Bottle o Tamoxifen
Comments
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Thanks all for the info on flying and tamox. I always make a point to move around and I think I'll skip those compression knee-hi's -- although they were a great help to me after chemo since I had lots of fluid and swelling in my lower legs.
Last night I was up at 3 a.m. and never really got back to sleep. Air conditioner was on and I was sweating so badly there were droplets in my hair. Anyone take any supplements to help with their flashes?
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lottie, I don't know if anyone responded to your Q about anything to do about the bad hot flashes. I don't get them so don't can't tell you anything firsthand, but I will pass on that someone here posted about trying taking it at a different time of day, and someone else split the dose (10 mg in am, 10 in pm) and I'm pretty sure there was some variation in their SEs (at least the timing). So if you're taking it in the am, you could try switching it to before bed and see if it helps (or vice versa). Just a thought.
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lottie: My onc suggested Vit E for hot flashes. I think she said it helps about 20% of those who take it. I've been taking it--I figured it might help and couldn't hurt. I've been taking 400iu in the am and again in the evening. I've also heard that effexor works well.
TCK
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Lottie, go back to page 257 and read what KorynH wrote about progesterone cream too. I think different people respond to different things.
I have experience with effexor as an antidepressant in what seems like a previous life and while it was fine for its intended purpose, I had a really hard time getting off of it - very physical withdrawal. I will never take it again. I have no idea if that's typical or not, just commenting on my experience.
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tory: I have heard that about effexor as well.
TCK
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HI ALL
Ive been really busy the last few days so that why i havnt popped in . Its been nearly a week now since my first little white pill and nothing ye,t i seem to be warmer then usuall but defiantly no strong hotties yet and im sleeping like a log at night i hope it all stayer's like that .
JOJO
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Jojo: Welcome to the Tamoxitrain!
Tory: My onco said Effexor would be what he would prescribe if my flashes got too bad. Nothing is too bad to take more pills! I use ice packs when my hot flashes get too much. I take mine in 2 doses at 7 and 7. I normally wake once or twice a night to "cool down" with either taking off the covers or icing down if it is too bad!
I only wish air conditioning would wake me! We use fans here and open windows.
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OH i forgot i have been having 1 side effect im so bitchy some times i feel like im a walking volcano
, and ive also gone off chocolate i was like a junkie for chocoate before .
JOJO
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Hi Everybody,
I am back - after a wonderful holiday! I have skim read some of the later posts but must admit, I have not read all your writings.
Welcome newbies - this is a great supportive site.
To those of you having surgery, very best wishes and Jeanette, best of luck to your husband - and enjoy that holiday when it comes!
RED WINE LOVERS...I came across a site today that confirmed I should not even be drinking my one-glass-a-week red wine treat. Here is the first paragraph of the abstract:
"The phytochemical resveratrol, which is found in grapes and wine, has been reported to have a variety of anti-inflammatory, anti-platelet, and anti-carcinogenic effects. Based on its structural similarity to diethylstilbestrol, a synthetic estrogen, we examined whether resveratrol might be a phytoestrogen. At concentrations (≈3-10 μM) comparable to those required for its other biological effects, resveratrol inhibited the binding of labeled estradiol to the estrogen receptor and it activated transcription of estrogen-responsive reporter genes transfected into human breast cancer cells. This transcriptional activation was estrogen receptor-dependent, required an estrogen response element in the reporter gene, and was inhibited by specific estrogen antagonists. In some cell types (e.g., MCF-7 cells), resveratrol functioned as a superagonist (i.e., produced a greater maximal transcriptional response than estradiol) whereas in others it produced activation equal to or less than that of estradiol. Resveratrol also increased the expression of native estrogen-regulated genes, and it stimulated the proliferation of estrogen-dependent T47D breast cancer cells. [my bold] We conclude that resveratrol is a phytoestrogen and that it exhibits variable degrees of estrogen receptor agonism in different test systems. The estrogenic actions of resveratrol broaden the spectrum of its biological actions and may be relevant to the reported cardiovascular benefits of drinking wine. "
To read the whole article FROM 1997!! go to:
http://www.pnas.org/content/94/25/14138.full
CS, I would appreciate your comments as I had trouble deciphering the terminology.
