Bottle o Tamoxifen
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re: peach fuzz, I looked on the internet and a woman on
Tamoxifen said she used this and it solved her problems here is the name and company:it's a small tube spring like to take facial hair off
Epicare : for facial hair softer than strips Epicare Threader from
Bellabe.com
Welga
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I've been on the train now since the end of January and either it is so hot now in Colorado (with NO air conditioning) that I blame the heat for any "hot flashes" I get or I'm wearing almost nothing now or my body is finally adjusting and the hot flashes are subsiding.
I'm still pretty emotional and can cry at the drop of a hat since I went on it and definitely have anxiety more.
No hair loss, but using Patene Full & Thick (I already had thin hair) since before I took my first pill and read it was a possiblity to have hair thinning. So far so goo!
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Dear Bottlers,
I meet with my Onco today--surgeon says chemo not helpful, so Tamox is my next stop--and I can't tell you how much this thread has helped me! Thanks to reading your concerns and suggestions since my surgery, I've radically changed my diet, started a more rigorous exercise program, lost weight and tried to clear my mind with meditation. (I'm such a chatterbox, just shutting up while awake has been quite a challenge!(: )
I don't suppose you're every ready for starting a pill that may or may not make you feel lousy but all this info has really helped me take a breath and go into this next step prepared as much as possible. So--thank you! One question: anything you wish you'd ask the Onco during that initial consult? Or just think I should? Thanks!
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Ansar, did you have a sentinel node biopsy? your sig has 0/0 nodes.
When you go to the oncologist, take a second set of ears with you or a tape recorder or take notes. There will be a lot of information and you may forget a lot. What ever you don't fully understand ask about. Also, try to listen. The onc will probably have you do some bloodwork and will have you back in the office again soon so if you forget anything you can ask then.
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Waldo, thanks! Yeah, I didn't get how to fill out that node thing. But I did have a sentinel biopsy and there was no node involvement. My husband is coming along and he writes down EVERYTHING. Boy did that help when I spent five weeks waiting for my surgery, and could never remember just what the plan was, and why....
I'll be interested to see if the Onc is going to want me to start this pill immediately or if it can wait until the kids are back in school in mid-August. I mean, I suppose it's up to me, but if it's safe I wouldn't mind dealing with possible early (or persistent) SE's without tanking their summer (I'm home with them). I guess I'll see how urgent it is to get some recurrence-fighting forces in there right away...
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Mine wanted me to start pronto- I waited till after i had the implant exchange. I'm going to see him today and if he asks, I will tell him, but ultimately it is my decision and I will live with and accept any consequences it brings. Mentally it was too hard for me to start it before the surgery b/c i expected worse s/e's
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MTG, Thanks for sharing. Can you comment on how the "subtherapeutic level" of endoxifen (and/or other metabolites) was defined? I don't mean did you take a test for the level, clearly ytou did, rather, can you point me to documentation of what is considered subtherapeutic? I'm really interested in this topic and its such a quagmire that its hard to find definitive information on new concepts like this. Thanks!
Ansar, If I were a betting person I'd bet your onc will want you to start right away. I'll be so forward as to suggest you try not to anticipate anything specific about SEs...its just so variable and unpredictable. There's a good likelihood that you'll be just fine on tamox, and that any SEs you do get will be manageable and not significantly affect your summer. (Think positive until you've got alternative evidence...that's my motto and I'm sticking with it!) Let us know what onc says.
CS
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CS and Waldo--
Thanks! Good meeting with the oncologist. She thought waiting until after our July 4th road trip was just fine, but definitely wanted me to pop the pill right after that. I'm all for it. And Waldo, I do appreciate your position on SE expectations. I'm with ya on keeping positive--it really helped me through surgery (just didn't want to get hit with pain, nausea etc. on a six hour drive, and was glad it was okay to avoid that scenario...). I shall return after the 4th--again, appreciate everyone's advice here!
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I first got my prescription at my appointment in November when I still wasn't sure if I was doing a mx or a lump (I tried and failed at lump 2 times though!).
My onco had said specifically for me to check with my other docs before I started it since I wasn't done with surgery yet. My BS said to wait until I was done with mx. I started taking the big T the end of January. My PS said I didn't have to stop for exchange surgery.
I think the big timing is on you too....if there are any stray cells in there, you want to keep them from multiplying.
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cs7777 Can you comment on how the "subtherapeutic level" of endoxifen (and/or other metabolites) was defined? I don't mean did you take a test for the level, clearly ytou did, rather, can you point me to documentation of what is considered subtherapeutic?
