Bottle o Tamoxifen
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Hello ladies, just catching up. I have been busy, DD spiked a fevver again at school today, after being fever free and feeling better on Wednesday. Her doctor called today and the culture came back positive for strep throat.
Work was stressful, but now I am relaxing.
As for se's I think I am managing pretty good, of course for me I have to determine if it is from surgical menpause or tamoixfen.!!!
Have a good weekend~!!!!
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My onc says the metabolizing test is not accurate and he does not use it. So while I am very glad I have no SE's from Tamox (after 3 weeks, anyway), should I be worrying that I am not metabolizing it well or anything? (If there isn't one thing to worry about, there's another, right?)
I was so scared of SE's from this, and now that I'm not having any, I'm worried that it's not working. Is that crazy? is there any other way of knowing how it is going if he doesn't want to do the metabolizing test? He just keeps saying that this is the standard of care and therefore that is what he recommends.
(BTW, I am 52 and was pre-menopausal at dx. Period has not come back since chemo though.)
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Amy is Stong - Nice to see a friendly face from the September rads thread !0
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My oncologist said that if you have no symptons, then you might not be metabolizing tamox and therefore risking permanent side effects with nothing to gain. You can request the CYP2D6 test to see if you are metabolizing it. I am delaying starting it as I will only gain about a 1% advantage against a recurrence by taking it, and, I don't think the se's are worth that. I met 4 women at the support group that took tamox for 5 years and had recurrence's. Now, that is scary. Just so confusing........
Susie
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Amy, my ONC says the same as yours. I keep seeing these "should I be worried" posts and its clear to me that it's because a couple "scary girls" like to post stuff here to cause us worry- for nothing. My advice is to stick to the gals who have been on Tamox for a long time who are kind enough to post their experience here, and to people who not only have "read" about this and that bad thing, but can post the actual study to back up their claims so we can all analyze it for virtues and deficits. (Look at the post count of the poster, that gives you a big clue.) I have found the real studies and read the personal accounts of women who have been taking Tamox over the last 6 months.
I don't understand the agenda of people who post here trying to make us more scared, maybe it's because it's Halloween, but I have learned and put them on IGNORE because I'm already scared enough of the REAL dangers, I don't need to be chasing Tamoxifen ghosts too.
You have an easy ride on Tamox and an ONC you trust. My guess is that both our ONC will do the metabolizing tests in a couple months if we still have no SEs- most especially hot flashes. Meanwhile, don't look a gift horse in the mouth (or believe the scary girls).
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Oh and Amy, you can get the test and DIY if you want, here's a link:
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Oh and here's the real info, the trial of 13K women, half on Tamox and half not, decades before they even thought of having a metabolizing test, where the women on Tamox did so much better they had to call off the trial because it was unfair to the women not on Tamoxifen:
http://www.cancer.gov/clinicaltrials/digestpage/BCPT
Also very interesting to read the part about their SEs... the ones on Tamox reported SEs, but they were the same SEs reported by the placebo group- except for the hot flashes.
Fact, not fiction.
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Hi everyone,
I'm new to tamoxifen. I started taking it almost 2 weeks ago. Aside from some bitchiness and a little less sleep, I've developed an on and off eye twitch. It's so annoying and started the day after my first tamox. Has anyone experienced this? Could it be a SE or is it just from me stressing about SE's?
Thanks,
Deb
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I've been on Tamox for about 1 year. It took about 6 months for me and my family to recognize just how bitchy I'd become. (Aside from horrible hot flashes!) About a month ago, I called my family doc and asked for Effexor. It's a miracle! I have to take it at night because it causes stomache upset for me, but my moods have evened out greatly, and my hot flashes are slightly less severe.
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Donalee- thank you for more good news about Effexor! Everyone seems to do well on it, one BC org pal swears its helping her lose weight (at high dose). I hope Terri is reading this!
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I'm reading, I'm reading.....lol
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debnyc- eye twitch is a new one to me (special for you!). There has been some reporting of eye issues on Tamox, so it's possible. Stinko game we have to play, is this from Tamox or would I be this weird anyway, or for some other reason... Like Helena whose head was itching and she thought it might be Tamox but it was.... head lice!
