Bottle o Tamoxifen
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Pamela23, if there are current studies being done on low dose tamoxifen, I am not aware of them. There were very few, very small studies done. It was found that 1mg, 5mg were able to keep protective levels of tamoxifen in the system. However, some of the low dose studies I read were using a topical low dose cream that was applied to the skin. This is DIFFERENT than oral tamoxifen.
WIfeWBC, you ask good questions. Questions I asked myself when I sat down months ago and started doing research into tamoxifen. Why is no one doing more testing? Because there is no profit in it. Tamoxifen does not become MORE valuable to a drug company if we know more about it. It is an old drug, not an emerging drug, and old drugs rarely get the time and money invested in trials that new drugs get. New information might be valuable to us cancer contestants ( you're the next contestant on The Price Is Fright, come on down!) but what is valuable to us is NOT money in the hands of the drug manufacturer so ...pffft, who cares?
Here is what I am fairly certain on. The 20 mg dose was never arrived at because it was the lowest dose that was effective. Hell no. It was arrived at as the most tolerated dose. Back in the day when women took 60 and 40 mgs of this stuff, they quit the drug in vast numbers. It made them feel like hell and they said, death is better than this bullshit. So doses were lowered and lowered until women quit quitting the drug so much. But that is still a long way from arriving at the lowest most effective dose. Most tolerated IS NOT lowest most effective. We are given 20mgs because that's the way they do it, that's the way they've always done it and they don't really know WHY they do it, it's just what the book says so ...take your pill and enjoy your new moustache. Globally, tamoxifen has a bad reputation and many women who could / should take it, don't. THe drug has lost the popularity contest and I feel that stubborn, inflexible prescribing is partly to blame. But our doctors have no hard data to go on to change things and risk legal action if they tell us to go ahead and take less and then we get cancer again and sue them for not making it clear that the only thing between us and death by cancer was 20 mg of tamoxifen every day.
Only we know that's bullshit. Read it here in bios. Women who did all the treatments and were actively taking tamoxifen when their cancer came back! So is tamoxifen the magic bullet? No. It might be. It might not be. How's that for feeling secure?
My radiation oncologist knows that I am taking 1/2 a dose and she tells me to take the whole dose even as she knows there is NO HARD EVIDENCE to say why 20 is better than 10. She can't make that claim. That claim has never been tested! So she tells me to follow protocol but knows damn well I'm not going to. It's her JOB to push protocol. And you can be sure if my cancer comes back everyone will point the finger at me not taking the whole dose - which will again be bullshit since no one can prove or disprove that either way. It will just be wild blaming without any proof. "Oh she'd be fine if only she'd taken 20 mg".. uh, no, we know that's not true. If it was, not a single woman on tamoxifen would have ever had a recurrence, but tens of thousands of them have so ... do the math. 20mg a day is NOT a guaranteed protection. Therefore 10mg a day might be jus as good. No one knows. That is my truth.
I take 10mg Monday, Tuesday, Thursday, Friday and Saturday. Every Sunday and Wednesday, I take 20mg. When I first started I took 20mg a day for several days, to get a level of tamox in my system and now hope to maintain that level.
Even on HALF a dose I have had the full gamut of side effects. Leg cramps and hair loss have been the worst lately. I had to put a hair catcher in the tub drain to keep the hair from plugging up the plumbing. Half a dose stopped my periods dead in their tracks. Not even so much as a dusky spot in 8 months (woot woot!). My pathology report showed me as highly ER and PR positive, almost 100% for both. I think tamox has a powerful effect on me. But even if it didn't, Ttere is NO evidence that MORE tamoxifen = better effect. That just does not show up anywhere in the research that I came across.
