Bottle 'o Tamoxifen

farmerlucy

Thanks layla1! That is good to hear, especially about the recovery time.

Anonymous

Hello ladies. I hope everything's ok with all of you.

I have some questions about hormonal therapy and i hope to find some answers on this thread from the wonderful ladies here. Please allow me to post my questions.

I am actively posting in the TN groups but actually i have a low positive ER/PR with 5% & 3% hormonal assays respectively. My HER2 is negative. I am about to finish my FEC-D treatment (3 FEC and 3 Docetaxel) with only one Docetaxel session to go.

After my fifth chemo session two days ago, I was briefly told by my MO in advance that i dont have to undergo radiation and that i should take Tamoxifen 20 mg. once daily initially for 300 days starting one month after my last chemo session and she already gave me a prescription for it. She adds that it is suppose to be a 5-year maintenance and after evaluation, another 5 years for a total of 10 years! She said that i will need it to improve my survival rate and prevent breast cancer recurrence since my ER is 5% positive and my PR is 3% positive. Low weak positives but still they're positives according to her! However, she told me that there is also a moderate chance of developing Uterine cancer from taking Tamoxifen. So there's a dilemma!

I am thinking that ...

First, I just became a full-pledge menopause since October last year before i started my chemo in November and from what i have read, Tamoxifen is best given to pre-menopausal women.

Second, what are the side effects of Tamoxifen? If not Tamoxifen, what other aromatase inhibitors are best used in my case? I've read that Arimidex is used for menopause women but i am not sure about this and i read that it has more serious SEs including baldness. What is Raloxifene? Anyone used this? Do you have any better treatment suggestions?

Third, Can total hysterectomy prevent uterine cancer and if it does, what are my chances of not developing cancer elsewhere in my body???

A bit of info about me, I have gone thru right BMX in September 2016 and even before my right breast cancer appeared in January 2016, there were already existing benign tumors in my left breast for i think more than 5 years and i already have a cervical myoma (5cm since my last dx in mid-2015, if i remember correctly) when i was still pre-menopausal and going into menopause and after right breast cancer surgery in September 2016. I did not have my myoma removed because the doctor i consulted said my myoma will most likely disappear after i become menopausal.

With my specific case presented above, I would appreciate any suggestion, recommendation or references that any of you sisters could give especially those having been in a similar situation i am now in.

Thank you very much for letting me post and i hope to find answers and friends here too.

Wishing everyone here the best!

Take care,

Gina

lala1

Gina---Tamoxifen can be taken by premeno and postmeno women. I'm post meno now and still taking it. I had pretty bad joint pain at first, along with nausea, dizziness, etc but I started taking turmeric and ginger for the joint pain and a good probiotic helped get rid of the nausea. Someone on here can usually give you a solution to most SEs. I haven't done the AIs and as of now don't plan to because my doc said the joint pain might be a lot worse and it can cause bone density loss and raise cholesterol. I'm not looking to lose bone density and I have heart disease in my family so I don't want to risk that. He said it would only give me about a half percentage point in risk reduction anyway. And a total hysterectomy takes away your cancer risk for whatever you had removed. An oopherectomy will take away ovarian cancer risk and removing your uterus = no uterine cancer. I also had cervix removed. The only cancer risk I have left is vaginal so I still see my doc every year for a checkup. Having a hysterectomy greatly reduces your estrogen levels which will help with chances of cancer coming back. My doctor told me that exercise is his number one recommendation to reduce cancer risk (about 40% reduction) but his second strongest recommendation is Vitamin D. He says almost all his BC patients turn out to have low Vit D which was the case with me. I was very surprised since my job keeps me outside most days but he said it's cause we all use sunscreen now. I now take 5000IU and have gotten my levels from 28 to 47. Everytime I see him he says "Are you exercising and taking Vit D?" Oh....and a baby aspirin and fish oil to help prevent blood clots from Tamoxifen. Those are his top picks. Hope this helps.

cliff

I have had the hot flashes and night sweats for years, not watching your sugar levels will do that to diabetics too. the only problem with tamoxifen for me so far, is that exgiva shot to keep the calcium in bones causes extreme pain for 6 days every month when I get it. exgiva is given to gals to prevent osteoporosis. the way, I am a guy with stage 4 breast cancer.

farmerlucy

oh cr@p cliff. Sorry. Sucks.

Theo89

Hello all! Newbie to the site!

I just started Tamoxifen on Tuesday (1/31)and my period has come out ofhiding after 4 months (since September '16).

Is it normal to return so quickly like that?

Granted, I am a 27 year old who was IDC and DCIS Stage II, triple-positive, HER2+, ER+ and PR+. I had chemo, Herceptin, bilateral mastectomy (with skin sparing and reconstruction) and now back on Herceptin until August '17 (started up again on 1/25. My tumor was extremely aggressive (due to the estrogen) and like shrapnel.

