Bottle o Tamoxifen
Comments
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MarieK,
I would definitely have that consult with your OB/GYN and perhaps also your onc before you have the oopherectomy. It sounds like what they're planning is having you on tamoxifen for now, and then once you have your oopherectomy switching you to a different drug (I think you meant raloxifene). I would have expected you to say they'd add an aromatase inhibitor once you had the ooph (or were postmenopausal), but the SERMs like ralox and tamox are also used postmen too so its not like its wrong. You're in Canada , where standards may be a bit diff from what I know of here in the US.
Nonetheless, the point is, there are several methods of hormonal treatment for premenopausal women and they each have their advantages and disadvantages, and each of us has to weigh those for ourselves. For premenopausal ER+ BC women, some common adjuvant options are:
- (a) Tamoxifen and other SERMs: most commonly used; blocks ER so that our body's estrogen can't bind, thereby blocking growth signal to BC cells
- (b) Ovary removal or chemical shutdown, plus an aromatase inhibitor (AI): estrogen production in the body is shut down in the ovaries by ooph or the drug lupron , and shutdown elsewhere by the AI (e.g., aromatase, arimidex); no estrogen = no growth signal to BC cells.
- (c) Ovary removal/shutdown plus tamoxifen or raloxifene: estrogen production in the ovaries (about 75% of body's total) is shut down, and the rest is blocked from binding to the receptor by the tamox or ralox.
- (d) No hormonal treatment - some women perceive the benefits of any of the above to be too small compared to the risks and decide to forgo it altogether.
In the US the most common thing for a woman with no "extra" risk factors and no outstanding gynecologic problems is to start with tamoxifen. If she doesn't tolerate it well then (b), (c), or (d) above might be considered. The approach in Canada might be different and perhaps that's why your doctor is pushing you to (c) ASAP, or they may feel its a tad more aggressive and want that for your disease type. Who knows. Each of the drugs (and the ooph) has a different side effect profile and that's something to be considered. So for instance a premenopausal woman who has a history of blood clots won't be given tamoxifen, and they'd push her towards b or c. For postmenopausal women the recurrence rates are slightly lower with adjuvent AIs than with adjuvent tamox (although the survival rates are similar), and that's why the AIs are becoming the drug of choice (in the US) for postmenopausal women (and those who have an ooph or take lupron to suppress ovaries).
Anyway I hope that info puts your treatments into context. Definitely ask your docs again why a, b, or c (or possibly other options) might be better for you given your cancer, history, the treatments you've already had, etc. If you haven't already I'd also point you to BCO's info pages on the hormonal treatments for more detail as they're quite good: http://www.breastcancer.org/treatment/hormonal/
Ok, goodnight again!
CS
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Ellen, Welcome! In response to your dx of fibroids, I'll put in a plug for laparoscopic supracervical hysterectomy. I recommend finding a gyn who does that procedure and asking if it's appropriate and feasible in your case. I had a uterine fibroid the size of a grapefruit, and my gyn was able to remove it through a tiny incision in my navel during the same surgical session as my mastectomy. Very minimal recovery - I was back to doing crunches in a month! The ovaries could have come out then, too, but my onc convinced me to keep them. (And now he's thinking to take them out.)
Greetings to all the other tamoxitrainspotters here. Even though I stepped off the platform, I still read this thread regularly for the good info, funnies, and great vibe from all of you. And here's a plug for the Big T from a conscientious objector: at my 1-yr-post-surgery check today, I got to have three needle-cores taken from a hard little lump on the mx side. We'll know in a week.
CS- glad your exchange went well!!!
Jeannette - my thoughts are with you and your hubby. I guess men get to do exchanges as well!
love and laughter, xox
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Hi all,
I started tamoxifen in February of this year. Had to stop herceptin after 6 months because ejection fraction went down to 25% and is supposed to be over 50%. Followup 1 month ago it was up to 35% which the cardio doc said was great. I also had to start taking lisinopril and bisoprol and Coumadin (for 6 more weeks). It is really hard to tell which of the 3 or 4 different new meds may be causing my problems. Just wondering if tamoxifen may be causing most of them or a combination. Anyhow, I am dead tired, can just sleep and sleep, I am so moody it is ridiculous, one day crying all day and the next being okay. I also have fibro and have constant pain in my upper back and shoulders. It kills me to lift my arms. Also, I can't lose a pound of what I gained from steroids no matter what I do, walking 5 to 6 days a week 40 minutes or so on the treadmill. Could most of these symptoms be caused by tamoxifen? I know the unbearable hot flashes are most likely from the tamoxifen but can all the rest of this carp I am dealing with be from tamoxifen?