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Well, hells bells. Just got back from my 5 year checkup with BS. He also does my mammogram. Good news is mammogram was clear again. But when I showed him my BCI results (high risk recurrence/low benefit continuing Tamoxifen) he said I should consider continuing. He was very surprised by my results considering I had low Oncotype so no chemo or rads but then felt maybe the size (2.2cm) or the grade (3) might have something to do with it. Then once I told him the MO did not think I should continue he offered another route. He said if I were to exercise daily, take a daily baby aspirin, take 5000IU of Vit D daily and eat 4-5 servings of fruit or veggies (the darker the better like blueberries and spinach) that he would then not suggest the Tamoxifen. And he's offered to do an MRI yearly for now in addition to my mammogram. The BCI company suggests for women with my results to consider "alternative therapies" and "close monitoring". He feels that his 4 suggestions along with the MRI follow those guidelines and will do more for me than the Tamoxifen which also has the blood clot risk. He did tell me that some of the new studies are showing that a daily baby aspirin shows the potential to drastically cut the risk of cancer, much like they are starting to think about Vitamin D.
So all in all, I'm still questioning whether I should continue taking Tamoxifen. I feel sorta "damned if you do, damned if you don't". I don't do iffy things, especially ones this important. I think for now I'll just take it one day at a time and see how I feel. Sure would have helped me decide if the weight had magically fallen off like I thought it would when I stopped. Instead I think I've gained a couple!! And the damn Tamoxifen discharge seems to be worse! But on the flip side, the joint pain is gone so there's that.
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Ann- I noticed my bottle says Actavis , but the paper attached to it from the pharmacy says it’s from Watson. Maybe they were bought out? I don’t know if this helps at all
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sammi2006, why are you removing your IUD? My MO said i could keep mine. Just curious
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shelabela-My MO said that there could be an increased risk for blood clots if if kept and took tamoxifen. She also suggested I try to avoid hormonal contraception. Soo.. I had my mirena taken out today (ouch) and in five weeks I am getting the copper iud. I liked having light periods and only having then every other month. I haven't had one since last May though. I finished chemo 2 months ago and had my last zoladex shot a week and a half ago.
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sammi, that makes sense, my IUD is a copper one. Forgot some have hormones. I bet that was uncomfortable.
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Re: Lewhy: Hi all, I take my Tamoxifen with dinner. I thought if I took it at night I would get most of my hot flashes then, instead of during the day. I've only been on it a week and have noticed more hot flashes, mild nausea, which I hear goes away, and I've had some headaches. The worst is the hot flashes! They are terrible. I haven't noticed any memory issues yet, or maybe I just don't remember, lol! If these are the only side effects I get I feel lucky! I had a hysterectomy about 8 years ago, due to fibroids. I still have my cervix and one non working ovary. I had the blood test prior to starting tamoxifen which did show I am post menopausal.
Curious as to why you are on Tamoxifen if you are post-menopausal? I thought if post-menopausal you get an AI? I am currently on Tamoxifen but found out just in February that I've been post-menopausal since last August (2017), so have an appointment with my Onc to find out about switching to AI. I've heard many reports that the risk of endometrial cancer increases while on Tamoxifen.
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Hi Kimmer, my MO said Tamoxifen because there are less side effects. I will be seeing her in June so I will ask again. I still have nausea in the morning, but not as bad and the hot flashes are manageable. I am also tired all the time, but all that is worth it if I don't have a reoccurrence! I am curious to see if you get switched. Are you having many side effects
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Hi Ladies,
So I had my 6 month follow-up with my MO on Monday. I asked her about how she could help me deal with my leg cramps/knee pain, pelvic pain and lightheaded feeling a I get every so often. She said that Tamoxifen dose not cause knee pain or feeling lightheaded. I beg to differ because I wasn't feeling this way before I started taking Tamoxifen. Any way her suggestions for my leg cramps was to drink more water, walk and eat foods that are high in potassium plus take a low dose of magnesium 200mg. She said if you take anything higher like 400 or above it can cause you to have diarrhea. She can't do anything to help me with my pelvic pain expect to stop taking Tamoxifen all together. It hasn't gotten to that point of being totally unbearable just annoying. I did find out why my MO became an oncologist it was because she had cancer herself twice and she wanted to do something to help others get through the journey. It is nice to have a MO that knows what you are going through.
