Bottle o Tamoxifen
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Hi everyone, just took my first Tamoxifen tonight. I love the idea of saving the bottles or labels, lol. Ghion, can I ask how much Magnesium you take? I am concerned about insomnia and hot flashes, which I already have. My MO gave me a prescription for Gabapentin, 300 mg at night, but I am hesitant to use it. I have been so nervous about starting Tamoxifen so I am thankful for everyone's opinions and advice
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I take 125mgs of Magnesium, once or twice per day. I break a 250mg tablet to achieve that dose. It helps with joint/muscle aches, sleep and hot flashes. Check with your doctor on the dosage, but there is no direct issue with Tamoxifen. Some magnesium supplements, are more bioavailable than others. I chose one that is not as bioavailable as others, because I am sensitive to vitamins and minerals.
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Michelle, thank you for the magnesium info. I am taking an 81mg aspirin with the Tamoxifen and will add the magnesium too. I am taking the aspirin because of the possibility of blood clots. Ughh, so many pills.
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Can anyone tell me the rationale of using Gabapentin for sleep issues?
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I am on Gabapentin 300mg twice a day. That was started because of neuropathy in hands and feet after Taxol, with the notion that it would also help to relieve hot flashes at night. I still have neuropathy, and still have hot flashes, so I am not sure if things would be worse without it? I think the idea is that the gabapentin is a short-term part of my chemistry kit, not a long-term measure. From looking at the common SEs with gabapentin, I don't seem to be having difficulties with it.
I am taking more magnesium, but part of that is an attempt to manage migraines, along with everything else...sigh. I am taking 1000mg a day. From what little I've read, one of the principle SEs of that would be loose bowels, but since gabapentin tends to be constipating, I figure things will even out. (They seem to!)
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I have been reading some things that make me wonder what the point is.
It seems a certain percentage of people DO NOT metabolize tamoxifen into the substance that actually blocks estrogen uptake. So some taking their pill are getting no help at all from it, but the RISKS are the same. Remember, tamoxifen is a known carcinogen.
Recent research seems to be saying that an even greater percentage of us will develop resistance over time to tamoxifen. So maybe it started out helping prevent a recurrence, but as time goes by it is less and less effective until it's not effective at all. Risks, however, are all the same, those don't seem to taper off.
My question, how many of us are sent off with a bottle of tamoxifen, a pat on the head, you'll be fine, when in fact we have very little help, but don't know it. IT seems the people who are telling us we'll be fine ARE CLUELESS. They hope we'll be fine, but we could be one of those women who derive no benefit or fading benefit as we become resistant to tamoxifen.
In light of this new research I wonder if the Oncotype test looked at the genes that develop resistance (or whatever it is that happens that makes tamoxifen not work). If the Oncotype failed to test for how likely I am to respond to tamoxifen, then I have to think it is an utterly worthless test! Or..let me rephrase that... it is a test that clearly says chemo would NOT help me. BUt it bases my 5 year survival rate on the assumption that I take tamoxifen for 5 years, but no one tests me to see if that assumption even applies to me!
It is possible that I do metabolize tamox, or that I have developed resistance - but no one is looking for that. So I swallow this pill and wonder if all it's doing for me is giving me hot flashes and thinning hair and nothing else. I hope not. I hope it's working. But the numbers seem to say some pretty dire stuff. Has anyone else read this research and wondered about this? ( This topic is discussed in the thread Will 30% of early breast cancers go on to metastasize. Will add link if I find it. (I can't do links! )
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Runor--I believe this may be the thread you are thinking of?
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I would think If the tamoxifen wasn't blocking estrogen receptors as it's supposed you wouldn't be experiencing hot flashes and hair loss. Unless of course you're in menopause which also causes these things.0
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Hi TaRenee,
I am so sorry to hear that you have got that nasty cold that is going around. I hope you feel better soon! Those plays you mentioned sound really interesting I look forwarding to hearing how Law and Order Fairy Tale Unit goes. Do you have favorite plays that you have done or do you like them all? So glad you have something to get excited about and have fun with. Do you get any time off this coming week for Presidents day/ski week?
I've been doing okay been trying really hard not to get the cold/flu bug that is going around at school both the children and teachers have been dropping like flies with it. I took these pass week off from work to recover from surgery my OBGYN wanted me to have. I also took a break from Tamoxifen prior to my surgery. I thought the side effects would lesson up from not taking it, but they did not.. Anyway I am looking forward to getting back to work and doing art projects with the children. But the paperwork I will have to catch up on is a different story. I hope I can get that finished before the end of the month.
Wishing you all the best and hope you have a healthier weekend.
Take Care,
Sara
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Lala1, yes, that is the thread (you computer genius you!). The link takes me to the end of the thread but this particular discussion started a few pages before the last post when someone (can't recall who, sorry) posted some new and not so encouraging research.
Molliefish, I agree with you! On the surface it would make logical sense that side effects = tamoxifen is having its intended effect. But the opposite side of that coin is that maybe those who are NOT having side effects are also NOT getting any protection?
