rusty; or pain or pressure in the pelvis (the area below your belly button).

I have 4 pages of side effects........don't see anything about lowering white blood cell count. I know my onc said he would be doing blood work on me every 3 mths though. I assumed it was to check for white blood cell as well as hormone status because when I asked how he would check for recurrence besides physical symptoms popping up (like feeling lump), he said through blood work as well.

Hope that helps.....

Kimberly

emegram

mstrouble16: Just wondering if the cortisone shot in your shoulder helped with pain. I've been taking Tamoxifen for 3 yrs and now have developed intense pain in my right shoulder. It feels like my shoulder is "out of joint." I've been to chiropractor who did adjustment, used laser & then acupuncture. Still hurts. Thanks for any info. Wondering if I should go to orthopedic dr.