Bottle o Tamoxifen
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I asked my Onc about that CYP2D6 test over a year ago when I'd been on tamoxifen for about a year. His reply was that he goes by symptoms and since I was having hot flashes and others, he didn't see a need for the test.
Then about 6 months later, I was going through a phase where the hot flashes had pretty much disappeared for awhile. At that point, he said he was ordering the test. Luckily, I came back as a good metabolizer. I asked what he would have recommended if I hadn't and he said lupron and an AI would have been the plan then. I doubt that I would have agreed to that. I don't want to take the AIs. If I can't take tamoxifen for any reason, I would just do natural cures.
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tory ~ Thanks for the caveat on saunas where lymphedema is concerned. It is not an issue for me as I had only one sentinel node removed and my Naturopath works with my surgeon and Radiation Oncologist, so she has all my background and history. She recommended the sauna as I, evidently, don't sweat enough doing exercise. I was surprised at my low circulating vitamin D. I live in Phoenix where we have an abundance of sunshine all year, and was taking about 2000IU in my multi and calcium/magnesium pills. I am just feeling better by the day. Honestly, yesterday and today, I can say I feel better than before my diagnosis last May. I could never have imagined saying that, ever. My wish is for everyone to find somebody to help them learn to live with the tamoxifen, in a good way, and make their body an unwelcome environment for cancer cells.0
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camazur ~ I'm holding you up in prayer and will continue to do so. I wish cancer would get cancer and die.0
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Hi Lisa. My hair came back in curly at first. Short and curly was OK. But then I went on chemo again for bout #2, and it made my hair thin but not fall out like TAC. After that I went on Tamoxifen, and that kept my hair thin and wispy. Yes, I do remember.
Thanks.
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Thx for all the info on the Cyp2d6 test everyone. I talked to the onco once about it and his reply was that he goes by the recommendations of the American Cancer something or the other and that they did not recommend it because it can have conflicting results. Then too the question becomes what to do -- it's still the best we have now. I'm not sure I'm satisfied with that answer. I also asked why not just take the ovaries uterus etc. He said that was not a solution to all the estrogen our bodies produce, at the tumor site apparently estrogen can be released. And there are other organs that do some production. (Of course he said this in a much more sensible way, I'm half asleep). More questions still. Guess I'll go back and talk some more. Just wondering if I should push for it. Then the other questions come -- what to do? I'm having few problems with the Tamox. Flashes are like warm ones and I don't have them all the time, so does that mean I might not be metabolizing the Tam?
Looks like were moving back to Houston too, after the first of the year. Another adventure - new docs etc. It'll be interesting, hope my energy is back for the trip.
So sorry for you relapse Camazar, I really hate to hear that. Hope they can get it all this time. This is what we all dread and fear, It seems to lurk so quietly as if it were a polite disease. Ha! what a joke!
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Ok, I've been on T for about 3 weeks and I really don't have any of the se's they are talking about - no hot flashes, no night sweats. Does that mean the meds are not working or am I just lucky?
Does it take some time for the se's to appear?
My next onc appt is in 2 weeks.
Any info will be appreciated
thanks
Jan
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Morning gals! Jan508.... My few side effects didn't start either right away...& when I DID notice any, they were like "warm waves' but not really "hot flashes'.....I've been on it for 10 months, & I think you will GET some SE's, but they usually don't hang around very long!
I took Tamoxifen for 2 months, wondering if I WAS metabolizing, because I didn't notice any SE's either.... I whined to a different Oncologist, & she finally did the cyp2d6 test, to show that I WAS a good metabolizer after all. She would have rather I take Femara or one of the others, but THOSE SE's sound even more brutal.
Yes, camazur! That is the exact description of my hair now, Ha! "Thin & wispy" But that is nothing compared to you gals that lost it all with chemo! I'm so sorry you are still going through this! (((((camazur)))))...Yikes......., that's what we all dread.
Sunshine....that was good! Yes, I can most definitely live with Tamoxifen & the few SE's I get. I just feel "protected" by taking that little pill every morning with a couple chips & hummus with my coffee, & thinking "Thank you God..." xoxoxoxoxo
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camazur, so sorry you're having the recurrance. My very best healing wishes to you.
jan, i think it's fair to say that the preponderance of evidence says you can't go on whether you have side effects (or any particular side effect) as to whether tamox is "working". as others have already stated in different ways, unfortunately there is no validated method that demonstrates whether tamoxifen is fending off recurrances for any specific individual. the working hypothesis about efficacy is that it requires metabolism of tamox to endoxifen, which requires the cyp2d6 enzyme and hence the focus on the cyp2d6 test, but the data are still mixed as to whether "good cyp2d6" = "strong activity of tamox", so a lot of oncs still don't use it.