There is NO EVIDENCE to support either of those theories, at least not that I have found.
However the research in the linked thread (above) throws into question just how many of us might not be helped or might have diminishing help as time goes by and the tricky cancer cells find a way to outsmart our blockers.
It's worth reading, if anyone is interested.
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I stopped taking Tamoxifen on Thanksgiving. Just could not stand the bone pain any longer. The bone pain has stopped. My hot flashes are as bad now as they were on Tamo - no relief there but I took Premarin for many years before BC for severe hot flashes. Tamoxifen was not the cause of the hot flashes. Effexor, gabapentin, duloxitine, magnesium, Icool.... Nothing seems to change the hot flash situation since going through menopause, then having a hysterectomy (except when I took Premarin). My thought after reading the previous few posts is: Could this mean that my own estrogen level is so low that maybe I didn't need the Tamoxifen after all?
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Good question! I think that's something worth asking your oncologist.
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Blownaway---Let us know what you find out please! Stopping the Tamoxifen has me a little worried that I'm not doing enough to prevent recurrence. I'm 16 days off Tamoxifen and have found that my hot flashes are no better. If anything, maybe a little stronger and MAYBE a couple more a day. One caveat....I was perimenopausal when I started T and didn't have any hot flashes on it. Those didn't start till I had a hysterectomy 2 years into it. So my hot flashes may not be influenced by T. My joint pain that I had from the beginning is better. I was hoping my 15 pounds I put on over the last 5 years would magically melt away but nope! I will say I was a little worried because I had a lot of the same SEs I had going on T like nausea, lightheadedness, gassy stomach as I had coming off, but in the last couple of days those seemed to have eased. I've read a lot about withdrawal symptoms from Tamoxifen. Makes sense that a drug you take for so many years would give you issues coming off as well. And here's a really weird thing that happened....I go in for a lip wax every month and have been since a few months after diagnosis. I'd really started to notice my mustache! I went in yesterday for my usual and the girl says she didn't think I needed one! She said my hair had barely grown back from the last one! Makes me wonder if getting off the T caused my facial hair growth to slow. Could it be that whatever way it affects estrogen makes you more male-like thus more facial hair? Who knows. Just another T gift I guess. Anyway, now I want the damn weight to come off! And I don't want to have to bust my butt to do it!
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Lala, it makes sense that when a body is starved of its female hormones, the more male hormones are going to take over. Because females have both male and female hormones floating around. Thus the people who experience thinning hair on their heads, but an extra spurt of facial hair growth. Our male hormones are still there, still doing their thing, but our cells can't get the female hormones to balance them out. Stuff goes wonky.
As for weight gain, I hear you! But if I am being honest I can't blame it on tamoxifen. My problem is butter.
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Runor--My problem is I hate to cook. I always tell people that I prefer to get my food from a window!
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For those that were following the previous melatonin discussion where I was talking about taking the smallest dose possible (0.3mg) I stumbled across this which describes what my ND told me about it:
http://www.mwilliamson.com/melatonin.htm
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I had to switch from Letrozole to Tamoxifen about four months ago. The side effects on Letrozole were horrendous. It seriously caused me to be angry all the time. If you make a list of possible SEs I had them. My onco switched me to Tamoxifen and I feel like I will survive. I still have leg pain, dizziness and Hot Flashes. But I can do this with help. The dizziness is the worst as I can't drive many days. I also am on Thyroid Hormone replacement due to Thyroid disease and Thyca. My Endo changed my Thyroid meds and that has caused my blood pressure to be wacky and my heartbeat to become irregular and my anxiety to skyrocket. I am so tired. Next month, my schedule is full of appointments & scans so hopefully they will adjust my Thyroid meds and I will only have to deal with the SEs of Tamoxifen. One weird thing happened and that was I lost 10 lbs. I was shocked as weight gain is the norm for those of us with Thyroid issues. I went through Menopause at the age of 39 due to Polycystic Ovarian Syndrome. So when I was diagnosed with BC I couldn't understand how I could have a cancer that fed off estrogen. My breast surgeon explained that our bodies have other sources of estrogens. That might explain a lot
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Hi ladies, I have been doing hours and hours of research on low dose tamoxifen. Although, there aren't many published studies, it doesn't mean they don't exist. There is reference to Phase II studies that are currently ongoing, researching not only low dose tamoxifen, but a topical application as well. Trials take years and so does FDA approval so I don't think it'll be soon, but I'm hopeful it'll happen. Here's an article about the overview of some of the studies. I'm using this as well as food studies to come up with my own plan to beat the odds of recurrence.
https://breast-cancer-research.biomedcentral.com/a...
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Pamela, I looked as well for low dose (lower than 20mg daily) information and didn't find much.
As far as I understand, the topical application of tamoxifen was more to prevent local recurrence in the breast. I am not clear if that applies to prevent recurrence elsewhere in the body, which is really the bigger threat of the two. As they say, breast cancer in your breast doesn't kill anyone. It's breast cancer gone wild that is a threat.
