Bottle o Tamoxifen
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Jo and Purl, I'm generally one of those who suffer in silence people. I was raised by a single father (in the 70's) and needless to say if it wasn't broken or bleeding, you just didn't say anything. But sometimes I just have to vent and I'm really glad I have this board at least y'all know exactly what I'm talking about and I don't ever feel like I just got dropped off from a different planet (I have name the planet Tamoxifen). So now I have a question how long does it generally that to get results from the endomterial biopsy. Just curious I won't be calling I'll just wait every time I call about a biopsy the darn thing has always come back bad, so now I'm a little gun shy (or shall I say "biopsy" shy).
It must be a tamoxifen thing and yeast infections, I had my first ever yeast infection this year and the pcp said it could be from that, since I never had one before and not prone to them.
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Okay ladies, let me see if I can help with the yeast infection subject. I have 2 of those really nasty ones in a row. About a month later, had a 3rd one. Each time, my gyn gave me an antibiotic - 2 doses and another medication that took care of it. He also told me to get some Acidophillus - 1 or 2 billion active cultures and take that all the time. It is every inexpensive and you can pick it up in the vitamin section of your local pharmacy or Walmart. That was 5 years ago and I am still taking it. I don't know about any of you but when I have to take any kind of antibiotics - pill form or IV, I can get a yeast infection at the blink of an eye. I won't stop taking it until I am finished with Tamoxifen. Hey, what have you got to lose? Give a a try. Kathec - perhaps this will work for you and you can eat the cabbage instead of using it "down there". You've got to admit - it is a little funny.
MStrouble - You should get your results in a few days. I had my biopsy on a Friday and got the results the next Thurs - I had an appt for my annual pap so had to be there anyway. If it has been more than 3 days, give your doctor's office a call and see if they have gotten them yet. I'm sure it will be negative. Aw! Positive thinking!!
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Acidophillus is really good to restore and help maintain the ph balance of your body and your vagina, likes it to be perfect. Infections, illness, antibiotics, medications can throw that perfect ph balance off.
I just read an article about a woman who for 10 years has been cycling through antibiotics and stuff for yeast infections which often follow using antibiotics. The antibiotics got rid of the itch and smell from the infection but disrupted the ph so she then got yeast infections. This big mucky muck lady Dr said use this gel (and sorry, can't remember it's name - you need a prescription)..thanks Tamoxifen brain.....and you squirt the gel for so many days up into your vagina. This stuff gets rid of the bacterial infection and doesn't cause a yeast infection. If you got something like that and then took the Acidophillus daily like Jo does to maintain your ph balance, maybe that would help.
Also eating something daily like youghurt would help. Also, wear underpants that at least have a cotton panel which allows for better air transfer. Nylon doesn't breathe.....and yeast infections and bacterial like warm moist places....
There is no reason for any of us to suffer in silence. We have to try and support each other.
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justagirl - I have to so agree with you. None of us should suffer in silence. We should be able to talk about any subject here without feeling embarrased. We are all in this together and I know for me, it has been quite a learning experience. If I hadn't read the posts here soon after starting Tamoxifen, I would never have known about transvaginal ultrasounds and the need for them. I pushed my gyn for 2 years in a row to do one and both times had issues which ultimately lead to the hysterectomy. I have all my pink sisters to thank for sharing their stories.
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Thanks, all you ladies who responded. I have to get an appt for the gyn, there, i told my mo and his nurse about my problem, and they told me to see him. I did take an epsom salts bath and it did seem to help relieve it somewhat! I drink an live active probiotic almost every day, and always wear what my man calls " ole lady underpants" big, comfy and all cotton. no tight jeans. no anal floss underwear. i did have a drink, though. Would that upset my ph balance?
