Bottle o Tamoxifen
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I just looked at those articles as well. Couldn't get past the paragraph that talked about Tamoxifen being most beneficial for POST menopausal women. And that's just a follow up to the mention of it CAUSING breast cancer in the other breast. Pretty sure those statements are not accurate. Especially since it giving mostly to PRE menopausal women and it cuts the rate of CONTRA lateral breast cancer by approximately 50%. So I didn't finish reading it. I took T for 5 years. I seriously considered 10 years even though the Breast Cancer Index Test gave me an almost zero percentage benefit to continuing it for another 5 years. But it also gave me a "High" risk for recurrence (albeit on the very lowest end). I stopped taking it and debated for a few months on whether or not to just take it any way. I had lots of SEs but non that were debilitating. And then one day I realized I forgot to debate the issue. And then one day I realized it had been lots of days since I thought about it. So I just never gave it another thought other than periodically praying that I'm doing everything else I can to keep cancer away and then just living my life. My wonderful, crazy, wouldn't-trade-it-for-any-other life. And if you're wondering....yes, the SEs do go away.....mostly.
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Haven't been on in quite a while! My anxiety was getting bad and staying away forced me to spend time not focusing on BC & Tamoxifen issues. I am actually feeling a little better over the last few months. Had a few laughs this last hour or so reading everyone's posts.
OK- hair falling out from my scalp continues to drive me 😜 crazy! It can be found anywhere at any time. On the floor, in the sink, in a pie or in my lap. BUT...this is a Minor Inconvenience and I can Laugh and Live with It. here to for known as "MILLI"!
Dear BC sisters with husbands who make new & improved sounds daily, you made me laugh hysterically. My husband is snacking on M&Ms and moaning as we chat. I'm talking about deathbed moans as he chews.. I can honestly say this is the first time his sounds made me laugh. I've been about to join Runor in her cell for committing bodily harm to my DH. When the sounds start.... now I know my anger/irritability is not unusual, but a SE of TAMOXIFEN. I hope to turn it into another MILLI!
The next plague is the muscle terrorism. Definitely NOT a MILLI! Leg cramps, foot cramps and my current favorite- shoulder muscle cramps, are evil! I have found some sources of relief. These may or may not work for you. In addition to BC...I also had Thyroid Cancer and damage to my ParaThyroids post Thyroidectomy. These additional issues cause deficiencies in Calcium levels- Magnesium levels- Vitamin D3 & K2. Depending on things like food additives such as soy (Which is in everything these days) My artificial Thyroid Hormones, Electrolyes, etc can be effected. Whenever I begin to get those evil cramps, I chew two or three TUMs. These replace calcium deficiencies within 15 minutes. If the cramps ease up, I'm good to go. If not, I take an extra magnesium glycinatecapsule. Usually, this eases the muscle terrorism. Hope this helps someone else too.
Well... the latest issue is the dried up Sahara Desert region several of you chatted about. I cheated and soothed the dry area with some estradiol cream. Didn't last and didn't provide enough moisture. Tried moisture cream I used on my breasts during radiation. It actually burned. Currently, I'm using neosporin and it is providing some relief . Will let you know if it proves to make life more comfortable🤗! Not a MILLI either.
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Wow. Sometimes it is really hard to read thru those articles.
Assuming all is with good intentions, but how do these natural therapist ( not regulated like Naturalpathic doc. or TCM practioners) establish their understanding of any drugs given they have not conducted any study or lab tests.
How do I trust the credibility If they are just reading on the materials from opinionated but not accredited people?
I am not a believer on big pharma either. However, if we were to deviate from standard approach of BC oncology, there should be studies or established success at large population base to prove otherwise.
personally experience although powerful but can be misleading given everyone is so different, and there isnt enough information to know whether anyone can replicate those unconventional personal experiences.
So I listen when other BC patients tell me to eat more plants, to exercise more, to relax more. I distant myself when they tell me not to take oncologist prescribed meds because their aunts or friends didn't. the small problem here is, if they are wrong, the risk is on me.
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I saw some red flags in that "Truth about Cancer" page, like the way they suggest that the original manufacturer stopped making it for some reason other than the fact that they probably just lost the patent so it stopped making money for them. Also that website promotes the completely de-bunked myth that vaccines cause autism, which has been proven through meta-analysis to be completely false. I also had heard about the documentary of the same name and my understanding was that they promote apricot pits (or an extract from them) as a cancer cure, but studies have not found them to be helpful. I would rather stick with well-founded evidence-based treatments, complemented by my vegan diet and plenty of exercise, meditation, and good friendships.
