"Tamoxifen Road" - Support and Encouragement
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Hi from 105 degree heat in Illinois.... that was yesterday and today it is nice. Yeah. Finally, pruned the burning bush, added nutrition and drenching. Hopefully, it will survive.
Found a new fabric softener that I love.... Downey Rosewood. Last year Snuggle had Rose and Peony in a limited edition. And then .... it disappeared. I am stocking up on this one. Who ever heard of limited edition fabric softeners? If you order 3 through Target, you get a 10 gift certificate
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Funny story......daughter comes home, smells something afoul and gets dad. Dad proceeds to burning bush, that I have added the "plant food" to. He says to daughter, pig poo is probably in the plant food. Maybe the neighbors and my dh will think twice about deciding my foliage is too tall, too wide, too whatever. May the gift of pig poo resonate on the 105 degree days, so they don't forget to not meddle in my plants.
Something has been bothering me for a while. A person that I know, had dcis. She goes around telling people that she had cancer, needs food delivered for her family or gift cards to restaurants, for about 4 months, on and off through three surgeries. Meanwhile, I have friends that have died, friends that have lost their jobs, have nerve damage from chemo and have advanced cancer. Some of her friends, argue cancer is cancer. I don't like to see someone monetizing a situation that is not dire. She runs a business that brings in quite a bit of money per month. No one knows that I went through breast cancer and I prefer it that way. I feel bad for those that need additional funds to survive, to eat, to drive to and from appts. Has this ever happened to anyone else?
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It was gorgeous in Illinois last night, so we took the boat out. When I say boat, I mean a fishing and skiiing boat. Not a fancy boat, but we took it in a trade.. it is probably the least fancy boat at our club, but we have so much fun piling in and boating with the kids. Dh is a great driver, so it is a blast
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@Michelle - You are quite the gardener. I'm not. Couldn't tell you a single plant in my yard or how to care for it. When I trim them in the fall I cut them way back and they just grow back better than ever.
Extremely hot here in MI same for the husband in TN.
I'm almost 2 weeks taking Tam. Decided to go for it and take the 20mg every evening. I make sure I have eaten, take with a full glass of water (a little ginger powder), and continue with the Naturopathic Dr's daily supplement recommendations. So far so good.
Hope everyone else that recently started is doing great as well.
Life is busy this weekend playing catch up for work and home. I'll check back in soon.
Keep cool and hydrated!
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Does anyone have any information on the effectiveness of 5mg of Tamoxifen? ER+, stage 1A, node negative DCIS. Oncotype score of 5. Due to anxiety of Tamoxifen, my Oncologist decided to start me at 5mg and try to work my way up to 10mg
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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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Spoonie- I'm so glad you responded. I knew that you had started with the low dose and would have valuable information to share.
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I have been traveling, so must update. Spent the week in Chicago and came home to 110 degree heat. Been working on some fun projects. Here is one.
The clasp is German, the small beads are from the Czech Republic, the rest are Swarovski
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Hi everyone! Sorry I have been off the boards for awhile but I'm back now. I took a deliberate break on an (amazing and much needed) trip to Italy, then when I got back I got slammed with work and also my mother was in the hospital for 10 days and released needing an oxygen concentrator so I was caring for her. Fortunately she is on the road to a full recovery now and weaning off the oxygen tank and steroid treatment so all is good.
So I am around 7 months into a 10mg dose of tamoxifen that I take at 8pm and I'm doing fine on it! The only thing I feel is warmer at night after I take it - that's it. No joint pain, no skin issues (was in the sun a LOT in Italy), eyesight still seems fine. I am still wary about going to the 20mg dose and my MO has told me he can be patient with me on that - he knows I want I lose some weight before I try that dose.
On dosage, Spoonie saved me the trouble and provided all the links re: the recent studies showing the 5mg dose was just as effective and with lower SEs than 20mg! The reason I haven't moved to 20mg yet is also because of my Dad who is a retired oncologist and called me the day before I was going t up my dose of tamoxifen to advise me to stay at 10mg based on the 5mg studies that's were shared at a medical conference he went to. I spoke to my MO about it and while he knew of the studies, he smartly said that they were new and he didn't want me to be the “experiment" - ie there is more data around a 20mg dose - but he also trusts my Dad's opinion so was OK with me staying at 10mg for now. I met someone on the forums who worked at these drug companies and he shared that he thought it was smart I go with the smaller dose as he's noticed these companies always start with bigger doses and pull back. That said I'm willing to try the 20mg dose... I was very, very afraid of taking tamoxifen and now that I crossed that bridge, it's way less scary than I anticipated. One step at a time though, still need to get to a more ideal weight!
