Bottle o Tamoxifen
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Thanks Leslie2016, Good to know when to start expecting SE's
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Ragdoll - I totally missed your question. I know nothing about DIEP flap reconstruction, but I can confirm what Leslie told you. I was getting hot flashes throughout chemo as well. It through me into menopause. It all started for me prior to taking Tamoxifen as well. Now, I get them all the time.
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Thanks Lula73, Lets hope that I am not the exception to the rule when it comes to the more rare SE's on Tamoxifen. I assume you have had your follow up surgery e.g. areola and nipple reconstruction completed already? If so any advice regarding nipple reconstruction or 3D tattooing? How did the scars on your breasts and abdomen heal? Mine is obviously still very fresh as I had my surgery 13 days ago and feel quite overwhelmed by my new look. The doc is very happy with my healing and is planning stage 2 of reconstruction within the next 3-6 months.
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Thanks Tampabaybucsgirl, seems like I'm definitely in for hot flushes...I have had some night hot flushes on and off for the last 3 years (I'm 46 and has been peri-menopausal for a while) so I assume it will now be my constant companion...any advice regarding the handling of the hot flushes?
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Unfortunately, I don't have many solutions. I have a fan in my work cubicle. That helps a lot! I can turn it on whenever I need it. They sell cooling pads that you can lay on your pillow, but they only last for about an hour. The pads absorb your heat and eventually get warmer. Even then, you start to get cold at night. It's a constant battle between hot and cold. I'm constantly either covering myself with the bedspread, or throwing it off. Thank goodness my husband isn't bothered by it.
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ragdoll- I was able to have nipple sparing mx so I have my original nipples (which I liked very much). It was a big discussion between me and my husband on what to do if they couldn't spare the nipple and we ended up having 3D tattoos by Vinnie Meyers as our plan B. His work is absolutely amazing. If I wasn't going to have the original nipples I just preferred to not have one constructed as it would make going braless or wearing a bra without any padding a lot less stressful since there wouldn't be a nipple poking out.One of the women in my DIEP Facebook group just had Vinnie do her tats and she posted the pic yesterday or the day before-they were beautiful, well placed, very realistic-I'd have sworn they were the real deal.
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HI I have a question for anyone who is taking Tamoxifen and also taking thyroid meds. Last time I was on Tamoxifen my Endocranologist had to lower my thyroid meds. I informed him I had started Tamoxifen again two months ago and this month he is going to run an TSH and T4. Has anyone else have to change dosages of thyroid meds while on Tamoxifen and do you know why? I have no thyroid so it can not be affecting that.
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I've been taking Tamoxifen for four years and until recently I didn't have any noticeable side effects. However in the last couple of weeks my skin has been very dry and itchy. I have cracked skin on my hands and fingers as well as a red bumpy rash on my the top of my right breast. Could these skin problems be associated with Tamoxifin? At first I didn't think the year were linked since I've been taking the medication for so long with no problems but then I read that Tamoxifin can cause dry itchy skin. I have an appointment with my oncologist in two weeks so I'll definitely be asking him but i was hoping to get some feedback on here
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From what I understand, there is no time frame for se's if they happen. Some get it right off the bat, some a few months in, some years in.
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Triciacon- I found that Cetaphil lotion worked really well for the dry itchy and cracked skin issue. Is the red bumpy rash itchy? If not, it may be tamoxifen induced acne. And it may be different than any acne you've experienced before. Best thing I've found for that is neutrogena rapid clear oil eliminating foaming cleanser twice a day with or without a followup application of Clinique acne serum. Good luck
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I started taking Tamoxifen after telling my doctor that being so dry it was painful to have intercourse. I switched from Arimidex. Mine is the 20 mg tablets. I have been taking it for about 2 months. I have always had issues with my colon and it doesn't take much for me to have loose bowels; however, after about 3 weeks it really got bad. I have just had my colonosopy and it was okay. I call my oncologist office and they told me to stop it for a week. I was also doing research on what else may cause it. I was using the flavored drops in water and it said it could cause it. I stopped that. After a week I was better. I then went back on it and now it has started again. I use a mail order company for my prescriptions so I don't know if I could request a certain brand. I also take Melatonin at night to help me sleep. I checked and it is okay to take with Tamoxifen but to take a good grade or it can cause problems with loose bowels. Anybody else with this problem and any suggestions?