At the same time, taking Tamox can suck, so I can see why folks don't want to keep taking it. I started using VMagic (you can buy it on Amazon) to help with vaginal dryness/pain and it seems to have helped, and calcium/magnesium has greatly reduced my muscle cramping to almost nothing. My joint pain is better too; not sure why. My main worry now, besides the vaginal atrophy, is the risk of uterine cancer with Tamox.
My latest problem though is that for the last 8 days I have a feeling that something is in my lower abdomen, causing pressure and a dull pain/discomfort. I've already been checked for a UTI and an Ob/Gyn gave me a pelvic exam and didn't find anything. But I'm going back in on Thursday. It's still bothering me and I want to know what's going on. I do have a cyst on my left ovary (at least per November pelvic ultrasound) so I wonder if that is what is causing the discomfort. Will see what the doc says, but I hope they can figure it out. Anyone else ever have this feeling?
As Rosanne, Rosannadanna used to say "If it's not one thing it's another". ;-)
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HI Minuteatatime,
Yes, I had that feeling for months. Had a pelvic ultrasound and found out my uterine lining was 17 mm after only being on Tamoxifen for 4 months. Had a hysterectomy in Dec because the thick lining was too much of a cancer risk. Ask for a pelvic ultrasound as I don't think a pelvic exam could measure the lining thickness.
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I second Veeder14. I had the same feeling with no abnormalities on pelvic exam but a TVUS show a thickened lining. Mine was 15mm so on my gyn's recommendation we just watched it with periodic TVUS. Then it went to 19mm in about 6 months and we decided on a total laparoscopic hysterectomy. I'm really glad i did it. Easy surgery and recover. And certainly has helped to not have to worry about that part of my body! (Except for the very very slim chance of vaginal cancer because, well...you know...I do still have one!!)
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Hi ladies,
I hope you all are having a good weekend. Wanted to let you know. CVS is having a sale on magnesium buy one get one free. I got the soft gel kind, so I should be good for a few months.
Went to see my gyn a few weeks ago and she told me the plan is to have pelvic US every 6 months to keep an eye on my uterus and the ovarian cysts that tamoxifen gave me.
Glad I'll be watched so often it will keep me from going crazy!
How are y'all doing?
Hugs,
Sara
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I don't think I'm going back on Tamoxifen. It feels soooooo good to be off it, especially mentally. I think stopping it increases my risk of recurrence by 1% for each year out of 10 that I'm NOT taking it. So 7.5% increased risk. I'd consider trying a much lower dose despite there not being peer reviewed published studies to support that yet. By the time studies are done and are published that compare 5mg and 10mg to the stupid 20mg dose they've been giving everyone forever, I'd be well past the 10 years I'm supposed to take it. I choose quality of life now. My spouse (also an athlete) fully supports my quality of life choice.
I meet with MO Feb 1st. Going to be an interesting discussion. I'll stick with the healthy eating habits and high fitness I've had for decades along with my added supplements since treatment (D, E, C, B-complex, turmeric, magnesium).- xo
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Andraxo please let us know how the MO took it. I think the life you are leading is fantastic and wondered how you got breast cancer anyways. You do a healthy life style and look what happens. I don't want to be on the Tamoxifen either, and yes I agree about the dosage, it is not a one size fits all. I am thin and yet I am on the 20mg dose. Curious what B complex are you taking? I have looked into some of them and boy it is mega dosing the B's. Then there is one I tried and gave me a headache, this one was a vegan one with CoQ10. Anyway good luck on the 1st.
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LomLin - I'll keep you posted after I see MO on Feb 1st. Yeah...everyone I know was baffled on how I ended up with cancer. I was the fittest person they knew and the only fit person in my family. Great run this morning with my dogs at 5:30am before work. muscles feeling fantastic off Tam. For B-complex I'm seriously just taking Trader Joe's brand. One tablet daily at bedtime. I used to take another brand but they are all so similar. I take all my supplements at once and before bed so if any side effects, maybe I'll just sleep through them
I've been tried to read a lot of journal articles on Tamoxifen. One talked about blood serum concentrations and the concentration may be the best way to determine how well it works, but then some people don't synthesize the drug as well etc. Then there is a new study done in Italy that isn't published yet that compared 5mg to placebo (5mg had significantly less recurrences than placebo) but didn't compare 5mg to 10mg or the std 20mg so that means oncologists will likely be hesitant to go against the 20mg. It all starts to blurr. Seems like a std 20mg dose for all is just not scientific enough for me. I want more research!
