Bottle o Tamoxifen
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KarenMarie, do you know how strongly ER and PR positive you are?
The higher that number (or percentage), the more effective tamoxifen is for you. For example, I am an 8/8 on the scale, almost 100% for both ER and PR. My onc said for me, with these numbers, tamoxifen will be highly effective. As those numbers get lower, the benefit gets lower, but the risks remain the same.
So I can take a tablet, risk a blood clot, but get almost 100% effectiveness from the tamoxifen. Medium risk, high benefit.
If you are 70% ER positive, you risk a blood clot (even more since you've already had one!) and you only get 70% effectiveness. Medium to high risk, medium to moderate benefit.
Ask your doctor to clarify this situation with you because you know you have risks, but you need to have a plain grasp on how much benefit you're getting for the risk you're taking. Maybe one of the other hormonals will be better for you with your known medical history of clots.
I hope I do NOT have to take hormonals for 10 years. BUt at the end of 5 I might feel suddenly exposed and like a walking target taking nothing. I will consider taking it, but at a reduced dosage. There is nothing scientific to support this decision, just judgements based on my own conclusions.
I hope you find a decision you are comfortable with.
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tlfrank
I think in the UK they always want you to do radiation and tamoxifen if you have grade 3 DCIS but not for lower grades. It seems the research is that a lot of DCIS will never become invasive, and in the days before mammograms it would never have been detected because there is no lump. But I'm glad to have thrown the kitchen sink at mine, at 5cm it was certainly on the move even if it hadn't broken through yet.
runor
I hadn't thought of the risk/benefit in those terms. When I started taking tamoxifen (day 3, so not caused by the tamoxifen) I had a bleed and was sent for an urgent hysteroscopy and biopsies, I had a uterine polyp and abnormal uterine thickness, but thankfully not cancer. The gyne consultant said that tamoxifen was a higher risk for me because I was already starting out with endometrial issues caused by too much oestrogen and the tamoxifen would make it worse.
So there was a lot of discussion about the risk/ benefit, there were two oncologists on the team and they disagreed over whether I should take it. In the end I decided to take it until anything happened, I have an annual endometrial scan to check on any developments., so far so good. My own oncologist wanted me to take it, but the board disagreed.
It was a bit of a confusing time, glad that's in the past!
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Dizzybee, in the interest of full disclosure, I am NOT following my oncologists suggestion of taking a 20mg tablet every day.
I do NOT.
I take 20mg on Sunday and Wednesday. The rest of the days I take half a tablet, roughly 10mgs.
Reason: The little bit of information I found on reduced doses seems to suggest that there is reason to believe smaller doses deliver enough of the drug to be effective in protecting from recurrent cancer. I also could not find anywhere, no matter what search words I used or how long I looked, ANY information saying that 20 mgs was arrived at as the best dose after all other dosage levels had been tested. I have found literature saying the 20 mg dose was the most tolerated, because on higher doses many women refused to take the drug. SO they backed it down to the 'most tolerable dose'. Which IN NO WAY says that they ever even looked for the lowest most effective dose.
I also know that I will be really pissed off if the drug I take to protect me from cancer GIVES me cancer! Tamoxifen is listed as a known carcinogen! It was my hope that half a dose would protect me without making me feel so miserable I couldn't function. So far I am able to function, but I still have more side effects than I expected considering that I am on half a dose.
I have said this many times before and will say again that I get angry at doctors who stubbornly and stupidly insist that 20mg it is, come hell or high water. They are insisting on a protocol that was delivered to them with glaring holes in its development. Our docs foist on us 'the way its always been done' but this is incomplete science at best and ignorance at worst. But doctors don't want to be sued so they do things by the book.
Not that anyone else should go rogue like I am, but it's just the way I roll. If this dirty disease is going to come back I have a feeling it's going to, no matter how much tamoxifen I take. All you have to do is read statistics here to see the reality. Women take their pill faithfully every day and the cancer comes back. I don't think there is a guarantee, so I am aiming for comfort. A middle road. Half a tablet most of the time.
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runor
These things aren't straightforward are they? I had to choose whether to follow the board and my gyne consultant, or my oncologist. In the end I came to the compromise that I can live with.
So I can completely understand your compromise. Like you, I read the studies, and they contradict each other all the time. But I have come across the woman who has cancer caused by her radiotherapy for her breast cancer, and also a woman with endometrial cancer caused by tamoxifen. They both post on my UK forum. It brings it home to you that they may be statistical anomalies, but they're real women with lives and families, and they could be any one of us.
