Bottle o Tamoxifen
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Kec1972, this is just an option for you to consider... take 20mg twice a week, 10 mg rest of the week. That's what I do. My thinking is that once tamox levels are in your body, they stay up there for quite a while before they clear out. 10mg should keep the constant state of tamox fairly high in your system. But if your doc is freaking out that you are dancing with death, throw him a bone and take a 20 mg tablet every Sunday and every Wednesday. That's what I do. I tell myself that if I metabolize tamox normally, this is providing a fairly high steady state of the drug that peaks UP twice a week. I'm playing it down the middle.
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Runor, how do you feel doing that dosing schedule? Any SE's? I'm just debating whether a 5% potential reduction in recurrence is worth the havoc it could wreak on my liver/uterus.
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Kec1972, I have had a lot of side effects. They might have been worse on the full dose, I don't know, I have nothing to compare them too. In the beginning, first few months in, the joint pain really caught me off guard. It was worst in bed at night after I had been still (sleeping) for a while and then tried to roll over. Holy crap, every joint in my body hurt! It was like I got old overnight. (I was 53 at the time). The joint pain never bothered me during the day. Once I was up and moving I was fine. But now I rarely have joint pain. It took many months to level out, but to my surprise and relief it did.
There are other side effects that come and go. One that is sometimes mentioned is constipation. Tamox slowed my system down. So maybe increase your stewed prunes, or whatever. I have hair loss and sometimes killer leg cramps that will leave me in pain for days after. But overall I think I have had a pretty normal, and most importantly, TOLERABLE time on it.
I think my percentages of recurrence are also pretty low (Oncotype 11). But my overall chances of getting cancer to begin with were pretty low according to those calculators. But I got cancer anyway. I was diagnosed with a radial scar and most of those are not cancer. But mine was. So when I examined the whole event it looked like the stars were not lined up in my favour so I decided to do what I could for myself and take the tamoxifen. But on my own terms, in a bid not to feel too crappy. I have felt crappy but I don't get up every day thinking, man, do I ever feel crappy.
It stopped my periods dead in their tracks. I do not miss those horrendous things one bit !!
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Hi everyone:
This is not my biggest complaint about Tamoxifen, but it is on my mind a lot today. Hair. Or lack of it. I have had it with the lifeless sad hair, the loss at temples and what appears to be a receding hairline. Is anybody doing anything with Tamoxifen-related hair issues and do you have this problem with the temples?
I have been on T for 2.5 years and have to take it for 10. Concerned about ending up with very little hair.
Thanks for allowing a vent.
Love and best wishes to all.
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Willa, I have baby fine hair that wasn't very plentiful to begin with and it is certainly thinner, although longer! I found a biotin and collagen shampoo that does seem to be helping. Haven't been using it long enough to be absolutely certain that it is not wishful thinking on my part...
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Hair is a problem. We eat a lot of mine as it sheds constantly and lands in everything I cook. I try to stir and chop at arm's length. It's a problem.
Have you considered dying your hair? NOT with a permanent dye, but one of those 28 shampoo temporary kinds. Dye coats the hair shaft and can make thin hair slightly thicker and a bit glossier. You don't have to go crazy on the colour, pick something close to or lighter than your own shade. But a temporary dye will plump up a hair shaft and add a wee bit of body and volume to thin, fine hair.
I also feel like I have receding temples but I think it's mostly that the hair there is gray and does not have the oomph and colour of my dark (almost black) hair. So I take a little eyebrow pencil or dark brown eyeshadow and using a brush rub it into that temple hair, just to make it a bit more coloured. The effect is subtle. You can also lightly apply eyebrow pencil to your scalp in the area you think is thinning and this makes your scalp a bit less obvious. Smoke and mirrors!
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I've used topikk I think it's spelled. It's small hair fibers you shake in the thin areas. Works well to blend and cover.
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Beavor, Runor and Rosabella: Thank you all for your helpful and thoughtful comments.
I do color my hair and that does help for a week or so. It looks and feels a lot better.
I saw my dermatologist again yesterday who said she doesn't know why the hair is not growing in the temples. I think it's pretty obvious it's the tamoxifen since there seems to be an issue with the way tamoxifen works and DHT in the scalp, at least based on medical studies that I have read. This is kind of a male pattern thing so it makes sense to me. But I feel nuts based on what she says. Sometimes I am so frustrated with doctors. My hair grew in just fine after chemo and then the temple recession and bad hair started about a year after I began Tamoxifen.
