Bottle o Tamoxifen
Comments
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kay1963: "How are SE's on it for you, cycle path? Was there a reason you're doing that instead of an AI? I thought an AI was preferable because it had less serious side effects."
So far I think the SEs are tolerable but I've been on less than 2 weeks. I'm not on an AI because they're too hard on the bones. I haven't looked into the SEs of AIs but I see plenty of women here complaining about SEs of various AIs, so I dunno about that.
bdavis: "I assume that the Tamox is better for PREmenapausal women and the AI is better for POSTmenapausal or they wouldn't in general make that proposal, as a plan."
Well, here's what Wikipedia says: "In contrast to premenopausal women, in whom most of the estrogen is produced in the ovaries, in postmenopausal women estrogen is mainly produced via the enzyme aromatase in peripheral tissues of the body, because some breast cancers respond to estrogen, lowering estrogen production at the site of the cancer (i.e. the adipose tissue of the breast) with aromatase inhibitors has been proven to be an effective treatment for hormone-sensitive breast cancer in postmenopausal women."
So basically it's felt that AIs are not an option for pre-menopausal women, which is why they're generally prescribed Tamoxifen instead. Post-meno women can take either, though bone loss is an issue for many women which is why some (like me) don't take AIs.
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I didn't mean they didn't have se's, but tamoxifen can cause uterine cancer and blood clots. I think that is why they usually opt for AI's if possible. But I have been told tamoxifen doesn't cause bone loss like AI's. I guess we're all between a rock and a hard place.
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I agree Kay, a rock and a hard place...not really scary precipice or cliff hanger kind of stuff tho when you think about having other kinds of cancers and there is not this OPTION of taking T or AI as precautionary measure...After completing my reconstruction etc I was surprised that my onc did not want me to have regular MRI's to monitor.Basically she told me there is no point because current studies show that MRI's only bring forward diagnosis of recurrence by 6 months, but do not prolong life by 6 months...and that MRI's show up everything as most of us know, and can cause a lot of unnecessary biopsies and stress and false positives...and that if i had a recurrence i am going to feel it soon enough..not that she is expecting it for me.0
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Wondering what brands of vitamin D3 people are taking, does anybody's oncologist recommend a particular one? My levels are low, seems to be a bit of a challenge getting them up
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Ok I know we are all big girls here so Im probably gonna freak afew out but here goes. I have been with my husband for 23 years, with that being said here goes this little ditty. You see we really enjoy oral sex alot. Well since I dont have my girls anymore it seems like some of the big OOO,s that I had from nipple stimulation are gone. Has anyone found this to be an issue as well? I know that it shouldnt be an issue but Im sorry it is. I am trying to figure this out cause I miss them. I dont know if its from the missing nips or the Tammo. Please help me if you can. I wanna get the freak back like it was. AmI just kidding myself and have to find a different way of doing things.
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Kay: "tamoxifen can cause uterine cancer and blood clots."
I've had a hysterectomy, so uterine cancer is not an issue for me. I talked to my doc about blood clots and while that's a definite risk, it's a fairly rare SE. I don't have the statistic at my fingers, sorry. For me the bone issues are paramount.
Louis: I've never been told to take any particular brand of D3. How long have you been taking it? I got mine up from "very low" to "just fine" in about 6 weeks.
Paula: I was going to suggest that you post your query in a section devoted to sexual issues, because I was pretty sure such a section existed! But it doesn't! There really should be a section for this, IMO.
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Kay... My MO thinks blood clots are definitely a concern and he had me delay starting T to get past surgeries.. AND he has me take baby asprin 3x per week. I have heard this from many women so I would look into it.
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Paula, I love your question and love you for asking it.
I have one girl left and tho we enjoy her, when we do it often just makes me sad, missing her sister. Being assymetrical is simply still weird for me, maybe I'll get used to it. Not yet. Hubby is great. Problem is mine. I think if I had a better body image it would be better. Missing that breast gets in my way. I am still self conscious, hung up on the difference.
That being said my urge varies greatly. Sometimes I really want it and it's quite great. Other times I am just really not into it. I don't think it's the tami in my case. I think it's partly age, too.
don't despair, Paula. We've been through a lot. I think it takes a while to get untraumatized and get our mojos back, IMHO.
All the best, shari0 -
Paula, I have one original nipple and breast. The MO told me to do a uni mx rather than bimx to keep the sensation and sensuality. I am glad I listened to her because I was really leaning to a bimx for peace of mind even though all the docs just recommended uni mx. I don't think I am ever going to have any feeling in the reconstructed breast. I was warned I wouldn't.
Thanks for the baby aspirin tip Betsy. I will talk to my NP about it on the 12th. Cycle path, that makes sense. I wonder if most women with hysterectomies take tamoxifen instead of an AI. I am definitely concerned about bone loss as well. I am more afraid of the cancer than the blood clots from tamoxifen. No one in my family ever had a blood clot. But then no one had BC either. A rock and a hard place for sure.0 -
Well, ladies, I started Tamox less than two weeks ago and while I've had some SEs I thought they were mostly pretty tolerable. That was up until last night.