Finding that the two oncologists on my team completely disagreed with each other just brought it home that in the end we're the ones who have to live with the outcome, so we have to make our own decisions. Mine is that I take it as it comes, and if things change, so will my decision.
So I understand your approach to this, to find a way forward that works for you. There is no magic bullet that means this can't come back, whether it's eating kale, taking the tablets or anything else.
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Dizzybee, at least I did not have conflicting advice from my health providers. I think that would have made decision making even worse! As it is I have two opinions on a recent mammogram. One says, not sure what that is but maybe the cancer we saw a year ago wasn't removed and might still be in there, growing. The other opinion said, nah, that's typical after surgery, ignore it.
Having two opinions on opposite ends of the scale does NOT provide much guidance, clarity or comfort. Who do you believe? Worry? Don't worry? Seek more tests? Ignore it? Agh! (at this point I am waiting 4 months, having another mamm, comparing the two for changes.)
No. No guarantees. Wait! Wrong! One guarantee! That we are all going to wake up in the morning with thoughts of our mortality on our minds like never before. That is almost a universally guaranteed change after breast cancer diagnosis.
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runor
At first I found it very confusing that the two oncologists disagreed. But they both said the risk benefit was finely balanced. And in the end, we all talk blithely about getting a second opinion, there would be no point if the experts always agree with each other.
Waiting for another mammogram must be really tough, I'm surprised they didn't do more biopsies if there's a doubt about an area. You could have had your mind put at rest a long time ago if it is all okay. But I didn't realise that it looks different after surgery, I guess it makes sense that there is scar tissue and maybe a cavity. I had a lot of tissue removed and the rest moved around so nothing is where it started, I wonder how that looks on a mammogram?
In the end, I guess we're all having to learn to live with uncertainty. On my good days that seems fine, on a wobbly day, not so much. But I really feel for you, that is a whole load of worry to deal with. Sending you a hug!
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Add me to the list of bottle takers. I’m 2 days in and I already have an itchy rash on my arm and on my stomach!
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Houmom- oh no! I had an itchy burny rash on my back, shoulders and upper chest around collarbones from tamoxifen. 2 things that really helped were 24hr antihistamine (Claritin, Zyrtec, Allegra, xyxal - take your pick. Just don’t use Benadryl) and vagifem cream (store brand works too. Vagifem has 20% benzocaine in it that basically numbs the itch. I kept tubes of it in the bathroom, the kitchen, the bedroom, the car, etc. for me the itch would come on very fast all at once and it was intense. Vagifem would take it away in seconds.
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Thanks Lula, I will give those a try!
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I've been hesitant to post because I didn't want to jinks anything. I've just started my 4th month of Tamoxifen so it's still early. My side effects which started a few weeks after starting were mild hot flashes, maybe 5 a day. Mostly in the evening and night. No sweating but clammy sometimes. Mild joint pain when I would first get up from sitting, that would go away by the time I made it to wherever was going in my house. Interrupted sleep, dry skin, and the hair around my face has thinned a tiny bit. Might not would have even noticed but It’s growing back in from chemo loss so I’m really paying attention to it.That's really about it, all annoying but nothing I can't handle.
I started Magnesium about 7 weeks ago or so and joint pain is totally gone an hot flashes are mostly gone, I'll have a very mild one maybe very other day or so. For sleep I'm taking Melatonin and its helping a little so far. I started with 1mg and worked my way up to 5mg extended release. As far as the dry skin I've just had to make myself have a better skin routine. I've never had to moisturize before so this is weird, my skin was always very very oily. Anyway, I'm pleasantly surprised so far and hopefully all SE's will just stay in the annoying range. Lol
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Glad you're doing well TWills! We're on the same schedule - which I guess makes sense sine we were diagnosed at thesame time.
Ok, I know this is weird but I have been saving my empty tamoxifen bottles. My plan is to stack them up in a pyramid at the end of my 10 years and pose for a picture. . I'm just like a freshman in college who stacks their beer cans in the window 😂 ( I am not really displaying them but they are in a bag under the sink. Lol. I don't know why I'm doing this and who knows if I'll continue but it's what I'm doing for now.
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To funny Legomaster225, I think that’s a fantastic idea! Funny you should say that too because I just threw away my empty bottles earlier this week. Only because I’m perging the house and nesting before my next surgery or they’d still be sitting there. Are you doing well with the Tamoxifen? Sorry if you’ve posted about it, it’s hard to keep up. Although I could go back and look.