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on alcoholic drink won't do it. Stress can make us have a acidic system. Tomatoes, pineapple, oranges, lemons are acidic. The live active probiotic should be every day I think and on the internet look up acidic food and try to avoid them or reduce the amount. I think Tamoxifen, like the other drugs, just throws our bodies out of balance and we have to re-adjust them. Drinking lots of water too - like a litre a day, and that doesn't include coffee, juice or soda. An alcoholic drink 3 of 4 times a week, if you have no liver problems, and you enjoy it, then as a RN, I can't see any reason not to. Some oncologists will say don't drink if you are on an anti-estrogen and others say it's fine. I can't see how physically and chemically the drink could decrease the effectiveness of our medication. Another idea is to sleep in a night shirt without undies or any bottoms on.....a little airing in privacy....
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Anyone here told to switch from Tamoxifen to Armidex. My onc thought it was a great idea and I think he is crazy. What you you ladies that are post menopausal think. I can live with the SE's of Tami, just not sure about switching.
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I'm 20 yra post menopause and started on the al's. Couldn't handle them and onc switched me to tamoxifen.
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Lezza - Can't help with this one. I am post menopausal but I couldn't tolerate the AIs - Arimidex or Femara. I have read that if you go through meno while on Tamox some MOs will switch you. The studies show this is supposed to be ideal. In my thinking, if the Tamox is doing its' job and your are not dealing with SEs when why change? I'm just saying.....
Perhaps someone will come along and help or you may want to find threads for the specific AI your MO is wanting to switch you too.
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Just a quick update that my endo biopsy results came back all clear! Yay! Makes me feel a little better about taking that Tamoxifen.
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Momof3infla that is great! What a huge relief!
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momof3infla - That is fabulous news. So glad you had B9 results. Hugs!!
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Kathec, I agree with justagirl that one drink didn't cause this. You recently switched to tamoxifen, right? I noticed an increase in discharge and a change in pH early on. I didn't develop a yeast infection but felt things were "off" down there. I got a suppository product at CVS -- can't recall the product name, sorry! -- that was homeopathic for treating bacterial vaginosis. Four days or so using it did the trick.
As my MO said might happen, the discharge is much less now than when I started tamoxifen over four months ago. So my guess is this is your initial reaction, but it will hopefully calm down. Did the Gyno give you anything to clear things up?
Momof3infla -- great news about your clear biopsy!0 -
Leeza - I went into meno after the first chemo. I was all set to have an ooph but MO ran bloodwork and found that I was definitely in meno and that my estrogen levels were barely measureable.
He wanted to switch me then but when I asked why I couldn't stay on the Tamoxifen he said I could so I did. At that point most of the side effects - excess mucus, leg pain, headaces - were subsiding or I was getting used to them. I did not want to go through that phase again and the MO agreed.
Since then (my original MO retired) my current MO has just kept me on it and now with bone mets he said I'll be on it indefinitely.
If it's working for you why switch? I would do more research and maybe get another opinion from a different MO before switching.
Just my 2 cents....
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MarieK I agree with you. From what I heard on the Armidex thread I am sticking with Tami. My onc told me to try it for a month. I think I will "pretend" to try it, fuss about it and then stick with Tami. Chemo put me in memopause too, oh joy! Thanks for your 2 cents- well spent and best wishes
Jo1955- I totally agree with you. Tami seems to be working fine with its minor SE"s so I am sticking with it. Thanks for the feedback. I have a feeling I would not like Armidex and will pretend to try it and then tell him I hate it. Nice to hear form you.
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Lezza13 - I tried Arimidex for 3 weeks and was so nauseated I couldn't stand it. My MO gave me Promethazine to counteract the nausea but that didn't work and there were days I was not comfortable driving my car. Tami is much more tolerable. It seems when I take a break and go back on it, the SEs are fewer and fewer. My latest break was for 5 weeks due to post meno bleeding and then a hysterectomy. I have had multiple uterine issues since I started Tami but those shouldn't be a concern now so I will continue Tami for the next 2 1/2 years - my 5 years will be done!!!
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jo1955 Thanks for sharing your experience about Armidex. I think that is what I will tell my MO at the end of the month I pretend to take Armidex. I will stick with Tami. I keep worrying about future uterine issues but I guess time will tell with that. My gyn said any bleeding and to come see him ASAP. Glad you are almost half way done!