On soy, I've read so many studies on both sides that I've decided not to sweat it. Not trying to eat soy but not trying to avoid it either. I did avoid carbs and dairy for awhile, but started eating cheese again in Italy. I need to get back to being more disciplined about it - although now I'm telling myself that tamoxifen will counter the extra estrogen from cheese so I can go ahead and enjoy that cheese!
Anyways, that's my update and thank you Michelle in Cornland for keeping this thread active. I'm back now so will be more regular and back in on the posts with all of you!
Domino and Tucker checking in...
Domino encouraging everyone to enjoy the weekend...
Tucker showing it's totally OK if we need a lift sometimes...
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Pebbles, I took a short break as well. Been working on some projects and finding my concentration becoming restored. After my mother died last year, I had a hard time focusing on my beading, which can be intricate. My projects generally take a couple of weeks to complete.
Still doing well on my 2 x 10mgs of Tamoxifen.
Also have been dragging our boat out a lot over the last month, especially in the evenings. Love the water....
Anyone else doing fun things this summer
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Went to med onc today. He is leaving the cancer center in mid-Aug, so likely won't see him again. We had agreed at my last visit a few weeks ago that Tamoxifen would be the first hormone therapy to try since I have osteoporosis. Today I brought up the 10 mg 2x daily vs 20 mg once daily and he said that wasn't what he was giving me. I don't even remember which AI he said, but I told him that we had agreed on tamoxifen due to my osteoporosis and he agreed again.
He didn't want to prescribe 10 mg pills because he said that 10 mg twice a day would give me a lower dose than 20 mg once a day (due to the half-life thing). He wants me to just dive in and take 20 mg once a day and then deal with side effects if needed. I did more research after I got home . . . 10 mg twice a day for 3 months = steady state plasma concentration of 120 ng / mL compared to 122 ng / mL for 20 mg once a day for 3 months . . . he is right - it is less . . . by less than 2%
I didn't even ask him about starting slower or not increasing dose until after my 2 flights of 4 hours each in the next 3 1/2 weeks.
I also "re-found" some other good info: Tamoxifen itself has half-life of 5 - 7 days. It takes 4 weeks to reach full steady-state concentration of the drug and 8 weeks to reach steady-state concentration for the metabolite so that has a half life of about 14 days.
and re-read this study https://www.researchgate.net/profile/Aliana_Guerri... which had this conclusion "An 80% reduction in blood concentrations does not seem to affect the activity of tamoxifen on biomarkers of cardiovascular or breast cancer risk and may in fact have a more favorable safety profile. Additional studies are warranted to determine the most appropriate dose of this agent." (I think the 80% = 10 mg every other day)
Pharmacy was out of tamoxifen to fill my prescription. I asked and he did do the prescription for 10 mg tablets. They will get it in tomorrow afternoon so will start tomorrow evening. I'm not sure what dosage I will start with, but will take a 10 mg tablet tomorrow night.
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Dorothy, good job standing your ground. Everyone taking these meds has to find the best way to optimize the therapeutic dose. I take my 2 10s together now and am fine, they even help me sleep better. Starting with the 10s allowed me short term success, which led to longer term success
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you all are amazing! So much good info, thanks for your honesty. I will begin tamoxifen in a month, after radiation, and had no idea most of these things! All I could think about was the people who exercise who always say lower weights do more good than heavy weights - like it seems in some cases lower dose is more helpful than bigger dose: I would not have thought to discuss that with my doctor. If TMI I apologize, but doesn’t it push you through into menopause? Or does that depend on dosing? I’m so thankful that there’s been so much Research into breast cancer that there are many good, but confusing, paths too consider
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Agree! Glad you stood your ground DorothyB. At the end of the day we are our own best advocates and we are the ones impacted by the treatment, so we have to weigh all the advice, do our own research and make the best decisions for ourselves.
Michelle - so glad you continue to do well on 20 mg split with 2 10 mg doses. I might try it that way if and when I go to 20 mg. And a boat? How lovely for the summer! My husband and I have been hosting dinner parties complete with a lot of yummy but still healthy recipes we’ve adopted since the diagnosis (almond butter cookies with no sugar and sweetened with honey instead, etc.!).
Domino and Tucker would like to chime in that they are getting summer walks to a nearby restaurant and they love it!
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Tamoxifen didn't push me into menopause, but after about 3 (or so) months into it my periods became farther apart. They come between 5 and 8 weeks apart... usually 6 on the dot but sometimes it's more off. This last time was at the 5 week mark during vacation. It makes planning hard, lol. They are also super super heavy for about 12 hours (so weird) so part of vacation sucked.
MO told me tamoxifen stops periods in some, makes them irregular in some, and has no effect for some.
