Bottle o Tamoxifen
Comments
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East Coast - my stats are almost the same as yours. 100% ER and 98% PR. But I think those percentages have to do with receptivity to the hormones, not how much you have of each hormone. Does anyone know that for sure?
My oncotype is 13 and the report says 8% average distant recurrence WITH tomaxifen. Double that without. Looking at the chart that comes with the report, even if oncotype is zero it looks like 4% recurrence risk with Tomaxifen and double without. (If I reading that right?) In other words, it sounds like WHATEVER your scores are, there is risk and Tamox reduces it in half and oncs prescribe either Tamox or A1s for everyone regardless of score. Doesn't seem to be a score where they DON'T prescribe. That's definitely looking at the glass half empty because chance of no recurrence is greater than recurrence. If these stats are right and the best we have, the glass is actually half full - the majority willl not experience a recurrence with or without Tamox. The nagging question in my mind is that how do you incorporate the small percentage of very serious side effects (heart attack, stroke, uterine cancer) in making the decision? My Adjuvant online stats are very similar. Without hormone therapy over 10 years - 78% alive & no cancer; 14% recurrence; 8% die of something else. With hormone therapy it's 85% alive & no cancer, 7% recurrence and 8% die of something else. The key problem of course is what everyone has said - you only get one chance at early stage to place a bet on your life. Very upsetting.
Sorry - didn't mean to make this so long. I'm just thinking outloud because I have to see the onc late this afternoon.
ps - not to complicate more but I think the recurrence risks on oncotype and adjuvantonline have to do with distant recurrence (mets) not just local recurrence or opposite breast.
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Reading everyone's posts this morning makes me feel a bit like Chevyboy, I feel for all of you having SE's from the Tamoxifen. If I've had them I haven't been aware of it. It's been a smooth transition for me. I do have trouble staying asleep and I sometimes wake up early and can't go back to sleep like before. I understand this is common for those going thru menopause anyway.
My concern is for those of you who have taken anti-depressants before (for depression or anxiety) and are afraid to take the Effexor. I've had a lot of experience with anti-depressants as my husband has had severe chemical depression on several occasions. I myself have had to battle circumstantial depression. Always, what I have found is that their are many different anti-depressants that work very well and that no one should have to battle this awful illness today. The problem lies is finding the one that works for you. SE's are many and varied but when you find one that fits your chemical make up they are minimal. You have to be patient - it takes three weeks to get in your system before you begin to see progress, then if it's not enough progress you must increase it and wait another 2-3 weeks before you know it that amount is better. Once you reach a clinical dose you'll know if it's working for you. Likewise, if your having terrible se's you can switch to another and not lose the progress you've made on the previous med. Again it takes patience. With the fact that we are taking Tamox as well it often takes awhile to know which drug is producing which se. And if you are on Tamoxifen your limited to only a few antidepressants.
Robynkk, Pennythoughts and GrandmaBubba - I 've been on Effexor for about two months . I started at 37.5 mg for about a week - then to 75 mg for several weeks. Since I was having trouble sleeping I tried taking the Effexor half in am and half in pm. This didn't change my sleeping situation so I began to decrease the Effexor back to the 37.5 mg (over about a week and a half). Maybe I didn't need the larger dose, but I still have trouble with sleep though it's manageable and I'm not even sure it's the Effexor that is the culprit. Hot flashes are almost gone, my attitude is better and I feel more content with the pace of my life now - cancer was a wake up call for me.
It's difficult enough to deal with BC and all the stresses it brings, but for those of us who need a little help dealing with it there are meds available. You just have to be patient. Finding a good doctor helps and most of the time it's the psycharitist's who know their meds. But many oncologist these days are very capable. Hope this helps a little. Decisions..........
Blessings, Carolyn
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I hope this won't bring the Murphy's Law club on me in the future....I think the endometrial cancer stuff is really overstated. A lot of the naturopathic-only believers like to suggest that and other very serious SEs of Tamoxifen are good reason to stop. They like to suggest doctors throw around relative rather than absolute risk. Well, let's be equal. The chances of ABSOLUTE risk for serious SEs from Tamoxifen are in most cases less than 1%. In my case, my chances of recurrence without Tamoxifen are 16%. That's pretty easy to parse out, IMO.