My oncologist knows that I want to get pregnant in a couple years (my wife is in the process at the moment) and I've read that it is safer to be on Tamoxifen for at least 2 years before trying to conceive. I've also read that, even due to the high levels of estrogen pregnancy produces, there is no increased level of reoccurrence. It still worries me though because if my cancer is to come back it will be metastatic.

I haven't read all the comments here, but is anyone in a similar situation? I don't want the Tamoxifen to take away the best years of my life.

goldie63

hi Astral, just wanted to chime in that for me my period barely came back at all! I was 33 (20 years ago!) and although my period came back ~ 6 mos after chemo it was a couple mos then several mos then many mos between periods until no more at all towards my late 40's. My bc was er/pr negative so I never took tamoxifen. I'm sure there's lots of different experiences with periods after chemo. I hope yours does what you want it to do for baby planning. Take care

SweetCaroline2

to Sheri64- I too have had many months of painful muscle cramps that were becoming more severe-nightly leg cramps, cramping in my hands and feet, and back cramps, Someone told me that his endocrinologist recommended CoQ10 for muscle cramps caused by his cholesterol medication and that it worked for him. I decided that it wouldn't hurt me to try it. It has been amazing! I have not had a single muscle cramp since I started taking the CoQ10.

Anonymous

lala1,

Thank you very much for the valuable tips. Many of the food and supplements you mentioned are exactly what i have in mind for my daily use. With or without tamoxifen, i intend to use those you mentioned. In fact, even before my surgery and chemo started, i've been using turmeric/curcumin, omega 3 fish oil, green tea, flaxseed oil, vitamin b complex, vitamin d, calcium and lots of organic food together with fruits and vegetables. I also intend to exercise more after my chemo id over.

I am just wondering if tamoxifen is really needed considering that i have very low positive er/pr . I dread having to go under the knife again so quickly after chemo to remove my uterus, cervix and fallopian tube.

This is another difficult decision for me.

Thanks again for your prompt reply.

I havent read all the recent posts here yet so i do not have any idea of how you ladies and gents are coping with your treatment but i have already added this thread to my favorites and i'll try to be updated.

God bless you lala1, I wish you all the best.

Gina

mellee

I just started tamoxifen today. Worried about insomnia, since I'm already having trouble sleeping.

Just curious how many here take tamoxifen at night vs. morning?

tbalding

Mellee, I take mine of a morning. I also take 3mg melatonin before bed. So don't usually have trouble going to sleep. I just have trouble sleeping more than 5-6 hours. I went to sleep about 10pm last night and woke up at 3am will more than likely need a nap this afternoon. Hope you got a good night's sleep.

lala1

Gina--I think you have a good plan. The only thing I'll share with you is that my MO and my naturalist doc both nixed the idea of flaxseed, specifically flaxseed oil. The said it's very estrogenic. I compromised by taking only ground flaxseed and only 1 tablespoon instead of 2. They were ok with that.

And Mellee---when I started Tamoxifen by naturalist doc put me on a very tiny dose of melatonin at 0.3mg. I could only find it on Amazon. He said that if you take too high of a dose you actually have the opposite reaction and will stay awake all night. I did this dose for about a year and once I felt I had a good system for sleeping, I slowly weaned myself off. I now sleep great....a full 8 hours albeit with a few night sweats thanks to my total hysterectomy!

mellee

tbalding, I'm with you on the sleep. I can get to sleep fine, but I wake up during the night (especially around 3 or 4 am). I've found a sleep mask helps.

lala1 - thanks for the melatonin tip. I currently take a 5 mg extended release dose. I'll see if trying the 0.3 mg dose improves things. Do you also take tamoxifen in the morning?

mellee

Also wondering how soon most people started experiencing side effects? I'm trying to brace myself (although maybe that's not the best attitude).

jpBCfree

My experience with timing of tamoxifen, I initially took 10mg in morning and 10mg in evening but found the morning pill made me feel exhausted during the daytime so now I take 20mg at night. so far much better with normal alert days and provided i get to sleep no later than 1030pm (630am wake up) bedtime I sleep mostly through.

exercising at least brisk way and little stretch helps with night sweats for me.

tbalding

Mellee, I'm one of the lucky ones that has no noticeable SE. I had trouble sleeping before & can't say it's any worse since taking tamoxifen. Hope you're one of the lucky ones too.

lala1

mellee--I take my Tamoxifen in the morning after I eat so it doesn't mess with my stomach.

mellee

Thanks for the tips! I felt really tired today. Wondering if it's the tamoxifen. If so, I might try taking it at night instead. Hopefully it won't exacerbate my insomnia and then I can sleep off the fatigue!

zjrosenthal

Ladies I have found a technique that helps me get back to sleep. It works most of the time. Get into a comfortable sleep position. Breathe in fully thru the nose to the count of 4, hold for 8 counts then blow out viorously thru the mouth like blowing up a baloon for 7 counts. Repeat 3 times then breathe normally and settle in to sleep. Not turning on any lights also helps. Love, Jean

Elcee1204

I have a question. Since I started the tamoxifen a week ago I have been extremely tired. Whenever I sit down, I feel like taking a nap.Has anyone experienced this and could it be a se of tamoxifen?