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Welcome, blondie. The things you've mentioned are SEs of Tamoxifen, so it's certainly possible.
CS - thanks for all the info, you're a wealth of knowledge!
I wasn't trying to compare the efficacy of Tamoxifen and chemo, just making the point (poorly!) that it's often difficult to know if something is working until much later when it hasn't come back. There are no guarantees with any of it, we just make the best decisions we can and get on with our lives.
Have a good day, everyone!
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CS thanks for your detailed explanation and thanks to those that have also shared their stories here regarding Tamoxifen and OOPH/Hyster.
I should clairfy something - there is no history of breast cancer in my family.
I had a clear mamogram (for all that's worth) the year prior to being diagnosed and it was me who found the lump before my next scheduled mamogram. Prior to that I had been going for regular yearly mamograms and paps.
Also another point I want to clairfy - no dr is pushing me to have the OOPH surgery. It was I who asked for an alternative to taking Tamoxifen and my med onc suggested the OOPH at my post chemo follow up. He immediately sent me to a OB/GYN who scheduled the OOPH. My med onc was going to just put me on Tamoxifen and see what happens over the next 5 years. He's also put me on Zometa for 3 years.
I'm rethinking the OOPH now because I'm wondering if I pushed it and maybe it is an unnecessary procedure given my current diagnosis and history.
Also there is no rush. This procedure was scheduled in Feb but as the date looms (July 16) I'm having second thoughts as to why just OOPH - maybe I should wait and see what happens with the Tamoxifen and revisit the OOPH and possibly a Hyster at a later date if necessary.
I know that ultimately this is a decision I need to make for myself with input from my drs but I do appreciate all of your information and support.
Thanks,
Marie
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Hi All,
RE BC SPREAD TO LYMPH NODE
In the June issue of Homemakers mag, "Health News" section, I read the following (p. 32)
If yo are being treated for breast cancer that has spread to your lymph nodes, your doctor may need to test both cancers to determine the best treatment for you. For up to 39 per cent of patients with breast cancer that has spread, the disease changes when it moves to the lymph nodes - for example, from being estrogen-recepter (ER) positive to ER negative. Treatment plans are typically based on as assessment of the original cancer, so it is worth asking if that treatment is still the best one."
I called the editor to find out the source for this and she sent me the following links:
http://annonc.oxfordjournals.org/content/early/2009/11/03/annonc.mdp427.full
contact info for lead researcher:
http://www.ecrc.ed.ac.uk/groups/studys.asp?studyID=21)
Although this does not affect me, I know there are a number of you on this site to whom it does.
For what it is worth...
Hope you are all having a good day.
C
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bcamnb: Thanks-very interesting info.
TCK
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Interesting info bcamnb. Hopefully this doesn't complicate life for too many but its important to know to ask.
MarieK, Yes, now your earlier posts fit with that whole story. I guess the takeaway is that they want you on a hormonal therapy drug whether you have the ooph or not, so its pretty up to you if you want to go the tamox/no ooph route or the ooph/other drug route. The side effect profiles of the tamox vs AIs are quite different, and the experiences of the women taking tamox vs the AIs are different so its worth investigating pretty closely before switching, esp if you're tolerating tamox well.
Tory, Sorry if I went way deeper than needed. It was an interesting idea to ponder though, so I enjoyed figuring out why these would be same/different.
I definitely agree that we don't know until later if something worked. In fact, we actually never know if they worked, we only ever know if they didn't completely work if we get a new BC or a recurrance. I've really stressed over whether to bother with the tamox for lots of reasons but since I'm tolerating it well I've decided I might as well and hope to eke out every possible benefit, even if I have questions about it. Have a great weekend everyone!
