Bottle o Tamoxifen
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waldo, a few others I see on EC are also here, including hannabearsmom and bcincolorado and tory, so there is a bit of crossover. i think a lot of people on EC did prophylactic BMX so didn't end up on tamox in the end.
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Raili, you dont have anything to worry about, if it makes you feel better I was diagnosed at age 32... started Tamox at 33 when finished with all the other crap..... I was scared to death, my dr said I will give you two weeks reprieve then you must start.... the SE I felt were hot flashes, yeast infections, joint pain and some messed up periods. Now almost three years later, I love my Tamox.. first of all I am still here... wooohoooo and also, the SE have lessened, I dont have periods anymore and the OB dr said very normal, stopped gaining weight, no more how flashes but I still get the lag pain... I am going to talk to my Onc next month at me check up. However I see that lots of women take tons of vitamins and my Onc strictest rule with Tamox is tell him everything before I take it bacause.. it lessens the effect of the mecication... therefore I dont take vitamins only a multi one a day....
You will be a year out before you know it... GL and HUGS!!!!!!!
Kate
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Thanks for all that info, CS! I guess it helps that I had decided about 2 years ago that I don't want to have children...so at least I don't have to worry about fertility issues with the Tamox. (I spent 15+ years working with babies and young children then got SO burnt out! I still love kids and always will, but I'm content to be an aunt and a friend to my friends' kids!!)
Waldo, thanks! I thought to bring the Tamox in the house this afternoon... but yeah, it had already been baking in the sun for a while due to being trapped in my car... the bottle itself was hot. I called the pharmacy to ask if it's still safe to take, since it was in my car all day, and the woman was like, "Oh, it's only 70 degrees out today... it will be fine! Our pharmacy is 77 degrees!" Well, regardless of the outdoor temperature, cars are like OVENS. Anyway, I didn't argue... I'll just hope the Tamoxifen's okay. It's in my apartment right now.
Kate, glad to hear your side effects lessened!
Strange, I'm taking a boatload of vitamins/supplements, and my onc hasn't even asked what it is that I'm taking! I'm taking vitamin D, turmeric, melatonin, digestive enzymes, green tea extract, juice plus, ground flax seeds, nettles infusion, and omega-3. I will have to ask my onc about this. If she tells me I can't take these while on Tamoxifen, then it's the Tamoxifen I'm not going to take... because I believe the vitamins and supplements are too important to me to give up. And my naturopath, who specializes in cancer, thinks all of these things are fine to take with Tamoxifen.... we'll see.
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Ralli, make sure your pharmacist knows everything you are taking and enters it into your computer profile. Pharmacies have computer programs that alert them of possible interactions anytime you add something new to the mix. I trust that database more than the memory of any doctor about potential interactions between medications and other supplements beyond the most common ones. That also helps catch interactions between things prescribed by different doctors at different times.
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PatMom that's a great idea. My onc and his NP always asks what I'm taking and supposedly would catch interactions, but having the pharmacy have it would be a great second line of defense.
Raili, the vit D, flax seeds, and omega-3 are ok with tamoxifen, with that claim based on my research into each which led me to conclude that I would take them. Of course you should always double check anything on the internet including this with your own resources so I don't expect you to take my word for it.
I would be surprised if any of those other things were a problem (but I've been surprised before). There has been controversyin the past about flaxseed because its lignins have phytoestrogen properties, but in this case the data I've seen shows that it does not interfere with tamox and that it even has some anti-BC properties on its own. The same can't be said for all phytoestrogens.Kate, thanks for sharing your history - gives hope to those of us who've been on tamox for less time that women just move through this no problem and get on with life.
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I agree. I think the tamox SE will taper off for most people or can be managed in other ways if they are severe. It sure beats getting BC again, ever!
I have a dear friend who has BC but isn't ready for mx (she knows she has to get one eventually) since she has her son in high school. She's a nurse and started tamox over year ago to keep it from growing so she can wait. For her the worst SE happens when she works night shifts and is with a patient and will actually break a sweat with a hot flash She gets embarrassed.
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[an aside please remember that we may say "have children" but what we mean is "get pregnant." There is a difference. I have 3 incredible children. I have never been pregnant nor had any desire to be pregnant. For those of us who have families created by adoption, the implication that one can't have a family without giving birth is hurtful. Moreover when so many women with breast cancer have to lose so much to stupidbreastcancer it is important to be able to recognize what is still there. Stupidbreastcancer may take away our ability to be pregnant but it doesn't impact our ability to parent or have children.]
So I will be joining this thread shortly. I had my appointment with my oncologist to start tamoxifen but was delayed by asthma issues. That seems to be resolving so now I have an appointment in 2 weeks to start. The plan is to start and see what happens. My onco says that most of her patients handle tamoxifen SE fine.
I am lucky that that I don't have to worry about some issues like the uterine cancer SE because I had a hysterectomy 5 years ago. I just keep reminding myself that my ultimate goal is to see my 3 kids achieve their dreams and to annoy my husband during my retirement
As for supplements, my onco wants me to be taking Vit D and a multi vitamin and calcium. And when I asked if there was stuff to avoid ---like foods or supplements--while on tamoxifen she said no. Raili, does that help or throw more mud in the water?