Here's some info about eye twitching (in general) from the Mayo Clinic:
http://www.mayoclinic.com/health/eye-twitching/MY00102
and the National Institute of Health:
http://www.nlm.nih.gov/medlineplus/ency/article/000756.htm
Some people on Tamox get dry eyes, and both articles cite dry eyes as a possible cause of twitching, but both articles really stress on stress being a cause. My vote (if this was a poll) would be for stress, because Tamox SEs usually take months to kick in, and you said it started in one day. All this is certainly stressful!
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The purpose of this thread is OPEN, UNFETTERED DISCUSSION; specifically, of Tamoxifen. This includes the good, the bad and the ugly, our fears and concerns as well as experiences. Up until a very few months ago (maybe 4 or 5), open dialogue was welcome and encouraged on this thread. Up until a very few months ago, no one was attacked as "having a hell of a nerve" or "being scary". The wonderful thing about this site is we're usually encouraged to express all our questions and opinions. If not here, then where ?
Now, while long tales about being a "lucky charm for the Rolling Stones" (what was the job description for that anyway ?), or daycare hunts truly are entertaining diversions from the BC garbage, this site is called "Bottle O Tamoxifen". Please DO NOT shut down people sharing differing viewpoints,esp the subject at hand. This is NOT the place for that sort of censorship !
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Rach, what an experience with the interview! Still makes for a great reality show!! So I am posting from home...vacation day today...at work yesterday I couldn't get the color to print out on the card! Bummer...our IT guy was in and he couldn't get it to work either, but he said it had something to do with being created on a mac?? we have pc's....prints great on the black & white printer...go figure!!!!!!!!!
I just caught up on all the posts...so I've forgotten mostly everything now!
Juli, have a wonderful trip to Cabo! We are headed down on Nov. 20th!!
Leggy, showed my DH neverland on the internet this morning, he was like 'wow that's NICE!" and said the owners of Rutherford Grill own Bandera's, a restaurant we used to frequent when dating...yummy cosmo's there! But that was then...this is now...LOL!
So Acupuncuture on Wed. didn't seem to help. I was in an awkward position and could not get comfortable...ended up taking Ibuprofen that evening. Then I had my last PT appt yesterday. I had a crazy busy work week and yesterday had a 'copy job from hell' and was standing ALL day on the hard floor and running back and forth to the color copier and my desk getting reports/projects done for people. My low back was killing me!! So the PT said I have really good motion in my back and to keep up the exercises for 3 more months to really strengthen and if it still gives me pain in February to go back to my doc and ask to go to the spine clinic. OK will do....He gave me some good pointers and said pilates / yoga is excellent but to stop when my form gets wobbly...don't push it, like you know I love to do!
Have a great Friday all!
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As a Canadian, I AM impressed, Patty! You are good!!!!
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Hi Susie,
You might get only 1% advantage to the affected boob but up to 40-50% advantage for the other one. That is why I am taking it. It also is my guess the women to whom you referred, were either poor, intermediate or ultra metabolizers of the drug, and therefore, it was not the right dosage for them. That is the reason I got tested. I wanted to know the drug would work maximally for me. I take more than the usual dose as I am an intermediate metabolizer, and after 29 days, I have had a few night sweats but otherwise A-OK. I chose tamoxifen over an AI for the bone protection. Maybe in a few years, I will be switched to an AI. That seems to be the 'in' thing.
Good luck! It IS a hard decision and I totally agree, a confusing one as well. It took me weeks of researching.
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kari- acupuncturists vary widely. My best was a Chinese guy (no surprise eh?). I had acupuncture from a cute young white guy for IVF recommended by my fertility doc, fun, but nothing like the Chinese guy. In Cali I went to another acupuncturist during IVF - a hippie-dippy type chick with crystals and all that, she also could not compare to the Chinese guy. I am not saying they have to be Chinese. My gal pal in PA went to 3 different acupuncturists and the first two were nuts and the third rocked. I am sorry your acupuncturist didn't help and I don't know that they can, but at the very least you should have gotten that cool sleep during the appointment.
I can't figure what the deal is with the pdf not printing for you, it did fine for PattyB Part Deux and she's windows too. A pdf is supposed to be universal, like government forms are on PDF for download. Anyway, would it help if I sent it to you as a jpeg?
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hey, Kari, your IT guy needs another line, 'cause I got the card to print just fine on my HP printer (connected to a non-Mac computer).