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Am trying to decide whether or not to take Tamoxifen--any guidance? My ocologist said the advantage was minimal (1% difference) and that he was comfortable with my not taking it. Ki-67 was 0% which shows that my cancer is not aggressive. Margins after surgery were 2mm and radiations ends mid-September. Otherwise am a healthy 55-year-old.
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Ok so this doesn't have anything to do with Tamoxifen, but I thought it was a really great idea, so I thought I would share. I'm on another board and one lady stated that her oncologist instructed her to get a medical ID bracelet. That if something would happen to her and she couldn't talk how would they know what arm was off limits. I had never thought of that. So I have ordered one and now have a medical id card in my wallet, that list my condition, medication, and allergies along with my drs name and numbers.
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mstrouble - Although I don't have lyphedema, I purchased an alert bracelet a long time ago. I also saw it one another thread. It does tell medical personnel that the arm is off limits. I also make sure to tell the nurse when I go for sugery. Since the bracelets are metal and that is not allowed in the OR, they nurse will make a special band for the arm you need it on. When I was in the hospital for my hysterectomy, the CNA went one step further and made a sign that basically said my left arm was off limits for anything - needle sticks, BP, anything - and put it on the wall at the head of my bed. I think everyone should get one of these. If you go to the National Lymphedema Network website, they sell one on there for $18.00. You have to complete a short form indicating what arm is off limits and it is printed on the bracelet. This is where I got mind.
picklesnd - I was 55 when I was diagnosed and although my numbers were also low, I talked to my MO at length about taking an antihormonal. I was post menopausal at the time and of course he wanted me to start on the aromatase inhibitors. I thought - "Why not?" I would give it a shot. I wanted to do all I could to prevent a new primary and/or recurrance. I had no luck them then and ended up on Tamoxifen. Outside of multiple uterine issues which is the exception and not the rule, my SEs have been very minimal. I am half way through my 5 years. When I got my Tamox script, I didn't sit on it like some others have done. I said to hell with it and just jumped right in. Everyone has their own reasons for delayingor not taking it at all. This is an individual decision. You know your body best and I think you will make the right decision for you.
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Hi ladies, I just read through some of the threads. I'm going to take a deep breath and join you all. I took my first tamoxifen pill today. I'm scared. As with each step of this process, surgery, chemo, radiation, I become paralyzed with fear as i read all the side effects. This post is 700 pages long. I need reassurace that this is the right thing to do (as my doctor feels it is) and that I won't suffer horrible side effects. The number one thing I do not want is weight gain! I'm already up 8 lbs that will not come off. I'm exercising like crazy and trying to watch what i eat. I took the pill cause my doctor felt this was the best step for me. But the side effects scare me.
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Robin3 - Side effects will differ for each person. I for one did not gain any weight. Hot flashes are minimal and some days I can't decide if Tamox or my degenerative joint disease is giving me fits. Everyone is scared in the beginning - heck, even I was even though I jumped right in and started taking it right away. At the end of the day it comes down to this, we need to do all we can to stop this damn beast.
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Hi Robin, I just started the other day and I have a whole lot more weight to take off that appeared after mx (did start coming off after I was taken off of AI so I'm hopeful). We'll jump in this pool together!
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2nd time - I see you are in Southern California. Where are you exactly? I am originally from Riverside. I started on the AIs and could not tolerate them. On the weight issue, there is hope! Some have been known to lose weight while on Tamox.
Robin & 2nd time - Ask all the questions you may have. The ladies here are so helpful and supportive.
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Re: weight gain worries, I find it interesting that on my Tamox prescription insert re: side effects, possible weight "loss" is listed.
I had always heard (anecdotally) about weight gain connected to Tamox. So since I could not afford to gain weight, I upped my exercise, but also found it very helpful to work with a trainer my oncologist referred me to as part of the survivorship program the cancer center has. That has kept me on track with varied exercises for strengthening as well as aerobic movement. I not only have lost weight, but found that my joint pain (which was markedly increased since starting tamox) has been reduced with the regular stretching and movement. One thing I did not realize is that we need to change up our daily exercise regimen regularly so our body does not adapt to it and reduce its effects on our metabolism.
