Bottle o Tamoxifen
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Rozem, good that you are going to get that checked out. I have had about 4 patients in my 7 year NP career that have had post menopausal bleeding that turned out to be nothing. from 1+ years out. so yes, get it checked, it is concerning but most likely nothing. haven't had any others with bleeding so far 100% of those pts are ok.
my MO told me that tamoxifin could cause vaginal bleeding. haven't had any yet....but only 2 months of taking it.
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tpralph - thank you for your response ! that certainly calms my fears - it the first time other than a few periods that I have had any bleeding
hope you are right!
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@ Pamela23 - you make some great points. I did do chemo (Taxol and FAC). I did go into chemopause. I didn’t have any vaginal dryness or loss of libido with it. Chemo ended in April and I happily started Tamoxifen with an open mind in June? (Can’t remember if June or July). I was fine up until then.
I had hot flashes during chemo. I also had them on Tamoxifen all day, everyday—not just at night—and dripped with sweat. I was nauseous for about the first week and then my body seemed to get used to it. Then I started noticing the drying, sagging of my face, age spots on my face, jowels. The vaginal atrophy got worse and worse. About 8 months in at a gyno appointment, my doctor literally said out loud “Oh my, God!” when she saw the atrophy. Never a good sign. Ha!
The brain fog was horrible. Had the joint pain in hands and knees. That was tolerable. Getting a clot was my deal breaker. I made it about two to two and a half years. As soon as I quit, the brain fog started improving. Still have some. I have started producing some moisture but no libido and I don’t think the atrophy is reversible.
I am sure chemo contributed and I agree it probably does continue to contribute. I just don’t know how much.
I wasn’t offered Esterace (or anything like it) until I told my MO I would likely quit. You were smart to try it and to give your body a break to see what’s what. An angry bladder sounds horrible! Who wants that?! Haha. Now I need to google that. I’m sorry you had to go off of it but I am so glad it helped your body to start producing moisture.
My regrets are I wish I had thrown a tantrum sooner and got something to help the atrophy even while still on the Tamoxifen.
Wish I had quit sooner and maybe tried something else.
We need better options!
Congrats on your clear mammo. You have been through a lot. You may be able to take the Tamoxifen just fine. My friend had some pretty annoying symptoms at first but over time, her body adjusted and she is doing great on it.
Is it just me or is it the women who say, I have a really annoying vaginal discharge but otherwise feeling okay when they first start it who tend to do better?
Runor I switched back to Dove body wash because I noticed the burning from soap even without directly putting soap there. I would recommend you look into Esterace or something before you get to the grapes of wrath situation I let myself get to! God I hope your uterus doesn’t fall on the floor. Wouldn’t that be embarrassing? 😀 Good luck and keep us posted!
For the person who asked, there is info about the Mona Lisa procedure and some other procedure on the what no one tells you about cancer and your sex life thread.
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jpBCfree, there is information on this site about the Mona Lisa Lazer for the hoohoo. Using the search function you can type in Mona Lisa or check out some of the sex threads. Do not type in hoohoo. It will not take you anywhere useful.
Trvler, you flatter me but no, I am not a writer. Used to be a blogger but have deleted my blog. Now I write here!
Honeybadger, I think I have to do something cause this is getting ridiculous. Fortunately my new doctor, at our very first meeting asked if I had any vaginal issues, is everything okay in my sex life. Wow! A doctor who CARES and is PROACTIVE. I could have hugged him. In fact, he hugged me!
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I have to chime in here. I didn't do chemo, but had total hysteriectomy a month after completing rads and started tamoxifen in July of 2016. I have absolutely NO sex drive, have no feeling down there whatsoever, and have to use lube for any action at all. I don't even bother with my toy anymore either since I can no longer have a climax. I don't know if its the medicine combined with hysterectomy. Im scared to stop the medicine. I use replens but sporadically since its so messy and have to wear a pad since it oozes out all night. Thank God my husband has difficulty keeping it up because of HIS meds, so were a perfect fit for each other loll!!!!
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I have to chime in here. I didn't do chemo, but had total hysteriectomy a month after completing rads and started tamoxifen in July of 2016. I have absolutely NO sex drive, have no feeling down there whatsoever, and have to use lube for any action at all. I don't even bother with my toy anymore either since I can no longer have a climax. I don't know if its the medicine combined with hysterectomy. Im scared to stop the medicine. I use replens but sporadically since its so messy and have to wear a pad since it oozes out all night. Thank God my husband has difficulty keeping it up because of HIS meds, so were a perfect fit for each other loll!!!!
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rumor - ditto on the Johnny Depp
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Runor:
Your post made me LAUGH!!!! I agree about the writer comment. Perhaps a 2nd career?
