Bottle o Tamoxifen
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I don't have any stomach issues. I have been eating a greek yogurt smoothie about 5 days a week for about 3 years now, so maybe that's why?
Jul: There are a couple of threads about sex where people talk about various issues. I was worried I wouldn't be able to O anymore but I can. We have finally started having sex somewhat regularly again. I am using astroglide to lube. I actually seem to O more quickly than ever and I am not sure if it is the astroglide or what. It doesn't feel as good to have intercourse as it used to but based on reading in those threads, more practice seems to improve things.
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I haven't had any digestive issues from Tamoxifen, and only have yogurt a couple of times a week.
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No digestive problem here. I make my own Kefir. Drink 2 cups a day.
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I haven't had any digestive issues with Tamoxifen. It seems to make me emotional and irritable but nothing GI related.
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I had nausea for the first few weeks, now I only have nausea right before the hot flashes come. I can predict when a hot flash is going to hit because of the stomach pain
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I also get slightly queezy right before a hot flash. Usually a few gulps of cold water will fix me right up. Every once in a while I'll get heart palpitations right before a hot flash. I definitely would rather have the nausea!!
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I was given Tamoxifen but haven't started it yet. To be honest I'm afraid to start it. I really don't want to. I'm 37 years old and really don't want to be thrown into menopause. I'm scared of the side effects of taking this drug. I have never taken anything stronger than Tylenol even after surgery. I've never taken drugs not even pot so putting something this "poisonous" in my body is really freaking me out! I have read on here that some women choose not to take or do anything after surgery and they have reported to have no recurrence years later. My tumor size was 1.4cm, no LVI, and no lymph node involvement. My onco score was 25 and I am trying to get another MO to order the mammaprint and blueprint tests since my doctor won't order them for me.
If there was no lymph node involvement and no blood vessel involvement and my oncologist said there is a very small chance of recurrence or that it spread somewhere else and they missed it can I just not take tamoxifen and just go for my six month mammogram and MRI? He said without taking it there's a 20/30% chance of recurrence. Can anyone explain to me how cancer works? Like if they got it all and there was no spread from the original tumor does that mean it's nowhere else in my body? I don't know how this all works. I heard of people having recurrences in other parts of their body but how common is that and how does it happen if they got it all with surgery? Can someone explain this all to me as I am very confused
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Hi All:
I am post BMX on year 6 of Tamoxifen.
Can anyone lead me towards any info re: Tamoxifen causing excess cell growth on the lining of the uterus? Saw my gyn after my uterus was biopsied and found to have "dangerous" growth in the lining. Apparently Tamoxifen causes the lining of the uterus to thicken, hence very heavy bleeding during periods...
I am now going to go off of Tamoxifen and will be getting a Mirena IUD. Supposedly in 3 months, we will do another biopsy. If my lining is still dangerously thick ie. pre-cancerous cell risk, I will need to get a hysterectomy with removal of tubes and ovaries.
UGH! Just when I thought I was in the clear -- Breast cancer can be a b****
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Misty, I had very small idc, no node involvement, clear margins after two surgeries and radiation. From all I have read, the thing is, you never know if some have already broken away and is circulating, or if there are a few still left somewhere lurking. I have read that the younger you are, the higher the chance of recurrence. I was 41 when diagnosed earlier this year and I'm just too scared NOT to take the tamoxifen and to know I'm doing everything I can to fight this!!!
White dove, I already had thick lining and ovarian cysts BEFORE starting tamoxifen and both oncologists recommended hysterectomy. I had to push for it and had it done in June of this year and had it ALL taken out. I won't lie, menopause is a WITCH!!!!! I'm now taking antidepressant and sleeping pill. I'm glad I had it done though, because I know what tamoxifen can do to the female organs
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Misty, I was a little concerned originally starting Tamoxifen, but really don't have any side effects other than my nails peeling and are really soft. If that's from Tamoxifen. My monthly cycle came back and didn't even have hot flashes. So, it's not a bad thing to start it and wait to see if any SE show up. My MO told me maybe about 25% may have SE. You can always discuss with your MO if you start to have problems.