Anyway, she suggested Viviscal after I said I really didn't want to do Rogaine. Maybe I will try the i-restore helmet that others suggest on a different thread. I am just so tired of dealing with cancer related problems and this is kind of the last straw.
Wishing everyone love and happiness today.
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Willa, sorry if I am not in the loop, but what is the problem with Rogaine
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I used rogaine for a year. It does get in your system. And as soon as you stop, you'll lose whatever you may have gained. For me my facial hair increased while my hair continued to decrease. Lots of money down the drain.
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Yikes, I had no idea.
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2Fun - On your Rogaine question, I just want to avoid it if possible only because it's another drug. I'm really sensitive to drugs and the chemo and tamoxifen feel like enough for me right now. It seems some people do very well with it but others (so sorry, Rosabella!) do not have success or suffer side effects. Just one more of those things where everyone is different..
Take good care.
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I got my “information “ about Tamoxifen from my MO. Now I need to read it and decide if I’m going to take it or not. I’d rather not think about it, but I guess that’s not an option
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Hi everyone,
I've been taking 20 mg. of Tamoxifen for three weeks and felt SE's after the first week - some joint pain, fatigue, moodiness, and hot flashes. I asked my MO if I could go down to 10 mg. and she said yes, so we'll see how it goes - took my first half dose this morning. The mood swings are the worst part for me - I usually wake up happy, but wow, I'm a little unhinged on 20 mg.
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just popping in to say that thursday my MO said there is a study going on about different doses of Tamoxifen. He said he had patience on as little as 5 mg a day and some women at 25 mg a day. He made it sound like a study out of Wisconsin. Cause then he said we have like 75 differrnt studies going on now and Chicago had like 120 studies. I'm waiting on a study like that for aromatase inhibitors.
He said this after i complained that he never checks my estrogen levels to see how much medicine i need.
GAILMARY
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It's a ways to go on these studies. I would want a lot of backing before I would decrease it. I'm sure it took many to conclude with 20 mg. Higher than 20 isn't safe. Lower, we'll see after long term studies have been done.
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We may not have studies evaluating a lower dose but I still maintain that it makes zero sense that a woman who weighs 115 would take the same amount as a woman who weighs 215. That's illogical.
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edj3, I agree 100 percent. I weigh 108 lbs and will only take 10mg
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where does it say weight matters? The only med I know that takes weight into consideration is anesthesia. A thin person can produce as much estrogen as a larger one. I doubt it's that simple...
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Weight, how each person metabolizes various drugs, previous response to hormone-based drug protocols . . . the list goes on and none of that is considered. Just boom, 20 mg, take it.
Look, this is my body and I've had it nearly six decades. At this point, I know it pretty well. I've had some pretty unpleasant side effects from drugs and I am not at all interested in a blanket approach that doesn't account for the variety across all women.
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How did they come up with 20 then? This is an old med. My rn took it back in 1990. First it was 5 years. Then after years we're at 10 years for some like me. I doubt they just pulled 20 out of a hat. Like letrozole, why not 2 or 3, it's 2.5. And it is up to the individual. I prefer to go with what has been the case for all these years until a different dose has a lot of backing like 20 has.
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It's 20 mg because that was the dose that was studied.
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Does anyone have any experience with 5mg of Tamoxifen
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Yes I do, RunningGram. I posted on the other thread where you posted.
Here are the studies my MO gave me.
Runninggram -> My MO also started me on 5 mg due to my other chronic illnesses and my concerns. It didn't work out for me but I know other women that are on 5 mgs who are doing wonderfully. I think your MO sounds very understanding and informed. Many women, even those working up to 20 mgs, are often started on 5 or 10 mgs in the beginning. Some are staying at the 5 or 10 mgs for their treatments. Like every cancer, our treatments are unique. I wish you the best of luck as you start out on this part of your journey.
These were a few studies my MO gave to me. Hopefully they will be of help to you too.
Low-Dose Tamoxifen May Be An Option To Reduce Risk of Recurrence (BCO.org)
"Could a lower dose of tamoxifen effectively reduce invasive disease risk?
Because so many women stop taking tamoxifen early, researchers wondered if a lower dose of tamoxifen could still reduce the risk of invasive breast cancer and cause fewer or less severe side effects.
In this Italian study, called the TAM-01 trial, the researchers randomly assigned 500 women diagnosed with DCIS, ADH, or LCIS to one of two treatments after surgery (and radiation, if needed):
- 253 women took 5 mg of tamoxifen once per day for 3 years.