More later
Cheers all
C
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Thanks Ladies - I happen to have just started effexor and it doesn't seem to help the flashes but I needed it for depression, something I've coped with for decades. Why effexor? because my original medication, paxil, that worked well for me for years, interferes with the metabolization of tamoxifen. I tried celexa but it gave me aphasia and was too sedating. (Of course I could always have my ovaries removed, move to arimidex and get back on the paxil .... not!) I realize that all of these SSRI type meds are hard to get off of, especially effexor, but it's important that I keep depression at bay as best I can at this point in my life. the whole last year has been very hard -- I was a champion breast cancer patient until midway through chemo and then the walls came crashing in. My return to full-time work was unsuccessful -- too foggy and anxious. Basically, I'm a mess, but coping day to day.
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Tory yes my onc wants me to have my ovaries out and I am 43. I have been on tamox for a little over a year now and am still having periods. They come about every 6 weeks and are light and short, but this is one of the reasons he wants my ovaries out. He says he needs my periods to stop completely and they are not doing that. I am very up in the air about removing my ovaries. Even my Onc says he does not like to take them out on someone as young as I, but still thinks it's a good idea. I have not been to speak with my gyn to get her opinion yet. That is coming up soon. I am having a terrible time with the tamox, but I am more afraid of the se's fron no ovaries at such a young age.
On a good note I went for my 3 month check yesterday and he said everything looks great. I am waiting for the call about my tumor markers, but am praying they will be fine. I have been having a LOT of joint pain since I started the Tamox. I asked my Onc yesterday about that and he said it should not cause joint pain. Now I love my Onc, but I think he is crazy on this one. Has anyone else heard if it can cause joint pain?
Thanks ladies,
Susan
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Lottie - absolutely you should take effexor if you're having depression issues. I wasn't advocating otherwise, just sharing my experience. I hope it makes you feel better!
susiered - thanks for sharing. I'm going to have to do a little research on it, I guess. I'm not ready for immediate menopause either, but then what part of this have I been ready for?
I can't answer on the joint pain - I'm only 2 weeks into tamoxifen. Seems like just about anything is possible!
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Hi Susan, Glad everything's looking good. I'm not a doc, and I feel uncomfortable contradicting yours, but (a) bone/joint pain is a relatively common side effect of tamoxifen and (b) only a small percentage of premenopausal women's periods completely stop on tamoxifen yet many benefit. BCO is a very good source for info on side effects and you can see the summary giving both points here: http://www.breastcancer.org/treatment/side_effects/bone_joint_pain.jsp and http://www.breastcancer.org/tips/fert_preg_adopt/fertility/tamoxifen.jsp
While there is debated evidence suggesting that women who have hot flashes, night sweats and joint pain are more likely to be helped by tamox than those who don't, I've never heard a hint of the idea that a woman's periods stopping were linked to efficacy, and I've read a lot of the research. Did your doc explain why he thought this was the case? Its just very odd...tamox is a stimulus "below the waist", acting like estrogen, not blocking it, and that interacts with your other hormones frequently messing up periods but not necessarily stopping them. It actually stimulates ovulation, interestingly.
I don't have any vested interested in whether you have your ovaries out or not, but I do think we all have to advocate for ourselves and have accurate info with which to do so. Definitely consult your GYN. If it were me getting this suggestion I'd also be getting a second opinion from another onc too, but that's just me. In case you didn't read the last page of posts, I put a whole list of Q's I suggested to tory on the same subject in the last page (p. 259) - feel free to go back & look at that if you're interested.
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Lottie - I hope the effexor works for you. Depression sucks, BC sucks. Hang in there! ((((Hugs!!))))
JOJO - So sorry the bitchiness feelings. Maybe eat some more chocolate?
Seriously - HUGS to you too!bcamnb - I will look at that thing on resveretrol but haven't yet. The whole phytoestrogens field is just a quagmire of conflicting data and its really hard to understand it. There's even one of the phytoestrogens that on its own in one animal model of BC actually inhibits the BC growth, as does tamoxifen in the same animal model, but put them together and neither is inhibitory. But the opposite has been seen with flaxseed lignins - on their own they inhibit, and they help the tamox inhib'n as well. But all of this is in a mouse injected with human BC cells, which isn't a woman either. Anyway, I will let you know if I find something useful, but in the meantime I'm not giving up my small doses of wine (my personal choice.
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Lottie: The Effexor might take a bit to get into your system and be something that has to build up before it helps with the hot flashes. At least we'll hope so!
JoJo: I think that sometimes my crankiness has nothing to do with Tamox but people around me being just plain stupid morons!
CS: Yes, BC is defnitely not high on my "to do list" again!
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"JoJo: I think that sometimes my crankiness has nothing to do with Tamox but people around me being just plain stupid morons!" Too funny! I am not suppossed to be cranky after working and then having to come home and be Super Mom and Wife. I don't think they got the memo that those days are over!