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So....this morning I took my last Tamoxifen pill!!! I'm very excited and also very scared. All my doctors keep saying don't worry, that I'm low risk, that the BCI test showed no benefit from continued therapy, etc etc. But still, Tamoxifen has been my safety net. And I still can't forget that the BCI test showed me as high risk for recurrence, albeit at the very low end at 7.5%. I'm consoling myself with the conviction that this extra weight is going to literally FALL off my over the next couple of weeks! LOL! So I'll keep everyone updated on if all these aches and pains and other SEs really do subside once you quit the meds. Fingers crossed!
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Curious if any of you who are having trouble climaxing are taking anti depressants? Those will kill your ability to climax.
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lala1, I think about being in your situation a lot. When the time comes for me to go off tamox, how will I feel? Will I feel like I'm a walking target for some terrorist cancer cell to go berserk in my body? With that in mind I am wondering how my onc would react if I said I wanted to continue after 5 years, but at a much lower, every other day dose.
Now my onc might poopoo the idea and tell me that intermittent, low dose is not effective. But the truth is he does not know if it will be ineffective. There is no research to support effectiveness and no research to disprove it either. There is a teeny amount of research that says low dose can keep the levels of tamox in the body high enough to be effective. But it will take the second coming of Christ to change protocol, so I'm not holding my breath for that.
If you tolerated tamoxifen well, if you feel worried being totally unmedicated, tell your doc you want to continue on but on a dosage level and time schedule that is OF YOUR OWN CHOOSING. Then get some 20mg tabs, cut them in half, and take on half every other day. Or even go lower with the dosage. Split 10mg tabs and take one every other day. Or take a 20mg tab every 4 days. I mean ... do what you want. You've put in your 5 years, if you feel insecure, tailor make your own scaled down usage. You do not have to go cold turkey on this unless tamoxifen is medically bad for you. (well it is bad for all of us but I mean super serious bad)
When I hear of women feeling so miserable on this drug that they are driven to quit , choosing recurrence because that's how horrible they feel, while mule-headed doctors do not help ease the situation by suggesting a lower dose, I go berserk. Stupid, stubborn ,entrenched medical protocol puts women at risk by telling them they MUST take 20mg every damn day come hell or high water. A doctor would serve his patient far better if he said, "look, I realize this drug is making you feel like shit, so let's try 10 mg a day for 6 months and see if that's more tolerable to you." But time and again a book educated, but creatively stupid doctor, DOES NOT say that !
Yes, 20 mg every day is standard protocol. But the more I look into it the more it seems that was arrived at from a not overly rigorous method. It was the most tolerated dosage, dialing back from even higher doses. It was the least toxic. But nowhere, NOFRICKINWHERE have I seen the data that says "we tested this at all dosage levels starting at 1 mg and working up to find the LOWEST EFFECTIVE DOSE." That research does not exist. It never happened (it seems). So. One has to seriously question the method used to arrive at a 20mg dose. It is, to me, complete bullshit. Seriously, ask your doctor WHY the 20mg and if he's honest he'll just shrug and say, standard protocol, that's what the book says. I remain unconvinced that dosage has been studied enough (or really at all!) with tamoxifen. Effectiveness cannot be disputed, but dosage is a whole other ball game.
Lala1, your concerns are normal but you can fine tune this if you want to continue on tamoxifen. In my opinion.
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Yes, I take effexor to help with the hot flashes and mood swings. I guess that could be a cause too. Who knows
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So I wonder about dosage as well. It seems most many medications also take BMI and weight into the equation for dosage. But I’m on the same 20 mg dose as everyone else. Does that matter? Just curious. I know they sure watch carefully for pain meds. I wonder if weight and/or metabolism makes any difference.
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TaRenee:
I'm literally 95lbs soaking wet -- and they've never said: wow, you're tiny, so maybe a smaller dose.
Makes nada sense to me.
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East Coast... right there with ya. I don’t get it.
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And you'd think with larger dose for my body size (if we're thinking that way) that I'd get HUGE hot flashes.
Nope. What you describe I have definitely never had! (Hope this damn thing is working!!!)
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Eastcoast, I wouldn’t wish that s#*t on anyone. I was so close to tears. I’m assuming it’s working lol. If not, I have a whole other set of problems
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I'm right there with you Eastcoast. Im 5' 5" and weight 105. I often wonder why some meds are not adjusted for weight. Maybe people's side effects could be better managed very that way. Runor, you have some very good points on the standard dosing amount as well as eventualtapering.
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So I followed a bunch of links from the article swg posted, and I found this one especially applicable-“In the trials of about 5 years of adjuvant tamoxifen the absolute improvements in 10-year survival were 10.9% (SD 2.5) for node-positive (61.4% vs 50.5% survival, 2p<0.00001) and 5.6% (SD 1.3) for node-negative (78.9% vs 73.3% survival, 2p<0.00001). These benefits appeared to be largely irrespective of age, menopausal status, daily tamoxifen dose (which was generally 20 mg), and of whether chemotherapy had been given to both groups.”