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Thanks Luna73! I've never heard about tamoxifen induced acne. Interesting! I wonder why it appears on my breast? I know my skin is a lot thinner due to the radiation. It's just crazy that still after 4 years when any health problems occur I immediately go into panic mode fearing that my cancer has metastasized.
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Ragdoll: I had a DIEP. I am not sure what your questions are regarding DIEP and Tamoxifen. I have been on Tamoxifen since Jan 2016. My SE's are hot flashes, which aren't terrible, being cold, which usually leads to a hot flash and horrible upper arm cramps, which I think it also made worse by limited mobility from a mx. They cut 2 nodes out on that side as well. I take magnesium. I am not technically in menopause according to my blood work but my last period was just before chemo. Although I am 54, I don't think I was going into menopause at dx because my periods were still regular. My sister went through it at 56.
I have been off Tamoxifen 5 times, 4 for surgery and the MO had me go off to see if the arm cramps were being caused by it. She thought they weren't. I knew they were and they did stop. But then I had to start taking it again anyway. So they are back. I have always had dry skin so I don't see that being all that much worse.
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My Oncologist told me that dry skin and a rash is a possible side effects of Tamoxifen.
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Does anyone here find that their gynecologist is more helpful answering questions and providing possible solutions with some of the side effects? Will be starting Tamoxifen when I'm done with radiation and between the chemopause and Tamoxifen my MO just shrugs off questions I have about the effects on my nether region or if I should even see my gyno. It's almost time for my yearly appt but hesitant to add another Dr to the mix. Also seeing the Clinical Trial rep for the Pallas(sp) trial in a few weeks.
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TWills--I called to my GYN at the end of rads to get a pap smear and a sonohystogram (measured the uterine lining for a baseline). I know tamoxifen can cause uterine issues like thickening of the lining and polyps. Well, she found a polyp and even asked me how my sex life was because she could feel the atrophy of the vaginal walls. At the time, intercourse was uncomfortable and even slightly painful. I had the polyp removed and was prescribed Estrace--an estrogen cream approved by the American Congress of Obstetricians and Gynecologists for estrogen positive breast cancer patients. Here's their study/statement. It has REALLY improved the situation. Not so much the libido, but the dryness and discomfort. My MO approved it, of course and it's the minimum dosage-a pea sized amount twice/week after the initial 2 weeks of introduction. But it's REALLY been a life saver. I haven;t started the tamoxifen yet. I'm giving myself a few months to heal after the lumpectomy, chemo, radiation and polypectomy. I saw the MO the other day and she said it wasn;t a problem. I know my estradiol was 16 in May, usually it's in the high 200-low300 depending on the time of month. Haven't had a period since Sept. Plan to start in next few weeks.Hope this helps! My MO always skims over those personal questions which is why I took charge of the situation.
https://www.acog.org/Resources-And-Publications/Co...
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Pamela23, Thank you! Thats the info I was looking for.
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I have been on tamoxifen for 18 months. I just had a polyp removed from my uterus which the doctor contributes to the tamoxifen. I also have been more tired than usual. Side effect? I am 52, exercise, normal weight and eat very well. I am tired of being tired but I guess better than getting a recurrence. I have night sweats but had those before tamoxifen. I don't know what to blame on the drug or menopause? I wish I didn't have to take it but MO says it will decrease my chance of recurrence by 30%
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Hi all, this is my second day of Tamoxifen. How long were you on this when you started seeing SE's?
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I am only a few weeks into taking tamoxifen and have decided to apply some medication creativity.
After doing some reading it seems that tamoxifen gets in your system, attains a certain level in your system and then we need to maintain that level for it to be effective. This level, from what I have been able to gather, has NOTHING to do with you size or weight. As well, from what I gather, we do NOT need to take 20mg a day to maintain that level. There have been studies done that show 5mg or even 1 mg a day can maintain an effective level of tamoxifen in a human body.
Without my oncologist's blessing or knowledge I have undertaken my own path of medication.
First day, I took a 20 mg tablet. To get a good dose of it into my system.
Every day after that I take half a tablet - 10 mg. In the morning.
So far SEs are night sweats. However, it is hot, it is humid and I am not clear if this is weather related or tamoxifen related.