- 247 women took a placebo pill once per day for 3 years; the placebo pill looked just like the tamoxifen pill but contained no medicine.
Half the women were followed for longer than 5 years, and half the women were followed for shorter periods of time.
The results showed that the low dose of tamoxifen helped reduce the risk of invasive breast cancer. During follow-up:
- 14 women taking tamoxifen were diagnosed with invasive breast cancer.
- 28 women taking placebo were diagnosed with invasive breast cancer.
"Our phase III TAM-01 study shows that a lower dose of tamoxifen — 5 mg per day given for 3 years — decreases by 52% the risk of a recurrence in women with breast intraepithelial neoplasia, that is, ductal carcinoma in situ, lobular carcinoma in situ, and atypical ductal hyperplasia," said Andrea De Censi, M.D., director of the medical oncology unit at the National Hospital E.O. Ospediali Galliera — S.C. Oncologia Medica in Genoa, Italy.
"I think our study is practice-changing because we show a great effect that is similar to what was seen with the standard dose in previous trials, but with much lower adverse side effects," he continued. "So the women with this disease can benefit from low-dose tamoxifen — either 10 mg every other day or by cutting the tablets in half, for a dose of 5 mg a day. The most important implication is among the women who are healthy but who may be at risk for breast cancer, [that they] may benefit from a lower dose of tamoxifen."
It's important to know that only 64.8% of women taking placebo and 60.7% of women taking tamoxifen completed the 3-year course of treatment. De Censi said that if compliance to treatment had been higher, he would have expected to see a greater benefit of tamoxifen.
He also mentioned that tamoxifen currently is only available in 10-mg tablets, but prior studies have shown that 10 mg every other day is as effective as 5 mg per day at reducing the risk of invasive disease."
Biologic Activity Of Tamoxifen At Low Doses
"Abstract:
Background: Results of a clinical trial recently completed in the United States indicate that administration of tamoxifen (20 mg/day) to women at risk can reduce breast cancer incidence by approximately 50% but is associated with an increased risk of developing endometrial cancer and venous thromboembolic events. Since these adverse effects may be dose related, we investigated the effect of tamoxifen on several biomarkers when the drug was given at doses lower than those currently in use. Methods: In two sequential experiments, 127 healthy hysterectomized women aged 35-70 years were randomly assigned to one of the following four treatment arms: placebo (n = 31) or tamoxifen at 20 mg/day (n = 30) (first experiment); or tamoxifen at 10 mg/day (n = 34) or tamoxifen at 10 mg/ alternate days (n = 32) (second experiment). Baseline and 2-month measurements of the following parameters were compared: 1) total cholesterol (primary end point) and other surrogate markers of cardiovascular disease, e.g., lowdensity lipoprotein cholesterol, highdensity lipoprotein cholesterol, triglycerides, and lipoprotein(a); 2) blood cell count; 3) fibrinogen; 4) antithrombin III; 5) osteocalcin; and, 6) in a subgroup of 103 women, insulin-like growth factor-I (IGF-I), a possible surrogate marker for breast cancer. Results: After adjustment for the baseline values, there were reductions in circulating levels of total cholesterol and IGF-I of the same magnitude in all three tamoxifen treatment arms. A similar pattern was observed for most of the other parameters. In the placebo arm, fibrinogen level, which showed a decrease, was the only parameter exhibiting change. Conclusions: Up to a 75% reduction in the conventional dose of tamoxifen (i.e., 20 mg/day) does not affect the activity of the drug on a large number of biomarkers, most of which are surrogate markers of cardiovascular disease. This study was hypothesis generating, and larger studies are warranted to assess the efficacy of tamoxifen at low doses. [J Natl Cancer Inst 1998;90:1461-7]"
Trial of Low-Dose Tamoxifen To Prevent Local & Contralateral Recurrence
"Purpose: Tamoxifen administered for 5 years at 20 mg/d is effective in breast cancer treatment and prevention, but toxicity has limited its broad use. Biomarker trials showed that 5 mg/d is not inferior to 20 mg/d in decreasing breast cancer proliferation. We hypothesized that a lower dose given for a shorter period could be as effective in preventing recurrence from breast intraepithelial neoplasia but have a lower toxicity than the standard dose.....Conclusion: Tamoxifen at 5 mg/d for 3 years can halve the recurrence of breast intraepithelial neoplasia with a limited toxicity, which provides a new treatment option in these disorders."