CS - I wish I could but I was unable to get a copy of my test results; the doc doing the study merely read me the results over the phone while I took notes. We did not get along. She's even billing me, in spite of the fact that this was a "study". Already took it up with billing dept. and was told the charge was simply a mistake but 1 month later and it's still there. Since I have to continue to deal with this re: billing, I think I'll try again for a hard copy of those results. Will keep you posted.
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Hi MTG - Thanks for the explanation. That's crappy about the billing issue - these things seem straightforward when we go into them and then bam the bills come and its like, "HUH?!" I'd definitely ask for a copy of your results since you deserve to get that. Good luck getting it all straightened out. Aside from the controversy, your explanation does jibe with my thoughts that testing for endoxifen levels is primarily in study mode. What I'd like to understand is what is the definition of "subtherapeutic" and how that criteria was established and what are the data supporting the criteria. Or alternatively is it just now being established through studies like the one you're in. I'd be interested in who the doc doing the study is so I could look up her research papers. If you don't want to name her publicly could you PM me with it so I could look her up? Thanks again for the background, and good luck getting the billing etc straightened out.
CS
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Well I can say I actually SLEPT last night! All night long! I didn't take that midnight T-train that needed the fire stoked all night to get up those hills! Maybe the flashes are finally subsiding! YEA!
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Hi everyone!
I´ve been on Tamoxifen for four months now, and so far have had NO secondary effects whatsoever, save for a couple of hot flushes the first week. No weight gain, no sleeplessness, no mood swings, no loss of libido - nothing. But today I have been told I still have ovarian activity! No wonder I had no SE, it had no effect whatsoever! I am 42, premenopausal, so I don´t know what I´m in for now. Some kind of ovarian suppression - that´s for sure, either surgical or chemical. O well. Has this happened to any of you? Does anybody know what the best alternatives are?
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Ditsea, tamoxifen is not designed to suppress your ovarian function. It blocks the estrogen in your body from getting to, or stimulating, your breast cancer cells. It is prescribed for premenopausal women for that reason. It has likely been doing what it supposed to do, despite your lack of side effects. If your doctor wants to suppress your ovaries as well, that is another issue.
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Yes Ditasea, what revkat said. To add some detail, it's well-known that tamoxifen acts like an extra estrogen in your uterus and ovaries, so you shouldn't be concerned about that. In contrast, in the breast tissue, it binds to the estrogen receptors but does not cause cell growth like estrogen does AND it blocks your body's estrogen from binding to those receptors as well (so that estrogen can't signal for growth either). Interestingly, it also acts like estrogen in the bone, helping to build bone, which is generally a good thing (helps fight agst osteoporosis). A number of people on this board have few side effects, so you're not alone.
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bcincolo-meant to add - YAY for sleep!!! Maybe those nasty hot flashes will leave you alone now.
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Hello everyone - hope all is well and everyone is enjoying there summer.
bcincolo - hooray for sleep - how long have you been on tamox???. I started in May and I fal asleep okay but once I wake up with the flashes theres no going back to sleep - I'm exhausted. Hoping they will subside soon.
Kathy
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Hi All!
I'm still "flashing" but that's probably more so because I'm in chemo-induced menopause rather than the Tamoxifen.
I was experiencing some "wooziness", headache and neck soreness and was attributing that to T but turns out I have a sinus and ear infection.
I hate to sound like a hypochondriac but sometimes it helps to point out these afflictions to your doctors rather than just assuming it's a SE of Tamoxifen!
I'm feeling much better now!
I hope everyone else is making it through their week ok...
Marie
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Hi All, just checking in to say my surgical biopsy on my left breast in scheduled for Monday. Thank goodness the wait isn't long. I could even have results by next Friday.
Wishing everyone the best
Lottie
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Hey Lottie.....good luck with the biopsy Monday! We'll be thinking of you & hoping for the best! Waiting for news is the hardest!
Have any of you gals tried Melatonin to help you sleep? It works great for me, also the constant "dreaming'....& I read there is a link to Tamoxifen, where it "helps" the mucous in your cells to "work better" or something! I forget what it said exactly, but anyway it was "good" news! I can look up the article if anyone is interested. Jeannette
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Today is only day 8 of Tamoxifen for me... and I'm having a heck of a time trying to figure out whether or not what I'm experiencing is a "Tamoxifen side effect" or not. How in the world DO you tell the difference, when symptoms could be due to ANYTHING?? (e.g. I've been having brief-but-daily rib pain - is it a radiation side effect, or caused by the new mattress I've been sleeping on since approximately the same time radiation ended? Who really knows??)
