Bottle o Tamoxifen
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Regina--Thanks for sharing the PINK pics! And thanks for honoring all your "T Pals" (even though I am not a regular contributor here). Hope the onc follow up is something simple.
Juli--I had no punding of the pulse in my ears with chemo. I am pretty sure that it's the Tamox, yet I am still hopeful it will resolve as well.
cs7777--I don't even allow myself the countdown of months; I just slog through one day at a time!
Psalm 121--I hope your side effects--at least the most troublesome ones--will resolve. And by the way, I have been hanging out on the motivation thread for about 9-10 months, and the group there has really helped me to sustain motivation for working out on a regular basis (which was really hard after chemo knocked me for a loop last year). If anyone is interested, you will certainly be welcome to join us!
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Thanks, Brenda:
I will visit that thread, for sure....I need all the help I can get!
Our county's Relay for Life event for American Cancer Society is May 21st....just the thought of making that survivor walk makes my eyes tear up. Please pray for me that I will be strong and I can only pray for myself that I honor my bc sisters as beautifully as Gina and others have.
You ladies are an inspiration and I thank God for you and pray for you every day...
((((((Love to my Friends))))))
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Chevy: Well if your weather was like ours yesterday, you might not want to pack away those winter clothes yet!
I did the whole "nesting thing" right before my mx. I felt the need to re-organize all the closets in the whole house and did lots of donations to various places and got rid of a lot of stuff. Of course haven't had any energy to do anything since then.....so it's a good thing I did it then.Thanks for the photos Gina.
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Hello, ladies. I got my Rx for Tamoxifen from my oncologist yesterday, but I'm feeling frustrated by what seems like a lack of options. I have much to be grateful for, including an extremely good prognosis. My chances of reoccturence are low, considering Oncotype Dx score & other factors. So, I'm wondering if Tamoxifen & potential SE are worth it? I know there's a wide range of experiences with Tamoxifen. What I'm wondering is if any of you were given any other options to consider besides Tamoxifen? I'm premenopausal, so the choices I'm hearing are Tamoxifen or nothing (which my oncologist is very opposed to). I'm getting a 2nd opinion, but none of my research is turning up much else. Are these really my only options? Please let me know if you've heard of anything else.
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Candy-
Keep in mind that your Oncotype results are factoring in the use of Tamoxifen.
I have been on Tamoxifen for about a month now, with only very mild hot flashes as side effects.
Mary
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Candy, what was your Oncotype score? I've been on Tamoxifen just over three weeks and like the other Mary, my only SE so far is hot flashes. I started having those during chemo and I can't say they've gotten any worse with Tamoxifen.
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Regina, thanks for the pics! it looks like you had fun!
Candy, I'm in your situation: pre-meno, low chance of recurrence, good oncotype score. I was frustrated by my lack of options too. Mary is right, your oncotype score is factoring in the use of Tamox. That's important to keep in mind.
Everyone is different. Most women don't have SEs with Tamox. I still haven't had a hot flash yet and I've been taking it for 3 months.
There is another drug called Evista that works in the same way Tamox does with a lower incidence of side effects. It may not be as effective at preventing a recurrence of bc, though. Here's a recent article about Tamox vs Evista:
http://www.reuters.com/article/idUSTRE63I3JM20100419
It's frustrating that most of the research on these SERMS is conducted with post menopausal women.
Let us know what your 2nd opinion doc says & good luck!
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I just wanted to put this link up again for the newbies. It's a transcript of a talk called Hormonal Therapy Update: Understanding Your Options. It's full of good info.
http://www.lbbc.org/data/transcript-file/LBBChormonaltherapies10.pdf?tr=y&auid=60655030 -
I have been on T for three weeks now and all is good...I have some hot flashes, but that also could be left over from chemo..I have a cold, but I can't blame it on the T.
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I had a mastectomy in Aug 09, Stage2, Grade 2, er+pr+, her2-, node negative, M0. Based on my Oncotype score of 21, the relative difference between chemo and no chemo was a 3% improvement in distant recurrence. So, I decided against chemo and went with Tamoxifen only. Initially I felt a little off, but nothing worse then feeling light headed. Then I had hot flashes, which were not bad since I live in a cold climate and I'm always cold. I'm 47, premenopausal, and I thought I would go into full on menopause, but so far everything is "ok". Although I do feel like I am waiting for the other shoe to drop and might one day wake up to an entirely different reality. Anxiously awaiting any results from Tailorx which might shed some light on those of us who chose to take Tamoxifen only - no chemo. My Oncologist recently prescribed 50,000iu's of Vitamin D, taken once a week. Wow - after the first dose, I felt like I could jump over tall buildings in a single bound. Now, after my 3rd dose, I just feel like myself again before bc. F***ckg cancer. I still hate that I did everything right: no family history, non smoker, above average condition for my age, almost vegetarian diet and I still got cancer. It was so far from my radar, that I never even for a moment considered it would ever happen to me.
