Bottle o Tamoxifen
Comments
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Ahhh - got my tea in bed - didn't go back to sleep just waited...... he he he
Schveetie - first of all LOVE the name - that is what my girlfriend calls me. Unfortunately tamoxifen isn't the wonder drug for everyone. My sister couldn't tolerate it at all and stopped taking it and went another way instead. I am so sorry for your continued side fx and bleeding. You have done so well perservering for 3 years. I would talk to your onc and discuss options. My sister opted or an ooph and an AI. ((hugs))
Lisa-e - so keen to take your tamoxifen!!!
Kari - yes SFBC, SFC, SF tests, and just for good measure SF .... fill in the blank.
Carollynn - great to hear your good news and losing 8 pounds. For Suzi and your co-worker I am sending my love and positive energy their way.
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schveetie- not sure if its any consolation but my very best friend since I was in high school has the same symptoms as you do- and she's not on Tamox and she didn't have BC!! She had her tubes tied some years ago, and then she started having these incredible problems like you describe. They tried all kinds of things, I couldn't keep track. I remember she was going on a trip with her doll club and had to share a bed with someone and was totally mortified, worried she'd wreck the bed. Being a woman is SO much fun eh? Brave of you to stick it out for so long! Isn't there something they can give you that's better, like Evista or something? Stick around and bitch with us
kari- I had lunch with my Stage IVa tonsil SFC friend, he got clear results on CT scan. This crap is everywhere.
carollyn - if it were a poll, I'd vote for the fatigue from RADS. Since I got to "dry out" all summer from RADs and just started Tamox, I learned the meaning of fatigue from RADS- that SUCKED MAJOR!!!!! Debilitating fatigue, and it hung on for months. Now I am fine. Just please don't tell me you didn't get fatigue until you were on Tamox more than a month- even if its true... another note, so i just ate 2 hamburgers (hey there were 2 in the package and I was hungry, skipped lunch) and I got a headache, I am sure its from the MEAT. When I want to blow off my workout my kid doesn't let me because he wont go to sleep (without crying) unless I take him on the trainer.
Gotta thank him for that.j414- LOVE IT!!!!!
Helena big hugs
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Hi all,
On leg cramps, I read in the paper an article, written by a Dr. Gott and he has a great remedy. Now this sounds to easy, put a bar of Ivory soap under your bottom sheet at the foot of the bed, and no more leg cramps. Lots of people have written to him and said it works. Worth a try.
Hey Helena, if we all do a rain dance at the same time, with the secret handshake, I think it will help the land of OZ. Yesterday, a friend sent me an email, and it showed these bicycle riders, in 120 degree weather(crazy) in Australia, who stopped for a drink of water. A Koala bear, came up to them and begged for water...then another picture showed where a Koala bear went up to house, the family gave it a big bowl of water, and after taking a drink, it climbed into the bowl and sat there. Just broke my heart. RAIN RAIN AND MORE RAIN ON YOUR WAY~~~~
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hi ladies, 2 days on Tamox now and nothing major to report. Hallelujah!
However, it could be that my fill on Thursday caused me so much pain I couldn't really focus on anything else....dunno.....
Helena, your hubby sounds awesome. My DH spoils me somewhat but hasn't yet brought me tea in bed! but then again, he's usually left for teaching class about 2 hours prior to my getting up.
schveetie, wow, if I were having those kind of problems with the Tamox I would have to revisit the risk of not taking/side effects vs. benefit. Now that you know what you know, maybe it's not worth it to you. Did you have DCIS and only DCIS?
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Hi everyone. can i join the train too. i have just finished chemo and am waiting to begin my next adventure tamoxaifen .....if i can do chemo this should be a breeze i hope.
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Leggy- I am trying to picture doing a rain dance while doing the secret handshake, that's the funniest thing I ever thought about... Oh my gawd... that Ivory Soap Leg Cramp thing is all over the Internet, even snopes:
http://www.snopes.com/oldwives/legcramp.asp
and they say it works!