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Tamoxifen pushed me into perimenopause I haven't had a real cycle since I started taking Tamoxifen. After a year with no period I was placed on Anastrozole. I had some ( ugly 😖) break through bleeding and was put back on Tamoxifen in June last year. My blood work still comes back perimenopause. Next blood draw will be January.
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Hi everyone. I started Tamox on June 20 and am getting Kadcyla every 3 weeks and that started in May. Are any of you feeling like you can't catch a good deep breath? I have been feeling glike this for a few days. Last time it happened it was due to anemia but I am so good about iron rich foods plus SlowFe and I exercise.. Any others feel this breathing issue? I see MO today for Kadcyla so I may bring it up.
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el7277 - yes, please bring it up!! There are pulmonary (lung) issues that are side effects and some can be very serious if not addressed pretty quickly. The ONLY thing my med onc does every visit is listen to my lungs.
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el, the deep breath issue could be related to the mastectomy and tissue expanders. I have not had that problem on Tamoxifen, and I also have some asthma accompanied by anxiety during a flare up. I would inquire with your MO about the meds, after affects of chemo, Tamoxifen and then ask your SO about the tissue expanders
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Dorothy, thank you. I will bring it bgg up today with my MO.
Michelle, the tissue expnders are not fun but I did not know they could cause trouble lime that. Hopefully I can get answers.
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Hi ladies -
On the breathing issue, el7277 I'm glad you brought it up! I have asthma to start with and noticed in Italy that I was more easily winded. I did not think of attributing that to tamoxifen but maybe it's related... I was going to try to increase my stamina working out but may ask my MO about it as well now that it's come up with someone else.
Vargadoll, gb2155 and others - the first 3 months taking tamoxifen, my period (that is usually very regular) was irregular, coming sooner one month and later the other. I asked my MO and he said there was an adjustment period with the hormonal changes and if it was not pushing me into menopause that I might see it go to a more regular schedule within 6 months. Lo and behold that's happened and so far I'm back to a regular cycle, which is partly a relief and partly a, 'shucks, the one side effect I wouldn't mind is further apart periods' LOL. I'm 44 BTW and my mom did not hit menopause until her mid-50's so I think (hope!) I'm a decade out from that too. My MO thinks part of why I'm tolerating tamoxifen so well may be because I'm clearly pre-menopausal and so I'm not confusing any peri- or actual menopause symptoms with tamoxifen because I'm not there yet.
Anyways just wanted to chime in on those topics! Here's another summertime fun pic from Domino
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1 down, 3,651 to go . . . took 10 mg tablet tonight. Might stay at 10 mg for a while or might drop down to 5 mg after loading dose until I get back from vacation which includes 2 flights of 4 hours.
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Dorothy, I thought the same thing early on, but kept taking my meds through vaca and I was fine
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Today I'm thinking I might stay at 10 mg until I get back in the US
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Hi--thanks so much for creating this post. I am 2 years out from surgery, chemo and rads and have been on Arimidex, Aromasin and Letrozole (for one month-3rd time not the charm). Because all 3 caused bad bone pain, stiff hands and trigger finger for me, my MO has me starting on Tamoxifen even tho i had my ovaries removed. Needless to say I am hoping that this med is easier on me. Currently struggling a lot w insomnia as well from past meds. If anyone has any suggestions on what time of day to try T or any other tips, I am willing and ready to listen!
Thanks all,
Traci
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Dorothy- great plan on the 10’s.
Tlgio - ask your MO if you can start with an introductory dose of 10mgs and bump up later. I take two Teva 10mgs a couple hours apart in the evening.
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Hi Ladies
Hope everyone is travelling well
I just dropped by and saw this thread. I finished 5 years of 20mg tamoxifen last December. If anyone has any Q’s I’m happy to try to answer them.
Im now in my 8th month of Letrozole.
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NoPromises2013 - How were your side effects?
With such a long "half life", it takes a long time to get the full steady amount in my system. I've done two days at 10 mgs so far. I'm going to do 20 mgs today, Mon & Wed. That will get me up to the full 10 mg dosage amount in my system about 3 weeks sooner than staying w/ 10 mg each day. I may do some 20 mg days while on vacation also.
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Hi Dorothy B
I tried not to let it affect my day to day living and exercise and it didn’t Never even thought to introduce 20mg dosage slowly just went straight in at full 20mg
I used to get some strange/painful cramping in my legs maybe 3-4x a month reduced libido
Weight stayed steady , increased vaginal discharge.
Vascular dilation ( red blotchiness) on lower limbs on hot days
Apart from that it wasn’t to bad at all .......
Keep going it’s worth it in the long run
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