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I’ve taken Tamoxifen a full month today. My biggest complaint is the hot flashes at night, but someone (Michelle, I think) suggested magnesium and since taking that the hot flashes have been way less frequent. I do also notice my skin being less hydrated too. Looks like I’ll be buying a lot of skin moisturizer now.
It’s great to have this page to know we aren’t going through this alone. I’ve got one month of this stuff done.
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I've been saving my empty bottles too...and I don't know why! I didn't even think about until I read your posts!
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Legomaster I like your thinking. I have all my hospital bracelets. My oncologist is at MD Anderson and they make me wear one for every visit so I have quite a few.
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I'm glad I'm not alone. 😉 Houmom, that must be quite a collection! One that is hard earned too!
Scrafgal - we might have to exchange pictures here 10 years from now with our collections!!
TWills, I have not had any real side effects that bother me. I had a baseline trans vag ultrasound that showed minor thickening but it was only a few weeks into starting tamoxifen so I can't really blame it. I am having follow up procedures to make sure it doesn't change. If it dos I'll just switch to an AI a bit earlier than planned
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Lego -- love the Tamoxifen bottle idea!
I think anyone on Tamox should demand a trans/vag US every year. I am. My gyno was fine to do it --- and why not to alert us to issues?
I've had no real SEs with Tamoxifen or nothing major in any case.
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TWills- my SEs are almost exactly the same. Drier skin, more easily interrupted sleep, but nothing significant. The drier skin I find very interesting, since I've always been frustrated by my skins oily tendencies. Its actually a good SE (well, I may not say that in winter...it's a very warm, humid summer where I live). I wonder if it's because our ovaries start pumping out more estrogen (if premenopausal) or if its because the action of estrogen on the skin is being blocked or if estrogen is more active in the skin with T, like the effect on bone?
Almost 2 months on the big T. 118 months to go. Lego, love the idea of the pyramid of bottles.
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Lego, love the idea! My dh will hate me, though! I save all sorts of stupid stuff. Still have all my hospital bracelets and looking on Pinterest for a craft idea with them...
Anyone here have increased neuropathy on Tamoxifen. I had some in my feet after Taxol. But now, after 6 days if Tamoxifen, I am noticing it in my hands for the first time.
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My tamoxifen comes in blister packs, pop the tablet out the back. No bottles. I'm bummed.
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Maybe on days we're frustrated we could set the bottles up like a carnival game and throw balls or something at them, or maybe a bowling type set up. Might be a great way to blow off steam. I’ll be thinking of how to use the blister packs.Lol
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Rhyfelwr:
I have also had increased neuropathy on Tamoxifen, I find it to be even more annoying if I am overly tired. It is just annoying and frustrating. I am on week 8 of Tamoxifen treatment and find that the increase comes and goes. Glad to know I am not loosing my mind thinking it was only my mind playing tricks on me about the increase of my leg neuropathy from past Luekemia chemo.
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Good idea TWills. Maybe we could use a sample implant as the ball? Ora knitted knocker? Maybe a pitcher of margaritas would help too.
Sorry about the blister packs runor. Maybe you could attach them to a ribbon or something. 😊
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Bahaha, Legomaster, perfect!
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From my efforts to tidy up my stash of empty containers with potential:
So glad I saved the gelato tubs to store the empty nib tins!
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Lol Rhyfelwr, I’m no expert but I think you might have an issue. Lol
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I have my doctor visit bracelets and my Tamoxifen labels (not the bottles) in a box for when this is all over (yeah, I know, but still). I’m going to have a bonfire and burn them. Kind of like a “kiss my a$$ Cancer” ceremony.
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Oh TaRenee, That is a great idea to have a bonfire and burn all your Tamoxifen labels. I am going to start saving mine too to burn after my 5 years is up. How are you doing by the way are the kids at school treating you well. What plays are you currently working on with your students?
Wishing you all the best in life and burning cancer away!
Take Care Hugs,
Sara
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Sara, I’m fighting a cold and feel like crap but I’m doing okay. The kids are really great. We just picked out our one act plays to perform in the Spring. I have to meet with admin and set the dates. The plays are Law and Order:Fairy Tale Unit and The Brothers Grimm Spectaculathon. I will order scripts today and we start auditions next week. I’m excited to be directing again.
How are you doing
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Make wind chime with the blister packs?
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