The plot thickens today with menstrual spotting today, maybe a light period happening. GYN will overreact and say it's post-menopausal bleeding and biopsy my uterus again (that would the fourth time in 2.5 years) - no thanks, just had the last one in October that was clear/negative. I need to let me body stabilize off Tamoxifen for a few more weeks and see how everything is going.
Happy Wednesday everyone!
- xo
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I take half a dose. Told my onc that I was doing so because there is no evidence, anywhere , that says you have to take 20 mg or the cancer will come back. He agreed. He said there are no studies at all on the most effective, lowest dose.
I decided on half a dose because I am a huge wuss and wanted to minimize side effects. I wanted to minimize side effects because I wanted to stay on the drug, as my one shot at nuking some of this disease. So I took half a dose in the hopes that I would have no SEs and just sail right through.
WRONG!
I have plenty of side effects but I do have to say that the joint pain that made me feel like a creaky tin man, has almost disappeared. I can move around in bed now without everything hurting like crazy. Sleeping was getting pretty painful there! However, hot flashes, day and night, thinning hair, growth of a spectacular beard, LEG CRAMPS and aging skin, I got that. All of that. ON HALF A DOSE! (I do take a full dose on Sunday and Wednesday, half pill rest of the days) Also, my regular and tyanical periods stopped dead in their tracks and I have had nothing, not even the lightest hint of a period or spotting, since my first dose of tamoxifen. BONUS!
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Wow! Runor. I guess this pill effects women differently and I mean by women who still have their periods and women who are post menopausal. I was talking to my primary care doc because I needed another refill for Fosamax and I even taught her something. I am off the Fosamax, Tamoxifen helps with bone loss in menopausal women not women who still have their periods. My doc didn't know this until we looked it up. So SE's are different for each stage of a women's life. I don't get hot flashes either. I do take magnesium for the cramping in the legs. I went to my pharmacist to request a specific manufacturer of the Tamoxifen because my SEs were much better, like almost null. I also take 5000 IU of vitamin B3 and a B complex. Maybe I am warding off SEs because of the supplements, who knows. I do have thinning hair, but I think that could be age related.
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Wow. The Force is really with me tonight! And by Force I mean hot flashes. Good lord. Ready to strip my clothes off and go lay in the snow and make a flab angel.
The Hub foolishly wiggled his eyebrows at me tonight, this is his idea of foreplay. But as I was sweating bullets I turned him down. I said my vaHina was broken. Pronounced va-HIGH-nuh, because it sounds exotic and if you have to have something that's broken it should be foreign made.
This winter is long and I am so bored and my mind goes to black places and I should DO something but there is only so much housework one wants to do. You know things are really bad when the only way you know what day it is is because the little pill dispenser you keep your tamoxifen in has the days marked on it. One day just blends into another.... I think I"m going to take my flabby, hot body and my broken vahighnuh and go to bed.
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LonLin, it's funny you mentioned that Tamoxifen is good for bones for post-menopausal women. I don't think my MO mentioned it, although she may have when she was going over the plusses and minuses for the various anti-hormonals several months ago, but I had other surgeries on my mind before I'd start them and wasn't really concentrating. But at the follow-up with my BS the other day, she mentioned it. I'm hoping it's a good enough bone-strengthener that I won't need anything else. I take Vitamin D, 2000 units/day, and I've added a magnesium-zinc-calcium combo pill twice a day. Hoping all this will work!
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Took my first Tamoxifen dose around 6 last night. Woke up this morning with a brutal migraine. Could it be the T? Good news is my migraine medicine wiped it out.
Stay tuned. NOT liking this whole fricking scenario. So many women appear to have it much worse than me, however. I feel guilty complaining
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SheWra,
I have a colleague who had migraines before starting tamoxifen, and tamoxifen definitely exacerbated it for her. She worked with a neurologist to find a treatment for the migraines that is compatible with the tamoxifen, and she said it was annoying but manageable for the first year and by the second year got much better and it's not any worse now (with the new meds she has) than it was before the tamoxifen.
That said, I have no idea whether it could happen that fast. If you don't already have a neurologist you trust, you could ask your oncologist to refer you.
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LomLin what brand do you request?