Eliz46- Suddenly the melody of Love Train comes to mind... People all over the world, join hands, get on the Tamox train, the Tamox train.. Yep, that's where we're here for
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Patty B part deux- Brava babe! Very sorry for the fill pain too. Yeah, it does get weird trying to figure out what which where thing is doing which what who thing to us at what time.
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Thanx Leggy - keep dancing baby - supposed to get some relief tonite. Fingers crossed and thank you, poor little koalas ... how much can a koala bear...sorry!!!
Eliz46 - climb aboard this crazy train - didn't do chemo but I feel great so far but can't really compare. I'm sure chemo is the pits.
Patti - he is gorgeous, mind you he is up getting his coffee anyway ... but still lovely.
Kari - so much for sleeping in on the school holidays - woke up at bloody 5am!!
So .. just because .. (sorry Kari doubling up on your motivation thread ... boring aren't I), but here is a shot of me at 7am just back from my walk with my DDog (Abra, abbie, stupid dog, abbiedoobie .. whatever!!). Needed an photo for my friend down in Sydney so thought I would bore you guys as well.
Rachel - right back at you.
Feeding the addiction today, so hot outside and waiting on 1st coat of paint to dry, just like watching paint dry. Ok, I'm out of here...
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Rachel, I know what you're saying (well, I think I do). Perhaps I shouldn't have started it the day before my fill, but I did announce to the world (here) that I was GOING TO START TAKING THAT PILL.
Only 5-6 more fills. I'm really feeling better today so at this point I'm thinking a couple of Percocet and I'll be fine. Except for the Percocet SE's......
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Helena, Oh my, sweet AND gorgeous! what a combination!
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Helena-What a great picture of you! You look so pretty and your ddog is adorable! Background looks very pretty too - someday I gotta get to OZ....
As to the bar of soap in the bed for leg pains. It does work! My youngest son was having a terrible time with growing pains in his legs and I was desparate to find him something so we could sleep through the night. I happened to read an article about it by the Dr. in my newspaper (kind of like the Dear Abby of medicine). Well he used the soap for a long time - til I ran out of soap one day and had to reteive it from the bed! He said it helped and even now years later he will go get a bar of soap and shove it under the bottom sheet on his own if his legs are bothering him. He is starting to grow again thankfully. He is quite short for his age and the pediatrician said he will have to be seen by an endocronoligist if he doesn't start showing more puberty signs by December. It is funny cause the rest of us are all tall!
PattyB- I remember those fills are quite painful especially the bigger you get. I used to take muscle relaxents and found it helped while the poor muscle was stretching. If only gaining weight was painful we would all be in good shape!
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As an IM and ER+, I won't go near VagiFem again, especially as the Vit E 800 IM vag suppository is SO much more effective. (and I can't quite invisage olive/vegetable oil - might turn me off cooking forever!!!)
2 pills down of a possible 1,825 (365 x 5) and so far so good ;-) Have a great weekend everyone.
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I have to agree - I think the fatigue is rads related, not from the tamox. I did 33 rounds of rads and felt fine until the last 2 weeks and I really started to notice each day was more fatigued than the next. I did my rads in the afternoon, after a full day of work, and by the time I got home I was done. Plus the tenderness, swelling and achy sore everything from the rads. Eventually the fatigue went away and I have my pre dx energy levels back, still get a little fatigued from time to time if I don't sleep enough or stop to rest (have to remember we are still healing even though we feel terrific) and I am the poster child for medication side effects - and have little to no se's from tamox - with the exception of increased hot flashes. I am shocked that I'm doing so well, but I'm happy that it appears I can take this without any effort.
My doctor recommended olive oil too, but I just haven't been able to do that - although it might make things interesting if we smell like Italian food . . .
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I was wondering if anyone here is taking an aspirin with your Tamox? If so, was it your ONC that prescribed it or are you just taking it on your own. I'm on my2nd box of Tamox and so far, no real SE's to complain of. I did have headaches in the beginning but they've passed.
Helena, beautiful as always! You're so lucky to be in Aus ! I wish I was there again...maybe I could convince the DH to take me back again this winter...hehe...!