Note that is says the benefits were significant irrespective of dose!!! It’s an NIH article, I’ll try to get the link to post, but not sure if I can from my phone
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Sorry, I just realized that she posted on a different Tamoxifen thread, but here is the link I quoted-
https://www.ncbi.nlm.nih.gov/m/pubmed/9605801/?i=5&from=/15894097/related
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I have never found any information that says tamoxifen dosage is related to bodyweight. I don't believe it is a drug that the body uses in that way (whatever way that is, haven't a clue).
I know wormers are weight dependent sometimes, but we're not dealing with tapeworms here.
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runor---thanks for the information. I've definitely thought about continuing since I did ok on it. My MO and I came to an agreement since he thinks it's totally a placebo for me and I think "what if...". He asked that I stop it for one month and see how I feel, both physically and mentally. If I make it through a month without freaking out, go one more month. And so on, and so on. He said I have to weigh the 1% benefit (that's the most he thinks I'll get) with the much bigger risk of cataracts and blood clots. I love this guy and he totally gets me and my "worrier" attitude. That's why he wants me to treat this almost like AA. He said "you worried going on and it ended up being doable and you'll worry going off. Let's see if that's doable too." And he had me stop with a 30 day supply still in my bottle so if I totally panic, I can restart it. And he's even already called in my refill for another year just in case. (For someone who's only seen me about 20 times, he sure does get me! Maybe better than my DH!) And he's reminded me that daily exercise-which I do-reduces my risk of recurrence by a third, as does me losing 10 pounds which I hope to find easier to do now that I'm off Tamoxifen. So basically with his math, if I have a 7.5% recurrence rate, I can knock that down to about 2.5% with weight loss and exercise. Now if I'd only learn to like fruits and vegetables!
I have an appointment with my BS next month and I'm going to run all this by him and just confirm in my head that I'm better off without it. But I know both of them would let me continue and at any dose I want if I asked. Today is day one. One day at a time....
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Fingers crossed!
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Leilas,
I'm 51, still get my periods,,albeit not on time anymore, and have been on Tamox since Sept. I have drying issues in my eyes, nose, sinuses and mouth. If it has done it to the lady part, I don't notice it, it must be slight. I still get aroused, still have sex, still climax. I got to keep something out of this deal at least. Or at least for now.
I worried that would be one of the side effects and was expecting, but happily not. Fingers crossed for you too.
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Hello All,
I have been on Tamoxifen for 2 and 1/2 months. I began having SE’s immediately. The first tablet was nausea, but was gone by the second tablet. Within the first week my lower back was uncomfortable, but not agony. I told the oncologist and he ordered an x-ray which came back clear. Back ache persisted. He then ordered a whole body bone scan which was also clear. I pray that you all can share with me your experiences. I do experience the other pain and joint aches as well, but they seem less persistent and not as annoying. Also, today I have been referred by my PCP to a rheumatologist. Thank you all for any advice and support that you all willshare.
I also just completed all active treatment 1/29/18.
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I'm a bit puzzled by the number of posters who assume that tamoxifen starves the whole body of oestrogen. It is my understanding that your body continues to produce it, the difference is that your cells don't process it in the same way. Breast cells have their oestrogen receptors blocked so they can't access it, but other areas of the body get a higher dose. That's why there's an increased risk of endometrial cancer in postmenopausal women, their uterus is getting too much, which thickens the lining.
I was 55 and well past the menopause when I started taking it. And I already had the usual post menopause issues with vaginal dryness and discomfort. But since then, that problem has gone away, I don't need to use a lubricant any more, and my sex life is better than ever.
I think the real issues with oestrogen starvation happen on aromatase inhibitors, which really do stop it in its tracks, I feel lucky not to have to go there.
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Dizzybee--I also don't get it because Tamoxifen actually increased vaginal moisture for me. My doctor warned me that it causes discharge and to not worry. Now that I've recently stopped, I'll be curious if I suddenly dry up since I had a hysterectomy 3 years ago. Oddly enough, I've only been off Tamoxifen for 2 days and my hot flashes have gotten worse. I really had hoped they'd get better. Stupid med.....
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Ditto Lala1 and DizzyBee, I think sometimes people take an idea and run with it. Maybe some experience the negative SEs and during the discussions herepeople get confused or assume and then an idea is born.
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Ditto Lala1 and DizzyBee, I think sometimes people take an idea and run with it. Maybe some experience the negative SEs and during the discussions herepeople get confused or assume and then an idea is born.
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Dizzy: I didn't know the difference either until my PCP explained it to me at my most recent visit.
I do think many of the se's attributed to Tamoxifen are other pre-existing conditions.
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