I'm entirely sympathetic, tho, to the gals who can't tolerate the drug. Quality of life is huge. I'm just saying don't knock it 'til you give it a fair shot if you have risk. And to me, anything over 5% is clinically significant.
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One more thing: Just a comment on leg cramps and neuropathy. I saw a neurologist last week for my 'burning tongue syndrome' and found I was doing all I could to treat it. I take vit B-6 and B-12 for the nerve damage done by Chemo, I have chemo-induced neuropathy. He says it will probably go away after I quit taking the Tamoxifen. Three years from now
Anyway the B vit's also help with leg cramps. And one little thing I learned from my child's pediatrician. If you wake with a leg cramp, stretch your leg out heal forward not toe forward. This has helped me many times.0 -
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I've been following this thread for a few weeks and finally wanted to jump in. I started Tamoxifen on 11/15 and was shocked at how easy it seemed - no s/e's! Ha, silly me - almost one month later they kicked in with a vengence. Horrible leg cramps, fatigue, irratiblity, mood swings, acne (I had cystic acne before but this has made it explode). I had expected the hot flashes but haven't had one yet. Supposedly these will go away after your body adjusts...I can only hope that's the case!!
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Hi- Just weighing in on the Effexor issue. Have been on it since I started Tamox. Or maybe even before Tamox because Chemo put me in menopause and my hot flashes felt like panic attacks (or maybe my panic attacks fellt like hot flashes
). Anyway no side effects from Effexor and hot flashes and night sweats are a bit less. Plus I don't want to scream at people quite as much. In fact now that I am about six weeks post rads and 3 months post chemo I am beginning to feel like the old me. Still go to bed early and am a little slow mentally and physically. But, I am getting stronger and happier each day.
So, hang in there ladies! I'll hang out in the caboose with chevyboy having drinks!
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JSandstrom - Welcome to the group. Hate to have you here with us like this. Lots of support and good information.0
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I finished 6 months of CMF chemo on Sept 22, and 6 weeks later had my reconstruction surgery. The chemo caused mild hot flashes and I haven't had a period since May 2010. In the 8 weeks between the time I finished chemo and started tamoxifin the hot flashes became so unbearable I could barely function. I would break out in sweat at the drop of a hat. I had to buy a fan for work and I still use a fan in my bedroom and in the living room. I put off trying Effexor because I didn't want another drug and certainly didn't want to mess with one that could cause additional problems. The truth is, though, that I wasn't getting any sleep and I was uncomfortable all the time. I also knew that once I started Tamoxifin, the hot flashes might get worse. So I called my Onc and 4 days after I started Tamoxifin, I started Effexor. The first week, the hot flashes lessened and I felt like things would finally even out. Unfortunately, they are back and just as bad as ever. I see my Onc on Tuesday next week and will ask about alternatives. In the meantime, I haven't noticed any severe side effects from either drug and it's been ~ 1 month. My finger nails have become very thin (haven't heard of that one before) and I'm having trouble sleeping, but I think it's mostly the hot flashes and night sweats.
Did anyone have severe hot flashes on Tamoxifin that eventually went away?! I can't imagine 5 years of this.
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HOPE IT IS NOT TOO EARLY!
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jsandstrom,
it was one month exactly before my SE started kicking in and i went off the tamox 1 week ago and am not going back on. my SE's are debilitating, EXTREME anxiety, can't sit still feel like i'm crawling out of my skin, deep depression which i've NEVER had, nauseousness and more. I just want this stuff out of my body and so far it's not out. ONC said it could take up to six weeks to get out meanwhile he's prescribed me xanax and paxil. i think the xanax has helped a little but not much. good luck to you!!
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We are finally getting some snow here in Denver! It has been just as dry as a bone....I feel so bad for all on the West Coast!
