Bottle o Tamoxifen
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I've been on tamoxifin since the end of October and have been getting dizzy/woosie spells a few times a week for the past 2 weeks. Otherwise no real noticable problems.
I see my Onc tomorrow for the first time since I started so I'll be asking about this.
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Yes - Tamoxifen can make you dizzy. I almost fainted in the supermarket when I got up fast from a squatting position. My MO told me to move slow when changing positions. I have also upped my water intake (I drink about 10 glasses of water a day) and that has helped a lot. (Tamoxifen seems to be very dehydrating for some women.)
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Thank you...so good to hear that! Of course my mind automatically jumped to brain mets LoL. I'll increase my water and see if that helps
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A few weeks into starting Tamoxifen I started to get the constant dizziness. Feeling like I would pass-out and even vertigo and lost balance. Talked to my MO and she had me up my water intake. Yes, Tamoxifen can cause dizziness. Since I had quite a few SEs my MO had me take a two weeke break and restart, which helped significantly. She called it rebooting my system. Hope this helps
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Have any of you experienced a blood clot while on Tamoxifen? I have a suspicious patch on the inside of my left calf. It is about two inches in diameter and has a slightly reddish cast. This has been here for at lest a week, maybe longer. The spot is tender to the touch and I can feel something that feels hard, like a dried pea below the skin. I have sent a message to my internist to have this looked at and evaluated.
In 2013 I had a suspected pulmonary embolism and I was concerned about that when my Dr prescribed Tamoxifen.
InStitches0 -
InStitches: Here is info. about a blood test you should have...
Among women taking tamoxifen for early-stage breast cancer, an inherited gene mutation (Factor V Leiden) may increase the risk of blood clots. The researchers note that clinicians may wish to consider testing for FVL prior to prescribing adjuvant (post-surgery) tamoxifen if a positive test would change treatment decisions.
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I've been dizzy and sometimes nauseous since about 10 months after I started Tamoxifen. i felt that may have been too long after starting to blame it on Tamoxifen so I started looking for other causes. One thing that i started to consider was the amount of surgeries and subsequent antibiotics that I'd been on the previous year so I started probiotics, really good ones, which helped quite a bit. Also Tamoxifen can mess with your sinuses and cause or increase allergies. I've found out that I now have chronic sinus infections (probably due to Tamoxifen according to my docs) which can lead to dizziness and nausea. Before BC I haven't had a cold in probably 15 years. Now I get 2-4 every winter. At one point my doc finally gave me Clyndamacin which cleared me right up and resolved the nausea and dizziness but now it's winter again and I'm on my second cold so far. It takes much longer for the dizziness to clear because I don't want to keep taking antibiotics. Anyway, this could be a reason for the dizziness.
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I'm starting Tamoxifen tonight. I've been perscribed 20mg in AM and 20 in PM. This sounds like a lot. Does anyone else take this much for stage 1 IDC?
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That seems too high to me. I take a 20mg tablet once a day.
InStitches
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Same here. As far as I know it's 20mg per day. Some people take 10mg twice a day.
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I take 20mg a day.
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Suzanne50 -- I wanted to use shakeology to help lose weight, but I decided not to risk it because it contains maca. Maca is said to help menopause symptoms, which suggests to me that it has estrogenic properties to it. I haven't been able to find any resource online that indicates that maca is either safe or unsafe for women with a history of er+ BC, so I decided to err on the side of caution.
Sloan15 -- it sounds like you've been prescribed double the normal dose! I've only heard of 20mg total per day, and sometimes it's prescribed as 10mg 2x / day. Definitely call your doctor. Maybe the pharmacy made a mistake?
Hope this helps
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thank you gemini4 for that information. I am going to run it by the nutritionist at MO office. But I will probably air on side of caution as well. I did love that shake - really made me feel good!
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Hi ladies....I rarely post anything but I was wondering if any
of you have experienced a lot of headaches on the tamoxifen?
I've been on it a year and have consant headaches. I also
Have a lot of muscle pain in my legs. My MO said its not
related to the tamoxifen but I'm thinking it has be. I don't
know if its all related or am I just over thinking it.0 -
Sloan, That seems too high to me. I take a 20mg tablet once a day in the mid-day. Check with your MO in why a higher dosage.
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Ramey,
I have been on Tamox for 1 year and I get headaches if I drink alcohol. I know that anyone would get headaches with excessive alcohol, but I sometimes get them after 1 glass of wine.
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Ramey -
I went through a period about 9 months into my Tamoxifen treatment when I was having constant headaches -- a lot of fatigue then too. I took a lot of Motrin and Tylenol and eventually it passed (probably 8 weeks or so). In the last 6 weeks the pain in my hip, knee, ankle and calf on my right side have gotten SO much worse! I can hardly walk sometimes. Motrin and Tylenol takes the edge off, but tonight I got so desperate that I dug out some Norco left over from my surgery back in 2013. I have ordered some doTerra Deep Blie supplement so on see if that helps. I exercise - walk about 5 miles per day.
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I get periodic headaches which my doc says are due to chronic sinus congestion although I have no other issues. And my severe muscle/joint pain is totally under control thanks to Gaia Turmeric, ginger and a really good magnesium. Now if I could just get rid of this high pitched whistle I have had in one ear for about a month. Also blamed on my sinuses but no one has offered to do anything about it.