I don't think the hot flashes have become worse, per se, but they're very different. What I've got now is alternating freezing and sweating. It's a little like having a fever -- most of the time I can't get warm enough but then that ends suddenly and I break out in a drenching sweat. As soon as that's over I'm colder than ever because now I'm wet too!
Horrible. I was awake almost all night. Every time DH moved he'd stir up a little bit of air and get me chilled. Then just about when I got comfortable and drowsy again it would be sweats and then chills. I finally just got up and watched TV until it was light.
I don't really have a fever, btw, and it's not exactly like fever symptoms, just slightly reminiscent of that.
I guess I'll try some of the Black Cohosh. Aaack! I just moved in my chair onto a cold part and the chills started up!
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cycle-path...That is exactly how my nights have been. It is a bummer. My hot flashes are every two or three hours. I take my tamoxifen at bedtime. I wonder if morning would be better?
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I had the same thing go on when I first started the Tammo. I would be so hot, then so cold the next minute. It took afew months and that straightened out. The freezing cold went away, but the hot flashes stayed, ugh. I tried switching when I took the Tammo, but found that didnt help me at all. Hang in there it does get better.
On the baby asprin, my MO has me take it everyday. He says that since one of the SE is clots that its added protection from it. It is safe with the Tammo so its ok.
I was hoping the SE sexually I could blame on the Tammo, but it doesnt sound like it. Well here goes trying new things!
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Bdavis you miss read my post. My Friend was post menopausal from the get go and her MO put her on an AI. She stayed on it for two years with very bad joint pain and then osteopenia so she decided to switch to Tamoxifen for the next three years. When her 5 years was up her MO wanted her to go back and try the AI again and she said no her QOL was much more important.
I am pre menopausal and my MO wants me on Tamoxifen for 5 years and if I go into menopause then an AI for 5 years. He wants 10 years hormonal treatment because I was in a gray area for chemo and did not do it. He also has me on a baby asprin daily as my father died at 49 of a heart attache and my mother also has coronary issues.
I took 2000 IU's of D3 for about 6 months and not much change in my vitamin D level so for the last three months I have been taking 4000 IU's daily. Will get my blood checked in a couple of weeks and see if there is any change.
Paula wish I could give you some advice. I want you to get your freak back too
cycle-path I have also had the alternating heat/cold at night. But I finally discoverd that sugar is what activates my hot flashes. As long as I stay away from it I am fine. The other night had some hot cocoa (not thinking) and I had hot flashes that night. Next morning could not figure it out and then my light bulb went on about the hot cocoa. I love sweets so it is hard for me to not eat them. I just have to completely stay away from them.
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Ceeztheday, I started dividing the dose, half am and half pm because of headache. All that seems to do is give me a headache twice instead of once. I think I'll go back to the full dose in the morning.
Paula, glad to hear the hot and cold went away for you! Have you tried black cohosh? I really don't like herbals and have had some bad reactions but I figure it's worth a try.
Sherry, how long have you been on Tamox? I'm wondering because Paula says that hot cold stuff went away for her eventually.
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hah! i get the hot cold thing too...oddly only get cold in my upper body tho
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cyce path , i was taking it, and then stopped everything prior to surgery and am just getting back to supps again which i have been off all thru chemo surgery etc..apart from maybe a month or so.. i am also taking a great New Chapter supp called Bone strength..which is a cal/mag d3 that is a huge cut above all others, imho..i love New Chapter, great group and company.. am going to take their Zylflamend again( best supp for joint pain) and curcumin and their multi..there is another supp i used to take that i want to get back on to as well but am going to have to rack brain for that one..
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cycle now my onc says black cohosh is a big no go because of the natural estregen in it. This is the point to the Tammo is to block that so I dont do it. I know it is an herbal that is up in the air for some. I just stick with what my onc has told me. If I do question her she is good about telling me her thoughts on stuff. It took me a few months to get thru the cold hot wave. It was nice since it was a record breaking heat wave summer. The winter would sure be a bummer for sure. I do know that the Effexor really worked in the beggining but I dont know so much anymore. Im not quit for sure if my body has built up to it or what.
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I am soooo far behind....can't possibly catch up as I am in Newfoundland doing a workshop but Linda...wanted to suggest 'adrenal support' if you are super fatigued....it has helped me more than I can say to get my adrenal glands back in working order since BC. Have alsobeen taking a valerian-mix my naturopath has given me and it has really helped me sleep. might help you too.
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Paula, what are you saying woman! it absolutely should be an issue! but what i have learnt is that it is more of an issue to some of us than others. My partner( with huge history! ) tells me that most women dont find nipple/breast stimulation to be so key to orgasm as i do and it is not such an important erogenous zone..when i was diagnosed, it was like oh no! not my breasts! especialy after i had lived like a nun for 10 years and had only recently just started having a great sex life! fyi, I had a uni and the good news is that while i dont have sensation in my reconstructed nipple( nipple sparing recon), a little little bit is coming back from lots of love and attention in last week since losing nipple guard, either that or i am growing accustomed and just watching and aware of how he loves my breasts is erotic in itself..whatever, i actually think that having lots of good sex with all that blood flow and stimulation has helped me heal faster through all my recon...so keep at it! , i say! either something will come back a bit, or you will grow into a new way of feeling aroused..sorry if that was TMI anybody, i was actually being very restrained!
