Bottle o Tamoxifen
Comments
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re the 5 mags, I cut the 20 mg tab in half and take a half a tablet every other day, no blessings from the MO just a tacit acknowledgement that we don’t know an acceptable minimum dose.
I know it is hard to be motivated, and when it is time, if it is time you will know. Be kind to you, this is a shitshow none of us asked for.
Hang in sister. You can do this.
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Arista, technically, yes, but the test gives you the recurrence rate *with* antihormonals, and you can mathematically back into what percent reduction you get without them by applying the efficacy rate of the drugs to your recurrence rate. If she posts her numbers I can calculate.
In my case, my node-negative Oncotype was 20, which corresponds to a 6% distant recurrence rate risk over 9 years w/ the use of tamoxifen. Tamoxifen gives an approximately 30% reduction in distant recurrences. That means the 6% corresponds to 70% of my total recurrence risk. .7x = 6, so x, total recurrence risk rate w/ no Tamox is 8.57%. 8.57 - 6= 2.57, which means the benefit to me of taking Tamox is a 2.57% reduction in my distant recurrence risk.
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BCat40, my Oncoscore is 11. Doc said chemo would do far more harm than good.
Molliefish, that is exactly what I said to my doc, that the best lowest dose has never been determined and he said, you're right, those studies were never done. So I take 10 mg most days and a full 20 on Wed and Sun.
Today was Mother's Day and I allowed a camera to be pointed at me with my mother. Oh my god. Molliefish, the time is NOW!0 -
Runor, what percent did the score correspond to in terms of a 9 year distant recurrence rate? It should give you a percent "with TAM alone," then I can calculate for you.
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My report says 10 year risk of distant recurrence Tam alone 7% then in brackets (95% Cl: 5%-10%) I am not sure what that refers to.
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Hi Runor, the 95% CI 5-10% means that they are giving you this prediction within what they deem to be a 95% accuracy rate, with a "confidence interval" give or take 5-10%. It basically just means that they have a high level confidence in the prediction but it can never be perfect.'
If your test is telling you that you have a 7% chance of distant recurrence with TAM alone, and we know that TAM reduces distant recurrences by ~30% to calculate your risk of recurrence without TAM, we do .7x = 7, which is easy math of 10% total risk of distant recurrence without TAM. TAM reduces that risk 30% of 10%, which is 3%.
So the absolute benefit in risk reduction on a distant recurrence you are getting from taking TAM is 3%.
Note that TAM also separately reduces the risk of a local recurrence (or new breast cancer) as well, though local recurrences are less scary than distant recurrences as they are more easily treatable.
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Thank you, BCat40. I wish they'd put these reports and numbers into some translation that we can understand. You've got some mad math skillzzz!
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Runor, Beesie helped me figure out the math on my own so I just reapplies the skills. :
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Runor I want you to know that YOU were my motivation to accept the I could reduce my dosage. I dropped it to 10 mg every other day because of your research. Then I was out for lunch with my Mom and she said, why don’t you just reduce again and see what happens? My mom is a retired RPN so she has a good knowledge of the medical world. You can always increase it again she said. She was right. Thank YOU Runor. Thank You for being tenacious and honest and here. N
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runor - do not give up on yourself and do not continue beating yourself up. You are a beautiful person and can work through this. Have you talked to your oncologist about alternatives? I have seen posters from time to time looking for BC candidates to participate in non-invasive weight/nutrition/sleep/ etc studies. I have fought weight gain/loss/regain for a long time. At one time I took tamoxifen, and now Arimidex and Ibrance. Years ago before BC, I found weight watchers very helpful. The key was a great group leader, we spent most of the time laughing, and less time on "lessons". Also it was an "at work" group, so very easy to attend. The couple of times she had a substitute, I realized I would not be as successful with the substitutes. I am finding a journal to track what I eat, how much water I'm drinking, activity/exercise really useful, if I use it and am honest. But it does take time and is easy to be obsessive. I am using "Body Minder Workout and Exercise Journal, a fitness diary. IT also has some pages with calorie stuff, exercise info etc. I am trying to find an easy way to customize it.
