Bottle o Tamoxifen
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Hi you guys....I felt so crappy yesterday, but now I am writing it down....I'm thinking it might have something to do with that monthly "girl stuff" we used to get when I was much younger! I know even after my hysterectomy I still had "moods" & stuff! Also, come to think of it, same thing happened after menopause! I know the Oncologist said something about being "moody"...but I'm still going to keep track of it. Are any of you as old as me? And since I am always looking something up, I found this..... Sorry the type is so large...I tried to reduce it...Jeannette
How does Tamoxifen work? Since the mid-1970s, tamoxifen has been an important weapon in the battle against breast cancer. Tamoxifen is taken as a pill and works by interfering with the activity of the female hormone estrogen. Estrogen is important to the body because of its role in preparing the breast and uterus for reproduction, controlling the production of cholesterol and preserving bone strength. To prepare for reproduction, estrogen causes cells in the breast to grow and divide. This cell proliferation is needed by a woman if she becomes pregnant in order to produce milk. Cause Cancer is caused by mutations in a cell's DNA. Although estrogen does not cause mutations to the DNA, its ability to cause cell growth and division means that many more copies of mutated cell are created. The larger number of mutated cells increases the risk that a person will develop cancer. In addition, each time that a cell divides, there is a risk that a mutation will occur. Treatment Breast cells have receptors where estrogen binds. This forms a new shape that can then bind with coactivators, supporting cell proliferation. Tamoxifen works by binding with the breast cell receptors which prevents the estrogen from binding and blocks cell proliferation. Approximately 75 percent of breast cancers have estrogen receptors (ER-positive). Tamoxifen is only effective against ER-positive breast cancers. Patients who have been treated for early stage breast cancer by surgery or radiation and whose tumors are found to be ER-positive can be put on tamoxifen for five years. According to the National Cancer Institute, the National Surgical Adjuvant Breast and Bowel Project (NSABP) study from 1981 to 1988 showed that 68 percent of the patients taking tamoxifen for five years remained cancer free for over ten years in comparison to 57 percent for those taking a placebo. A continuation of the study from 1987 to 1993 showed that increasing the time taking tamoxifen to ten years did not increase survival rates. Prevention NSABP ran another study, the Study of Tamoxifen and Raloxifene (STAR), which looked at the benefit of tamoxifen in preventing cancer in high risk patients. High risk factors include a family history of breast cancer, not having children, higher age at first delivery of a child, beginning menstruation early and menopause occurring late in life. The results of this study showed that both tamoxifen and raloxifene reduced the risk of breast cancer by 50 %.It is observed that women who are more feminine or say have high levels of estrogen are at high risk of acquiring breast cancer. Estrogen is known to be a stimulant that promotes the growth of cancer cells.0 -
I started Tamoxifen this week (Monday). My dosage is two 10mg tablets a day. Just wondering if it's best to split the dosage, taking one in the AM, the other in the PM, or take both at once. Also is it best to take with a meal or just with a drink of water?
Another question for you ladies -- do any of you use a Chillow? I've been getting hot flashes at night since I did chemo. Someone mentioned the Chillow on another thread as useful thing to counteract this. I've looked at them on Amazon but there seem to be few different types and maybe because of my chemo brain, I can't figure out the difference between them.
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MaryNY: I hadn't thought of a Chillow! Good idea! I keep an ice pack in the freezer and get up at night to "cool down" when I need to.
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MaryNY: I take my 20 mg dose all at once--that's how mine was prescribed and it's a 20 mg tablet. I take mine in the am and always with food because I've heard that it can cause stomach upset(so far I haven't had that since starting it in Oct). I'm afraid that if I waited to take my medicine later in the day that I would forget. Good luck and welcome to the tamoxitrain!
TCK
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Hiiiiiiiiiiiiiiiiiiiiiii! Just doing my usual driveby! lol
I haven't been on since Easter weekend so I am lost with all of the posts.
Just let me say that I haven't had a headache in weeks now, and, I am so happy. That has been my main problem with tamox. I do feel lucky...hope there isn't bad stuff down the road for me
Well, I can't catch up and I apologize for that. Just praying for all of you and hoping that you are enjoying this beautiful weather!
♥ Susie
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Mary - I am on 30mg/day and try and take it all with my 2nd calcium and 2nd Vit D with supper. If not, I take it with a snack - even 1/2 banana (always take it with food) before I go to bed. I was told if you take it before bed, the SEs you might have will be in the night instead of the day, as the T is supposed to peak in about 5 hours.
Welcome on board! and best of good luck!
C
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Hi MaryNY....I started taking Tamoxifen Feb. 5th, & take it in the mornings with a little snack before Breakfast....You can try it one way, then if you notice anything, try it another time of day.