CS
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Hi Ladies...just got back from my pelvic ultrasound. The good news is that the cysts are resolving. They are simple cysts not complex as previously thought. But my endo lining went from 7.1mm to 10mm. I have been on tomax less than 2 weeks. Is this a normal fluctuation or is it increasing due to tamox? I see the gyn/onco on June 17th.
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etk - YAY about the resolving cysts!! Maybe you can just leave all this gyn stuff alone. Re endo lining, they DO expect a thickening of the lining with tamox although in 2 wks that seems awful fast. It would appear that the #s you see are within a normal range - here's one description of the menstrual cycle from http://www.guideline.gov/summary/summary.aspx?doc_id=8239. "Immediately after menstruation the endometrium is homogenous, 1 to 4 mm thick. As the oestrogen concentration rises, the proliferative endometrium changes into a triple-layer structure and its thickness increases to 7 to 10 mm. After ovulation, the echogenicity of the endometrium begins to increase starting from the basal area, and in the luteal phase it has become hyperechogenic throughout with a thickness of 8 to 16 mm." Obviously ask your doc about it too.
bcamnb, I did a little searching on resveretrol per your post a day or two ago. Indeed its quite accepted at this point that it is a phytoestrogen. However, not all phytoestrogens are bad for BC or for tamox efficacy, in fact some have been found to be good for both. This is because phytoestrogens may stimulate via the estrogen receptor, but they may also inhibit through the same one, much like tamox does. Nonetheless, I found an interesting review of what's known about it, updated as of 2008, here: http://lpi.oregonstate.edu/infocenter/phytochemicals/resveratrol/. It seems to say that the preponderance of evidence support beneficial anti-BC effects rather than bad effects. The article you posted does show some stimulation of BC cells in the lab, but the majority of studies (at least as reviewed in the link) are falling the other way. FYI, one of the points in the article you posted was:" Resveratrol is found primarily in the skin of grapes and is therefore relatively abundant in red, but not white, wines." So if you're really worried but still want your wine, you could switch to white.
3 interesting points made in the link above that I found interesting: first, in the presence of estradiol (our bodies estrogen), resveretrol acts to inhibit estradiol's action on BC cells. In other words, resveretrol ought to be good for BC if a woman still has some bodily estrogen. Second, the bioavailability of resveretrol is low in humans because of its rapid metabolism. Third, Resveratrol has been reported to inhibit the activity of cytochrome P450 3A4 (CYP3A4) in vitro (108, 109). Although this interaction has not been reported in humans, high intakes of resveratrol (e.g., from supplements) could theoretically decrease the availability of tamox metabolites, since CYP3A4 is one of the two major enzymes that break down tamox to more active components.
So the evidence on resveretrol seems to be piling up on the side of it being anti-cancer, but human clinical studies are still absent, and some data are on the other side. Personally I think I'll just stick with my moderate wine consumption, but not take supplements. How's that for staying on the fence?
An interesting abstract I found along the way showed that increased fruit consumption reduced the risk of ER+ BC, but increased veggie consumption was not significantly associated. http://www.springerlink.com/content/g84j91307jw6vt24/ Just one study...I know there's a mix of results re fruits & veggies and cancer...but it was interesting nonetheless.
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Hi CS,
I'll look at the links - thanks for them...
The part that concerns me is
"Third, Resveratrol has been reported to inhibit the activity of cytochrome P450 3A4 (CYP3A4) in vitro (108, 109). Although this interaction has not been reported in humans, high intakes of resveratrol (e.g., from supplements) could theoretically decrease the availability of tamox metabolites, since CYP3A4 is one of the two major enzymes that break down tamox to more active components." MOSTLY BECAUSE I am only an intermediate metabolizer and although the wine by itself may be sort of OK, if I combine it with hummus/garlic+/curries with turmeric/curly kale.... well, you get the idea - it compounds into more than just a wee glass of wine. Add that to all the hidden soy in stuff.... I have said before, because of my CYP2D6 results, I am probably more paranoid than most. I JUST WANT THIS (*&&^!%#@)*^% MEDICATION TO WORK! (can be a 40% reduction of recurrance in the other breast....minimal in the 2/3rds one).
My doc actually says 0 tolerance for alcohol but you are right - I'll treat myself with white on occasion ;-)
Off to read the articles....