The more I look the more I realize that 20mg was seemingly not a researched and best option, but simply the one where the least women quit the drug. The most tolerated (by patients). Nowhere have I seen any evidence that more is better. There is evidence that some women do not metabolize the drug properly and growing evidence that many of us will become resistant to tamoxifen. But NOWHERE has anything suggested that higher doses will change any of these outcomes.
In my research and reading anecdotal evidence of this drug, there seems to be a split between what doctors acknowledge and what women experience. Of course, it wouldn't be the first time in the history of the world that the problems and experiences of women were minimized and ignored. But to me it sounded like tamoxifen might be the lesser of the evils when it comes to hormonal treatments. So with my heart in my throat I took my first tamox pill and I have to say, for me, it was a struggle to swallow that thing!
I have had several side effects, but nothing I can't live with. Some of the effects have tapered off 7 months in. And I do not want to change to an AI. If possible, I want to stay on tamox the whole 5 years. To that end, to keep the side effects from being too bad, I take half a dose. I do not suggest anyone else do as I am doing. But I literally found NOTHING that said 20mg was the minimum the human body needed for the drug to be effective. Nothing. So I take 1/2 a tablet every day except on Sunday and Wednesday, when I take a 20mg tab. My thinking: with tamox having such a long half life, I feel that I am having adequate levels of the drug in my system to be effective.
It is interesting to note that I had quite a few side effects on even half a dose, so I conclude that it is doing something in my body! It also STOPPED my periods. No tapering off, no going longer between periods. They ended. Boom. Over. Was regular until I took my first pill and have not had a period or even a hint of a period since. So...something is going on!
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I have been on tamoxifen for 2.5 years now. Over this time i have noticed that my alcohol tolerance has declined. I did not drink much anyway but now a glass of wine just feels too strong for me. Has anyone else experienced this? Could this be anything to do with being on tamoxifen?
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Same for me, Lalala1, I didn't drink wine every day or even every week before BC. Maybe a glass or two every other week, at most. Now, I don't tolerate it well (feel sluggish) and don't really care for it too much anymore (haven't had a drink since New Year's Eve--one glass of Champagne). I don't mind so much, because (a) it was not a big deal to me in the first place and (b) less alcohol reduces recurrence risk anyway. So, fine with me, in the end. Explaining this to other people is tricky. Even I can't explain why I really don't care for wine that much anymore.
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I have never been a big drinker but I have never noticed it. I did notice, however, that it specifically says on the Tamoxifen package insert not to take it with alcohol. I am guessing Tamoxifen somehow can do something to the liver where you metabolize alcohol. Seems to me like liver issues can be one of the possible side effects, if I am recalling correctly.
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I believe you're right Trvler--someone in my FB group has already had high liver enzymes and her MO said it was from the tamoxifen.
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Yes, it seems that Tamoxifen is an extra load on the liver (so it appears it can cause or worsen fatty liver, triglyceride levels etc), so it makes sense to reduce the load caused by other toxins which the liver has to metabolise so we can excrete them, like alcohol.
However, I'm not aware of any direct interactions between alcohol and tamoxifen. It also appears that alcohol is not going to change your capacity to metabolise tamoxifen and so reduce the dose you are effectively getting- whereas my oncologist warned me that both grapefruit and pomegranate juice can affect the body's utilisation of tamoxifen through their effect on liver function.
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Well I guess that ends me taking my tamoxifen in the morning with a shot glass of Vodka. Bummer.
I have noticed, oddly, that my tolerance for extreme sweet and extreme salty is different. Used to be I loved a Tim Horton's sour cream glazed donut. With a cup of Timmy's coffee...mmmm, a treat. Now? No way. I cannot gag down a donut. Way too sweet. Same for potato chips. HUb and kid were eating some watching tv, I took a handful and it was just so violently salty. I asked, are these extra salt or something? No, just the same as always. There was no way I could eat them.
No chips, no donuts, no morning vodka. Really, is life worth living?
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That would hurt. No coffee would be too much to tolerate. I don’t really drink much but I did notice over the weekend that what little tolerance I did have has dwindled. One glass of wine and I was out. But it was way past my bedtime too. So there’s that.
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So I have a question for you ladies- anyone else have cold flashes to go with their hot flashes? I’m talking ridiculous cold regardless of what you’re wearing to the point of shivering with a jacket on in the house. It’s been going on for over a month now. I expected the hot flashes, but alternating between two extremes all day and night is stupid and exhausting!
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Chiarara: pomegranate juice is out? I thought only grapefruit? (Which I hate, so no biggie, but I've been eating pom seeds and drinking some juice.)
Cpeachymom: I'm cold all the time. But don't get the hot flashes! ???
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Cpeachymom, I am always cold! I have been this way for a long time though. I have an electric blanket when i sit in the couch or sleep and a heater fan under my desk at work. I don’t really get hot flashes though. I usually wear cuddles duds or thin leggings under my pants to help keep me warm too. I weigh only 105 (down about 10lbs still) from pre treatment weight. That might have something to do about it
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