Bottle 'o Tamoxifen

Hi, all,

Well, darn on the stomach thing. Thankfully, the Prilosec OTC has worked for me. I walked 2 miles at lunch and have hobbled around the office ever since. Bone pain is still better than on AI, but good grief, I wish SEs were not as rough for us.

Dee

I have no clue what brand my Tamoxifen is. I looked the bottle all over the only thing I could find was Mft:Myl. Is it on the bottle, pill or do you ask?

You ladies might remember I'm the one who is constantly freezing! I would wake up 2-3 times a night because I was miserably cold! That was sleeping in leggings, leg warmers, LE night garment, cami and a long sleeve shirt with 4 blankets on my side of the bed. My DH has been after me for months just to go buy an electric blanket. I didn't want to because he gets warm at night. He insisted that I get one last week and I did! I'm not waking up freezing! I sleep all night with a normal amount of pj's on!

Heather2018 I had very vivid dreams my first few days. I think that is a side effect. And on occasion I will still have very intense ones but much less. I will say that about 7months in for me my body seemed to adjust to the medication. I still have issues occasionally with insomnia and definitely still hot flashes (acupuncture helps these tremendously for me). But right now, tolerable, and I am judicious about taking it every day.

I am still having cognitive issues but not as bad as the first week. I miss the old me very much. I've been on Tamoxifen for 2 months now. Mostly I have noticed an inability to regulate temperature. I am absolutely freezing or having hot flashes. This is very annoying. I found this rice stuffed elephant you put in the microwave that helps me when I just can't get warm. I have also noticed fatigue, but that is probably because I just can't sleep anymore. I literally have to drag myself to exercise. So difficult when you feel you do not have an ounce of energy. Lastly, I have developed trigger thumb!! Super annoying.

Other than that life just goes on.....I am expecting two grand babies, a little boy in three weeks and a little girl in May! Ok, life is not so bad even if I feel like crap all the time. I hate being on Tamoxifen but then the alternative is pretty ugly too. It just is.

I want to be there when those precious babies graduate from high school.

I've been taking Tamoxifen for almost 3 weeks now. The first week I quit after 5 days because I felt so awful, but then after a couple days I thought I'd try it again because it's super important to not go through this again! So far, I just have trouble falling asleep, have nightsweats occasionally and not severe, and I don't have much extra energy to do the things I love. I, too, am trying to work out again, and I can just see that it's going to be difficult to get back into a routine. I used to run 3 miles at least 3 or 4 times a week, and do yogaburn workouts on days that I didn't run. Now I'm just trying to do a few workouts a week. I work out in the morning, and after a difficult night's sleep, it's hard not to hit the snooze button several times and then have no time to workout. I hope that it will get better with time.

I started my tamoxifen on Monday. When did you ladies start with side effects? I have a cold/sinus infection so I feel pretty crummy anyway and am starting antibiotics today. I've been a little cold today but dont know if its bc I'm sick (no fever) or the tamoxifen

If anyone is interested, there is a company that does a self pay testing ($200) on a very large range of medications to determine your body's ability to properly utilize them. And one of them is Tamoxifen. When I was diagnosed last year, the only testing available was quite expensive ($5,000) and not covered by most insurance. My Oncologist has begun using the testing group OneOme recently upon request. Even though the likelihood is low for someone to be a poor metabolizer of Tamoxifen, for me her willingness to do it along with the much cheaper $200 price works. I have osteopenia and I think I want to try and stay on Tamoxifen but I want to make sure I metabolize it well. The process has to be initiated by your treating physician. They send a swab kit to your residence and the results then are submitted to the doctor for review. My test kit is on its way as I write this.

Hi everyone: I haven't been here in quite some time but am always sending best wishes to all as we walk this path.

I'm frustrated by what I think are Tamoxifen-related issues after 2 years of pretty smooth sailing, just some swelling in my calves at end of day. But now it appears I'm losing quite a bit of hair. I thought I was losing hair about a year ago and was told by both a derm and a PC that everything was fine - at least from their perspective. One of them suggested Rogaine if I were feeling worried about it. They also said that if people were going to lose hair on Tamoxfien it would start in the first 6 months or year. But, now I definitely have a wider part and my crown is thin beginning at 2 years out.

Has anybody had sudden hair issues after being on T for years? If so, what did you do about it? I know there are bigger issues to be concerned with but this is getting me down.

Thanks. Love to all.

Vargadoll - Ask your pharmacist I googled Myl tamoxifen and tamoxifen manufacturers and found this http://www.mylan.com/en/products/product-catalog/p... . The generic might make a difference. With tamoxifen so far, I do not know if I've had different manufactureres/generics. I've been taking Tamoxifen since March 2018. Actually, this is the second time for me. In 2009 I took it for 5 years. A friend on a very different drug says she notices a huge difference between generic and brand, and her DR writes the Rx specifically for the brand name, even then, she still has to sometimes argue with the pharmacist and once even with her health insurance who want to substitute a cheaper generic. I'm getting ready to ask about a very different drug, because I'm noticing some things with a brand new bottle, that could be a different manufacturer than the previous bottles.

Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinal node removal, negative. – 1. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinal nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 201810/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. 2/2019, trigger finger and stiffness much better.

BlueGirl, I will let you know what my test results are. It is individually evaluated just on my DNA in this test. I suspect I metabolize it very well based on the level of my hot flashes (ha), but who knows. And if for some reason I only metabolize at 20% well then there is a decision to be made about an AI and my bone health. I received the kit yesterday so I will send it back today. I think it takes around 2 weeks or so. It is just a cheek swab for the test.

I asked my oncologist about all this yesterday (wanting to be tested to make sure the tamox is working for me). I've had zero side effects, not even hot flashes. I'd read that those who get hot flashes have a better response to the tamoxifen, so I was convinced I'm one of the few for whom it's a waste. She gave me the big brush off. Said studies show that the hot flashes are not an indication of effectiveness, and since my periods are still non-existent, the tamox is doing its job. I'm not sure I believe any of this, but will hold off a bit then bug her or another doctor about it again.

Bluegirlredstate- I eat very little meat. For some reason I just can't handle the texture of most meats now. That's never been an issue before. I have no idea what started it either! I manage chicken, salmon and a burger if the ground beef is from our local chop house. I can't do ground beef in spaghetti or casserole. I have also lost 25 pounds since my crazy quirky eating habits started.

Like others here I find some side effects come and go. But not the hair loss. That keeps going on. It's gross. I have put hair catchers in the drain or I'd have plumbing problems! The bathroom floor is covered with my hair. It looks like I never clean house. All I have to do is comb my hair and the floor and counter are covered in it! It's on all our clothes and in everything I cook.

Also really noticing my failing memory. I honestly, literally can't remember what I did yesterday. It frustrates the hell out of me. IT's either the tamox or my life is so damn boring that nothing is worth remembering!

Hello. I have no issues with iron while 6 years on Tamoxifen. I went into chemopause so the mental fog is there. I am about tired of the hot flashes especially in the summer. I am thinking about efflexor for the hot flashes. I am on the Mayne Brand too. Otherwise I tolerate it okay.

My MO took me off Arimidex and plans to start me on Tamox next month...too much bone loss on Arimidex.

Does anyone take a blood thinner due to the SE for blood clots/stroke? Like one of the drugs folks take for Afib - Pradaxa, Eliquis, etc. My mom has Afib and thus is at greater chance for a blood clot that could lead to a stroke...seems like a similar SE...so do Tamox folks take a blood thinner? TT