Bottle o Tamoxifen
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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.
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SheWra- congratulations on the grandbabies! I have 6 and they are all pure joy!! They keep me busy! The youngest just turned 2 this past week and the oldest is 13!
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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.
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Rah2464, thank you that is really helpful and encouraging to hear about the 7 month timeframe.
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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
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Salamandra you are so welcome, hope the same holds true for you or even sooner. We are all so different.
Jen2Mom I had a few things right away, others developed, morphed, lessened. But it does take a few weeks to come up to full systemic dose. Best of luck to you I hope you manage it easily.
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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.
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Rah2464, thanks for that too! I have my first follow up at my med onc on Friday. I will ask about that too.
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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.
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Rah: Thank you so much for sharing the info about the ability to metabolize Tamoxifen. So interesting. I ask my onc about this all the time.
Jen2: I wanted to chime in with what others have likely mentioned. The side effects may wax and wane or may disappear completely. It often does get better as time goes by. Wishing you well.
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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.
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Rah2462 - I would be very interested to find out what you learn about the effectiveness/metabolism of tamoxifen. even though I really like my oncologist and she is very good about answering my questions, I get really frustrated that there do not seem to be any metrics for measuring the effectiveness. I guess the assumption is that any estrogen encourages ER+ cancer, so supressing the production or blocking it is beneficial. I switched from AIs to tamoxifen because of the SEs from AIs.
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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.
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I’m on the Mayne brand as well.
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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.
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umakemehappy- I have no real issues either. I am more forgetful and have to pee more than ever but I want to blame that on Tamoxifen but not sure I can ?!? I also freeze all the time. I have always been a sweater and where are my socks girl. Now I'm 2 camisoles, shirt and sweater /sweatshirt with cuddle duds girl! I'm also very concerned if the Tamoxifen is working since I do not have any typical SE.
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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.
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Hi Everyone,
Happy Friday I hope you all have a good day and weekend. Wow there is a test out there that tells you if Tamoxifen is working! I would love to take that.
I have a question for you all have any of you had low Iron from Tamoxifen? I got my blood work back from my PCP and they said I have low Iron, so they have put me on iron supplements. I thought I would ask you wonderful ladies before I went running to my MO to ask her about it.
Thanks for any input.
Sending good wishes to all.
Sara
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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!
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Just wondering about the non medical ingredients in the Tamoxifen and irritation of my stomach. I looked up what they are. According to my research (will talk with the pharmacist soon)~Ativas and Mayne brands have the same non medical ingredients added. Mylan brand had the least added. Teva had twice the amount of added non medical ingredients. So if your thinking about switching brands this might be important. If my stomach irritation is purely from the Tamoxifen citrate then nothing can be done.
If anyone wants me to list the ingredients I can but it looks like there's salts and sugars, lactose and ingredients that pulls the fluid in your system to your bowels,as well as ingredients to make the pill stick together and release the medication properly.
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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.
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Good morning all!
Has anyone had any blood pressure issues? I started taking Tamoxifen the first part of February and all of a sudden (starting last Thursday) have been getting a weird dizzy sensation and my blood pressure goes up. I get a shaky and dizzy feeling and feel week. I have been documenting my blood pressure. My blood pressure is usually around 116/80, I've always had a fairly low blood pressure. It actually went up to 170/103, it kinda freaked me out because my heart was beating fast as well. I had my husband take me to the ER (I've never been to the ER before) and they did do an EKG and it came back normal. I am seeing my primary today and have been keeping a log of my BP. I'm wondering if it went so high because I was scared and have never had high blood pressure before. Saturday it started at 170/103 then went down to 140/87 about 20 minutes later it was 116/80 then about 30-40 minutes later it went back up to 140/87. Can menopause cause this? I just don't know. It's like the last 5 days I have kind of light headed feeling that doesn't go away, then when my blood pressure goes up I get the shaky (heebeegeebee) feeling. Any thoughts or similar experiences?