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I have been on tamoxifen for 3weeks. Most noticeable side effect is terrible acne break out and my face feels burnt. First Dr. I talked to said I had Folliculitis. She put me on docycline. Got so sick to my stomach. Today I called my internal med Dr. she said she would contact oncologist immediately for me because severe complications can arise, such as Stephan-Johnson disease. Gosh I looked that up and no way will I continue tamoxifen if my face looked like that. Anyone have a problem with acne. It’s mostly my forehead. I am past menopause. This break out is crazy. I think it’s just hormones adjusting or I sure hope. Anyone else experience this? A 66 year old should not have acn
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HI Momgr5,
I have been having acne since starting tamoxifen and I don’t like it at all. My dermatologist has prescribed me Clindamayacin liquid that I put on the break outs. It’s a topical antibiotic and seems to dry it up but it doesn’t prevent it. I’ve got acne on my legs if working out in a hot climate and my face. I never even had acne when I was a teen. This is annoying
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Molliefish, thank you. I thought of you today as I hoofed it around a park, none of which was level, over rocky, steep ground and my ass felt like two fat pillows tied to my thighs and I thought two things at once 1) how did I become this winded, sweating person and 2) I am obviously going to drop dead on this happy little jaunt through the woods. BUt I did it and I realize I need to push myself MORE to just WALK and flex those joints that suddenly seem arthritic and unwilling.
BCat40, Beesie also has some mad math skillz! She can often make sense of things when no one else can.
BlueGirlRed, I don't know that I'm a beautiful person, but I am not in love with myself. Today my daughter snapped a selfi of the two of us, one of only a few in existence. I avoid a camera like the plague. I have no sense of humour about how I look. The last thing I want to see is my own face. As I viewed the pic on FB I realized that my mirror has been lying to me. I look pretty bad in the mirror but out in the daylight covered in sweat OH MY GOD SHOOT ME NOW! Yeah. It was a downer. Like when I see old school friends and think, wow, did she get old - as if I look like I did when I graduated. NOT!
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BCat40, I am curious. You say your Oncotype was 20, which represents a 6% recurrence rate (over 9 years wit tamoxifen). My Oncotype was 11, lower than yours, but I showed a 7% recurrence risk, higher than yours. This does not make sense to me. I always thought that as the number goes up, your recurrence risk rises accordingly. BUt our two numbers, you with 20 score and 6% risk and me with 11 score and 7% risk, do not support my understanding. I am going to have to investigate this further.
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Runor, I noticed this as well with my mom's score. She had hers done in 2015 and had a 13, which was an 8% recurrence risk, whereas mine was 20 with a 6% risk. Also for node negative. I think the risk percentages have been going down over the past few years as they collect more data. They also changed it to say "risk with Tam or AI" instead of just "risk with Tam."
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Hi Veeder14. Thank you for your response I would never have thought of having major acne at 66. This past weekend I contacted tele doc through my clinic. She thought it was folliculitis and prescribed doxycycline. Two doses and I had to stop, I got so sick. On Monday I contacted my primary physician and she said she would contact my oncologist immediately because there is a disease call Stephan-Johnson disease. I really don’t think that is what this is. Googling that made me remember friends saying never gogglesymptom. Since Monday I have not heard from my oncologist. For very one that heals, another one shows up. I started using Witch Hazel which seems to help dry. I probably will schedule appointment with dermatologist. This is the only side effect I have experienced so far. I praying this is all I get for a side effect. With be starting my 5 th week of Tammy on Friday. Thank you for your response.
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I started 20mg of tamxoifen in October. I also need to drink way more water than I ever thought. I also drink a low sugar electrolyte drink every day and some magnesium. I struggle with getting cramps at night, some aches and pains. At first I did have upset stomach daily and some fatigue. That has gotten better, drank a lot of ginger tea! I try to get some exercise and stretching. Tough road, glad I am not alone in this journey!
