Bottle o Tamoxifen
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Musosgirl. . .lupron is an expensive drug. With the insurance I was on last year, I met my annual OOP with just 2 shots. We switched carriers this year and it's cheaper but still several hundred per month. B/c of my hystory ovarian cysts, I am followed biannually by my OB with ultrasound. Last one showed that lupron had effectively shut down my ovaries. Good .uck.
Scottie
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MJS1266, I was nervous about Tamox because I had to switch off my tried and true Paxil. It interferres, so I am on Effexor now. So far everything is okay--not great, but my PTSD is barely raising its head and the Tamox hasn't caused any new SE so I am good. As long as suppressing/removing my ovaries goes okay I am fine staying the course--only want to switch if I start having bad anxiety episodes. Quality of life for me includes my mental well-being too. But like I said, 2 weeks in and alls good.
Just the big ovary decision now... Suppress or evict?0 -
Musosgirl--I elected to evict. I was 49 at diagnosis and no where near menopause, not even with Tamoxifen. But I requested a TVUS for a baseline which did show a thickened endo lining and ovarian cysts. We watched it for about 8 months but with an ever thickening lining my gyn suggested total hysterectomy which I did in Jan 2015. One of my best decisions. Surgery and recovery was a breeze (I did it laparoscopically) and I was back to the gym in 3 weeks and riding at 8 weeks and I could have started earlier but I wanted to be sure everything was good. I feel great! Yes, I have hot flashes which are very manageable as is my slight vaginal dryness. Really glad I took this worry off my plate.
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love all this real life info. Have been so busy trying to catch up $$ and working to post much... Have been on tamox now for a month. I can't tell if the moderate side effects, hot flashes, irregular gi and some joint stiffness, is from the Herceptin or the Tamox. Didn't have a real period yet, just some brief spotting one night.
It's not as terrible as I'd thought. I wonder if it's worth having an oophorectomy for added precaution? I'm 45, wasn't menopausal until treatment, so I'm in a "chemical" menopause like alot of the peeps here.
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oh! Forgot...
I have to take 20mg. size pills daily. I found that dividing it so I'm taking 10mg every 12 hours (instead of 20mg every 24 hours) really helps even things out...the hot flashes and Insomnia. Maybe dividing the dose so its more "even" will help others? So far it hasn't affected my moods, but I was always a low-key, not-highly-emotional type anyway. Though ive gotten pretty scared often times about our various treatments!
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Birdysmom, my understanding is that you should ask your prescriber to write you a scrip for 10 mg tablets rather than cutting them. Not to be alarmist but I have read that Tamoxifen, if cut, can release carcinogenic particles.
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So I was talking to my brother in law's wife last night. She had a lx and rads and is now on Tamoxifen. I asked her if she was post menopausal since she is 60 and she said yes. Do they prescribe it for post m? Why would she be taking that? I thought maybe she tried the post menopausal drug and couldn't tolerate it but she didn't.
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Trvler,
I am on Tamoxifen even after an oophorectomy, I was peri-menopausal before complete hysterectomy. I have both mild osteopenia and neuropathy. MO wanted me to stay on Tamoxifen for a few years as it impacts bone health less and AI's tend to have more nerve and joint pain as SEs. Tamoxifen works both for pre- and post menopausal women where as AIs only work for post-menopausal. Also, at this time, I believe AIs are only approved for 5 years. If you start on Tamoxifen, you can then switch to AIs for 5 years. MJS
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Trvler---I am also on Tamoxifen after and total hysterectomy with oophorectomy. I was nowhere near menopause when I started Tamoxifen and still not near it (very high estrodial levels) at the time of my surgery. But Tamoxifen was making some changes and I did the surgery. My MO and BS are both ok with me on Tamoxifen for the foreseeable future for the same reasons....it impacts bone health less and since I seem to be doing really well managing my Tamoxifen SEs, they said just stick with it. My BS said most of his patients say the joint pain is really brutal on an AI. I can switch at any time and may do so at 5 years just to see how it goes. But I've heard Tamoxifen affects the heart less than AIs and I have a family history of heart disease. I know Tamoxifen increase the chance of blood clots but I'm more worried about an AI affecting overall heart health.
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If anyone on this thread has an all-natural recommendation to help with Tamoxifen-associated pain, I'd love to hear about it. I am already taking Gabapentrin for chemo-bone and nervepain, so I want to decrease the 'scripts in my arsenal, not add to them.
