Bottle o Tamoxifen
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I take mine in the morning after breakfast. My hot flashes are mild.
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lala. . .I'm looking in to turmeric but have to clear it with MO because I'm very hormore positive and info online says turmeric may mimic hormones and/or reduce effectiveness of Tamoxifen in some women.
Scottie
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thanks all! I'll try in the morning and go from there
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Scottiemom11 I just saw my MO for the 1st time this past Friday. I am 100% for ER and PR, so I will definitely be taking Tamoxifen. We are waiting for something to decide to take it before surgery or start after. I have been taking Turmeric for almost 2 weeks now and she told me to stop immediately because of it interfering with the Tam. I am bummed because I was excited about the anti-inflammatory effects that Turmeric is suppose to have. But, I will trust her that I need to stop taking them. I wish there was more evidence of if it does or does not interfere with it.
I am scared as heck about taking an anti-hormone pill. I asked my mom today how her menopause was for her and she said she had mild hot flashes during the night, but that is it. I am 41, and will be taking Tam + probably Lupron. I am currently on Zoloft. But, I had already read that it interferes with Tam, so my MO is weaning me off that and onto Celexa. She said that Celexa would help with my hot flashes and menopause symptoms. Anybody else take that and have feedback to give? I have been taking Ativan to get to sleep at night, but she prescribed Lunesta for that.
Anyhow, it is official, I will be joining you all with this little white pill in the near future! Will be reading this thread like a hawk
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Good Morning All
I too have nausea...it comes and goes throughout the day. I was told by the care navigation nurse at our cancer center to take the Tamoxifen at night as it tends to be less intrusive while you sleep - Not sure if it is true but that is what I did - I take it at 5pm before dinner. I keep a clear daily pill box so I do not forget. I also take Gabapaentin for pretty severe pains that was suggested by a rheumatologist. A large ovarian cyst was found on my right ovary that is attributed to the Tamox by my OB but my MO said there is no way it is responsible - either way, it was there. Just had a 2nd follow-up ultrasound last night to check it and I wait for results. Also started some rectal bleeding on Friday so that is going to be followed up with next week after I panicked and was seen yesterday (Saturday morning by a physician covering at my primary's office) - They want a Colonoscopy and Endoscopy - gee, fun. I do get lots of joint pain and aches but feel strongly that, if the Tamox keeps the cancer away, I'll do it. I'm 49 and have been on it for 8 weeks and, since then, got my period three times - sort of funny as they told me that would stop- go figure. It is an individual decision but I have read so much and asked many questions - The Tamox is what is available and it is supposed to work, SE and all. I also get really cold at night, especially, but use a heated throw and it helps. Still healing from radiation so, maybe once that has healed, I'll feel better! Have been using Domeboro soaks for the past two weeks and I do finally see an improvement...my tumor bed was from 3:00 to 7:00 so where an underwire would be - awful place but slowly getting better. Wishing you all healing and peace!
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Scottiemom1--I hear you about turmeric interfering with Tamoxifen so I asked my MO. He's known as the breast cancer specialist in oncology here in the south and is considered one of the major researchers. I have also become somewhat of a research hound
on all things breast cancer. My MO spent a couple of weeks doing as much research as possible into what is being said about turmeric and he sent me some of the articles that he found and used in making his decision. He's decided he's totally ok with my taking it so I'm going to continue. I do think everyone should listen to what their own doctor feels since he/she knows much more about your specific type of cancer. Below are some of the articles that we put together. Hope this helps anyone trying to decide if they should/could take turmeric. All I know is that it's helped me tremendously with the Tamoxifen-induced aches and pains. I've also turned my dad on to it for his arthritic knee (says he feels even better on it than he did after having the injections!) and my DH who just had ACL repair surgery (his docs are impressed with his lack of inflammation and recovery and say he's about 2-3 weeks ahead of where they expected) but of course, they aren't dealing with BC! Curcumin Modulates Tamoxifen Response in Resistant Breast Cancer Cells.