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rlws - I no longer take tamoxifen, but was on it twice, now take Ibrance and Arimidex (3rd time BC for me). I found magnesium really helpful for cramps in calf muscles. The cramps could happen at any time (AM/PM, active/relaxing/falling asleep, stretching, walking/hiking etc) and were usually painful. There are lots of formulations, and some seem to work better for some people than others. I still take Mg. I switched from "citrate" to glycinate after someone posted that they absorbed it better. I tried "malate" for a while after reading that athletes seemed to prefer it, but went back to glycinate. Staying hydrated, active, stretching, also help
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rlws Just a thought: you might want to take it with food. I drink Ginger tea as well. I do take chelated magnesium nightly for leg cramps. Seems to help. Just have to figure how to deal with the hot flashes. I agree about staying hydrated and stretching and walking. Short walks and yoga seem to help.
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yay! You did it!
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I just realized I had passed my first year on this...my main side effect is weight gain, right in the gut +17 lbs in one year, ugh!
My primary has actually questioned my MO if I should stop taking this given this side effect, wow.
I switched to T after 3 years on Arimidex, so I am only scheduled for 2 years of T for the total of 5 years of treatment...I can't afford another year of +17, I will burst like one of those kids in Willy Wanka.
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Hello, ladies! Looks like I will be joining you all in a couple of weeks (only because I begged my MO to push out the start date of tamoxifen). I cold capped during chemo but have a giant bald patch on the top of my head, which has just started sprouting hair. I wanted to give it a chance before killing it off again.
I've been reading portions of this thread over the last couple of weeks. I am really hoping I don't get the negative side effects. I did not have Oncotype testing, I had Mammaprint instead, which showed me as high risk. I've had ob/gyn issues just about all my life (heavy bleeding, fibroids, IVF, etc.). That part scares me a lot. MO tells me I'll have annual checkups that will measure my uterine lining. Do your ob/gyns do that with you? Some of the SEs include nausea and weight loss but it appears that most on the medication actually gain weight. I hate how the chemo has changed my body already. I weigh exactly what I did when I started all of this but my stomach and inner thighs are way larger than before, which means I've lost muscle and gained fat. I've been exercising (tennis) 3x a week for the last couple of weeks and it takes every ounce of energy to play for an hour. It's been 5 weeks since my last chemo treatment. MO says to give it time. It seems so odd to me that being overweight means a woman is at higher risk for BC yet we are filled with steroids and medications that contribute horribly to weight gain.
Runor, you need to start a blog or do stand up comedy. You are very funny. I'm sorry you are suffering so horribly but glad you seem to find the humor in things, too.
Thanks to each of you for sharing your experiences on this board.
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Cricketdog, are you pre- or post-menopausal? Curious whether your MO offered you the option of an aromatase inhibitor instead of tamoxifen given your gyn issues?
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BCCat - I was premenopausal prior to chemo but it appears to have disrupted that, slowly. I'm 50. I asked the MO to run my hormone levels yesterday to see where I am hormonally. Are you on an AI? I've read the side effects from those can be pretty bad, too.
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Cricketdog, basically I've come to the conclusion that there is no best choice in relation to antihormonal therapy, just the one that works best for you. And the tricky part of that is that you have to take them to find out what side effects you will have! Good luck as you progress down this path.
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Cricketdog, I am not on anything yet as I have to finish rads first. However I am thinking of declining altogether. My MO wanted me to do ovarian suppression plus AI (I am 40) and I am not willing to shut down my ovaries for a ~3% distant recurrence risk reduction. So she wants me to do a SERM instead (torimefene--sister drug to tamoxifen) but that has the same side effect profile in terms of uterine problems. I don't have any pre-existing conditions but my mom had severe uterine thickening on tamoxifen and had to have a hysterectomy.