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Ginger supplements 500 mg stopped most of the night sweats for me. I found that tip here on bc.org, after going through years and years of posts. I was already taking Effexor at its lowest dose to stop the menopausal hot flashes and night sweats after I had to stop ERT when I was first diagnosed with BC in 2014. Now I get night sweats once every week to 10 days or so, sometimes even less frequently. I make sure I don't eat spicy food at dinner; I canhave it at lunch and I'm OK. I also take my tamoxifen (1/4 dose) in the morning.
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Runor, I posted about Ginger 500 mg helping with night sweats, and my taking Effexor seems to have zapped the daily hot flashes. I also wanted to thank you for your wonderful posts; they have given me a lift and a lot of laughs, which I really needed lately. My husband has multiple myleoma, and just came back a week ago from 9 days in the hospital with a very rare form of pneumonia. Meanwhile, I’m adjusting to my newly discovered lymphedema, with lots of assistance from the Swell Sisters here. Just finished my PT for that before my husband went into the hospital. I have one follow-up visit to go, ut have postponed that until after his doc visits the first week in February. We try not to be in active treatment at the same time. 😉🌺.
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Rae7200, I"ll have to look into this Ginger. As it is, everytime I break out in a sweat Hub thinks it's cause he's so damn sexy I can't stand it... uh, nice try. At this age neither of has been sexy for decades!
I am sorry about your trials with husband and lymphedema. I have swelling in my breast, ribs, armpit, arm and hand. Not overly bad. But it is painful by the end of the day, every single day. Sometimes it flares up and other times it's pretty good and I'm never sure what sets it off or calms it down. But I do know that I have to keep up with my exercises and stretches or I get in bad shape. Take care and happy flashing to all us tamox ladies!
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I started off with nightly hot flushes and pain from the fibroids in my uterus. 2.5 years in, all few and far between. I should be on an AI but letrozole was debilitating from head to toe. Two things have helped. One is this hand held looooong lasting rechargeable fan that I've never used the 3rd speed on (highest). It's by Opolar. Kills hot flashes. Have taken it recently to the hospital and 2 nurses ordered it for themselves. It's the most powerful fan, even more than my floor fan. Got it on Amazon.
Second is for joints. I need a left knee replacement and in the meantime until March 7 my dad's PT swears by this stuff for his own discomfort. I've been taking a TBSP a day since xmas when my dad sent me a bottle. My knee hasn't been at the level of pain it was since. Sometimes there is some but it's much better than when I could fully feel my bone on bone knees grinding. It's called Collagen + C by Neocell. It's 4000mg collagen, antioxidants and C. Pomegranate flavored is the one. Doesn't taste bad either.
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Goodie I asked for Actavis. The pharmacist marked it in my file.
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Hi All, It's been a long while since I have been on this site. At 52, I just hit my 10-year post-BC mark Sep. 2018 (woohoo!) and went off Tamoxifen in May - just shy of the 10-year mark, as I already have osteoporosis and my oncologist said Tam wasn't necessarily good for my bones. I had been on Zolododex during the first 3 years after my DX, which threw me into instant menopause. When I stopped at 45 I actually came out of menopause. While still on Tamoxifen, I had been controlling my hot flashes with Gabapentin/Neurontin for many years, which seemed to do a decent job. Had been on a larger dose, but over the past year reduced it down to (2) 300 mg tabs before bed. Had been doing "ok" with the hot flashes until very recently. I now suspect I am "really" going into menopause, and my hot flashes have really gotten bad again (both night and day).
My onc's NP suggested I either increase my dosage of neurontin, go on Effexor (I had tried that originally but had no luck & had a horrible time weaning off of it slowly, as it made me very dizzy - so not going on that), or St. John's Wort (which I read was a natural anti-depressant). My SIL told me about a non-estrogen remedy called Relizen (on Amazon for $54/month). Seems expensive, my NP hadn't heard of it but said I could try it because non-estrogenic. It's supposed to be from bee pollen. Anyone have experience with any natural, NON-estrogenic remedies like this? Or anything else has worked for you?
Any thoughts are welcome! Hope you all are doing ok!
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Hi Marketingmom,
Congrats on making it to 10 years and for ending Tamoxifen too. You have accomplished so much how does it feel? Are all of your side effects from Tamoxifen gone?