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Paula honey I wish I had a answer for you, but not in the same boat....kiss kiss
Cyclepath I don't have hot flashes but I am getting warm flushes lately (menopausal maybe) however, I am always cold like BONE cold. Last night I went to bed in my warm flannel pj's, a thick robe, comforter and afghan and was so cold I could not get the chill out of me.....I have been always a little on the cold side, but I feel since being on the big T it its worse....
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I take my "T" in the morning and have just flushes not flashes...
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Paula: my ObGyn suggested black cohosh for Tamox hot flashes. She's actually really my ex-ObGyn because she's gone too far down the naturopath road for me. However, she didn't seem to thing the phytoestrogen thing would be a problem. It sounds like it's like soy -- some docs think it's great, others think it's poison. Sheesh. I tried Effexor when I first went off HRT and I didn't think it helped much with the hot flashes, but maybe I'll try it again if the black cohosh doesn't work. I did get some today.
louis, interesting and not TMI at least for me...
June and bdavis, my sense is that "flash" is really sort of misnomer and that the correct word is "flush" but everyone says flash anyway.
Thanks for everyone's help and suggestions. I wasn't going to take the Tamox again today but you ladies gave me the courage to give it one more day. Can't promise how I'll feel about it tomorrow morning though.
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Cycle path I have been on tamox 11 months. The hot/cold has subsided as well as most of my bad SE's. I had a really rough start with it, but now is OK. It took a couple of months to starty getting better. The few SE's I still have I can live with.
My Dr called me this afternoon and is sending me for an MRI for my neck. It has gotten worse and I just can't do pain pills during the day and try to work. Now I am getting scared of what they might find. Well at least whatever they do find we can deal with.0 -
so i am seriously looking at tamoxifen and if the SE warrant the risks and if i can do it another way..for me, having had a son with a mutated tumor suppressor gene affecting CNS ( which means one allele is down and it only takes a second hit for a new tumor) and navigating 10 years of medical stuff, keeping him stable with supplements with no tumor growing or developing, and then ultimately being completely let down by the best docs/institutions in this country ..i am beginning very slowly to apply the same diligence to my own health. I dont mess with things, i dont take supps while on chemo, surgery, but this new period post treatment is something that needs some thought..
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Sherry, sorry to hear of your neck problems. I was having problems with one hip and knee and was absolutely NOT going to try Tamox until I got those resolved. Finally got those cleared up. Those constant nagging little pains are depressing.
Louis, you might find you get no SEs from Tamox. Apparently a lot of women have no SEs or very managable ones, and you could be one of those!
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Sherry - So sorry you have not been able to get relief from the neck pain. I know it is no fun trying to take pain meds during the day and try to work. Hope you get some answers after the MRI. (((HUGS)))
Tomorrow will be one year since I started taking Tamox. I have read concerns about hot flashes. I was on HRT and had terrible hot flashes when I was taken off of them. Had lots of concerns about more hot flashes once I started the Tamox. I have to tell you ladies, I must be one of the lucky ones - I have had very few flashes and I would not really call them that - more like warm flushes. I do have the joint pains but then again this med could just be making my arthritis flair up. Some do get very little or no SEs - mine are very doable. Four more years - but who is counting - LOL!
Hey June, Tink, Paula and all the other Tammi ladies - I sure miss every one of you but work has been so busy right now. I will check in when I can. You can rest assured I will be there if there is a Friday night pillow fight.
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Hi Jo! I seem to be about the same as you with SE's. Mild if any hot flashes. I did get some bad ones with bad night sweats when I was doing AC chemo, so I know what they are like. I do have significant joint pain, but think it is from the herceptin I am still doing as well as tamoxifen. Almost done two months. Hope you enjoy your work at least.
Sherry, hope you will get relief soon. I haven't experienced that, but I still sympathize. Hugs.
June, I don't know if you've posted an update or not, but hope your mom is doing well.0 -
Well, one year ago today I took my first little white pill. One down and 4 years to go. Don't know if this is cause to celebrate or what. But then who needs an excuse to party?? LOL!
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I almost a week in. Yesterday and today I woke up with pain in my feet and my legs are sore. Wondering if this is a SE of the Tamox. Also last night woke up a couple of times with hot flashes, first time for those. I have been having night sweats for a while, since I had my surgery, wondering if it is the percocet causing the sweats. Also had a few light headaches which I think is probably the Tamox.
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Sherri, I sure hope they figure out what is going on with your neck and get you some RELIEF!!!
I have had issues with just about every part of my body, so today I am getting a massage - haven't had one in several months as I was in physical therapy and just didn't have time - and the massage therapist also has lymphedema training, so she is great! I should feel like a new woman tonight.
Hugs to all of you, hoping 2012 is getting off to a better start for all.
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