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Hi ColoGal! You in Denver? That's where we are...natives!
I think we always will wait for the other shoe to drop! We just gotta go on....& hope to God, that it doesn't happen again! I just had a Lumpectomy, followed with the MammoSite Device for the Radiation! Been on Tamoxifen now for over 3 months...& really not many side effects....but I think I am a lot older than anyone else around here, ha! And that's why I never DREAMED I would get breast cancer! Scares the livin' daylights out of you! Hang in there Gal! But you know what I have noticed? And I don't know if I can attribute it to the Tamoxifen or not, but my "brain" seems a lot sharper! Like I can read a recipe once, & not have to read it again after each ingredient....And I can figure out "things" better than I used to! Man I hope it just lasts awhile! I almost feel "brilliant!"....
(sort of)........... CandyB.....You know, you can just try it for awhile! Not all of us even have side effects! And the Aromasin or Femara have far greater side effects for MOST women than the Tamoxifen! I was afraid to try the Femara, even though the Onco gave me 3 months supply! Read the other posts for "hormone therapy" to get a better idea.....
Bye kids! Have fun! xoxoxoxo Jeannette
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Hi gals - I am also estrogen positive - was on the fence about tamoxifen. I finished rads last week, the healing of the breast has started and is doing really well. I too have been told that tamoxifen is the only choice and that its a wonder drug. I'm have a bone density scan on Monday, blood work and then its the pill for the next 5 years. I am pre-menopausal - had a hysterocotomy 3 years ago but left my ovaries in for a normal "change" - now here we are 3 years later and breast cancer - I wish the ovaries were gone. When I mentioned that at my appt, she said it wouldn't matter and she doesn't want me to have another surgery this year. She said we can revisit that subject next year. So here we go. Good luck to all of you and lots of warm wishes going your way,
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CandyB, Definitely get the 2nd opinion. Whether or not the 2nd onc recommends the same thing, you will almost certainly get some new info that is somehow helpful. My diagnosis was almost identical to yours. Not surprisingly, the recommendation of 2 oncs was the same: no chemo, yes tamoxifen (I had a single MX, no radiation). An interesting thing the 2nd onc told me is that regular chemos are better for "fast growing" tumors (e.g. high proliferation scores) while tamoxifen is better for slow growing tumors (e.g. low proliferation scores, only ER+ ones, obviously). That's why you take regular chemos for a short period (the stuff's actively growing, and dies quickly when it hits the right stage of the cell-cycle), and tamoxifen for a long period (the cells are dividing only very slowly, so you have to starve them of estrogen for a long time before they die). Made sense to me (I have a biomed research background), and made me more willing to take the tamox. She was also the one who said, look, let's give it a try for a few months and see how you do, and if you're miserable we reconsider. Made me realize that I could change my mind, and that the docs were open to that too, and that also made me more comfortable to try it. I have, and my SEs lasted a couple three months, and are now mostly gone (5+ months in).
So, do you have other choices...well, yes you do: no tamoxifen is the most obvious. Another that they don't usually push for premenopausal women unless tamox SEs are intolerable is ovary-suppression or removal plus an aromatase inhibitor (e.g., essentially they make you post-menopausal and then suppress the rest of your estrogen production by the adrenals like they do for the postmeno women). Obviously this is pretty drastic in comparison to tamoxifen. Then there's evista as the other gal mentioned. In addition, you have choices in your lifestyle - what you eat, how much you exercise, how social you are, what you drink, etc. etc. These do have real effects on recurrances of cancer. See the book "Anti-Cancer" by Serban-Schreiber for a scientifically based evaluation of the "other" (non-western-med) ways we can affect our outcomes. (I should get commissions on that book, for all the times I've recommended it!)
I'll just close by noting that many, many women do fine on tamoxifen. I know there are many on this thread with real issues and I don't want to deny that reality, but also many who don't, so don't be scared off by worry about what might happen. Do remember that while the list of potential SEs is long, the % of people who get most of them is small to extremely small (w/the exception of hot flashes...that % is high). For me the decision was a balance of possible benefit compared to potential (but unknown at the time) SEs, plus whether I could live w/myself if I had a recurrance and hadn't taken it. You'll have to decide what factors are important to you. Best of luck with your decision!