I think a lot of it depends on how old you are, as to what side effects you might get! I think I wore out my "hot flash" ration years ago. Sleeping soundly would be a nice "perk"
But the Melatonin helps with that a lot! Good Luck! Jeannette0 -
Yesterday I took it at night. I took one tablet with my evening meal and the second with a snack just before going to bed. I'll see how this goes. One disadvantage for me taking it just before bed is that it gives me a reason to snack. I've already put on 13 pounds since I finished chemo on Feb 1 and I know Tamox is not kind when it comes to weight control.
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Mary - I am not quite sure why you are dividing up your T. I know some people take it morning and night 10mg each time. I am taking 30mg and my doc said NOT to divide it up. For six months, I have been taking it all at once - now with supper, which I find easy to remember with my calcium and Vit D). I WAS taking it before bed with a snack but like you, was wanting to cut that food out.
C
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Caroline: I'm not sure why either. I figured since the Tx was filled with 10mg tablets and instructions are to take two/day, that it would be better to spread it out and that it might lessen any SEs. But maybe they just gave me 20mg tabs as that was what the pharmacy had in stock.
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MaryNY & others, You might want to check w/your doc about whether you should take the 20 mg all at once or split it up into 2 10 mg doses. Depending on tamoxifen's pharmacokinetics (the speed of absorption and breakdown), there could be a difference in efficacy of the two dosing regimens. Don't get me wrong, I'm not saying there IS, but there definitely COULD be so it's worth asking your doc.
Re food, this whole thing's been interesting to me... I'd heard warnings from others about possible weight gain before I started and that scared me too. What I noticed when I started tamox was that my satiety feelings were really "off" compared to before, in particular, I didn't have the feeling of being full like before, although I knew I'd eaten my usual amount of food. In addition I had a lot of stomachaches which, before tamox, would have meant I was hungry and needed to eat. I was so scared of gaining weight that I really resisted eating more, but for several months I felt really odd towards food. Does anyone else feel like their actual feelings of being full or hungry changed, or am I just whacko? Thankfully the stomachaches have mostly stopped and my satiety feelings seem mostly back to normal too. Hopefully that will happen with time for others having wt gain issues with tamox too.
CS
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Hi everyone. Well, it's day 6 for me. CS777, I also have a full stomach achy kind of feeling after the 2 or 3 days. My digestive system is off, also gas pains and sort of constipation. It reminds me of how I felt recently after my surgery and taking pain meds. I hope it doesn't last. I was very upset about it. By the way CS777 I liked your idea of taking a picture of my little doodle on my bottle and using it as my avatar. I think I will, thanks.
One thing that frustrates me is that although I do like my oncologist, he only recommended tamox and didn't mention anything else about reducing my risk of recurrence, like exercise, vitamin D, etc. I am trying to learn what else I can do, but I have been feeling overwhelmed. I see calcium was mentioned by some of you. What do you recommend? And I've read about melatonin being helpful.
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Hi everyone: My onco specifically said for me to take my tamox in 2 seperate doses, one in the morning and one at night and to try to do them at 12 hour intervals if I can. He said with or without food, as I wished. I usually have eaten either breakfast or dinner since I do 7 and 7 since that his my husband's med times so it works well. The family that medicates together stays together!
I do get headaches a litttle. I found it interesting about the 5 hour "peak" that was mentioned. My night dose at 7 seems to bother me at about 1 in the morning (6 hours) and again around 3 or 3:30. At least one of those times I end up getting an ice pack at night. I'm hoping that will subside soon though since summer is approaching and we have no air-conditioning!
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cs777:
My Onc told me to take 20 mg every day and gave me 10 mg Rx to start with so I would have the option of taking 10mg in the a.m. and 10mg in the p.m. After a while I thought I'd try taking the 20mg each p.m. hoping my side effects during the day would not be so bad...well the night ones were so disruptive now I'm gonna start taking the 20mg in the a.m. and see if that helps keep the se's at bay so I can rest better. Tried Melatonin....does seem to help me go to sleep but I still wake up about 5 hours later & can't go back to sleep. When I was having chemo and couldn't sleep, I'd just turn the light on & read or plunk on the computer, but my husband's been laid off from work and can't really just start switching on lights in the middle of the night now!
Hello, there bcincolorado!
Hadn't thought of the ice pack!!! One of my friends at work gave me some Root Beer flavored freezer-pops to use against hot flashes....pretty sure she meant for me to eat them....but a few strategically placed.......!!! hmmmm!!
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gulp: I forgot to mention that I was given a nutrition appointment when I was first diagnosed and told to start taking a daily vitamin and calcium. My PS added Vitamin C to the mix too. I HATE taking pills, so I take Viactive Chews and have one vitamin and 2 calcium chews a day. I also found chewable Vitamin C and have 2 of those a day (500 mg each). It is kind of like eating a little candy for the most part. Some of the flavors are pretty good.