Thanks again
C
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Caroline, I knew that would be of concern for you that's why I included it. I think your choices are really prudent and I definitely agree to WANTING THIS DRUG TO WORK!!!
That's it, I've just decided, this drug IS perfect for all the wonderful gals on this board and IS going to prevent all future potential BC's for us. So, a shot of tequila all around!
Its sunny outside...gotta be optimistic...0 -
You are the first person i ever saw a post that she lost weight on tamox. my biggest fear!!
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I recently had my 2nd transvaginal sono since starting on the tamoxifen 18 months ago. Both times the lining was at 10mm, my first Gyn said this was borderline normal, recently changed Gyns and the 2nd one said it's completely normal.
Debwa, don't be scared, you can always take it and see how it goes, and stop if it's really intolerable. For me the side effects wax and wane, sometimes they are more noticeable, other times, I barely notice anything. I initially gained about 7 lbs on tamox in the 1st 3 months, but increased my exercise level and the weight came right off. Ever since then, I've had no further difficulty with weight gain, and have maintained steadily at my preferred weight even when I slack off on the exercising a bit or eat more than I should.
As for the phytoestrogens, after extensive reading of both sides of the debate, I see them as just another type of competition for that estrogen receptor, they are much weaker than our bodily estrogen, so they could be beneficial in someone who doesn't want to take tamoxifen but wants to do something natural to lower the risk. If a woman is on tamoxifen, they would compete with it and get into some of the cells, thereby blocking it from being 100% effective, or maybe they would latch onto the receptors that the tamoxifen missed and help out the tamox to keep the stronger bodily estrogens out. And I would think that if a woman has no estrogen in her system (like the women on Aromotase inhibitors) they probably would add back a little estrogenic action into her cells. So I believe how helpful they are really depends on how much estrogen is floating around and whether anything else is or isn't there to block it. This is all my own theory of course, based on all the material I've read about phytoestrogens.
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Wow! I feel like I've been in science class tonight reading all these links. You ladies are so knowledgeable. I am humbled in your presence and grateful for the infomation. I know you help us all learn so much!
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I for one am taking the weekend off from science, and from worrying about all this. It's just the perfect summer day - sunny and still and about 75 degrees here - which is sooo uplifting and definitely "anti-worry". I hope everyone has a great weekend! CS
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I'm in the club ladies. Took my 1st little white pill on Friday, so have had 3 days. I've been debating it for months as it had been recommended even before my diagnosis because of being very high risk. Have looked into all the potential SEs up one side and down the other. I feel like I'm starting out on a road and I have no idea what I'm going to experience on this trip. Problem free? Sure hope so. A few minor speed bumps? Major potholes? I think the minor SE I fear the most is the crankiness some of you have had. I'm a single parent (kids 13, 16, & 20) and feel like I can't be a basket case when my kids depend on me to be the rock. They've been absolutely great through this whole thing. Life has finally gotten back to "normal" for us and I sure don't want to put them through more. Guess we'll just see. I know most women have few, if any, SEs. Guess I can't say I'm a card carrying member of the Tamox club. A bottle carrying member?
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susiered
I am also 43 and being menopausal at 43 was my biggest concern in deciding treatment. My surgical oncologist wanted me to do ovarian ablation (chemically not surgically) ONLY IF I didn't do chemo, which I just completed. I think the theory is that the tamoxifen changes the way your body processes estrogen but the ovarian ablation cuts it off completely and since your cancer (like mine) is fueled by estrogen if a single cell is hiding out somewhere in your body the cut off of estrogen would prevent the cancer cell from thriving in your body. My doc describe it like how a fire relies on oxygen to keep it burning without oxygen the fire goes out. I think the cut off of estrogen helps incase a cancer cell is somewhere other than the breast area and the tamoxifen is to help prevent it in your breast. So its not overkill. I made my descision when my Med Onc agreed with my Surgical Onc on chemo which at least gives me a chance of not going into menopause. I hope. My Oncotype DX score was 17 the very last number in the low range. My surgical Onc is very involved in research and legislation regarding ins coverage for Oncotype testing so he thought my score was in the grey area and the thought of metastatic cancer scared the hell out of me. I can only hope the chemo was effective and I don't have to remove another body part to beat this disease.