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I'm going to go out on a limb and say (as I have elsewhere) that Sloan's is a high dose but not an untoward dose--I don't know her MO's logic or her precise diagnosis. Twenty milligrams is the more usual dose, to be sure, and it's the one I'm on. But her medical team may have logic on their side, and for all I know, she will be able to tolerate the side effects.
Or not. But that's something to bring up with her oncologists.
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ladyb - I called my MO today, and his office said yep, 20mg twice a day. I read they give more sometimes when the cancer is metastatic, but I'm stage 1. The office said this is the protocol (40mg/day). With whom should I check to see if this is the right amount?
Does anyone know how you double check a doctor's prescription?
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sloan15, I'd call the pharmacist to see what he says. Just ask if this is the typical dose. I have never heard of more than 20 mg ...
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I read that 20mg is dosage for dcis, preventive breast cancer for brca patients, and something else, and the 40mg was for palliative care and metastatic IDC cancer. The site just said 20 to 40 mg for IDC. I just don't see any research behind 40mg. I'm 5'8, and maybe a few pounds over a good BMI, sho I don't think it's my size. My ER/PR is 90%. I just don't get it.
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Sloan, I am on 20 mgs also. I was under the impression that this was the standard dose. I you could get a second opinion and consult with another MO. I generally take mine late morning. I haven't had any issues. I did stop taking it for a month two weeks before and two weeks after surgery. In fact, I think I had worse hot flashes during that month than I did while on Tamoxifen. Good Luck MJS
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Sloan: the decision is yours, and the discussion between you and your MO. Nothing I might say can or should be construed to pressure you one way or the other. All I've read indicates that 20-40 mg is a normal dose, depending on the diagnosis.
But I don't get it either. I'm rather decidedly beyond 'normal' BMI so that's not it, though I had straight DCIS. Might your MO be amenable to your starting with a 20 mg dose and titrating upward? When do you see the actual doctor next?
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Okay, just called the pharmacist. He said women can take up to 80 mg twice a day -OMG-- and docs try to give you as much as you can tolerate. The pharmacist said maybe my doc is starting me high sho anything lower seems better. Some docs, he said, start people on 10 or 20 and go up later on. Bottom line: the pharmacist said this is not an overdose or wrong in any way. BUT, I'm still going to ask my doc ro show me the study when i see him.
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Sloan, now I am going to ask my MO what is the standard, why the variation and is there a difference in the effectiveness of a larger dosage. 80mg - twice a day WOW!
The decision as we know is always with you and your MO on the aporia te dosage.
This is why I love bco we find out and learn so so much. That was great info Sloan! Are there others that have been prescribed more than 20mg a day? If so, what was the reasoning from your MO? I have added this question to my list for my MO
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Hi Ladies,
I was hoping I wouldn't have to post here
but here goes:I started tamoxifen 2 1/2 weeks ago. The first 1 1/2 weeks were an absolute breeze - I kept saying to my husband that I was like a pre-pubescent girl (!) and that I figured I would just sail through this medication. Well, I then moved to pubescent, LOL. I started having lower abdominal (pelvic) pressure and mild to moderate pain that was constant. Also, the pain was more when there was anything in my bladder so I was constantly going. After many days of that I finally went to my family doctor and he sent me for a vaginal ultrasound, which I had yesterday. The only abnormality it showed was a 7.0 mm endometrial thickness, which he said is "greater than expected for a woman your age" and probably a result of the tamoxifen (after 2 weeks?). So now I have an appointment with a gynecologist in about 3 weeks.
But that's not all.... Yesterday morning I was a bit chilled and all of a sudden my right index finger lost all feeling and turned completely blue up to the second joint! Rubbing and massaging did not help. I quickly walked to my local clinic. By the time I arrived the heat I generated on the walk had helped get the circulation going again, but it had been blue/numb for at least 30 minutes. I saw a hand surgeon who just told me the obvious - a temporary ischemic event in the finger - and prescribed keeping my hands warm, wearing gloves, and soaking in very warm salt water 2X/day and in the event of it happening again. He wouldn't say if it could have been a blood clot and told me to discuss it with my oncologist. It happened again last night when I got chilled again, but the warm water resolved it in a few minutes. Has anyone else had something like this happen?
I emailed my MO last night with all the details and got a message back early this a.m. "stop the tamoxifen for now". It is still only 7:30 am, so hopefully I will get a call from him later in the day with more details. Darn. I don't want worrisome SE's but neither do I want to be without the protection.
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Sloan - Hoping you find a satisfying answer on the dosage (I also take 20 mg per day). It is not a comforting feeling to be second guessing your doctor, so I think it is perfectly reasonable to get an explanation for the factors involved in his decision.
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Sloan -- you can always start with 20 mg per day for a period of time and then increase it to 40 mg once you see how the side effects are going. I'm only on 20 mg per day and like the others based on my reading have only seen that dose or less if a person is not tolerating 20 mg per day. I did some research at one point on splitting my 20 mg does into 10 mg twice a day and found taking it either way was fine.
Let us know what your onc says.
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keepwalking - Wow, in your finger! Let us know what your MO says. Did you have any neuropathy (in the past) before your finger turned blue? I'm on such a high dose that this makes me worry! I read that 20 mg is for DCIS; I have IDC. I'm still going to ask!
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