Psalm121: Walgreens Drugs Store has some great long ice packs you can get that are filled with some kind of blue gel. They have a cloth that goes over them. They are still pliable when frozen which is great so you can mold it to you head or neck or back or tummy.
I know after my lumpectomy surgeries (2) I was told ice as ok on my surgical side, but after the mx and TE placement, the PS said NO ice packs or heat at all to that area. Not sure of the logic though.
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Hi all,
A question please regarding the ongoing debate for me with tamoxifin. I just found out yesterday that my ER+ status is 30% (forgot to ask the % of my PR+ status). Do any of you know your percentages? I think I saw somebody had said they were 99% positive ER+ somewhere.
Thanks, hope you are all doing well, beautiful sunny day here in Ireland!
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Hi irish:
Glad to hear that the volcanic cloud has lifted and the sun is out.
My initial biopsy report said "ER: >90% nuclear staining. PR: >90% nuclear staining." Following lumpectomy, the pathology report said "the tumor is estrogen receptor strongly positive, progesterone receptor strongly positive." The path report didn't give a percentage.
Then there was the Oncotype result. I know they don't do that in Ireland. That gave me an ER score of 8.7, where a positive socre is >6.5. They say "the magnitude of tamoxifen benefit increases as the ER score increases from 6.5 to 12.5. A score of 8.7 would not seem to be as strongly positive as the biopsy report suggested.
There's the CYP2D6 gene test which checks to see if you are homozygous or heterozygous for the gene involved in the metabolism of Tamoxifen. Mine showed my Tamoxifen status as Responsive/intermediate metabolizer (IM) phenotype. This test was done by an oncologist that I saw prior to the one who's currently treating me. Current onc never mentioned this test. I just realized that we had scant discussion on Tamoxifen. She handed me the prescription when I went to see her after my last chemo treatment and I suppose my head was full of so many other questions at the time, that I didn't ask her anything about Tamox. She is not the type that encourages questions in any case. Other onc said that if one is a poor metabolizer of Tamoxifen, there is little point in adminstering the drug. She also said that intermediate metabolizers of Tamoxifen seem to do better with SEs than strong metabolizers.
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Thanks again, bcincolorado!
We do have a Walgreen's in the area and I will look for the ice packs you mentioned. Also, didn't know about the precaution of no heat/ice on surgery areas....hadn't been doing it but glad to know now not to! I slept with a cool cloth draped over my head one night and DH just rolled his eyes at how silly I looked the next morning!
MaryNY: does "strong metabolizer" explain these meltdown hot flashes I have? I discontinued Tamoxifen for a week and 1/2 prior to my exchange surgery and plan on restarting it next week, but I have had these hot flashes the whole time during the break from T as well.
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Irish, you should be able to get a copy of your path report if you ask. Mine says that I was 50% ER+ and 100% PR+. I believe that the more ER+ your tumor is, the more likely you are to benefit from hormonal therapy. And being PR+ is better for your prognosis than being PR- according to some research I've read and my Onc says that my strong PR+ status is a good thing. However, there isn't much information available on what actual role progesterone plays in the whole thing, as to whether it's harmful or helpful for breast cancer.
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I, too, am an intermediate metabolizer of Tamoxifen. I've been on it for a little over a week and so far, no SE's that I can detect. Maybe there is some correlation, Mary NY.
(Another) Mary
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Psalm121: do you know you are a strong metabolizer? I already had hot flashes which began during chemo. I wake up 3-4 times a night with them. I just throw the sheet back, turn over the pillow to the cool side and usually fall back to sleep in a few minutes. But I've only been on Tamox for five days now so I'm hoping it doesn't get worse. I ordered a Chillow on Amazon. I'll report here how well that works.
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Hi All,
Don't be fooled by lots of SE = good metabolism. As MTG will tell you, she had WICKED hot flashes but found out she was a poor metabolizer. I too am an intermediate metabolizer (that's why I am on 30 mg/day and am paranoid about consuming phytoestrogens which may compete with the T) .
have a great day
C
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Wow! Now I have more to research and keep in my head! I have a call into our breast nurse navigator already and have a list of several questions and just wrote down 2 more....the gene test CYP2D6 and what my path report showed about ER/PR percentages since I don't remember. I know I have copies of everything at home in my "cancer book" that gets bigger and bigger and bigger.
Seems like I can't remember much lately. My PS was telling me yesterday how much my old breast tissue weighed compared to the implant he'll use (when I commented that it felt heavy) and I still can't remember what he said about it. He also told me how much my TE was filled at this point but can't remember that either!
I can't blame it on "chemo brain" since I didn't do chemo....only cancer-brain and getting older!