Harvest the Power of Curcumin To Kill Breast Cancer Cells | MarnieClark.com
Curcumin induces cell death and restores tamoxifen sensitivity in the antiestr
The Effect of Curcumin on Breast Cancer Cells
Can Turmeric Slow Down the Spread of Breast Cancer? | Dr. Nalini Chilkov
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Momoftwins. . .I have a history of ovarian cysts so MO looked up the info and Tamoxifen can cause cyts as well as thickening of the uterine lining. That's why I was on lupron for several months. Some women tolerate lupron well. . .I'm not one of them so I stopped and am crossing my fingers that I don't get a cyst. Also, Tamoxifen does not stop cycles in everyone. I continued to have mine until MO started the lupron, so mine may come back.
I also added a gastroenterologist to my list of docs. I had an upper endoscopy earlier this month and am scheduled for a gallbladder scan and colonoscopy next month. I feel like a human guinea pig but at least this will give me total baselines. Gabapentin works great for me.
Hugs Scottie
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I take mine in the morning after breakfast. If I forget I take it after lunch. I haven't had any nausea and only mild hot flashes or other SEs.
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To the new ones on the list.............I'm 1839 days out & my biggest complaint is this thinning hair & complete lethargy . Got just under 4yrs. 11 mons. & a hand full of days to go. Prayers & wishing you the best.
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NormaJean. . .may nails are paper thin from the meds, but ironically my hair has gotten thicker and fuller.
Scottie
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I find the oncologists don't like you taking any supplements besides calcium and magnesium . I have been taking grape seed extract and curcumin for seven months now. I doubt I would be doing as much as I'm doing without these. Anything that reduces inflammation in the body is a good thing as cancer loves what happens when we are inflamed. So I will have my first scan in six months in February I will let you know what the outcome is.
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And D! Mine is good with curcumin and everything my ND has added so far.
I'm at the end of 5 months with only manageable side effects.
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Saw my MO yesterday for my first month Tamoxifen check in....he said the most SEs are in the first 90 days. Don't know if that is true but that's his take. I still just have the night sweats but like I said, had those before Tamoxifen. I have some muscle pain but think that is due to my exercise. I don't know. So easy to blame everything on the pill. No real complaints so keep up chugging.
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My experience is not that most SEs are in the first 90 days. Rather, they seem to wax and wane.
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Same here. None of mine really started till about month 3 and that was the joint/muscle pain. Then around one year I started with nausea, dizziness, and sinus issues. The nausea and dizziness eventually passed (I think good probiotics helped with that.) and I have the pain under control. All I'm really left with is a slightly runny nose and some ringing in one ear which I think is probably a mild chronic sinus infection. Not much I seem to be able to do for that, so I live with it. Guess it could be worse!
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This is my 10th day on Tamoxifen. I take it in the morning at breakfast and by the afternoon I have the chills. During the night, instead of the usual night sweats I've been having for quite a while, I have hot flashes where I throw the blankets off and on again. Those are the only side effects I have noticed. If I took it at night would the opposite happen - cold at night and hot flashes during the day?
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I don't always take it in the morning but no matter what time, I still get most of my hot flashes at night. I don't know if they're just more likely to happen when we are relaxed or what. Mine are pretty mild, though, and like ksusan said they tend to come and go. Sometimes I don't have any for a week and then I'll have a couple of really annoying days. I've been on tamox for six months now.
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Still taking my crapload of Tamoxifen (40 mg/day), and I feel fine. No SE yet aside from hot flashes that I was already getting from being premenopausal. Hang in there ladies! I have an appt on Feb 18 and will ask my doc why I need so much Tam. He assures me that 40 mg/day is the correct dose for me. I'm 5'8, a few pounds overweight but not a lot, and 51 years old. I'll share what he has to say.
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Sloan, I'm taking 20 mg/day, 51 yrs also.