Now, since starting I have had a hysterectomy, but I had problems before BC.
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The stomach pain has subsided since I stopped taking the iron supplement. I took the pills at different times, but I think together they irritated my GI tract. I am drinking Naked juices which have lots of iron, eating my greens and hoping I can keep the iron levels up through diet. My hematologist/oncologist said IV iron is an option as well if it drops too low.
Trvler - thank you for the information regarding sex. That's a relief. I'll invest in Astroglide.
Whitedove - my gynecologist said uterine cancer on Tamoxifen is rare. She said if the thickening happened, endometrial ablation could be done without stopping Tamoxifen. She said that she'd prefer I stay on the Tam and get ablation than stop it. Something you may want to ask your doctor about if you are uneasy about the IUD.
Seven days on 10mg Tamoxifen. My gynecologist told me that Tamoxifen would not stop my period, but my period hasn't happened. I'm on day 35. I am pretty regular at day 28 or 29. I've had what I think was a hot flash. I'm experiencing occasional heart palpitations and fatigue. That's it for SEs, so far.
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Misty, I echo what Lovinggrouches said. Give it a try, I have minimum side effects with Tamoxifen. I was diagnosed after just turning 42.
I also have clean margins, No node involvement. Before Oncotype test, my MO said she would be surprised if it's low because of my age. I got 27, pretty "dark grey" area. And I did Chemo to make sure to kill off any little cells that might have broken away. & my MO said Tamoxifen is big part of the treatment. Any bad cells trying to come back would "starved to death"
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Misty, I absolutely get it. I'm right there with you. I don't take any medicines. I did the mastectomy with only aleve. I just do not like medicine. And I'm nervous too. I also had stage 1 with very low chance of recurrence and no lymph node investment. However let's stop and think for one second. We have cancer to begin with. We are young and our body has cells that are reproducing inappropriately. So what is to say our bodies won't continue making those cancer cells. And if we can stop it with taking the tamoxifen then isn't it worth it. I feel that if this came back and I took the medicine then I can say I did all I could. Hope this helps you feel better
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Superius,
What do you mean that your oncologist said she's be surprised if your oncotype score came back low because of your age? Is it always high or in the middle if you're younger? I'm 37 (diagnosed at 36) and my score was a 25. I am trying to get a second opinion from another MO since mine won't send out for the mammaprint or blueprint tests.0 -
Misty, why are you looking for Mammaprint, is your MO recommending chemo? The Oncotype score assumes that you will take Tamoxifen, your recurrence risk is higher if you do not take it. I recommend trying the Tamoxifen, you may not have many SEs. I've been taking it about 18 months, and I have had no side effects other than feeling warmer just about all the time. You can always stop if the SEs are too much.
As to your question about how Cancer works, well that's the $64,000 question. We don't yet know what causes Breast cancer in the majority of cases, or why it metastasizes in some cases, but not others. Why do some people have recurrences, and some don't?
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Misty, if I remember correctly (it's been a while). She said cancer is usually more aggressive in younger patients, & usually there is higher chance that there're some mutation going on, especially I have no cancer history in family what-so-ever.
Genetic testing was recommend (by MO & genetic counselor, as well as whole bunch of personal MD/Oncology frieds).