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Rash, hives?
I've been on tamoxifen for 3 month now with manageable side effects, but my torso has exploded in hives in the last week. Has anyone had eczema or hives along with tamoxifen? Thanks!
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Molliefish, this is for you. Under the heading 'Things Your Doctor Doesn't Know'.... I have quit taking my blood pressure meds! Wow! I feel liberated and oh so naughty. Woo hoo, look at me, I have high octane blood pressure!
Okay. NOw for the real story. Nothing high octane about it. I have been feeling, for lack of a better description, like shit for a long time now. Much of it I have blamed on tamoxifen and much of it is, I believe , due to tamoxifen. Definitely the aches, pains, and unholy leg cramps that I pray I never get while I"m driving! But worse, for years, I have had no energy. None. The thought of having to do something strenuous left me limp and utterly unenthused. When I hear about people (like Edj) who go running - for fun!! - like what the hell kind of whackadoodle business is that?! Who RUNS for FUN? And I would collapse in a heap at just the thought of someone else running. This physical flattening started when doc put me on blood pressure meds in my early 40s. Every move I made was a struggle. I was ALWAYS out of breath. Mind you, we live on a slope. A serious slope. Everything I do is up a hill in one direction. And I don't mean a little incline, I mean a steep hill with some pretty serious degrees of drop. SO you'd think with all he stair climbing I do just hoofing around here I'd be in bofo shape. Nope. Fat blob of huffing jelly, and not in the sexy way.
After reading what Molliefish wrote, that she was taking half a tab (less in fact, 5mg, right?) I thought, why am I still taking 20 mg twice a week? I have enough aches and pains and chin hairs to show that tamox is having a profound effect on my body. So I quit the twice a week 20mg dose and now all doses are 10 mg. But then..in a daring and bold move, I decided to cut the blood pressure meds back to one tablet every other day. Just to see if there was a change in my energy. I am monitoring my blood pressure to see if it shoots back up to the Holy Crap Your Head Is Going To Blow Off range . So far the numbers are pretty good. A few high ones. Like the night I was pissed off at HUb and plotting his murder as he lay there peacefully beside me and I wondered if I could get the cuff around his throat and pump it up. Would his eyes pop out? Take that, you rotten husband who pissed me off. But overall the numbers have been acceptable.The BIG thing is that I do think I have more energy. Took a wrecking bar and hammer to the chicken pen and tore the whole thing down. Stained posts and beams for the deck. Mowed the lawn. Raked up a large area of property and hauled away the debris. Sprayed RoundUp on the thistles and buttercups (toxic to grazing livestock and not native to this area, they were imported in hay), baked bread, made dinner, folded laundry. Normally I would not be abel to get half that done without feeling like I would keel over and die. But I just kept going! Got up the next day and with eagerness plowed through a whole bunch more stupid chores. The miraculous part is the eager. I actually look forward to getting at it. While I am still winded, I am not obliterated to the same degree. I think those damn BP pills were half killing me! My body is still stiff and creaky from the tamox. But it seems slightly more bearable that I at least feel willing and able to get something done despite the creaky. I will continue to monitor m BP, hopefully NOT while plotting revenge on Hub and one day, when I am allowed to see my doc again, will tell him what's up. It's not my blood pressure!! Hah!
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runor, I love you.
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runor- curious about the BP meds. Did you cut back or eliminate them? 8 years ago primary doctor, put me on lisinoprol, BP was sky high. BP came right down, usually hovering 125-135/85. I wished I had told her about the persistent dry cough which came on almost immediately. A year later at a checkup, I told her. A very common SE for some people. She put me on candesarten, a different class of BPs, which not only does a better job of controlling, initialy 120/80, but cough immediately went away. Lately my BP has been 110/65 and even less. Experience low energy. I blame low energy on the Ibrance which I started taking Sept 2019. Also switched from Tamoxifen to Arimidex. Tempted to start taking 1/2 doses of the BP.
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