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etk: That is the truth! Everyone expects us to have the same energy we had before dx when we've had multiple surgeries. Whenever something happens to irritate me it is always blamed on hormones......just like being pregnant. Of course they don't think they have done anything wrong, ever!
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For those considering removing ovaries, I second everything CS7777 has said. I was 47, premenopausal at diagnosis 2 years ago, have been on tamoxifen since Nov. 2008. Nobody has ever suggested me having my ovaries removed. I just started recently having periods again after a 9 month break and my Onc wasn't happy about it, but he never suggested doing anything besides taking the tamoxifen.
Personally, if I were several years before menopause with an early stage cancer and not BRCA+, I would never let anyone talk me into taking out ovaries. After hearing it described as surgical castration, the idea just horrifies me. I'm already experiencing menopausal symptoms, such as hot flashes, loss of libido & sensation with sex, and getting more forgetful. I just know it would get even worse without ovaries, as they do continue to put out some beneficial hormones even after menopause is complete.
Also, there is a website called Lifemath.net where you can punch in your stats and in my case, with a small node neg. tumor, it seems as if any type of ovarian ablation added to the tamoxifen vs. tamox alone, makes no difference in survival. I take that to mean that even if shutting down or removing ovaries might make a slight difference in preventing reoccurrence, the possibility of causing other problems not related to BC could still shorten my life even more.
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Hi Ladies, Im joining the Tamoxifen-train! I only read the first and last pages of this thread (its huge!), so if Im asking questions that have been addressed recently, I apologise!
Im on tamoxifen for the past 2 months, its all going fine, really. I have some 'warm flushes' at night, but NOTHING as bad as the 'hot flushes' that I experienced when I was in the Chemopause!
Thanks RoseG for mentioning the Lifemath.net website. I visited my Med-Onc recently. He mentioned 'Ovarian Suppression' to me as an additional treatment option to tamoxifen. I really am not anxious for this at present. Im 29 yrs old, and want to enjoy my life and not have to experience hot flashes, mood swings etc for the next 5 years. I punched in my stats to Lifemath, and it seems that like you, Rose, ovarian ablation in addition to tamoxifen versus tamoxifen alone makes no difference to overall survival or recurrence rates. So its tamoxifen alone for me!
One good bit of news, tamoxifen has definitely suppressed my appetite and caused some weight loss (just a little!). Im usually starving at work at lunchtime and when I come home at 5pm, but since starting tamoxifen, Im only 'slightly hungry' and definitely feel full more quickly. Im happy with this side effect for the next 5 yrs!
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TreadSoftly: you are one of the lucky ones experiencing the weight loss. I finished chemo on Feb 1 and gained a massive 14 pounds (1 stone) since then. I think it was partly that chemo messed up my metabolism so much and once my appetite came back I also started to eat all around me. I can't blame the Tamoxifen, but it's probably not helping. I also noticed that my blood pressure was higher than normal probably also an effect of the sudden weight gain. Now I'm watching everything I eat. I started to use the program Fitday to track my food and exercise and that has helped me become more aware of what I'm doing right or wrong.
Like you, my warm flushes are not as bad as the hot flushes during chemo. I bought a Chillow and that really helps at night.
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Treadsoftly I too have noticed some weight loss but I have been trying to exercise more to fight any fatigue that comes along with taking Tamox.....nothing huge, but I will take 5 lbs as I gained so much after being diagnosed as I am an emotional eater, so losing 5 lbs in a month is a huge plus for me......
I have a few question for you ladies, not sure but maybe someone has experienced what I am going to ask........Has anyone ever experienced bad hair not hair loss? Hair that just wont do anything......I have only been on Tamoxifen for one month and the last 15 days my hair is lacking life, fullness. I cannot for the life of me have a good hair day and I feel like it is thinner but I have not noticed any hair loss other than the normal......any suggestions? Also, 2 times this past month I have been completely fatigued.....a feeling I cannot explain......just so sore that it is hard to do almost anything? Talk about being bitchy, my kids and my husband just don't get it.....I know alot of people don't have any SE or many at all and I thought I was going to be one of them as well because I only experienced one flush where I felt nauseas. I am always wondering what to expect next? Do the SE take alot longer to get and if most people are having hot flashes, how come I am not? Trust me when I say I don't want them, I guess I am waiting for the other shoe to drop.......the only true SE I am consistantly am having is insomnia and I am dealing with it.....but any advice anyone can answer would be great.....Thanks, June
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RoseG...I agree about what you said about the ovaries. The only reason I will be having it done is if I still have complex cysts and an enlarged ovary and fibroids after my next ultrasound. That is the only reason it was suggested to me by my onc. I am surprised some oncs suggest it for women with no known issues. My ultrasound is tomorrow and I am hoping for good results since I have not had any pain in awhile. I'm hoping everything went away!