ColoGal - hopefully no other shoe will drop! Thanks for sharing your experience. I also got the big vit D doses...I didn't get the boost you did though.
I think my fingernails are growing faster though.CS
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cs7777: I really enjoy reading your posts. They are always filled with good info and you have such a nice way of simplifying things and relating the important parts to others. I just ordered the book "Anti-cancer" after seeing that several people here on the boards have recommended it. Thanks!
CandyB: As the others have said, if you have problems/SE's with tamox you can always stop taking it and address it with your MD then. I think it's human nature to expect all the "bad" SE's but in reality many women tolerate it quite well. I haven't really noticed anything much besides hot flashes which have been managable and I have been taking it since OCt 09. I also had hyster/ovaries out in Dec so I am definitely in menopause at this point(at age 46). I want to do whatever I can to minimize my chances of a recurrence. Good luck with your decision and we are always here for support.
TCK
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Hi ColoGal: There are at least 4 of us on the boards from Colorado!
I just want to put in a link to the chart on this site with a comparison of the hormonal meds:
http://www.breastcancer.org/treatment/hormonal/comp_chart.jsp
It is a great way to compare different options if one does not work for you. My onco is a bit older and he was around when Tamox first came out and feels it is the safest of all of the meds and said if I can be on it I should take this. He also told me there are some meds to help counter-act side effects if I think they are intolerable. So far they are a nuisence but not worth taking another pill over!
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Hi everyone,
I've been taking Tamoxifen for 3 weeks now and I don't have any SEs. Then I read this article, Toxic Effects of Breast Cancer Hormone Treatment May Herald Success. I'm getting worry about that I don't have any SEs.
Did anyone who doesn't have any SE's talk to your doctor? Are there any new studies about the relationship of Tamoxifen and SEs?
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Hi, Apple I just read the article you posted and I am in the same situation as you. I've been taking tamox for almost 4 weeks and I've had slight night sweats (really slight, it may be that I'm sleeping with a quilt in May) and some digestive issues, but that's about it. Before I read the article, I was thinking what I read here, that a lack of SEs doesn't mean the tamox isn't working, but the article is troubling to me too. One thought that comes to mind: the study was about SEs at 3 months and you and I have been taking it for about 3 weeks, the SEs may develop. Also it just makes me crazy. I hate cancer! Here I am, very relieved that I don't have SEs because I was terrified to take tamox, only to find out that a big study shows that I may be more at risk for a recurrence because I don't have SEs! I really don't know how to process that info. There must be a way to keep up to date but not lose one's mind and fear recurrence at every step!
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Thanks everyone for the input! It's so good to hear the different ideas. I'm not worried so much about relatively minor side effects, more the increased uterine cancer & blood clots. I've always been very healthy (HA! with one minor exception of bc!) and never had problems with the few medications I've taken. I'm hoping that would continue. Have an appt. for the 2nd opinion on the 25th. I have a personal connection with this oncologist, who's head of a major university's breast cancer prevention program, so I'm hoping that personal connection will inspire her to be a bit more open and not so concerned with covering her butt. I also know someone who's a PhD toxicologist with a big pharmaceutical company & have asked him to dig into SEs. I'll pass on anything useful that I find out.
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Hi Gulp, Thanks for your reply.
I feel the same way how you feel. I was terrified to take tamoxifen. After I took my first pill, I was waiting my first hot flush is coming. I thought that I was the lucky one who has No SEs.
I actually feel better than before. I don't have any moodswings which I used to have.
Now, I want Joint pains and some hot flushes!!!
p.s. My oncotype was 22 too
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CandyB, I feel the same way you do about the SEs - its the "biggies" of blood clots and uterine cancer that scare me too. Luckily the actual risk of those is very low, even if it is increased with tamox. Still, if I'm "the one" that's not going to make me feel a lot better. I too am very healthy, good diet, lots of exercise, etc, other than this $*%^ BC which came out of the blue. Sigh...there's just no telling. I was encouraged to have an ongoing relationship with a GYN, preferably one who is knowledgeable about BC patients on tamoxifen...I go to her for the first time next week. It'll be interesting to see how she wants to monitor me.