Tamoxifen at 5 mg halves recurrence of breast intraepithelial neoplasia
"Virginia Kaklamani, MD, leader of the breast cancer program at the University of Texas, San Antonio, who moderated the briefing, commented that the study provides valuable information about the dosing of this time-tested drug.
"When you look at drug development, in many cases we rush these drugs out and we don't pay attention to the dose that's needed – we pay attention to the dose that's not very toxic, and so many of the drugs that we use we end up using them at higher doses than we need to use them," she said.
"A drug doesn't work if you don't take it, and so if you can find ways to take the drug, like in giving it at lower doses, then these women are going to benefit," Dr. Kaklamani added.
She said that based on these data she would "definitely" give patients with ADH and LCIS lower doses of tamoxifen, and while she wants to see more data on DCIS patients with further follow-up, "if I have a DCIS patient who's not tolerating tamoxifen at the 20 mg dose, I'd be extremely happy lowering to 5 mg."
Low-Dose Tamoxifen Feasible Option In Breast Cancer
"The results of the study are generalizable, he said, and should be "applicable in clinical practice from tomorrow."
The moderator of a press conference at the symposium at which the study was discussed, Virginia Kaklamani, MD, of the University of Texas Health San Antonio, told MedPage Today, "This study did not compare 5 mg with 20 mg, but the data seen here was pretty similar to data with the 20 mg dose as far as protecting against cancer."
"This is pretty compelling and something I would try in my clinic," she said. "Whether to go lower than 5 mg is an interesting question, but the reason to stick with 5 mg is mainly pragmatic. The smallest tablets we have are 10 mg, so to split them more than in half would be difficult. So I think that for the time being, 5 mg would seem to be a good dose."
Benefit of low‐dose tamoxifen in a large observational cohort of high risk ER positive breast DCIS
"Abstract:
Low‐dose tamoxifen has comparable antiproliferative effect to the standard dose of 20 mg/day in biomarker trials, but its clinical efficacy remains unclear. We assessed the effect of low‐dose tamoxifen on ipsilateral recurrence in ductal carcinoma in situ (DCIS) patients treated in a referral Institution between 1996 and 2008. Following conserving surgery, women received radiotherapy and/or low‐dose tamoxifen upon clinical judgment and patient preferences. Cox regression analyses were used with and without confounding factors. Among 1,091 women with DCIS and median age 53 years (IQR: 46–62), 544 (49.9%) received radiotherapy. Of the 833 women with oestrogen receptor (ER) positive DCIS, 467 (56.1%) received low‐dose tamoxifen. After a median of 7.7 years, 235 ipsilateral recurrences and 62 contralateral breast tumors were observed. Low‐dose tamoxifen significantly decreased any breast event (HR = 0.70, 95% CI: 0.54–0.91) and ipsilateral DCIS recurrence (HR = 0.66, 95% CI: 0.49–0.88), but not ipsilateral invasive recurrence or contralateral tumors. Radiotherapy showed a large significant reduction for any breast event (HR = 0.55, 95% CI: 0.42–0.72). Tamoxifen was more effective on all breast events in women aged >50 years than in women aged ≤50 (HR = 0.51, 95% CI: 0.33–0.77 versus HR = 0.84, 95% CI: 0.60–1.18, p‐interaction = 0.03). Age ≤50 years, positive margins, high Ki67, high grade and low BMI were independent predictors of ipsilateral recurrence. No increase of endometrial cancers and fewer deaths (p = 0.015) were observed on tamoxifen. Low‐dose tamoxifen seems to be safe and effective in reducing ipsilateral recurrence in ER positive DCIS in women aged >50 years. A randomized trial is underway to confirm these findings."
PROFESSIONAL INFORMATION BROCHURE FROM NOLVADEX
(this has links to studies and handy lists of SEs and risks)
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Sorry.....new to all of this. Not sure how it works yet😉Thank you for responding to my question. May I ask why you decided to quit taking the Tamoxifen? I have ALWAYS had horrible anxiety about meds. I am extremely worried about the side effects. I am hoping that there are minimal side effects at 5mg. Any idea if you are going to have side effects, how long it may take to start?
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RunningGram - I totally get it, it's all overwhelming. Take things in "bites and pieces" and then do something fun.
This was my personal journey about Tamoxifen, given I am disabled and have multiple immune issues in addition to now Breast Cancer.Any Early 40's Declining Tamoxifen?