And you were JUST about to talk me into trying acupuncture, but I'm also thinking of Yoga and Pilates. Perhaps I'll go DVD shopping -- but then it's probably like having a treadmill (which I do). You actually have to get up and DO it.... Regarding the "scary" possible side effects of Tamoxifen....it's all a matter of perspective. I think every woman must evaluate the benefits versus the risk and make a very, very personal decision. We each own unique DNA and personal health history. Some of us are gamblers, some are not. The benefits of taking Tamoxifen, right down to the actual percentage of reduction of risk of recurrence, will vary tremendously as will the SEs.
Although there can be serious side effects, I'm taking other drugs which probably carry as much or even greater risk (e.g., Zocor). The way I look at it, Tamoxifen's probably not any riskier than the birth control pills I took for 15-17 years nor the estrogen (ERT) I took for 25 years following my hysterectomy.
The person who changed my mind about taking Tamoxifen was my oncologist. He directly asked me, "Would you take it if there were no side effects whatsoever?" When I said, "absolutely!" - he then asked, "Would you take it if it reduced your chance of recurrence by 50%?" When I also replied "Yes", he then asked me why, and I reasoned that I would be willing to tolerate the side effects for that amount of reduction in risk. Actually, it's not reducing my risk by anywhere near 50%, but at this point, it's worth the risk. Later on, I may change my mind.
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Hey Terri!!! :::waving:::
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Hey AmyIs,
My onc was totally unsupportive of my being tested as well - said it was way too expensive. That said, the test IS accurate and, as a result of my not metabolizing the drug as well as I should, he is now interested!!!, has altered my dose, and instead of passing me off to another doc, has retained me as a pt. I think the test is too new for them to be able to really know how to handle those of us who do not fall into the 50% of women for whom it works. There is only one place, apparently, that tests for endoxifen levels (the active agent we need that is produced in the liver from the tamoxifen). I think it is at the University of Indiana, USA. I have no idea if it is available to the public. They are involved in a study right now, which will be interesting to follow. But there are several labs/institutions doing the CYP2D6 tests. I happened to like what I read about Genelex and was really happy with them.
Good luck!
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Oh and Terri, I got an email yesterday from a friend who runs a Boxster club in GA, we were going to try to make a big run some years ago... hadn't heard from him in ages... and the mail was because he's doing a half marathon to raise money to fight cancer because someone close to him got a blood cancer. This !#@!@! SFC is @#@#@ everywhere.
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Thanks, bcamnb!! I just love telling that story. It gives me such a warm, fuzzy feeling. Really! (well, the part about the affection between the two cities, not the part about the explosion).0
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bcamb and AmyIS, I think Susan Love sums it up pretty well here on whether to take the CYP2D6 test:
Here's the link to her site:
http://www.dslrf.org/breastcancer/content.asp?CATID=19&L2=3&L3=7&L4=0&PID=&sid=132&cid=1146
Susan says:
Breast specialists have been aware of the tamoxifen resistance test for a number of years. However, most have considered the test to still be investigational, and were not recommending it to their patients.
I felt the same way until I heard this data presented at San Antonio. Now, I think we do need to consider if and when it is appropriate to recommend that a patient be tested. However, we also have to take into account that only about 10 percent of women are actually resistant to tamoxifen. The test costs about $300. Some, but not all, insurance companies are covering the cost. This means you should sure to check with your insurance company to find out their specific policy about this genetic test before having it done. (Your doctor can do this for you.)
Given that more postmenopausal women are now using an aromatase inhibitor for their breast cancer treatment, tamoxifen resistance testing is less likely to be an issue for this group. However, it is something that premenopausal women, for whom tamoxifen remains the standard of care for breast cancer hormone therapy, should be aware of. The test may also be important for pre- and postmenopausal women who are using tamoxifen as part of their treatment for DCIS..
Depending on how easy it is for you to pay $300 out-of-pocket for a genetic test, there are a couple of ways to proceed. If the cost is not an issue, and you are considering tamoxifen, you might want to go ahead and have the test. If you choose to have this test, you or your doctor can order it over the Internet from a company. A cheek swab is all that is needed to obtain a DNA sample. The swab is then sent back to the testing company, which will send the test results to you and your doctor.
The other option is to start on the drug and see if you are having side effects. If you are, you know the drug is working. If you're not, you know it's not, and you can pursue other options with your oncologist.
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Rachel and all - thank you so much for your feedback. My onco specifically said he did not trust the results of the test and therefore does not use it. But it seems that many other onco docs DO trust/use the test. So teh qeustion is - do I trust MY doctor MORE than all these other ones, and put all my eggs in his basket so to speak? In short - NO - ESPECIALLY if the FDA is saying testing is available right on the package now. I will continue to take the Tamox until my next visit but I am going to discuss this more with him for sure.