Thanks Apple1965 for posting that link. I've seen bits and pieces like that, but also bits and pieces showing the opposite (that specific SEs aren't indicative of effects), so I don't have a good feel for this. I suspect it's a nuanced story, with mixed results, but we'll see. Since I'm one of the women "lucky" not to have joint or bone pain, nor many new hotflashes (5 months in) I worry about this too. I'm going to do a full-scale lit search for info on this topic and see what I can find out before my next onc appt at the end of May, and then it'll be a topic of discussion with him. My onc is a reasearch oncologist as well as treating patients, so he should be knowledgeable...but we'll see. I'll of course share what I learn here.
I hope everyone is having a great day!
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Thanks everyone.
I've read at somewhere before that amount of SEs are not indicate of effects .
Many women taking tamoxifen don't have any or have minor SEs.
I live in Hawaii so I can't tell the difference between if I'm having hot flushes or just I'm HOT 0 -
Well CS777 I sure trust your opinion on that section. I hope your apointment goes well with your new GYN. I've done my exams at my internists office with the NP up to this point, but thought I'd ask my BS for a referral to a GYN when I see her in July since she is so great. I'd feel more comfortable asking her than my internist who is a man. I know, silly, huh?
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Ok ladies, I am starting my Tamoxifen tomorrow and the bottle says take 2 tablets by mouth every day. Do you take both tablets at the same time or one in the morning and one at night or does it really matter?
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bookworm-----I took 2 tablets (10 mg each) every morning for 5 years without a problem. Some people do better taking 1 in the am and 1 in the pm. You'll have to try and see what works best for you.
anne
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Cologal, I feel the same way. I think you can't really ask yourself why. Its so random. A person can be as healthy as a horse and still get cancer. I have no family history, don't smoke, eat well and exercise. You will drive yourself nuts being pissed off about it. You are lucky that you have a good prognosis. I've been on Tamox for almost 2 years and have gained some weight, had hot flashes, but they have subsided. Right now, I'm just waiting to change over to an AI with less SE's, because I'm almost through menopause and can switch when my hormonal levels are right.
I worry more about the SE's of Tamox than recurrence of bc. But I also am grateful for the health I have right now.
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I realize this is a bit off topic but a few weeks ago we had a discussion here about vitamin D supplementation so I wanted to follow up. I just got my re-test after nearly 5 months of a repletion regimen and my level rose from 13 ng/ml to (drum roll please) a whopping 60 ng/ml. Yay! "Normal" is generally reported as something like 30-100 ng/ml. So, I'm back to normal. FYI, to get here, I took 50,000 IU 1x/wk for 10 wks (although the first 4 wks were vit D2 inst of vit D3, so not sure that time helped much), and then 5800 IU/day vit D3 for another 10 wks. The GP told me to take just 2000 IU/day after the 50,000 IU/wk part was completed, but my research suggested that wasn't going to be sufficient so I took the larger amount (my research made me comfortable that more wasn't going to hurt me). Anyway, to Sparrow and others who were interested in vit D, there's a real life result of repletion. 0
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Hi cs!
I'm on my 4th week of 50,000 IU vitamin D3 1x/wk. Congrats on 60 ng/ml! I'm going to continue following your regimen, keeping my onc aware of what I'm doing. Thanks for your help! My med onc gave me the all-clear to just see her every 3 months from now on. I cancelled my 2nd follow up appointment this week with my rad onc. I'm so glad I didn't have to go! I had a hard time with rads and I hate the thought of going back into that building. My stomach flip-flops a little just driving by there...
Have a great weekend, tamoxibabes!
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As of today I have one year on the Tamox done four to go. Went to breakfast with a few friends this morning. Thought about sharing this "big" news with them, but decided not to. I get the impression they are so over me having cancer and don't quite get that your life is never quite the same. (It's not like I even really say too much about it.) I knew you ladies would appreciate my milestone. Have a great weekend everyone!
Sue
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Hooray Sue, that's awesome!!!
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Hi All, I have posted in this forum only a few times. I have been on Tamoxifen for 3 months. I had a CBC done on Tuesday this week and got the results this week. My platelet count has dropped from 232 to 124 since I started on Tamoxifen in Feb., also my Hematocrit and Hemoglobin have both dropped and are now low like I am anemic. The nurse called and gave me the results from my radiation oncologist office. (The doctor has not seen the results and I haven't spoke to him). My question is has anyone else had a drop in platelets or other blood work because of being on Tamoxifen? and if so what did your doctor do... I am praying that the medication is what is causing it. The alternative cause would not be good.
Renee
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