I had to choose quality of life over Tamoxifen. I ended up nearly bed bound after 2 months on 5 mg daily and I just turned 42. I couldn't live that way. So now, my MO is trying me on ovarian suppresion (Zoladex) and then in Sept I will start Arimidex.
I wish you the best. Everyone is very different in how they respond or when they respond to meds. Some will do wonderful and have little to zero SEs, others (like myself) will get the whole slew thrown at them from Day One. Just because my journey turned out this way on Tamoxifen does not mean it is that way for some or all of the other that take it, I'm in the very very very small minority that do extremely poorly with Tamoxifen. The odds are in most peoples favor that they will tolerate it. I've also read that some women change brands at their pharmacys and that has a beneficial effect too. Some don't experience SEs for months and then they adjust and have minimal. There's really no way to tell, you just have to give a try, if you are able, and take it day by day.
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Rosabella - As far as I know, from reading many clinical studies and on the boards here, is that "they" settled on 20 mg Tamoxifen, not because that was the most effective dosage they discovered, but because that was the LEAST TOXIC to the human body and could be "tolerated" safely for the majority.
ETA -- you'd think it be super easy to find the beginning research history of tamoxifen, but I'm finiding it elusive. I did find this research paper that outlines some of the earlier studies done with larger doses of TAmoxifen and some of the toxicity effects they encountered. I still wish I could find exactly why they settled on 20. I believe, it was because they found lower "acceptable" risk of Endometrial and Liver Cancers at this level, rather than at the previous 30 or 40 mg protocols. I could be wrong. If so please someone let me know.
High Dose Tamoxifen in Breast Cancer Bone Metastasis
"The dose of tamoxifen in breast cancer patients has been established to be 20 mg daily. In the past, 30 or 40 mg were used but not continued as long-term administration was suspected as a strong causative factor in the development of uterine cancer. High-dose tamoxifen has been investigated in several trials with doses over 100 mg/m2 [1,2] or even higher than 500 mg/m2 [3,4], but not administered long-term.
High-dose tamoxifen (200 mg daily) was used for the treatment of recurrent malignant gliomasin order to achieve levels sufficient to inhibit pro- tein kinase C within the tumor cells. A response was reported in 8 patients (25%; 4/12) patients with anaplastic astrocytoma and 4/20 (20%) with glioblastoma multiforme [1]. In another published study, high-dose tamoxifen was also given to a small number of patients with malignant glio- mas with reported improvement in 3/11 patients [2]. Hepatocellular carcinoma was also treated by high-dose (120 mg per day) tamoxifen in a mul- ticenter randomized controlled trial; it was not found to prolong survival [3]. A phase II study of high-dose tamoxifen (160 mg/m2) was used for patients with hormone-refractory prostate cancer. In 30 patients, one (3.3%) partial response was observed and in 6 (20%) stable disease. Although rapidly reversible grade 3 neurotoxicity was observed in 29% of the patients, other grade 3 toxities were rare [4]. High-dose tamoxifen was also used in other malignancies such as leukemia and epithelial tumors [5,6]."
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Rosabella, i always thought ones weight might matter cause bodyfat produces estrogen too. This is why i thought they could test your estrogen levels to determine how much you need.
GAILMARY
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I was just at a lecture of a local cancer researcher. The lecture was on current research in tamoxifen and aromatase inhibitors. He was very clear that any cell can produce estrogen. When a cell needs estrogen it sends out a signal to get more. If it doesn't get it from the usual places-ovaries, adrenals etc it will produce it's own. they do not understand why one person produces more estrogen than another. They theorize that one person may have more or less receptors on certain tissues/organs. Also, there is less evidence of AIs as they have only been used for 20 years, so only 15 yrs of data, and a bit more for Tamoxifen.HTH
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Hi. has anyone had liver issues on tamoxifen? I've been taking it for 3.5 year (prior to that I was on AI which left me with horrible joint pain - could not function). My last scan showed my liver to be 20cm (twice the normal size) I had an ultrasound which showed no cysts, suspicious spots etc... It is not fatty liver or non alcoholic fatty liver. I see a liver specialist next week and am quite worried. My hope is that it IS from the Tamoxifin and taking me off of it will repair the damage to my liver. I am scheduled to stop hormone therapy in March 2020 - that would be my five year mark. Any advice/experience would be appreciated. I am 55 and want to feel great again!
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