Also thank you for the link to the self-test. I just wonder if I did it, and brought the results in, after he specifically said he did not trust the test, if it might not be 'helpful' both medically and to our relationship. I am going to discuss it further with him next time.
Also, I have heard the SE's can take a while to kick in, so maybe I will have some and then be more confident it is working.(I will say - I do have hot flashes, but not many and they are a continuation from chemo. I definitely do have drier eyes, but not terrible, and my face broke out a little, which I read is an SE. But all very minor stuff that I would probably ignore if not for keeping watch specifically for any changes.)
Thanks again ladies.Amy
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Hi cpar,
Yes, I had the test before starting tamox but it was not a blood test, it was cheek swabs (check out the Genelex lab). That is how I found out I was an intermediate metabolizer, like 35% of patients prescribed this drug.
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Amy, I am pretty much in the same place as you. I don't know why my ONC wouldn't want me to take the test, it seems pretty benign, and I think my insurance would cover the cost (?) and even if it didn't, I could cover it and it becomes a wash with the cost of the Tamoxifen itself (why pay for Tamox and take Tamox if it ain't gonna work?). Its more confusing for you because of the chemo, and already having hot flashes. Helena didn't have SEs and took the test and found out she was a big-time metabolizer (yippiee) but I think she did have hot flashes, which is the key indicator. (Joint pain is also shown to be evidence of a lower recurrence rate on Tamox).
I dunno why ONCs are resistant to the Tamoxitest. Maybe because they have grown accustomed to Rx'ing Tamox and of course are just happy to have something to give patients that can help them- and not want to see a patient not take it because of a relatively new test and possibly hurt them. I can see that point too, if its not hurting anything, why not take it?
But for me, I figured I might as well take it until my next check up, if I get the hot flashes that ends that discussion. If I don't, then I'll take the test.
On the other hand, I agree with bcamb, regardless of whether it would irritate your ONC, if YOU feel strongly about it, hell yes bring it up/go for test, whatever it takes. I think its unacceptable that you should be so afraid of your ONC that you would eat the cost of the test just to spare the relationship. There is a thing on the Tamoxitest ordering page that helps you get it paid for by insurance so you wouldn't maybe have to even ask your ONC about that. Its terribly important that we follow our own intuition and control our care. I only wanted to reassure you- not to discourage you from following your own best judgment. This is OUR life, and there's no way in hell I am going to look back if something bad happens and say I didn't follow my own best judgment because I wanted to spare my ONC's feelings! Screw that!
Someone here insisted on an MRI and found their own cancer when the doc wouldn't go for MRI. She saved her own life. That's what we have to do.
Every time this comes up I reconsider getting the test and just doing it- but I figure that
a) by the time I get the test done I'll have a big ol' hot flash-o-rama and have wasted the $300
b) I am afraid of what happens if it says I don't metabolize Tamox
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Ivorymom -- thank you -- and everyone -- for the advice. I believe the best and appropriate thing for me to do now is begin taking tamox and proceed as I need. I have one additional surgery to go through on the 19th of November and will begin the tamox on December 1.
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Hi Rachel! I'm here in all my B%TCHY glory. Going to wait this out because I really don't want to start taking another drug (Effexor) although I know others on here do. I'll wait to see if the SE's diminish first. In the meantime I'm hanging in there! On another note, our little Miata will be going into hibernation in a couple of weeks. ...always sad to see her covered up and stored for the winter.
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cpara- you gonna wanna strangle me but... a lot of gals' surgeons tell them to stop taking Tamox 2 weeks before surgery. Something to do with the blot clotting issue. You might want to ask your surgeon (::::ducking::::)
Terri- well that makes sense about the car in Montreal! If I had a garage I'd spend a lot of time tinkering during the winter. I felt the same way about Effexor, like how could it possibly be a panacea with no drawbacks and I sure don't want to add another drug to my pill box- I already remind myself of my grandma (and a funny scene in Community last night). But everyone, everyone, everyone without exception seems to love that Effexor and have no problem. Anyone? Scary girls? Anyone have a problem with Effexor? And please... please tell me you got your oncs approval before you start your Tamoxibreak....
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Rachel_BC -- no need to duck yet. I have started tamox yet. In fact, my docs will not let me until all the surgeries are complete. I believe I will begin tamox on December 1. Thanks for the heads up though!
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