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Hi All!
I too am contemplating the oopherectomy and actually have one scheduled for July 16th.
Lately I've been having second thoughts about it.
I did the Lifemath.net and there is no difference if I do the ooph procedure or take tamoxifen or even if I do both together.
There is a difference 7% difference however if I don't do anything so I feel that I have to do one or the other and personally I'd prefer not to have another surgery.
I started Tamoxifen about 6 weeks ago and so far have not had any "major" issues with it.
I'm 47 years old and I haven't had a period since October - chemo induced menopause I guess. I have a friend (same age as me) that went through all this 3 years ago and it took 1 year for her ovaries to fire back up again - she's back to regular periods.
I initally agreed to the procedure as an alternative to taking Tamoxifen but I'm told that I will have to take another drug - Ramoxifen? - and that has it's own set of side effects.
I called my OB/GYN this morning to set up an appt for a consult before I go ahead. It's a long story but the dr doing the procedure is not the dr I had my initial consult with and now that I've had to time to do some research I have questions and I'm second guessing why I need the ooph at all.
I'm very torn - on the one hand I want to do all I can to fight this but at what point is it overkill?
Anyone else in the same boat?
Marie
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cs7777 thanks for the links and info. I could not believe he was telling me Tamox doesn't cause joint pain. He has to know that it does. I am also worried about the ovaries issue too. I do have another Onc I used for a second opinion. I am thinking I may seriously consider going back for one on this. I hate it because I do love my Onc and have always trusted his judgement. I just don't have a warm and fuzzy feeling about some of the things he has said recently. I also tried to talk to him about the metabolizing test for tamox and he said unless I was taking an anti-depressant or other med that interferes with it, I don't need the test. We all know that is not true. I do not want to be on a drug that makes me feel so bad for 5 years or more if it is not even working. I am very confused and upset about all this. What should I do?
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susiered - my onc said they just don't know enough about the test to know if it's an accurate reflection of how well tamoxifen is working and I've read similar things on my own, so I'm not sure if you should lump that in with the other stuff. Unfortunately, I don't know if you can know how well it's working, but that could probably be said of lots of treatments (chemo maybe?). I do think the ovary thing is worth a 2nd opinion, so maybe you should just ask everything to a 2nd doc for peace of mind.
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MarieK - on there being no difference with both ooph & tamox, my onc admitted that there just isn't a lot of data to support that both are better than one or the other. His fear for me is that since I didn't do chemo (low oncotype) that there's cancer lurking somewhere undetected and he sort of thinks that we should throw everything else we've got at it. My feeling (and I have NO data to support this) is that my estrogen levels were abnormally high as a result of taking birth control pills for 15 years and that doing away with them and taking tamoxifen is acceptable to me, while an oophorectomy on top of that might not be. Still thinking on that one...
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Hi Susiered,
Easy to do the test yourself - I did and I am from Canada. Google Genelex and all the info you need should be right there. If not, personally message me and I will help you out. I am an intermediate metabolizer - so I am VERY glad I did the test.
Take care y'all,
C
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I'm in the same postion as bcamnb. I'm an intermediate metabolizer and I'm glad that I know that--I'm in a study and being an intermediate metabolizer required my dose to be doubled to 20mg twice a day. More followup will be done to see how the increased dose is metabolized in my body.
I totally understand why many women here would not want to go through ooph/hyster. I have a strong family history of bc (maternal grandmother, mother and sister who were all diagnosed by age 40). I was diagnosed at 45. My grandmother survived and lived to old age and did not succumb to bc. My mother was not so fortunate--she had mets and lived for 10 years after diagnosis and passed away while I was in high school. My sister had a recurrence after five years but has NED for over 5 years. My genetic testing was BRCA- ,but there were variations of unknown significance. I have aunts and great aunts who have had bc and ovarian ca. I feel that there are other genes for bc that have not been discovered yet. My bc was 90% ER+. My BS,ONC and GYN all felt that ooph would be beneficial for me. My oncotype score was 16 so I did not do chemo. I'm not saying that I was gung ho to have ooph, but I wanted to do everything I could to lower my estrogen. We'll never know for sure if it was necessary or not, but after seeing what bc can do to a family, I wanted to decrease my chances of ever having to deal with cancer again!