I was wondering if anyone else is experiencing things that they didn't feel before and Dr say its not caused by Tamoxifen.
Wishing you all the best and hope your hot flashes stay on the mild side or better yet go away forever. I know that is wishful thinking but one can dream of more better days then achy painful ones. Okay I am off to take my Tamoxifen now I hope not to turn into a monkey as i start to eat more bananas!
Sending Hugs to all,
Sara
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Hello All,
I recently had some blood work done to see if I had a thyroid issue and not just Tamoxifen side effects. The place I had it done allows you to view your blood work online so I did and it didn't raise any flags other than too much B vitamin, but looking closely it showed my iron on the low side of the range and my TSH also on the low side of the range. My doctor called with the results a few days later stating nothing was wrong with my blood work. Well I had decided to start an iron pill (April 6th) to help increase my numbers and see if the fatigue would lessen. I also started taking a drop of iodine (April 3rd) once a day to help with my TSH. I don't know if it's coincidence, but I have noticed a difference yesterday and today. I am still fatigued, but it doesn't seem to be as bad as it was. I was able to clean my house yesterday without taking a break, I was done in afterwards for the day though. I can only hope that this is the beginning to getting my energy back.
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I'm post menopausal and on Tamoxifen also. Tamoxifen is kinder to the bones than AI's so maybe avoiding osteoporosis is the reason?
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Sm627:
Yes, I also have leg cramps, and light headedness. I have no doubt they are both related to the tamoxifen. I am on magnesium for my leg cramps (only for a couple of weeks so far, so can’t say for sure it has solved the problem) and finding something to lean on until the lightheaded moment passes!
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FYI
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She offers a free download of one chapter on her website so you can see for yourself...I highly recommend for those of us going through this BC journey as well as cancer-free women to increase odds of staying that way. It's a great mom's day gift for women in your life.
More info and pre-order here https://pinklotus.com/elements/breasts-the-owners-...
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I'm post menopausal and was prescribed Tamoxifen instead of an AI due to my history of osteoporosis
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jpBCfree -
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Hi Kilmer- I went into menopause at the ripe old age of 39. I'm 64 now. I had Polycystic ovarian Syndrome and my ovaries didn't work. After I finished rads for my BC. They started me on Letrozole and the SEs were horrendous. I was sure someone was feeding me pure poison. My MO switched me to Tamoxifen. There are definite side effects, but for me they are tolerable. The SEs seem to change with the wind though. I am very tired. My muscles, feet & leg joints hurt a lot. However, I have been reading a lot of medical abstracts and there is plenty of data that shows tamoxifen actually improves bone density, unlike the Letrozole I was on. With my history of ovarian cysts, I was a little Leary of the Tamoxifen and endometrial cancer. I had a check-up with my Gynecologist and he is closely monitoring my uterus & ovaries. I have decided that as long as I can handle the current SEs, I'm going to try to stay the course.
Because we all have such different medical issues, It's hard to compare our situations. Hopefully you'll find the best RX for you.
Lewhy- My Tamoxifen came with a faulty thermostat! I swing back and forth from freezing hands and feet to wandering around in the shortest shorts I own burning up with hot flashes. I figure I can deal with this easier than a recurrence for sure.
SM- I have dizzy spells too. My MO said they are SEs of the tamoxifen.I need to drink more liquids but she said to drink things with other ingredients than plain water. It had something to do with keeping the liquid in the body and not peeing it away too quickly. I am forcing myself to drink lemonade, tea and a little Gatorade every day. It does seem to help with "the spells"! They aren't gone, but my husband is no longer afraid to let me out of his sight.
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BlueKoala: I am sorry you are experiencing some of the SE I am. Thank you for making me feel better in that I am not losing my mind. What do you lean on while you wait for the moments to pass? I finding walls at work to be very helpful now a days to lean on. Well I guess one should be grateful that we can still move. Wishing you all the best.