Today it's my emotional state. I basically freaked out on my therapist. I was talking about a difficult relationship problem I've been having this week. Halfway through the appointment, I just couldn't bear to keep talking anymore, and burst out with a rant about how I'm sick of being emotional, sick of crying, sick of endlessly processing my emotions and just going 'round and 'round in circles and it's stupid and I just want to go back to bed so I don't have to deal with it all!!! And I don't know if I was upset due to the relationship problem I was talking about, or if it's actually the Tamoxifen throwing me out of whack like this. It felt like major PMS or depression, the desire to just shut my freaking brain off and go back to bed...
I wasn't like this a week ago before Tamoxifen started, so I'd like to say it's the Tamoxifen. But I also wasn't experiencing this particular relationship problem a week ago, either... so it feels impossible to ever be able to say, "Oh, it's the Tamoxifen," when there are other variables in my life continually changing as well that can never be controlled for. It's really frustrating.
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Raili and all, I hear you on the "what is it?" issue. This is the same problem I had with the breathing problems I had post-radiation--didn't know whether I was imagining things or if it was just allergies or what. After a certain point, everything feels like a stupid SE.
If I had to bet, I'd say that with only 8 hits of tamoxifen, your emotional state is probably the relationship problem and not the tamoxifen. Hopefully the relationship thing will improve and you will start feeling better.
As far as delays with tamoxifen goes, I met with oncologist yesterday. She concurs with the pulmonary specialist that I should wait until the radiation pneumonitis clears up before starting tamoxifen which means I won't start before August at earliest. She also says that despite the discovery that I am postmenopausal, she will still be putting me on the tamoxifen. Per her, the tamoxifen specifically goes to receptors in breast tissue that attract estrogen. And even in menopause there is still estrogen so its still worth while. By contrast, the aromatase inhibitors block the chemical that converts the pre-estrogen into estrogen. As a result, you have many more SEs on the aromatase inhibitors. The SEs include bone density loss which I would like greatly to avoid.
Before I see her next, she is sending me for a scan to determine my bone density. She said I was probably fine, only a small number of people had issues at my age and I just sighed and said well, then I'm screwed---only a small number of people have a biopsy show cancer, only a small number of people end up with radiation pneumonitis. . . obviously, I'm going to have dissolving bones. . . .
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She said I was probably fine, only a small number of people had issues at my age and I just sighed and said well, then I'm screwed---only a small number of people have a biopsy show cancer, only a small number of people end up with radiation pneumonitis. . . obviously, I'm going to have dissolving bones. . . .
Jenn, isn't this maddening?? The surgeon who did my biopsy said to me in the middle of the procedure, "I'm 99% sure this is benign." Then diagnosed me with CANCER a week later. Then, I found out the cancer was the mucinous type, which only accounts for less than 2% of all breast cancers...and then I found out that at age 30, I was the youngest woman with mucinous cancer that my surgeon (not the biopsy one - I switched) had ever seen.
So statistics are really meaningless to me now. When my oncologist tells me my risk of recurrence is x% with Tamoxifen and x% without it, it just sounds like BLAH BLAH BLAH to me, like the Peanuts characters that speak in gibberish. Sure, maybe my risk of painful, horrid side effects from Tamoxifen is only 1% or whatever (I'm making that up - I don't even remember the number), but so was my risk of having cancer and I got that. I've BEEN in that unlucky 1%...so I know what it's like.
My BS has several times called me an "out-of-the-box patient." I'm out-of-the-box in everything in my life. It's hard for me to make treatment decisions because I don't have good things to base my decisions on - certainly not STATISTICS... and I can't even think, 'hmm, I wonder what other women who were in similiar situations as me did and what worked for them,' because I'm a 31-year-old who had both a mucinous tumor and DCIS and that's just weird.
I was kinda arguing the statistics with my oncologist, when she was saying that without Tamoxifen, I'm x% likely to have a recurrence. I pointed out that that calculation doesn't take diet & lifestyle into account so it can't be really accurate anyway - e.g. if I don't take Tamoxifen, and also never exercise, live on fast food and beer, only sleep 3 hours every night, etc., my risk would be much higher (but immeasurably so) than if I didn't take Tamoxifen but also exercised regularly, ate mainly organic produce and whole foods, took anti-cancer vitamins and supplements, slept 8 or 9 hours a night, meditated regularly, etc. A conscious, healthy diet and lifestyle will reduce risk, but it's impossible to quantify this... in reply, my oncologist told me that a healthy diet & lifestyle will reduce my recurrence risk "by 5 to 6%." ?!? Says who? What does that mean? How could that possibly be measured and assigned a number?