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I am taking a baby aspirin a day, per my onc's instructions. Helps prevent blood clots, they said.
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Can I ask a question of the group? After 5 months on Tamox my Onc is having me take a Tamox vacation. I've been putting up with the mood swings, weight gain, menopausal symptoms, joint pain, and non-stop hotflashes, but my eye symptoms have gotten so bad my vision is deteriorating and my eye doc has nothing more to offer. So, we're trying off the tamox to see if a vacation from it will help. Anyone taken a Tamoxifen vacation? Did it help? When you went back on did you start from ground zero with the hot flashes? They peaked at about 3 months, the thought of starting from ground zero with them makes me want to vomit. (might help with the weight gain I guess)
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kmmd, how long are you supposed to go off of it before they re-evaluate?? And if your symptoms go away, will they try something else? hugs to you
Helena, you could NEVER be boring girl...such a sweetie you are! and your dear abbiedoodle! haha
ok, have to confess and DH told me to post this....we tried the oil...it worked, all involved were very happy....
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As a newcomer to this thread (and starting Tamox next weekend), I have to ask: What does SFBC mean?
Thanks!
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Chelev: Do you take the baby aspirin at the same time as your Tamox? Does it matter?
Terri
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kmmd--that sounds like a good idea. What eye symptoms are you getting?
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Also--I was talking a baby aspirin every day with the tamox and a handful of other vitamins including glucosamine--although I ran out of aspirin so thanks for the reminder to go get some!
Kari--glad the EVOO worked!
AmyIsStrong (love the name and picture!)--SFBC is Stupid F****** Breast Cancer.....
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Wow! I thought catching up with the motivation thread was a challenge! You all have been busybusybusy.
Welcome to Shay, Eliz 46, and AmyIsStrong! I am just about to hit my 7 week mark with Tamox, and my body continues to adjust. I have had some interesting side effects--nothing absolutely horrendous like those I had with Arimidex--some of which (e.g., vaginal "secretions") have "settled down" and some of which (e.g., fatigue) continue to be a challenge. I endured my last T/C chemo in May, and I know I am still recovering from that as well. I tend to be one who is very sensitive to meds, and I think I have had, thus far, a "middle of the road" experience. Shay, I know you will be relieved to have that last chemo done.
I also am an intermediate metabolizer of Tamox, and my dosage is 20mg per day. My onc at this point does not think it's necessary to increase the dosage. Schveetie, I am sorry you have had such a bad experience; I hope you can find an option that is the right fit for your body. You have really been through the wringer! And kmmd, I'm sorry to hear that your experience has turned into such a struggle. How long will you try the tamox vacation? Does your onc think you could try Evista? (I had few side effects with that one....)
Diane--I wish you well with your upcoming surgery. And to all you other "regulars": Thanks for making me smile, giving me a laugh, and sharing some interesting ideas for me to ponder some more (especially the EVOO for the desert--not dessert--although I am leaning more toward the Vit E). It's been a tough week (with regular old normal world illness), and I need more rest and sunshine today! Be good to yourselves!
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Onc is thinking 6-8 weeks right now. My eyes have gotten so dry that I keep abrading and scratching the corneas (by blinking) to the point my vision is really bad. All the eye drops in the world aren't helping. I know I've heard of people stopping and starting and when they restarted doing much better. Hope doing this helps, and that I can restart without problems. Like I said, the rest I was willing to put up with.
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Evening Ladies,
Well you are certainly giving your fingers a good workout with all the typing you are doing. I have nothing to report as such, 2 months of tamox taken. No major se's and have managed to lose 20lbs since I started (did increase exercise and am paying more attention to what and how much I eat have about 80 more lbs to lose though). I hope all you who are just starting off on tamox will do well. For those who have just finished chemo and/or rads, it will improve - I felt it never would but it really does!!! For those of you who are taking tamox longer that I am and who have had problems - thank you for sharing - at least we know what to look out for. I don't know is it just my onc or is it the general approach in Ireland but I was advised not to take any vits or supplements while taking Tamox??!!