I wake up in the night from the pain in my hips and Tylenol is helping. No offense to my elders, but I feel like an old lady when I first put my feet on the floor every morning. I am doing 20 minutes on my recumbent bike in the mornings, and that seems to help. As a matter of fact, I'm good as long as I keep moving...
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Gardengypsy, I just saw your post and I was recently looking at different boards. I was looking for something to help me continue taking Tamoxifen, because I'm suffering from severe hot flashes, weight gain and muscle spasms. Here in BCO I saw a forum called Complimentary Holistic Medicine and Treatment with so many different topics that maybe you may find something to help you. I'm looking at something call DIM and just changing my eating habits. It can't hurt to look, good luck.
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ARCats
That's a good suggestion. I am so sorry about those hot flashes. I have them, but they don't sound as bad as yours. How long have you been on the Tamoxifen?
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Gardengypsy---Turmeric was the only thing that solved my Tamoxifen induced joint pain. I take the Gaia brand which has the black pepper in it which you have to have to make it work. I added ginger and magnesium to this along with Vitamin D (5000IU). Research each of these. They have multiple uses but help alleviate hot flashes along with joint and muscle pain. And Vitamin D helps with all of these as well as helps to prevent recurrence. Check with your doc.
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I've been on Tamoxifen for over a year and it hasn't been fun. I may try what lala1 is suggesting for my issues. Thanks
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Sherridl, when a woman is on tamoxifen, cessation of menstrual periods does not necessarily mean she has reached menopause. They have to check your FSH and estradiol levels to know.
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hi
I have been on Tamoxifen for a few months. I have hot flashes (just annoying) and joint pain in my neck, hips and knees. I feel 90 yrs old when i wake up with stiffness and I'm only 37. I go to acupuncture every week for it as well as see a naturopath who recommended Black Cherry extract and to top everything off I put frankincense oil on the bottoms of my feet before bedtime. It has gone down some since i started these practices. I find if I sit still for 20 min or more I stiffen up.
I thought I could switch to AI's but I am not menopausal yet. My estrodial levels are very low but so are my LS FSH levels (which should be high if i am menopausal). I get a monthly lupron shot to keep my estrogen in check. I'll have to weigh the option of getting my ovaries out but that comes with even more SE I have read.
Thank you for listing the board ARCats
Complimentary Holistic Medicine and Treatment
I'm def going to check it out
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For those who have had success with ginger, what brand do you use? I have noticed a difference with just turmeric, but the ginger caps I got from Amazon do not seem to have helped. HFs kept me up again last night.
Scottie
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Hi everyone....I'm looking for some advice/support/ideas...anything that might help.
I started on Tamoxifen about 18 months ago after having severe side effects with AI's. I had been doing pretty well, if you don't count the hot flashes that make some nights like having a newborn. But in the last few months, I started having bad leg cramps in the early morning hours, significant constipation, everything is drying out (and I do mean everything) and my hair has started to thin. Why now?? I thought I was going to get off with only hot flashes and since I've had those since WAY before I had breast cancer, I figured no big deal. Guess I was really wrong about that.
I know Tamoxifen isn't the most effective drug for my age and post menopausal state and that scares me in and of itself. I've started taking some Mag Oxide and I'm eating TONS of fiber/drinking about a liter of water a day but I'm about at my wits end. The NP in my MO office wasn't much help. I don't want to stop the Tamoxifen. I'd appreciate any and all advice. Thanks!!
Edit - I just spoke with the pharmacist where I get my Rx's. 6 month ago they changed my brand of Tamoxifen from Actavis to Mylan. Now, I forgot to ask if I'd been on Actavis for the first 12 months, but I will tomorrow. He's going to call his company and see if they can get the Actavis brand. I'm not sure if that's the problem, but I'll bark up any tree right about now!
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Hi I have been on tamoxifen for nearly one year now, and in my experience there has been no weight loss, more like weight gain. I eat less than I used to in a day. I had been diagnosed with HER2, and had chemotherapy and radiotherapy and then prescribed tamoxifen. It appears that I was not to have herceptin because it can cause heart problems. Herceptin being a drug that targets HER2 cancer cells.