Statistics are so meaningless to me...
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Raili
Where the h*11 are my lottery winnings?????? there's supposed to be a tiny chance of me winning the lottery, right? Okay so I'd like to trade my tiny chance of side effects for a tiny chance of winning the blinking lottery . . . .
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HAHA!! Totally!!
That reminds me of when my surgeon called me a few days after my reexcision surgery to tell me there was a surprise of 1.5 cm more DCIS than we thought there was and now I needed at least another reexcision and should maybe consider mastectomy. I told her I had been hoping she was calling to tell me that my pathology report showed that I had won a trip to the tropics! She said, yeah, next time she calls me, it will hopefully be to tell me I've won the lottery!
Maybe we should just buy lottery tickets regularly, if we're so good at beating the odds!!!!
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Raili and 3monstmama - thank you!
You two have put in words exactly how I've been feeling lately.
What's a Tamoxifen side effect and what's just normal aches and pains from painting the back deck, needing a new pillow, not sleeping very well because of all things I've got on right now, sinus and ear infection and cough from the cold I thought I was over, and so on and so on...
And I'm still bruising even though I stopped taking the aspirin with my Tamoxifen!
Maybe we just used to ignore this stuff but now everything goes under a microscope - like what if?
But I have to thank you because your posts actually made me laugh! I especially loved the "Where the h*ll are my lottery winnings?"
Here in Canada we've got a Lotto Max that keeps rolling over and the bonus payouts are getting more and more (max is $50 million but the number of $1 million bonuses are increasing).
I keep buying tickets thinking I've been in that small percentile before why not again!
It's nice to hear that you two still have your sense of humour and irony!
I had a good laugh this week when two older gentlemen were flirting with me and trying to pick me up. My new gray hair is actually attracting a lot of older men! I think they think that I am closer to their age (late 60s early 70s) but that I'm in great shape with no wrinkles.
I told my husband and he said "nice for you to know you could still get a date!".
Keep laughing girls!
Marie
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Raili, I went through the same thing, is it tamoxifen or is it perimenopause, or is it current things that are happening in my life? At one point, when I was 7 months into the tamox, I took myself off of it for 6 weeks because I just had to know if some of the side effects would get better. Hot flashes did improve, as well as some of my aches and the libido also improved. I'm also getting to the point again where I'm thinking of taking another break from it. This is how I get myself through this 5 years, I need to keep getting a taste of what life would be without it.
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I've had the same thoughts with every stomachache and so forth. It'll drive a person nuts. I finally decided that for the "little" stuff, e.g., things that aren't very disruptive and are relatively short-lived like stomachaches and headaches, I'm just not going to try to attribute them because it doesn't really matter - they go away in a reasonable period of time anyway. That attitude's harder to take with ongoing stuff like joint aches, I know.
Raili, regarding diet & exercise, there actually are some controlled studies of this so your doc's estimates may not be out of thin air. One particularly nice study published in 2007 showed that the combo of a decent amount of exercise + eating lots of fruits & veggies every day reduced risk of death by all causes by ~50% in a follow-up period over 9 yrs, compared to groups who only had the high fruits/veg, only exercised, or did neither (here's the paper: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2274898/pdf/nihms33760.pdf). Depending on your disease type, age, etc., and the associated stats for recurrance and survival, this relative reduction by half could approximate the 5-6% absolute risk reduction estimated by your doc. I know you said you don't like the stats, but I'm just saying....
More importantly, your belief that a healthy lifestyle would improve your stats is supported by at least some organized studies. I wish there were more of them, and that the numbers were separable from tamoxifen effects. Alas, not yet done, to my knowledge. C'est la vie.Take care - CS
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OK-I'm going to throw this possible SE out there-
I've been on Tamoxifen for 12 weeks now. I'm still having my periods. I've had 3 periods since I started Tamox. Each and every cycle, I have had diarrhea on the 3rd or 4th day. I normally have a cast iron stomach and can eat just about anything and I hardly ever get diarrhea. Side effect of Tamox, perhaps?
Mary
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Could be Mary...you never know. Hopefully it'll taper off with time.
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