Elcee1204

Melle - i stared on tamoxifen a week ago and take it at night. So far no issues with insomnia but I have been extremely tired during the day

mellee

Elcee, I've seen fatigue listed as a possible SE of tamoxifen (up to 1 in 4 women experience it according to this site: http://www.cancerresearchuk.org/about-cancer/cance...), so it's definitely possible that's what causing the issue for you.

Mom2fourplusmore

fatigue is definitely a side effect. I feel like a coma patient. It's awful.

I've seen people on here talk about different brands of tamoxifen lessening the side effects. I'm currently on Actavis. I'm going to try Mylan next. What are other people's experiences on either of these brands. Will I be better off or probably not? Thx

jpBCfree

I take the tamoxifen made by Mayne (which is exact same formula as Teva b/c Mayne bought the drug) and provided I take my pill at night then does not make tired during the day.

lala1

I also take the Mayne brand. I started out on Watson and had pretty severe joint pain. Swapped to Teva which was much much better. Mayne bought Teva so that's what I take now. I take mine in the morning. I also had fatigue but only for the first couple of years. Exercise helped with that. My dad, who's a doctor, warned me after my surgery that I'd probably experience fatigue for at least a year. He swears that all the anesthesia does a number on your body and it takes about that long to recover. Then I'm sure Tamoxifen doesn't help either.

obsolete

Absolute Benefit for Early Hormone-Positive BC

5 yr Anastrozole = 3% Absolute Risk Reduction

5 yr Letrozole = 3% Absolute Risk Reduction

2-3 yr Tamoxifen & 2-3 yr Anastrozole or Exemestane 3% – 5% Absolute Risk Reduction

5 yr Tamoxifen & 2-3 yr Letrozole 6% Absolute Risk Reduction

April 2006 (Table 1)

http://www.bcmj.org/article/new-guidelines-treatme...

…...........................................................................................

IBIS-I – High Risk Women

5 yr Placebo = 350 out of 3575 = 10% failure

5 yr Tamoxifen = 251 out of 3579 = 7% failure

3% Benefit (Absolute)

(Click on SUMMARY OF RESULTS)

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/ibis-international-breast-cancer-intervention-study#undefined

http://www.thelancet.com/journals/lanonc/article/P...(14)71171-4/abstract

…...........................................................................................

IBIS-II – High Risk Post-Menopausal Women

5 yr Placebo = 85 out of 1944 = 4% failure

5 yr Anastrozole = 40 out of 1920 = 2% failure

2% Benefit (Absolute)

http://www.thelancet.com/journals/lancet/article/P...(13)62292-8/abstract

….............................................................................................

If anyone has more accurate and recent trial data (absolute risk-benefit), please post. Best wishes to all.

Trvler

Sweet Caroline: How much coq10 do you take?

Does anyone know if this is ok to take? I have horrible muscle cramps in my upper arms many times a day.

Mom2fourplusmore

lala1, I'm sure your father is right. Anesthesia does hit me pretty hard for sure. I had surgery before all this cancer and it took me a year to really feel 100% again. But I have to tell you that I can't stand when a Dr says this to me. It's very dismissive. Please don't take it personally at all. I think the Drs honestly believe that is the culprit and also the stress of the diagnosis in general. However, the medication gives a much different type of fatigue. It's as if you are walking through molasses. It's not a fatigue you can work through. I've been severally anemic in the past and it's similar to that. I know for sure its the tamoxifen because I stopped taking it and after a month I finally felt better. Then I resumed taking the drug and I slipped back into the fatigue. I'm not crazy. This is a chemical response. I don't understand why they don't want to acknowledge it. They are putting a chemical into some ones body. For heavens sake everyone on the planet acknowledges the fact that women become moody with their periods and yet they can block all of our estrogen and they expect no issues? That is beyond ridiculous. Again , they have many varieties of birth control pills because women respond differently and yet we are to believe that a one size fits all approach with tamoxifen is logical? Come on, we aren't stupid. We have to change this mentality. I will fight to change this because because I have 2 daughters and I refuse for them to be dismissed. In the meantime I am researching the brands to see if I can determine the ingredients that may be the culprit.

Trvler

Mom: I think it's 2 reasons they do that. A) They may have never had a patient with that SE. And they don't really know many alternatives. I am off Tamoxifen for a few weeks now because of muscle cramps. My MO continues to insist it isn't the Tamoxifen but I know it is.

Mom2fourplusmore

Trvlr, I do believe the Drs mean well. A good friend of mine is a highly respected physician. I've had the luxury of being able to talk about the profession with her. We both agree that the field has strayed from its days of complete care and intimacy it once was. And I believe the rat race has affected these Drs. The pressure is unbearable. And I do believe they want to help. That's what drove them through so many years of schooling. However they are undermining the trust by not acknowledging the issues. Tamoxifen is amazing and we are lucky to have it but we need to continue to find solutions for a good quality of life so people don't need to give up on it. I will help change this