I don't think it's tamox related but then again it could be but I have been getting little aches and pains over the past couple of days. Nothing severe but enough to keep me aware, feet, hips, lower back, remaining breast and most bizarre of all ... phantom pain in the removed breast!!!
Kmmd - I hope your eyes will improve while on your tamoxibreak.
Helena - Absolutely gorgeous (and you look very good too!!)
Kari, Rachel and others Hi!!!
Hope you are all enjoying your weekend.
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Quick post - friends coming over for barby to watch football grand final ...so much to do...
kmmd - I am the tamoxifen "vacation" queen. Had the most debilitating depression, dry eyes - so bad I would get sty's (sp?) and tried 3 kinds of eye drops but the depression/anxiety was a killer. I just stopped cold one day then told Onc. He was happy for me to take a month, I took 2 weeks because I got so scared (no chemo) and haven't looked back since. I took it at a different time of my cycle, when I was feeling relaxed and sane (instead of when my periods was due which I did the first time). I also have split my dosage - 10mg in morning and 10mg at nite. 6.5 months and alls well. Oh, and I am also an Exensive Metaboliser without all the side fx (still don't understand that!!). Good luck.
Well done Kari!
Enjoy your weekend everyone.
Go the Eels!!
big hugs
Helena
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my560sel, I'm taking baby aspirin as well as Tamoxifen, but my cardiologist started me on the baby aspirin a year and a half ago and no one's said to stop, so I'm still taking it. Now that you've reminded me that blood clots are one of the possible SEs, that's one more good reason for me to continue taking it.
(I take the baby aspirin in the a.m. with most of my other 'maintenance' meds, but take Tamoxifen in the evening).
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helena, please exlain the metabolizer comment (extensive metabolizer). I have heard others mention something related to metabolizing Tamoxifen -- does Dr. run tests to determine this?
~Ainm, I take supplements/vitamins with my Tamoxifen. My oncologist didn't mention anything about it either way....but then again, he should have noticed Trazodone on my med list and told me to stop it while on Tamoxifen, and didn't.
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I wrote up a post to explain stuff but see its been aptly taken care of by the regular riders, or train-ees, whatever we are...
baby aspirin hmmmm, my ONC didn't suggest it. Sounds like a good idea tho. Question for those who were told to take the baby aspirin: Did you have circulatory issues already? Family history of heart disease? Some kind of risk factor?
I'm jealous of all the women who have men in their lives- and more importantly in their beds. I can't blame my lack of sex on SFBC or Tamox. Still have the mojo so far, and the never-ending period that I had last months pre tamox.
PattyB part deux- there is a test that may determine if you are getting the benefit from Tamoxifen, its called CYP2D6. There's a range of conclusions about this test, some ONCs wont even Rx Tamox if you don't take the test (j414) and my ONC feels the test is pointless because the results are inconclusive. Generally accepted though that if you take Tamox and get some HF from it (Hot Flashes) its working. Its especially helpful if you are taking Tamox and are not getting SEs and are worried that its not working. There is even a saliva test version:
http://store.genelex.com/index.php?main_page=product_info&cPath=1_2&products_id=53
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Helena, thank you, that is so encouraging, I really want to get back on it and make it work, I'm with you, really scared to be off of it. Trying to remember those studies that showed benefit for years after women stopped at the 5 yr mark, maybe the benefit will tide me over during the vacation time here. Plus, although sorry you went through it, nice to know someone else has been through the dry eye thing and I'm not nuts. Thanks again
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Rachel, my cardiolgist told me to take baby aspirin after I had a 'heart incident' (thought I was having heart attack) last year and went to ER. Long story short, they discovered a heart condition called LBBB (Left Bundle Branch Block) and cardiologist has been treating more or less as if I have a heart condition since then.
And - thanks for the explanation about metabolizing Tamox! that is great info and something I didn't know about. I may not know if it's working since I was having hot flashes before I started the Tamox.
~~don't be too jealous. Although I have a man in my life, as of late he hasn't been in my bed all that much. Mostly that's because of SFBC.
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