My MO recommended Relizen too she gave me a 1 month sample and I took it, and it worked for me. It reduced my hot flashes so much it was wonderful. I ran out about a month ago and haven't gotten any more because the price is high. I plan to see about getting some more next month when my paycheck comes in. One thing I did to make the Relizen last longer was to take one a day instead of 2 which is recommended. My MO said that if I wanted to get more I could go to the Relizen website and use the promo code on the sample box to get a reduced price. I wonder if your MO could give you a sample to try out to see if it works for you before you go out and spend a lot of money. Relizen took about a month or so of taking it before it really started to work, so that is something to consider too. But I like not having to take yet another drug to help with my Tamoxifen side effects.
Wishing you well in cooling off,
Take Care,
Sara
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Marketing Mom if you are post menopause Tamoxifen does help. There is an article on this website that mentions it. But it doesn't help if you still have periods. Weird how this white pill effects women.
Congratulations on being free for 10 years!!
https://www.breastcancer.org/treatment/hormonal/se...
Benefits of tamoxifen
Since its approval in 1998, tamoxifen has been used to treat millions of women and men diagnosed with hormone-receptor-positive breast cancer. While an aromatase inhibitor is the first hormonal therapy medicine choice for postmenopausal women, tamoxifen is the first choice for premenopausal women and is still a good choice for postmenopausal women who can't take an aromatase inhibitor.
Tamoxifen can:
- reduce the risk of breast cancer coming back by 40% to 50% in postmenopausal women and by 30% to 50% in premenopausal women
- reduce the risk of a new cancer developing in the other breast by about 50%
- shrink large, hormone-receptor-positive breast cancers before surgery
- slow or stop the growth or advanced (metastatic) hormone-receptor-positive breast cancer in both pre- and postmenopausal women
- lower breast cancer risk in women who have a higher-than-average risk of disease but have not been diagnosed
Tamoxifen offers other health benefits that aren't related to treating cancer. Because it's a SERM, it selectively either blocks or activates estrogen's action on specific cells. While tamoxifen blocks estrogen's action on breast cells, it activates estrogen's action in bone and liver cells. So tamoxifen can:
- help stop bone loss after menopause
- lower cholesterol levels
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Hi sm627,
Thanks for the quick response! That is great to hear you had success with Relizen as well - have you been taking anything else with it or just that? I see you are in the SF Bay Area. I am too and have been going to UCSF - is that where your MO is from? I'm now in their "Survivorship Program" where my NP works closely with my oncologist, so I haven't actually seen my MO in many years, but my NP had not heard of Relizen, so I'm guessing she doesn't have any samples (I had asked if she had a promo code, which she didn't). I can ask her again. Although my Gabapentin Rx is basically free with my insurance, I too am hesitant in increasing the dosage - I really want to get off all meds if possible (this would be my last one).
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My MO said that the price of Relizen has went down significantly just recently, haven’t checked but that’s what she told me a few weeks ago when I complained about the price. Pretty sure she said it was down to $25 a month.
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Hi Marketingmom,
I take Relizen for the hot flashes only and magnesium to help keep the leg cramps at bay. I went to the Relizen website and found that if you sign up for their monthly plan it is $35 each month. But it you just want one box then it is $50 plus shipping an extra $5. I don't understand why they don't offer free samples if they want people to buy there product you would think they would people try it out to see if it works for them. At least with Amazon you get free shipping with prime. Maybe your GYN could give you a sample if they have them. Are the hot flashes you have now really bad ones or do they come often?
I live in the East Bay near Berkeley and my MO is at Epic Care in Emeryville. But I did go to UCSF to meet with a genetic consular so I'm kind of in the system. I have heard great things about the cancer programs at UCSF. What do you like about UCSF? How often do you go to see your MO's NP now that you are at the 10 year mark?
Getting off all meds sounds like a wonderful dream that I hope comes true for you soon!
How has it been for you being off Tamoxifen did you have very many side effects? Are most of your SE gone now?
Hope you have a good evening.
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Hi ladies,
Haven't checked in much lately but I do read posts daily.
I am still having the same SE, which amounts to everyone possible. Lol. Dizziness is the newest one to add. I've tried taking the big T at different times and makes no difference.
The hot flashes / night sweats have actually leveled off.
My MO considers me in full blown menopause, haven't had a period since February of 2017. And blood work showed my levels in menopause of a 65 year old. 😟 I'm 45. I see her again in March do you ladies think she still switch me to an AI?
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Hi everyone...I'm another Relizen user. Just want to say be careful about getting it on autoship. They send it to me every 2 weeks!
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