I am somewhat dismayed over the number of women posting here whose doctors have not even bothered to suggest altering the dose to see if things get better. Frankly, our docs seem to know very little about how this drug works, how much is needed to work, how the levels stay in the body and what dosage is needed to maintain those levels. Instead docs say to go off, or take a 'break'. I think this is lazy medical practice. It also leaves women totally un-helped (as in getting NO cancer preventing benefit) when perhaps a reduction in dose would make the drug more tolerable and still provide systemic benefits.
I think a reasonable course might be to take a 20mg tab once a week and take 10mg the rest of the time and this should keep the tamox levels high enough and reduce some of the ghastly SEs. But our doctors seem to put very little research and creative energy into understanding HOW this drug works.
In the last 10 pages of posts I've read, only ONE person said they were on a 10mg dose. Everyone else who had trouble with the 20mg dose was either taken off, took a break, was given an antidepressant or searched out gut soothing pills and sleep helping pills. Why aren't our doctors telling us to tweak this? Reduce it? Because doctors ARE NOT drug developers nor are they pharmacists and this is not their area of expertise. They read the book, they do what the book says.
I do plan to talk this over with my oncologist eventually. But he is going to have to prove that what I'm doing IS NOT going to work if he wants me to change. Which he can't do. The 20mg dose WAS NEVER settled on because it was the most effective medical dose. It was settled on because it was the dose that was most well tolerated by women. Those two end goals are VASTLY different and we ought to be demanding MORE RESEARCH and a clearer answer.
My personal opinion is that more of us would be getting some medical benefit if we felt free to throw off the 20mg dose and try 10 or 5 mg, and top it up once a week with a 20mg hit. But the all- or- nothing approach either leaves us taking 20mg and feeling miserable, or we quit entirely leaving us without any medication at all. The worst of both worlds.
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I have also been troubled by this "one size fits all" mentality. It makes no sense to me. I am weighing my options now.
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runor...I completely agree! I have been saying forever that most MOs know very little about female hormones. However they are the ones prescribing this powerful drug. I firmly believe there should be an endocrinologist on our team. Even a gynecologist would be better. My dear cousin passed away from BC 25 years ago at the age of 38. She took the standard dose of tamoxifen back then and nothing at all has changed in all these years. IMO this should not be a one size fits all drug and hormone testing should be routinely done. Good luck to all navigating this complicated disease.
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i just read the one study I could find that indicates a low does of tam is jut as effective as 20 mg a day. They discuss 5 10 and 20 mg. I'll ask my mo in September0
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I plan to ask my MO as well. But the thing to bear in mind (for me) is this: he is NOT an expert on drugs. He probably does not know too much more about Tamoxifen than I do at this point. He knows about current chemo because that is his daily bread and butter. But Tamoxifen? Pfft, that's some old stuff from the 70s, here's your package lady, off you go, hope it's not too bad for you.
Your MO is only as invested in knowing more about Tamoxifen as he feels it's important to be. And many of them don't think it's that important. A 20mg dose is an established industry standard, what's to know? There might be the odd, motivated MO who is pouring over the net for little studies experimenting in lower dose Tamoxifen, but overall your MO is waiting for The Big Study, the one with 100,000 participants that took place over 30 years and that study simply is never going to happen, and thus never going to get his attention. So most MOs prescribe Tamoxifen knowing that it's effective, but beyond that .... it's pretty dull from their perspective.
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I have friends who are endocrinologist/ Drug developers/ Oncology Researcher, etc.... They are more interested in how long I am going to take Tamoxifen, then the dosage. "if it's tolerable, do 10yrs". (s/e thus far, minimum, I think). So maybe you are onto something - if people are able to stick with the regiment longer when they less s/e, that might be more benefit with the med than people quitting it due to s/e....
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Bad news related to the tamoxifen I believe. My endometrium has expanded to 19mm from 10-11 mm last July. Waiting for a gne consult for another biopsy. This may be more incentive to reduce or at leastdiscuss reducing the dosage of my tamoxifen. I sure don't want another surgery
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Hey Mollie,
Have you been measured regularly since you started Tamoxifen? I don't know why my gyn thinks it's unnecessary. I have been on T for 1+ years.
Hoping you don't have to have surgery.
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So are you still on Tamoxifan? I've been on it for almost 2 years now. No weight loss here, if anything weight gained.....ugggghhhh.
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Interesting conversation about Tamoxifen dosage. Thanks, Runor, dtad et al.
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if you are asking me, yes I am. I don't see my mo til 25 September. I'll ask him then. I should have more information then also.
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