even the cyp2d6 test only tests whether you have strong/medium/weak activity in one enzyme that's important to metabolize tamox, but there are other enzymes that are also required, and recent data has found some people with strong cyp2d6 enzyme activity turning out to be poor overall metabolizers. sigh - so complicated. in addition, while the prevailing hypothesis is that endoxifen is the most important metabolite, for years before it was thought that a different metabolite was (4-hydroxytamoxifen) and people focused on that one, so...why are we now more right than before? ack, it all drives me nuts.
an interesting development though, is that some studies are now measuring not just cyp2d6 enzyme type but also the concentrations of the metabolites themselves (especially endoxifen and 4-hydroxytamoxifen) and if a patient shows low levels of the metabolites then they are raising the tamox dose to see if even intermed and poor metabolizers can raise their metabolite concentrations to the same range as normal metabolizers on the standard dose. data so far show they can--cool! So now if someone can demonstrate explicitly that endoxifen and/or 4-hydroxytamoxifen conc is/are THE thing(s) that are responsible for reduced recurrances/mortality, then one may be able to just give higher doses to poorer metabolizers rather than switching people to AIs/hyster/oophs. We'll see.
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ECT-------yes, calcium is fine to take with tamoxifen. I took tamox for 5 years along with increasing levels of calcium and vit.D. Now I take evista (which acts in a very similar fashion to tamox) which is actually an osteoporosis medication, but I use it to help prevent invasive bc (I'm high risk due to LCIS and family history of ILC). I'm up to 1500mg calcium and 1800mg vit D per my gyn.
Anne
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well, thanks for the input.
I guess since I was post menapausal at time of dx maybe I don't feel the s/e's like a pre menapusal person.
who know!
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Thank you again, cs7777...You always have a way of sorting out the technical terms & explaining it to us in understandable terms.
For 2 months, I didn't think I was metabolizing Tamoxifen...no side effects....but then I had the test, & found out I was! And still no bad side effects! And yes, it WOULD be nice, to have some test to see what good our treatments are doing, especially since we have to take it for the 5 years.
For some reason, I feel like if I DID get cancer again, even taking Tamoxifen, I would think that it was always there, just not growing very fast. I also think that we can't tell if we have other little spots somewhere in us, because there are no tests right now for this. The Tamoxifen will do it's job, but if we already have the start of something, I don't think it would help.....Am I just analyzing this way too much?
And Jan, I'm WAY post-menopausal, Ha! So maybe that IS why we don't notice the SE's as much!
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Bone density test tomorrow.
My onc wants me to have it to see where my "starting point" is as I begin Tamoxifen. Did anyone else have it? How does Tamox affect bone density?
Thanks!
Jenny
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JennyB ~ Tamoxifen is supposed to help bone density, the aromatase inhibitors just the opposite. I had an estrogen panel done before I started the tamoxifen, my naturally occurring estrogen score was 27, which is low. http://theoncologist.alphamedpress.org/cgi/content/full/7/2/163 has a good explanation (read the 2 paragraphs under the 2 figures).0
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Thanks, Phxsunshine. Hmm, I wonder why the bone density test, then? I'll ask her at my next appt.
I'm interested in knowing my estroget level, too. That would be interesting!
Jenny 0 -
I have a question for anyone out there tonight...I have been on T for 2 months no problems. I got my period for the first time end of September right after my exchange surgery. I haven't gotten it in October at all but feel miserable. I am having terrible menstrual cramps and have pain in my left ovary but nothing. For those of you who have skipped periods while on T did you have all the symptoms of a period??? My gyn is out of town for the next two weeks. I have an appt on the 11/18 but I feel worried that I may have a cyst that is being aggrevated by T or if the effects of chemo are still wreaking havoc on my uterus?? Any thoughts?
Di
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Jenny, If you're anywhere near age 50 that may be why the doc ordered the bone density test- just common at that age. Otherwise, not sure.
My onc did an estradiol test and my level came back at 40. She said that means my estrogen is on the rise and my periods should come back (oh, yay.) No signs of it yet though.
Sorry DiDel, I can't help you out. Hope you start feeling better soon.
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Just hang on Di....I know someone here can help you with this! Wish I could!0
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DiDel, For what it is worth, I have had symptoms for my period while on T. My last period was in July. I started T in August. My symptoms have never been terribly significant so I haven't thought much about it. I do have mild cramps and I get a bump (almost like a pimple) behind one ear - wierd but true. These symptoms have appeared each month since I've been on T. Hope this makes you feel better but consulting with your doc is best.