ThreeC: Thank you for the lemonade, tea and Gatorade suggestions I like to dink all three of them. I will be sure to incorporate them into my daily drinking plan to reduce my spells. Glad your hubby feeling better about letting you leave his sight for a while. How often do you drink liquids throughout the day?
Egads007: Love the Spam Classic! Also thank you for the info about the cell phone fan from bed bath and beyond.
I hope everyone had a day with few Side Effects. Today wasn't quite has bad as others. Okay now i must go find some wood to knock on so I won't jinx myself.
Hugs to all,
Sara
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Hi sm627 - when the walls get tiresome, lean on us! Hope the SE’s are kinder to you tomorrow!
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sm267: I lean on walls, tables, sit down if I can, I have even leant on my shopping trolley mid-groceries! Fortunately it doesn’t happen too often, and never bad enough that I have blacked out.
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i agree, i have found drinking more has helped some. I keep something in front of me all the time. It helps more with the dizziness then anything.
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HapB-- Here is some of the info I found when researching. My doctor mentioned it at my appointment but I'd already seen some info on it on this site and others.
https://breastcancer-news.com/2017/05/08/study-rep...
https://www.medicalnewstoday.com/articles/317248.p...
https://breast-cancer-research.biomedcentral.com/a...
I'm not totally sure if the links will work but if they don't google baby aspirin and breast cancer. Hope this helps!
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Anyone getting major pelvic pain/pressure? 3 days now, today being the worst. If tamoxifen is causing this I am most certain I will be throwing them out. 😢🤢
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I did feel pelvic pressure when I first started taking it, the feeling lasted for about 3 weeks then subsided (or I got used to it?). How long have you been taking it? I also noticed when the drug is supplied from a different manufacturer, my SEs seem to change as well.
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Hi tlfrank,
6 weeks yesterday, missing 2 doses in total. Same prescription from the start. Sometimes I feel like it's just gas, but more painful.
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I'm sorry you're suffering, and even more so that I don't have a solution. Hopefully it's just a digestion issue, not related to the Big T and will subside soon. If you're having any sharp pain it might be worth having it checked out.....
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Thanks tlfrank, Advil seems to take the edge off at least.
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Hi all. Just wanted to post here about the side effect of ringing in the ears (tinnitus) with Tamoxifen. An NIH-funded study found a connection in gerbils; interestingly their hypothesis was that Tamoxifen would make it better but instead it made it worse! Both my ENT and my MO think it's unlikely that Tamoxifen is causing my new symptoms, but both support my desire to go off of the big T for a few weeks to see if it gets better. So I'll come back and let you all know. There are way too many women reporting this as a side effect for me to just accept it, and since I'm post-menopausal I could switch to an AI.
Feel free to PM me if you're having this issue too. It is driving me nuts! And I second Shelabela and others who have suggested drinking a lot of water. I've also definitely found Tamoxifen dehydrating.
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Hey GeorgiaPeach- I'd be really interested to see how your break from Tam turns out. I get slight tinnitus followed right afterby dizziness when my ears pop. It makes perfect sense as T does effect hearing (from the mouth of my MO), as well as eyesight. I no longer have to pay for eye exams or ear care since going on it. I do have to say that the ear ringing diminished to rare occasions the longer I was on it. When you're done please post the results If your T break if you'd be so kind! Thx
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I am thinking we should do a survey on Tamoxifen. Questions to include:
How long have you been on Tamoxifen?
How old were you when diagnosed with BC?
Did your cancer re-occur?
Did you start and then stop Tamoxifen?
Did you opt out of Estrogen blocking drugs?
What do you think ladies? I am curious to know how many women actually get cancer again without taking and with taking the tamoxifen. Think we could do this?
EDIT: I started a questionnaire in Google Forms. If anyone has any input feel free to message me.
Thanks,
Cheryl
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cheryl
I think it would help to also ask ER%, node status, oncotype score of known....
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