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Just popping in to say thank you to CS- I saw my med onc today and she's fine with the plan of 50,000 IUs of Vit D3 once a week for 8 weeks and then 2000 IUs a day after that.
I also picked up some glucosamine + chondroitin with MSM for joint pain.Hmm, I dug out my path report and it says my tumor was ER+ 95% and PR+ 86%. I'm glad the Tamox SEs are quieting down because it looks like I need it.
Have a happy weekend everybody!
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Hello Ladies,
Just a quick Susie drive-by, I have been super busy so I haven't been on much and then only for a quick look. All this info has my head spinning, but what's new!
Like you BCINCOLORADO I have such a fuzzy brain and it is a little embarrasing at times... lol! Anyhooooo, gotta run, but I wanted to send everyone (((((hugs)))). Also a shout out for BONNIE
and NANCY as I haven't seen you on here in a little while. NANCY, you must be super busy with all the 4th qtr happenings and how are things going after the loss of the teacher?! REGINA - How are you doing?Have a great weekend!
Kelly
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I should be starting tamoxifen Monday. I had a baseline pelvic ultrasound today The nurse practionier said the uterus was fine but 1 ovary is 10x the size of the other. She said I was fine to take Tamoxifen. I didn't think to question it too much until I got home and started to research enlarged ovary. Now I am a little nervous. I never did get to see a doctor.Does this sound normal or should I question it. I think I will call my oncologist Monday.
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Hey, tamoxibabes (love that term!), great discussion today.
Gulp, I recall a bit of constipation at the start too, so maybe you have the same sort of reaction I did at start. Hopefully yours will taper off too. It took me about 3 months, so be patient.
Your onc is like all my cancer docs - they're just really not into nutrition (and this includes an onc who is even doing a study on vit D...go figure). But, there are some great compilations of "anti-cancer" diet/nutrition/exercise recommendations that are science-based that you can get your hands on w/o the docs. A great, detailed summary that's free is from UCSF - here's the pdf you can download and print: http://cancer.ucsf.edu/crc/nutrition_breast.pdf. A really good book is "Anticancer: a New Way of Life" by David Servan-Schreiber. He's an MD/PhD who's survived brain cancer (incl a recurrence), and he writes from the point of view that while of course we can and must utilize the "standard" western med (chemo, etc.), we can and must also take advantage of all the known "lifestyle" things that help us maintain good health, incl agst cancer (diet, exercise, stress, friends, etc.), and he bases his recommendations on data, which I like. The short summary of both of these is (1) exercise at least 3-5 hrs/wk to a level of brisk walking at least, (2) eat tons of color fruits and veggies per day, (3) eat plenty of fiber, (4) avoid processed foods (incl white bread & pasta), and (5) eat plenty of the foods that are associated w/anti-cancer effects (they include lists and discussion, too long to list here). Anticancer also examines issues of stress, friendships, etc. which are also important.
Regarding Vitamin D, go back to page 246 of this thread for 2 posts I made about it on Apr 6 in response to someone else. Vitamin D isn't PROVEN to be anti-cancer although there is some suggestive evidence, but it IS proven required for bone health and anti-osteoporosis, so it's definitely worth making sure you're replete regardless of possible cancer benefits.
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Hmmm, I owe everyone some more about the dosing diffs since I set off some discussion on that. Interesting how some docs recommend taking the 20 mg in 2 doses while some recommend it in one. I should have done this before posting yesterday, but this diff forced me to look up stuff on the pharmacokinetics of tamox. The upshot is that tamoxifen has a long enough half-life in the body that it builds up over many doses until we reach a pretty steady concentration in the blood of both tamox and its metabolites after 4-8 weeks. After that, each dose does cause a bump in concentration which peaks about 4-7 hrs after the dose, but these bumps are sitting on top of an underlying high level. Think of it like waves on top of the ocean. If you take your 20 mg once per 24 hr, your waves will be a bit bigger than if you take your 20 mg as two 10 mg doses at 12 hr intervals. So, if your peaks are higher are you more likely to have worse side effects? Possibly. And is the timing of some SEs likely to coincide with the peak? Certainly possible. So I'm impressed with you gals who are trying taking it at different times to see if you can tolerate the SEs better. That's clever! And I think no one needs to worry about 2/day dosing vs 1/day dosing - they will largely give the same result. But, for anyone with superbad SEs who's taking 1/day dosing, maybe its worth asking your doc about switching to 2x/day dosing using 10 mg pills. Who knows, maybe lower peak conc'n might help a bit. (Please note, I'm speculating!!)
Have a great weekend everyone!
CS
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CS: Thanks for you well-thought out posts.
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CS: Interesting! You must have done a lot of research there! Thanks!
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