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I'm kind of new to this forum. Here it is started tomoxefen about a month ago. I had partial breast radiation, a bit of a sunburn. Anyway depression, mood swings major hot flashes and night sweats insomia, it has been hard. I will see oncologist on friday. But I need to keep taking it also anxiety, but is it from the breast cancer the fear or combination, I am not sure. I need peace and rest this a hard road, even though I have a good prognosis.
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Angel, When I started taking Tamoxifen last April, I was waking multiple times during the night with night sweats. I bought a Chillow and it helped a little but still found all the wakeful nights took a toll on me so I'd be very tired during the day. It has gotten a lot better. The hot flashes are more like warm flashes now and I only wake once a night typically. I flip my regular pillow to the cooler side and get straight back to sleep. My Chillow is chilling in the fridge in case the night sweats come back with a vengeance. I hope your night sweats and hot flashes lessen. You might want to ask the onc for something to help you sleep.
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I think I figured out the reason for the bone density test--not age, since I just turned 40 last month.
I *think* she's considering putting me on bi-yearly Zometa infusions, so she needs it for that.
My hot flashes have been getting better since I started tamox. They were WILD on chemo!
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JennyB - I don't know anything about Zometa, but while T has a benefecial effect on bone density in postmenopausal women, there is some evidence that it has the opposite effect on premenopausal women. I requested a bone density test before I went on it so that I could have a baseline for the future. (I just turned 40 last month too!)
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DiDel - They've subsided now, but when I first started Tamox, I got horrible cramps not when I had my period, but when I was ovulating. So I don't know if you should be concerned or not. I haven't skipped any periods, but they're certainly not as regular as they used to be (on birth control...that other BC that probably contributed to this BC!).
Good luck! I know it's hard not to worry, but chances are that two weeks aren't going to matter except in your stress level. Or is there someone else you can see sooner?
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Just thought I'd share what I've been doing recently to help with hot flashes and no sleep. For the past 4 weeks (1 day a week), I've been going to an accupuncturist. She does accupuncture on me and a Gua Sha massage (in Asian countries this is used on ill people similar to us giving someone chicken noodle soup). Both feel great - after I feel relaxed and enerigized. My hot flashes have diminished and I'm sleeping much better. I use to get a few hours sleep and then wake up and never go back to sleep. Now I do go back to sleep. I found on some nights if I had a little wine I didn't sleep at all. So I gave up the wine. I have given my husband a Gua Sha massage and he said that he felt better, a nice warmth on his back. I've been on T for 3 months so perhaps my symptoms are just fading but thought I'd pass my experience on.
Side note: my accupuncturist said some people feel energized after treatment and some feel drained.
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angel80: I am glad you mentioned the anxiety, especially after radiation. I NEVER suffered anxiety ever, until: RADIATION! Weird, huh? Doc gave me all kinds of anti-anxiety meds, none of them helped (but I have a weird body chemistry anyway, most meds do the opposite). The anxiety stayed with me MONTHS after radiation, gradually waned (while on tamoxifen actually). Things DO get better...takes time...and patience...something we who are in this BC together, I think get LESS tolerance (I did anyway). Best to you~~~juli
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Trying lower dose Tamoxifen.
Got terrible cramping in left leg-could hardly walk. Leg not swollen or red but went for an u/s and all was clear. Onco said no other alternative med for me since AIs not good for my rodded, scoliosis spine. Stayed off the T for 6 days and felt better. Two days ago started with half pill and now I get dizzy-which ginger really helps. I actually asked my onc if I could try a lower dose. I figured lower was better than nothing. Can anyone relate?
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Karenj, I had leg cramps - not terrible though - shortly after starting T. Onc. said to drink tonic water. I'm avoiding high fructose corn syrup which inexpensive tonic water contains. Plus I believe the quinine in tonic water has some risks. My naturopath said have a banana a day. That has done the trick for me.
I tried taking half dose of T for a couple of weeks but it didn't seem to change anything.
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Thanks for explaining why I now have such a big darn gut. I had no idea that the tamox would make me bloated. I guess I am stuck with it.
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Ok, so my cravings have been for sweets, and I NEVER eat sweets? What's up with that? Is it the T? Been on it about a month. No other S/E's except for a little mood swing.
Jan
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Hi Girls,
So I've been on the Tamox for about a month now...i think, and it's been uneventful really as far as side effects, event had any...suddenly in the last week I've been getting waves of nausea throughout the day on and off and I'm EXTREMLEY tired at nighttime. Also....this is a little strange, but my pee smells different....wtf?
It's possible I just have a bug or something, but just wondering if anyone has had a similiar experience with getting S/E after being on it for a month
Mo
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