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Hey Raili
I've been taking tamox since late january. I hung out here a lot in the beginning when I had SEs, but now they're pretty much gone and I only pop in once in a while. I still haven't had any hot flashes. For the first 2-3 months I felt constantly crampy and had mood swings and some hip joint pain. The cramps have gone away and my joints are much better. I only feel achy if I overdo it hiking. I started on Effexor for depression and I don't have mood swings anymore.
My periods have become more irregular but shorter and lighter- not a bad thing IMO.
For a while having to take tamox made me anxious and frustrated. It was hard to take that first pill. I didn't want to take a pill every day for 5 years. After surgery and rads I just wanted to be DONE with treatment.
Now it's seriously like taking an aspirin.I hope you will be like the majority of women who take tamox and have no SEs.
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Jenn, thank you for this - please remember that we may say "have children" but what we mean is "get pregnant."
You're absolutely right, and I should have said "get pregnant" because that's what I meant! I didn't mean to imply that the only way to have a family is by giving birth (I think adoption is wonderful!), but I can understand that my words were hurtful even though I didn't mean them to be. I'm sorry. I will be more mindful of my words in the future!!
I'll check with my onc about supplements...someone just told me turmeric is a no-no with Tamox, and I'm taking that... oh dear.
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Took my second dose on TMX today. Nothing unusual to report but I guess it takes a while to build up in our system. I'm trying to take it in the morning and then forget about it.
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I know this has probably already been ask....but I am freaking out. I have blonde facial hair all along my job bones and it is enough to grab on to and pull. I am not sure if this is the Tamoxifen or what...
Anyone else have this happen? I am ready to cry!
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Raill---my mom took tamox many years ago and can't remember any significant SEs to speak of----she's now a survivor of ILC of over 23 years without a recurrence. I took tamox for 5 years with pretty minimal SEs--mainly hot flashes, some trouble sleeping and some achiness, all annoying, but certainly manageable. Everyone reacts to it differently, but the most common SE seems to be the hot flashes. A yearly transvaginal US to monitor the uterine lining and the ovaries is a good idea.
anne
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Scarlettohred - I think the facial hair may be associated with your hair coming back in after chemo. Many ladies have it - many shave it off and it doesn't grow back. For some, it does grow back. Not sure there is a way to predict what will happen. There has been discussion about it from time to time on the "Hair, hair, hair... another question" thread.
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That's what I do too Waldo. It's sort of like taking another one of my vitamins.0
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I do have something to report. My fear about weight gain- not a reality..I am losing weight!!! I think tMX is making me more thirsty so I am drinking a lot more water with lemon- no weight gain though- yay!!!
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Glad to hear about the weight loss. I;m wondering do the side effects tapper off or do they last the whole 5 years. I'm having terrible insomnia - but its every other night. Not sure if its becuase I'm so tired one nite and sleep better and then the next nite can't fall asleep. The joint pains are no fun either. I'm hoping some of you out there tell me it will get better after a few months. Kathy
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Irishmom...(love the name) me too... I would recomend taking the Tamox in the morning if you are having insomnia... I have been on it nearly three years now and I had insomnia and wierd dreams in the beginning but they are all gone now. (for the most part anyways). We all have our days.
The joint paind are still there, but only if I sit for a long period of time. Such as work, I sit at a desk and man I get stiff... I am going to talk to ONc about this next month but other than that not much else to report.
Hope you all have a fantastic weekend....
Kate
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INSOMNIA
Bugged me for several weeks, 5 months in - but now mostly A-OK (8 1/2 mths in and I take 30mg T with dinner or before I go to bed with a banana) and sleep at least 6 hours straight. (Try and minimize the potential of waking up - cut down on post supper liquids, evening caffeine....) I think whoever said it is correct: we all have our own SEs.... My joint problems are in my low back - sometimes so stiff and sore I can't bend over. A problem getting to the floor carrying my 18+ pound grandson! Might help if I got to the gym more often!!
Have a great day y'all
C
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scarlettored, take a deep breathe, it will be fine.
Though I have yet to start my tamoxifen, I would guess it might be a SE--are the hairs very very fine? I have those appear every so often in different annoying places on my face. I just pull them with twiscors [sp] and typically they don't come back for months and months. Remember, basically we are all mammals and like chimps, we have hair everywhere, its just that typcially we can't see it because its very fine and downy. I would not recommend shaving or exfoliating like the stuff one uses on legs. Shaving can make it come back more coarsely and exfoilant stuff is NOT made for faces. Ask my husband who tells me he once tried to accommodate a girlfriend [who claimed his face to be too scratchy] by using Nair [or something] on his face and ended up with burns. . . .
I am cheered by the idea of losing weight on tamoxifen. I am trying really hard right now to get better habits on drinking and eatting....its hard. . . .I eat good stuff but I am realizing I nibble more than I should, I eat WAY too fast and I am still not getting enough exercise. . . .