I am not saying all this for sympathy, but just to relate that there are many emotions that enter into the decisions we make about our bc treatments. I also chose to have BLM and many women feel that it is unneccessary to remove a "healthy " breast. I respect those with differing views who have made different decisions. We all have to weigh things out for ourselves and decide what is best for us. Personally, I have no regrets about my BLM or ooph/hyster. Anyone struggling with their decision about ooph/hyster is free to PM me.
TCK
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RoseG: Thanks for recommending that site. I bookmarked it to check out when I'm not busy reading a million boards!
Welcome treadsoftly!
June: My med sheet with my prescription indicates hair thinning is a side effect. Before I started taking it I switched to Pantene Full & Thick Shampoo and it seems to be working well. Some people at church have actually commented my hair is looking good! I have very long hair so I was worried about losing it (I skipped the chemo route).
Yes, we all make different decisions and we all have different cancers. We all know the pain and emotions involved but we don't all go through the exact same thing. We are like members of a big family, who all look alike, but still have different personalities.
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Oh I'm so frustrated, I just wrote out a detailed reply about some of this stuff and then my computer crashed and I lost it. SIGH. Ok, let's see if I can rewrite this...
Hannahbearsmom, your story is the perfect example to show why all this IS so individual, even if the statistics for "your" disease type/stage might say you're low risk for recurrence and mortality from BC. I'm so sorry you lost your mother to this disease and that your family has gone through so much. You and I have almost identical diagnoses in our signature lines, and yet since I have no close family history of the disease, my reaction (and my doctors') about MX vs BMX and yes or no to hyster/ooph, are very different. Neither of us is wrong, obviously, its our own weighing of all of our own risks & benefits. This is why I'm always scared about stating an opinion about what someone else should do here, beyond providing info and suggesting questions they might ask their docs. Hugs to you for all you've been through!
So now I'll dump a bunch of info, and hopefully it'll be interesting to someone...
Tory, it's interesting that your doc admits he doesn't know if the ooph would really help. It seems like this is where your family history might nudge in one direction or another (e.g. hannahbearsmom's family vs mine), and, where he really ought to make a compelling case in comparison to the downsides beyond that he wants to "do more." You're the one who has to live with the decision, so ask, ask, ask until you're satisfied you can live comfortably with YOUR decision! From a biological view, I think it's inappropriate to compare tamox+chemo to tamox+ooph. The reason is because most chemos hit cancer cells from a different signaling mechanism than tamox, while the ooph hits it from the same direction. Think of it like two weapons: tamox is a gun and chemo a knife...these are two methods of attacking the thing and if one doesn't work perhaps the other will. In contrast to chemo (the knife), an ooph is at best making the tamox gun a bigger gun. The data I'm aware of (e.g. the lifemath calculator for many ER+ inputs) would say that for many stage/grade ER+ tumors, the tamox gun was already as big as needed, so making it bigger doesn't matter. This is because both are attacking the estrogen signaling for growth, the tamox by blocking the estrogen receptor and the other by removing ~75% of your estrogen production so that it's just not around to try to bind the receptor. But tamox & its metabolites compete really strongly for binding to the ER compared to your body's estrogen, so removing some of the latter doesn't matter much for many pts. For some ER+ cancers, like those with low oncotype scores, adding the knife/chemo didn't really matter either because the tamox was already a big enough gun; high oncotype score argues that the gun/tamox isn't enough and the knife/chemo is also needed.
It's also important to distinguish between the idea of whether you metabolize tamox and whether its "working" for you. While there is a growing belief based on clinical trial evidence that tamox must be metabolized to "work", there are some studies that show the opposite - that poor metabolizers got the most benefit from tamoxifen. My knowledge of this receptor/signaling system makes me say "get real", but the clinical data give the final outcomes (recurrence and survival) and it doesn't matter if I think its illogical based on molecular studies. What I think it's really saying is that the hormonal signaling system is really complex and that there's a balance of things driving our cancers and that balance is different in every woman. While we do have tests that measure whether you have the enzymes to metabolize tamoxifen well, the evidence is still mixed as to how well that predicts whether tamox will "work" for you. You can find a good very recent review of all this here: http://www.cancernetwork.com/cme/article/10165/1500011. This is a thorn for me because my onc doesn't like to do cyp2d6 testing for these reasons and more (what would we learn that would be actionable?) but despite all the above I'd still feel better if I knew I metabolized it well.
MarieK I have some info I want to give to you too but I have to take a break. Will post it no later than tomorrow.
Good night all -
CS
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