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My SEs started at the 6 month mark and became progressively worse. Once my ovaries came out, most of my SEs disappeared. Still have ringing in the ears but that is manageable.
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Interesting information on Dosing recommendation
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RobinLK--Have you found anything that stops, or at least reduces, the ringing in the ears? Mine is only in one ear and it's not terribly loud but does make me a little nuts.
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Not yet. I am trying to retrain my brain to listen to noises other than the ring. Some days it works, but not always. Supposedly, white noise machines can help. It is thought to be a brain issue more than an ear issue, but seeing a doctor is recommended. Hearing aids have also been known to help, as it improves the ability to hear and focus on background noises other than the "ringing."
Edited to add closing parenthesis.
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I too have ringing in my left ear. It started after my first chemo treatment. I mentioned it to my MO and he told me that wasn't one of the side effects from chemo. Well for me it was because I definitely didn't have it before. I haven't noticed that the Tamoxifen has made it worse. I can tune it out most of the time, getting used to it.0
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I get ringing in my ears sometimes now that I'm on Tamoxifen. Fortunately, it comes and goes.
I went to the eye doctor and had them take a picture of the blood vessels in my retina. I have a small retinal opening that squeezes the vessels -my normal self-- and the docs want to make sure the Tamoxifen doesn't put pressure on those vessels as it will put me at risk for a stroke in my eye (especially since I"m on 40 mg/day). Joy.
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I had the pictures taken of my retina as well. I had it done when I started the Tamoxifen as a baseline and redo it every two years to make sure I'm not developing a problem.
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Sloan...I had heard that Tamoxifen can cause vision problems but nothing specific. Have you been told that there can be an increase in pressure on the vessels in your eye? I have had a couple of episodes of subconjunctival hemorrhages (more than ever before) and now I'm wondering if this could be related.
On another less serious eye topic...have any of y'all had your eye lashes come in pointing toward your eye?! This is driving me crazy--it seems these lashes are tiny tiny and even with my 10x magnifying mirror, very difficult to find! I don't think there's anything that can be done, but I was just wondering if I'm the only one!
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lala - what are they going to look for in the comparisons? What did your doc say was a potential problem?
Loriekg - I only know about Tam and an increased risk of dry eyes, floaters, and retinopathy. Call your doc or eye doc if you're worried. The risks of eye problems are very very rare, but I have a defect in my eye that the need to watch.
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The day I first met with my BS, which was the day after I found out I had BC, he sat down with me for 3 hours and wrote out a diagram as to how my BC could play out. He basically laid out how they first determine if you're ER/PR+ etc on to MRIs, surgery, lymph nodes, possible chemo and/or radiation and so on. I still keep this piece of paper and refer to it sometimes. One of the things he wrote down was the pros and cons of Tamoxifen and AIs. I was premeno so Tamoxifen for me. "Tamoxifen pros: increase survival by another 12%, lower risk of recurrence on cancer side by 50% and lower risk of occurrence on clear side by 50%, and it protects bones. Tamoxifen cons: hot flashes, some increased risk of cataracts, some increased risk of uterine cancer, some increased risk of blood clots."
So as you can see, Tamoxifen can mess with the eyes. He said small chance of cataracts so I'm guessing that's the main thing they are watching. My ophthalmologist agreed with him and has me do an annual eye exam and a retina picture every 2 years. I'm now menopausal so I guess I could swap to an AI but I've got that pro and con list as well which says I'd have a 56% decrease in my risk of recurrence on the cancer side and a 60% decrease on the clean side. But as my BS pointed out, I would have a much increased risk of losing bone density and he feels the greatly increased muscle/joint pain isn't worth the few percentage points. I've learned to manage the Tamoxifen muscle/joint pain pretty well so I'm not real keen to upset the apple cart just yet. (But I would like to reduce my risk of blood clots!)
My BS is very highly regarded in his field and I think he's just the cat's meow so I listen to his opinion. And my MO is almost as good and agrees with this course, so here I am!
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Thanks. He does sound like a good one!
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