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I read something on another BCO thread that made me go do some research and I found something I hadn't heard discussed here that I thought people might be interested in. Specifically, that lavendar (lavendula) and tea tree oil (melaleuca) have been shown to have estrogenic properties, and stimulate human breast cancer cells to grow via the estrogenic pathways. It was discovered by an observant pediatrician who had 3 young boy patients growing breasts even though their normal hormone levels were normal. He dug further and finally found they were all using personal care products with lavendar & tea tree oil in them, and when he had them stop using them the problems resolved. He then went to NIH and got someone to do lab experiments to expose breast cells (they actually used ER+ breast cancer cells) to the substances and found they were stimulated to grow, and through the estrogenic pathway. This is a long way to saying that if you're interested in avoiding known estrogenic stimuli then these would be two to add to the list. Unfortunately they're in a lot of "natural" personal care products in lieu of all the other chems that are also supposed to be bad for us, so it takes vigilence to avoid them. Here's a short summary of the study: http://www.nih.gov/news/pr/jan2007/niehs-31.htm and here's the original published research paper: http://content.nejm.org/cgi/content/full/356/5/479
Best to everyone, hopefully all are doing well on the tamox-i-train today!
CS
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CS777: Wow! You learn something new every day. At least I do from you. Your knowledge astounds me. Thank you for sharing!
I hope the train stays in the station tonight! It is hot here (90s) and with no air conditioning it could be a long night with that coal being shoveled into the furnace to get the train up the hill.
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for anyone who had hot flashes or side effects, how long after starting tmx did it take?
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I had hot flashes prior to tamoxifen from the chemopause. Still no period and it is 4 months since my last chemo. Tamoxifen I am on month 3. I was exhausted during the day from the hot flashes all night and I was taking the tamoxifen in the am. I switched to taking it before bed and so far I think I feel a bit less fatigued. I think of it as my anticancer pill everytime I take it. Those first few pills were hard but now it is just a normal thing.
On the facial HAIR ! HELLO?! yes I have a fine layer of peach fuzz. I asked my dermatologist about it and he said it is from the blocking of the estrogen. Not much that can be done about it. So when the sun hits me I am fuzzy like a peach ~ SO not attractive.......
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Waldo- I've been on Tamoxifen for about a month now. I was having some hotflashes from chemopause before I started taking it, but they became frequent and regular by the day after my first dose. I work overnight, so I have tried varying the time of day I take it, but nothing seems to help. The flashes usually start around 11pm and come on about once an hour for the next 4 hours (yes, I actually timed them!). Then I get a little break till 5am, a few more flashes, then peace for most of the day-just a few scattered here and there. It was bad enough when I was out of work and they were keeping me up at night, but trying to work and talk to people while the heat is building up inside my wig, and the sweat is breaking out on my face (and dripping down between my foobs) is really the pits!
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On the facial hair, yes I too have a fine layer of peach fuzz on my cheeks that I SWEAR wasn't there before, although of course I can't say for sure. I'd seen it on the lists of possible SEs so it just struck me about a week ago when I noticed it in the mirror. Justmealicia you've now made me paranoid about being seen in the sun!!! LOL! Thanks for the info from your dermatologist - I hadn't thought of that explanation but it makes sense.
bcincolo - I think you're in exchange surgery today if I recall right so all my best thoughts are with you today for safe and successful surgery and a fabulous new foob coming out of it!
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Waldo, I have been on the Tamox for about almost three years and I think mine started almost instantly and lasted about a year.. keep in mind I was only 33 and not going through any menopause.. however, I think they put me into it..lol. have not had a period for about 6 months now, they just tappered off...now nothing... kinda strange how we are all different.. gl to everyone...
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CS777: Thanks so much for the well wishes. I did have exchange this morning. I'm in more pain that I thought I'd be but it went faster than I thought. I broke down and took a Vicodin a bit earlier as the local they had put wore off. I can already tell it will look so much better than the expander did.
I started on Tamox the end of Jan and started having SE shorty afterwards...the worst being hot flashes. Now I'm paranoid about my face though and will have to look when I can be in good light. Maybe it is something that can be lasered off?
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bcincolo - Congrats! Hey, its really important to stay in front of the pain, so even though this surgery is so much easier than the MX just give yourself permission to take the vicoden at regular intervals for a day or two and then taper off. Trying not to take it on your first day is too much!! It can cause constipation though so don't forget the stool softener (or equivalent).
I figure when we hit middle age and our closeup vision starts going bad, it's so that we'll keep liking our spouses and friends in the same age group because we can't see all the imperfections piling on like wrinkles sags, and they can't see ours! Hopefully that'll work with peach fuzz too!
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So true, CS7777, whenever I happen to put on my reading glasses and look in the mirror, I realize how badly my eyebrows need to be tweezed! Otherwise, I no longer see the strays. I haven't seen any peach fuzz though, and I've been on this tamox for over 18 months.
Lee, you may want to try some tincture of rhubarb. It's a bitter herbal remedy which my Onc recommended to me, they actually sell it as a purgative. I had to find it online. It did work for the hot flashes. I'm waiting till they get really bad again to restart using it.
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RoseG Sounds like you got a different set of SEs, so you're spared the peach fuzz. Don't look for it, it'll only drive you nuts!
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