Hope all goes well for you, you may have a different experience with tamoxifen. x
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Scottiemom11---I take ginger with my turmeric as well. My holistic doc said he didn't recommend a specific brand, just that I buy one that came from a reputable company. I've taken the Vitamin Shoppe brand as well as NOW brand. I feel both work equally well. I just don't buy any of the bargain priced brands. The turmeric was the only supplement that he specifically recommended a brand and that was Gaia because it's made without extra fillers and it has the black pepper in it that you have to have. He also has me on 5000IU of Vitamin D which helps with the joint pain as well. He said most of us are deficient in Vitamin D. I was very surprised to find out I was deficient. I am an outdoor person and even have an outdoor job. He said it's because we use so much sunscreen which I do. He said everyone should have their levels checked on should probably be on at least 4000IU a day. It will also help with hot flashes as does magnesium glycinate.
Momof4gramof3---These are the things that help me: turmeric, ginger, magnesium glycinate, magnesium chloride (SloMag) and Vitamin D. The turmeric and ginger will help with joint pain. The magnesium glycinate will help with joint pain as well as hot flashes. The magnesium chloride will help with constipation and the Vitamin D will help with joint pain as well as hot flashes. All of this is per my holistic doctor with my MO's blessing. I also include fish oil and baby aspirin to help prevent blood clots which can be a Tamoxifen SE. Also, my MO suggested I try something called iCool which I buy from Amazon. It helped alot with the hot flashes. Pretty much cut them in half in number, duration and severity. As to the drying out, Tamoxifen actually does the opposite for me even despite having a total hysterectomy so I don't have that issue....so far (knock on wood!). And I will say, going from Watson to Teva brand did help with the GI issues I was having from Tamoxifen so that's always something to try.
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Question about Melatonin - is the melatonin supposed to increase the effectiveness of the tamoxifen?
I've been on tamoxifen for a month now - doing well with little side effects.
I generally sleep very well so I'm not sure if I need the melatonin, but I'd be willing to add it if it's supposed to improve the effectiveness of tamoxifen.....
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Mom: Take magnesium to help with constipation.
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Since starting on Tamoxifen in Feb (after refusing it for nearly a year and feeling great) I've begun to find the unrelenting constipation too much to deal with. I take magnesium, eat plenty of fiber, exercise and drink tons of water and still have horrible constipation. Even with the use of laxatives, my stools are like rabbits'-hard pellets, when I can pass anything at all. I took myself off of Tamoxifen for 2 weeks in May, to see if it would help-it did. Any other Tamoxifen side effects have been manageable or have been resolved (like my skin broke out horribly the first month I was on Tamoxifen, but then just returned to normal). I take quite a few other supplements (including fish oil, turmeric and vitamin D) and am not having to deal with hot flashes or joint pains or many other nasty side effects........but damn, the constipation!
I was recently diagnosed with rectocel after complaining to my gyno that everything feels like it is falling out. I start PT for that on Monday. She has told me I MUST avoid becoming constipated due to the rectocel if I hope to avoid surgery. Right now I'm taking my Tamoxifen every other day only, and that seems to help a little, but am about ready to call it done. I'm taking it to prevent a BC recurrence that may very well never happen, but the rectocel is a real present time health and QOL issue.
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belle - What about a stool softener. Also, I've noticed some magnesium brands work better than others.
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labelle~
I have just started the Tamoxofen. Although I have not experienced it yet, this side effect really scares me because I have had problems with constipation off and on for years. The stool softeners work for me sometimes.
Have you ever tried an herbal tea called "Smooth Move" by Traditional Medicinals?
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edwsmom
I have never heard of research showing that Melatonin enhances the effects of Tamoxifen. It is used to help with sleep.
However, sleep is extremely important for our health, and in one study, insomnia was connected to BC.
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My holistic doc swears by SloMag magnesium for constipation. I buy it from Walmart and it works like a charm!
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don't forget about probiotics - they can really help with all things GI (and more!)
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Labelle - I've had a real problem with constipation too but only in the last 6 months. (they changed the manufacturer of my Tamox, but that's a different story) I have tried Smooth Move and it works really well for me. Sometimes too well! I have to be careful how long I let the tea steep. Good luck with your PT.
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Well, 11 months in and I was bragging about no period for 7 months. Then for the past week or so I've noticed I haven't been having hot flashes, what a relief. I was hoping this meant that TIME was easing my symptoms. Then I got my period. I'm guessing the two are related. Hmm, not sure if I'd rather have numerous daily hot flashes or a monthly period - I was so happy for it to be gone but the hot flashes can be so disruptive.
I'm curious if others who keep their period are also having the hot flashes or milder ones or if there's a correlation there that no period and stronger hot flashes go hand in hand. I know the hormones play roles in all of this.
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