I will also be continuing to work on preventing any weight gain, since I figure those extra fat cells can't do anything helpful for my ER/PR positive cancer cells.
Does anyone know in terms of foods that are "compatible" with Tamox treatment, where avocado stands? I thought I had read somewhere that due to its high fat content, avocado was on the "foods to avoid" list. I have been mainly avoiding this food, but maybe unnecessarily.... Thanks for your input.
I have to say that I am still bothered by a poor sleep pattern (so I awaken exhausted) and "cognitive fog" issues which is probably my most disturbing side effect. Significant allergies have also surfaced for me since being on Tamox, which one of my docs explained has to do with the estrogen changes since estrogen is immune system protective. Much as I dislike these SEs, I am still resisting my MO's suggestion that I try switching to an AI. I think I'll stay put in the frying pan for the remaining 3 and a half years.....
Some folks have very very few side effects on Tamox, and I do hope this is true for you sisters who are embarking on our "little white pill" journey!0 -
Thanks you guys! 2nd time around, I'm glad to have the company. I guess I should have mentioned that I am a zumba instructor. I'm killing myself doing a million classes trying to drop the weight. Nothing is budging. NOTHING. It's summer and I work in a school system, so i have more time to sub other people's classes. I did 7 classes last week and already taught 4 this week (tonight will be #5). So i'm getting plenty of exercise, and i'm truly watching what i eat (but i do have to eat!) it's pretty frustrating. I can't fit into my old pants...at least not comfortably. I feel like cancer took so much from me, besides peace of mind. That i'd like one thing to remain the same. My joints hurt before taking tamoxifen and by that I mean in my hands. My right index finger is hard to bend in the am. I don't know. I know it could be so much worse so i'm trying to be grateful that if 8 lbs is the most i have to lose, i should be grateful...but it's hard being up in front of the class. I'm aware of each pound. I also feel like if i focus on my weight, i won't worry about recurrence and that fact that this even happened to me in the first place. Kind of like shifting the focus off of cancer. If that makes any sense. :-)
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robin3- My joints ache in the morning from the Tami and i just keep going with my days. Keep up the exercise for the fun of it and watch what you eat and the weight might come off. I was the same weight for 10 years before my DX. MO was not worried cause I had not gained a pound. So enjoy teaching your classes and keep moving. I love Zumba, I just wish my hips did. Every time I finish my three songs on my DVD my leg hurts when I walk the next day. Any suggestions for that.
jo1955- we were DX at the same age, are both from SoCal and both live in TX, interesting.....:)
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Lezza - Where in SoCal are you from and where in Texas are you now? DX at 55 huh? Who would have thought we would be dealing with this at our age?
I am orginally from Riverside and now live in the Rio Grande Valley in Donna which is between McAllen and Harlingen. We have been in the valley for 14 years.
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Hey there everyone.I've just refilled my script for Tamoxofin and see my MO tomorrow.
I really don't notice too many unbearable side effects yet.I was really severely nauseated for like 5 days.But I know that they said that you shouldn't have soy while on Tamoxofin and that week when the nausea started I had some meatballs that where pre made aka...soy protein along with a little meat too.
Would that have been an interaction or caused the nausea?? I was also under some major stress that week.So not sure what think.
Now I do notice that I am a little short of breath or I should say I get winded easier.I don't have asthma that I know of but have had allergies a lot this summer.Again not sure if it's the Tamoxofin or something else.I usually have it with my coffee in the morning.
Now I do have to admit that I have woke up wide awake at like 3am and couldn't get back to sleep a while.
This has been the past 2 nights.0 -
I started the Tamoxifen on Monday. I woke up last night and couldn't get back to sleep and feel nauseated. Very queasy and like there is a lump in my throat. It's only been 3 days. Ugh.
Lezza I'm not sure what to tell you about your hips hurting. It could be your sneakers?? I swear by Asics the platinum gel 6. Any other sneakers and everything hurts.
And if you are doing the dvd at home, make sure you are not on a rug. That for sure will hurt not just your hips, but your knees too! :-)0