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I had genetic testing and it came back normal that I do not carry the BRCA 1 or 2 genes. There is no family history for breast cancer. I talked to my BS about being diagnosed younger than 40 about it being worse and she said she doesn't believe that is always the case. She said mine didn't appear to be aggressive and that most likely the calcifications were there for years as DCIS before they turned into IDC. She said if I had been given a mammogram at 30 it most likely would of shown the calcifications but there was no reason for me to have one that early. That is why I want the mammoprint test done and don't know why my MO won't order it. It is so frustrating! He says he is fine with me not doing chemo, that it has a very small chance of recurring based on everything he knows and he thinks with tamoxifen and an ovarian suppression shot every 3 months I should be ok but I want the mammoprint test because if it's low risk that means there is under a 10% chance it will come back and that seems more accurate than the oncotype score which is intermediate for me and there is no research on whether intermediate people will or will not benefit from chemo.0
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Question for you lovely ladies who have been through this. I was just prescribed Tamoxifen - as in, I'm going to go pick it up today. I was wondering how quickly the side effects can kick in. I am flying to LA on Wednesday for a bid proposal. I only have to give a few slides, but I have to be "on". Should I wait until after Thursday to start?
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I would wait.
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It is extremely unlikely that anything would happen if you start taking it BUT if it makes you nervous to do so, I'd wait.
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Thanks. I guess I just wanted to know how soon I could expect side effects. Honestly, it really doesn't make a HUGE difference because my job tends to be one meeting after another, but this is in person so it seems more important. :P
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Hi CJSharma. I started Tamoxifen (one 10mg tablet daily) on Sept. 27. By late day on the 28th I felt fatigue, a dull headache, stomach ache and slightly irritable. Since then I've had an occasional heart palpitation and fatigue. The irritability and headache is gone. A synthetic drug like Tamoxifen effects everyone differently, but since it can cause memory issues and brain fog I'd start it after your slide presentation.
This University of Rochester Medical Center article explains why Tamoxifen causes brain fog, memory problems: https://www.urmc.rochester.edu/news/story/3935/men...
The article, in part, reads, "the breast cancer drug tamoxifen is toxic to cells of the brain and central nervous system, producing mental fogginess similar to "chemo brain."
See this great article on how estrogen (or lack of) effects other areas of the human body: http://www.medicalnewstoday.com/articles/277177.ph... Scroll down to "What does estrogen do?" Estrogen helps maintain body temperature in the brain, so the SE of hot flashes is due to Tamoxifen blocking estrogen from the brain. Estrogen protects nerves and stimulates nerve growth....if you are taking Tam, you may have nerve problems and pain.
Today is day 7 on Tam, and I feel OK except my period is late 5 days, and I have hot flashes (mostly at night).
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Thank you Jul! I really appreciate the detailed response. i'm anxious to get on it, but I will wait until I'm back from my trip. I can finally string two or three sentences together without having to concentrate not to have my train of thought derail. I don't need that coming back when I'm trying to impress a client.
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I would just wait until Thursday just to be safe. I have been on tamoxifen since August 10th and I really haven't had any side effects except some slight leg and foot cramps. Maybe the odd time feeling slightly hot, but nothing to even care about! Have a safe flight and a good presentation!!
My MO did tell me that side effects usually show up by week 3, in her humble opinion:)
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I've been on tamox since July 16 & still no noticeable se. (Keeping my fingers crossed that it continues) Also my period is still regular.
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Starting tamox next week. Love reading positive posts about SE! I have stressed more over it than radiation.
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Radiation was definitely worse than tamoxifen! I am still dealing with fatigue from the rads!
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Carlsoda, I completely agree with you. Rads was worse. Still dealing with fatigue from rads too. But that was only real se I had from rads. Finished July 12.
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I'm supposed to start Tamoxifen around Thanksgiving once radiation is done. I really don't want to have a hot, sweaty, sh$@&! Christmas. Do you think the MO would accept me putting it off by a month
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tbalding: I finished August 2 or 3rd. MO told me up to 3 months to get over the fatigue. Scary to think what it did to our bodies since it is still healing. I am starting some PT (the star program) on Thursday. Not sure what to expect but it's aimed for cancer patients. Hopefully something to boost the energy level.
Beaglemama: honestly don't worry too much about hot flashes. I swear most of us here do not have too many side effects. Tamoxifen is a very important treatment to keep the cancer away. I feel very lucky (blessed) to be able to take something that reduces my reoccurrence risk. Reoccurrence scares me more than side effects!
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