But I feel worse for you gals that are suffering through all the SE's you have! The first Oncologist I saw, told me that I would get moody & well, bitchy! But I haven't! My HUSBAND is, & he isn't even on Tamoxifen! So I can't help with the issues with depression or hot flahes, or moodines, but I WILL say, I DID have leg cramps for awhile, which got better....
Also for about 3 months, I had sleep problems & took Melatonin for that, but IT caused me to run for the Imodium AD! So I quit THAT one too! Maybe it is because I am older...or maybe it is the combination of the vitamins I take, but I'm not having any problems......
So that being the case, I'm just sittin' in the caboose about ready for a White Russian! Okay, who's with me? xoxoxoxoxo
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Point me to the dining car - I don't feel like cooking tonight
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I am not cooking either - Janet let me know when you are heading out for the dining car. LOL
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I'll meet you at that empty table!
:)
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Janet - I hope they have a casual dress code - I am too tired to change clothes.
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Hey - I'm on board for a White Russian too Cheyboy!
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Happy New Year (almost) you sweet gals! Just wanted to tell you, I really enjoy this thread....No one is crabby, and everyone gets along, and I appreciate that.....So THANKS, & have a Happy New Year! xoxoxoxo ((((((hugs))))) for you all!
Now before you think all I do is run for a White Russian, I'm going to go have a Bailey's & Coffee.. Ha, ha! That was funny...& I'm just kidding. See you in the dining car!
And oh, I make mine with 2 % milk, so it's "better for you".....
A picture I took this morning with "Princess Lacee"....
Don't walk ahead of me, I might not follow. Don't walk behind me, I may not want to lead. Just walk beside me & be my friend.
Diagnosis: 10/26/2009, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-0 -
Oh Chevyboy - your a delight to have on this thread. It never fails that you make me smile about something.
Happy pre-New Year to you too! Looking forward to 2011
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Man, that was quick!!! Ha, ha! Happy New Year sweet ECT...whoEVER you are! xoxoxo0
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Happy New Year All.
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Happy New Year everyone! Let's hope 2011 is the year of the CURE !!
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Chevyboy - Here is your White Russian - Enjoy!
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Wow, so much going on here...it will take me a bit to catch up...loved the conductor photo for the Tammy train. So many good pics and words. I want to say Happy New Year to all my Tammy friends.
I just finished rads yesterday - hooray! And I've decided to start Tammy on Monday. I'm probably paranoid, but my instincts are telling me to cut up my 20 mg tablet into quarters. I'll take 1/4 in the morning, 1/4 noonish, 1/4 eve, and 1/4 bedtime. And then see what to do for Tuesday. Ha ha ha ha! Hoping for no SE's for me and for everyone else!
chevyboy - you are a delight!!!
Happy New Year to everyone here! Blessings to you all!!!
B Be Bea Bean Beani Beeeeeeeeeeeeeeeeeeeeeeeeeeeans!!!
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Beans - Have A Relaxing Weekend - Board the Tammy Train on Monday. Will be joining you before the end of the week, so save me a seat.
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You guys are too fun! Thanks for the drink Jo, Ha! It is soooooo cold here...like I mean 15 degrees! So I'm staying in & organizing cupboards, cabinets, etc! Let's get this midnight train to Georgia on a roll! Hop on kids....See you next year! xoxoxoxo HAPPY NEW YEAR!!!!0
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Chevyboy - I saw the snow coming your way this morning on the news. Stay in and keep warm. We are about 80 degrees and in shorts - sorry I had to mention that.
Here is a nice cup of hot chocolate for you - what you add to it is up to you
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Jo! You rock girl! It is WHAT in WHERE? And you are wearing WHAT? I can tell you aren't sorry at all, Ha! Thank you for the Hot Chocolate! Isn't it too early to add anything? Maybe not!
xoxoxoxox
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Chevy ~ love the snowy pic and the pup too !!!
Just popping in to wish you all a Very Happy Healthy New Year !!!
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I'll have a little bubbly with my coffee!! Thanks Jo!!
Anyone care to join me?
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