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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
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Hi, all,
Vargadoll, I'm now craving meat--it's so weird! I have dramatically upped my fruit and vegetable consumption, but I crave red meat. I can't eat turkey because it tastes so weird to me. I can choke down chicken if it is seasoned (i.e. like baked chicken is fine). I suspect some lingering anemia, but my doctor says they don't need to do any blood tests until next month. (UGH).
I do take a low-dose baby aspirin (I think 81 mg?) since my husband's cardiologist recommended it for everyone.
Dee
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Hi Everyone,
TrmTab - I too started on Arimidex, lasting only 3 weeks, the SE's were that bad. (The itchy rash finally did me in) and I was switched to Tamoxifen. Had a discussion about dosage, I wanted to start out at 10mg and work my way up - quite a battle that I won. But I'm still starring at the bottle. I brought up the issue of Blood clots. The MO said it is blood clots in legs that they are concerned about, not the brain which causes strokes. (I'm not so sure about this - I don't trust my MO)
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DeeBB--I had similar issues when I started Tamoxifen but not quite as bad or very often. I would feel dizzy which would then make me feel nauseous. I struggled with it for months till I figured out that Tamoxifen can be very dehydrating. My husband actually got dehydrated enough that I had to run him to the local health clinic. They gave him lots of water and Gatorade and he was fine. I realized I felt very similar to how he felt. Once I upped my water intake quite a bit those issues mostly went away. I do think some of mine was going into menopause as well but mostly I'm convinced it was the Tamoxifen.
TrmTab--My MO put me on a daily aspirin for possible clots when I started Tamoxifen. I found that I would bruise way to easily so he cut me down to twice a week which he says works just as well without all the bruising issues. I took the twice weekly aspirin for the full 5 years on Tamoxifen and still take it now. Ask your doctor. Seems that could work just as well as a prescription blood thinner in this case.
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thanks for the feedback.
I lasted 3 years on the Arimidex, but over that time suffered 20% loss of bone density...the MO would like me to finish up with 2 years of Tamoxifen for a total of 5. I seem to have acquired every SE of Arimidex so fear I will continue to collect SEs...and the blood clots scare me. I fly a lot and a DVT blood clot can break off and cause real damage. Assumed Pradaxa or Eliquis would be overkill, but okay with the baby aspirin.
As I had DCIS, I wonder how much more protection I will get with the 2 years of Tamoxifen...I also have been reading about taking a lower dose, 10 or 5...would really like to ease into it, guage SEs and back off if they start up again. TT
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I started Tamoxifen on March 15. MO advised to take 10mg for a week or so, then two pills a day then after first month might switch to the 20mg pills. My pharmacy has its own label on the bottle and i cant tell who is the manufacturer. How can i find out?
From what I read, some percent of women do not respond to Tamoxifen properly. This is because some women have a variation of a specific gene in their body which deals with the enzyme found in the liver, called P450 2D6 or "CYP2D6", responsible for making the main active metabolite that makes them resistant to this medicine.
Initially my MO said she is not routinely testing this gene but eventually after i brought it back into the conversation during last visit, she said will sample blood and will send my tissue sample along to Mayo for this test. Here is a link for an article that explains why this test may be flawed
https://www.breastcancer.org/research-news/earlier...
I also found this company that does a test for a lower price in case the MO or insurance might object for some reason
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When I was diagnosed last year, the only genetic test available for CYP2D6 cost $5000 and insurance would not cover it, so I didn't do it. At my most recent appointment with her, I spoke with my MO about the kailos genetics test. She wasn't aware of them but is using now OneOme, a genetic testing that not only looks at your potential response to Tamoxifen, but also quite a few other medications. My cost was $200. I sent the cheek swab test in this past Monday so curious to find out my results. If I am going to stay on Tamox because of my bones, I want to make sure it is effective enough. This testing group requires initiation by your MO to start the process, and test results go to them instead of to me, so you have to have an MO willing to do it.
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I feel the same. I am suppose Tamaxifen or Letrozole but the side effects are overwhelming from someone already needing bone health.
My question for the oncologist is what happens (what are the odds) if I choose not to take the meds for the cancer to return vs what the odds if I take the meds and the cancer will return.
Lets see what the odds are so I can decide about hormone treatment.
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