I start tamoxifen in August. My Onc told me I could take a 2 month break to give my body a break since I literally just completed chemo.
I would think lonnnnnng and hard before removing my ovaries. I would discuss the chemical shut down with your docs too. At least that is temporary. Good luck!!
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Hi All,
I went to the Onc on Thursday and she said it's time to start Tamoxifen. Called in a prescription.
When I picked it up the pamphlet said that SSRI antidepression medicene will cause the Tamox not to work as well as it should. I'm on Zoloft which I absolutely need to take. Has anyone else run into this problem? What was the solution?
And, shouldn't the dr. or the pharmacy have caught this?
Thanks,
Shelly
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Shelly - you definitely need to talk to your doctor. Yes, I would have thought that SOMEONE would have caught that. I don't have experience with this specifically, but my doc & I did discuss drug interactions and antidepressants came up.
It sounds like zoloft is more important, so you need to find out what your options are. It's a good thing you read the info!
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Shelly, there are other antidepressents you can take if Zoloft isn't one of the ones you can take with Tamox.
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DiDel: you said that you understood from your doctor that "the tamoxifen is to help prevent it in your breast." My understanding is that Tamoxifen can prevent a recurrence anywhere in the body, not just the breast, so that if some cancer cells sneaked away from the breast and were not killed by chemo, the fact that Tamox has cut off estrogen will prevent it from growing. I might be wrong in this. Maybe someone else can shed some light on this.
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Mary, you are right. Tamoxifen blocks estrogen from breast cancer cells, whether they are located in the breast, or escaped away from the breast and into the bloodstream, floating around trying to set up shop in other areas.
Shelly, many women on here are prescribed Effexor, which doesn't cause the same problems as some of the other antidepressants.
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I'll third MaryNY & rgiuff about tamox actions both IN & OUT of breast.
Shelly, you do need to talk to your docs, both the onc & your psychiatrist or whoever is prescribing the zoloft, about the interactions between tamoxifen & zoloft and what to do about it. You can read the BCO page the describe the interaction at this link, for the background about the problem: http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp. In a nutshell, there's strong evidence that tamox needs to be metabolized in order to work, and some of the SSRI's incl Zoloft, are strong inhibitors of the enzyme the metabolizes tamox. There have been several studies showing that women who concurrently took SSRIs or other strong enzyme inhibitors had more recurrences than those who didn't. In other words, the tamox benefit was essentially negated. Luckily there are some antidepressants that aren't strong inhibitors including Effexor as mentioned above. Again, read that link for a summary about tamox and all this, and definitely work with your onc & psych to work out what course to take. Depending on your age and other health adn preferences, there are alternatives to tamox that don't require the same enzyme that you might go down (keeping the zoloft); or, you might switch from zoloft to something else and take the tamox.
And yes, your onc and your pharmacist should have caught that, but this happens. Luckily you're looking out for yourself and caught it! Best to you!
CS
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Welcome to the Tamoxitrain everyone! All aboard!
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Toot toot
!TCK
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Shelly:
I was on Wellbutrin before I started Tamoxifen. I switched to Effexor XR, which seems to be working pretty well. I like you, definitely need to be on the anti-depressant. I have tried many times to go off and it doesn't take long for the sadness to come banging on the door.
Brenda
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i've been on tamoxifen for 2 years and at the beginning i had severe bone and joint pain, severe hot flashes many times daily. these have both decreased drastically after about a year on it. i have had significant weight gain though...yuk...
angela colvin
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Hello tamoxibeauties! I am just doing my usual driveeeeeeeeeeeeeeeeeeebyyyyyyyyyy!
I have been busy with work, with my hubby and just enjoying this great summer!
Got a little sunburn over Memorial Day weekend. We went boating with some friends and I didn't use enough sunblock. Hoping it turns into a tan...lol
Well, hope you all are doing well on tamox. I have doing great lately..no problems..no headaches.
So, take care!
♥ Susie
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Hey everyone, I got negative BRCA test results yesterday! For the most part it doesn't make any difference, but it was info I wanted.
The hot flashes have started, but they're not too terrible and mostly in the middle of the night. The worst part is that I feel overheated almost all the time and then the hot flashes are on top of that. And it hasn't even gotten warm here yet!
Hope everyone's feeling well.
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