Bottle o Tamoxifen
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Ladies...
My Onc. has not ever mentioned the test that checks how you metabolize the tamox. Forget what you call it..Is this ok that I have not been tested?...Do I have to be on it for a while first...See him again August...jules
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Hi Jules,
I was never tested either since I am premeno. There are no other rx options for us so we are put on tamox. I know it's working, I can tell from all the hot flashes!
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Thanks Makraz...jules
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Was just sitting here wondering.....
What would I be doing right now if I didn't have ya'll on my side....probably crying about having to take tamox. and thinking I got every SE there is..My mind would be going crazy without this site and YOU!!! No one understands, not the way YOU do!! And we don't want to talk about BC daily to our family..esp. our children...So here I am, where I get my positive reinforcement!!! ...
Love to all........jules
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jules- not even the oncologists know how Tamoxifen works against breast cancer- or for that matter, radiation. Tamoxifen, like Zometa, was not intended to fight breast cancer, they were both developed to fight bone diseases and like... surprise... happened that less breast cancer happened. This is part of the IOS of cancer (Issues of Suckiness, I just learned that phrase here on another thread). They don't know so much.
On the comparative pain yes kmmd said it well. Also, it's pretty amazing you feel that you got off easy "just" having the MX. I feel I got off easy because I got to keep "the girls" and didn't have to do chemo, just RADs + lumpectomy. (Oncotype 17). Then everyone on this thread taking Tamoxifen- even with psycho oncologists bleating out bizarre threats like "Tamoxifen is all that's standing between you and recurrence" (really, where's a 2 x4 when you need one?)- are we all getting it "easier" than our triple neg sisters who would reap no benefit from Tamoxifen or AIs, any hormone therapy?
I have read enough of our Stage IV sisters' stories to know that many of them started at Stage I- and one of the Stage IV sisters is NEC (No Evidence of Cancer) just from taking Tamoxifen. This disease is hell and makes gamblers of us all. Our slim percentages are no guarantee. Then again, I have several friends who "beat" various cancers at Stage III (like it was more than 10 years ago), and the world's last oldest woman, Jean Calmet, in France died at 120 years old, and she had cancer too. (Cancer didn't kill her, and I can't find otu which cancer she had)
On the CYMD (whatever letters, at this point I am just making them up) test that hopes to show who is metabolizing the Tamoxifen, it's also not conclusive per se. It can say you are not when you are and vice versa. It's really for people who have some other strong indication that something isn't working how it should be. Again, since they don't know how Tamoxifen works against cancer in the first place...
But what they do have is 30 years of experience with Tamoxifen lowering recurrence rates in hormone positive breast cancers, evidence that if you are having side effects like hot flashes or joint pain that the recurrence rate is even lower- and huge studies that show that the side effects women have from taking Tamoxifen vs placebo have the same "side effects" except for the hot flashes and vaginal discharge.
And... we have each other.
Man I have no idea what I would do without this board. 0 -
Rachel, Good info. that's why I am here..jules
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OMG ladies ...... don't know if you had read any of my posts but I have never had a hot flash on tamoxifen, just bad anxiety and depression (all up about 4 months with a break in between) and actually get chills....WELL I have just got my results back today from my CYP2D6 test to see if I metabolise tamoxifen and.....I am an EXTENSIVE METABOLISER - I will get the most benefit from taking it. I can't believe it!!! It just goes to show that you don't need to worry about any of the side effects you get or do not get because it is all irrelevant as to whether the drugs are working or not. It just means it is crappy if you get lots of them.
Couldn't wait to get home and post to you all as we are the only ones who would ever understand all this.
big big hugs
Helena
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Helena -That's great news for you. Pity it doesn't make it any easier to take the tablet every night. Will be sending positive thoughts to you on Monday for your surgery.
To everyone on this train I agree with the previous posts in saying that I would not know what to do without you all. My family getted tired of talking about all of this but everyday I have new questions and concerns (or even old recurring ones) . I cannot blame them though they just want to go back to how it was before. These posts make me laugh, cry , smile ,cringe etc and it feels like sitting down with good friends for chat. So Thank You all....Thank God he sent you all to me.
Big Hugs
Viv
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Hi Ladies, May I join? I'm just finishing up Rads and will have to start the tamoxifen right afterwards. My Onc wanted me to give me the prescription right after chemotherapy, saying not to start it until after Rads. I had this funny reaction and said, "No, not yet." So, she sent it to the pharmacy as a "fill later" Rx. Last Rads 6/25, so I told the pharmacy to fill it today. Ugh. My mother took it for five years, as has my SIL, both tolerated it pretty well. Hopefully I will as well. Interesting post Rachel . Radiating for another week.
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Welcome Princess! Congrats on almost finishing your rads. It will be over before you know it. I'm glad to hear your family members tolerated tamox well. Hopefully it will be easy for you too.
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Hi Princess - welcome aboard. All the best for your last rads next week - yeeaahhh!
You have good role models with your mum and SIL, it will all go well for you with your Tamoxifen, if there are any hiccups just come here, this place is amazing.
soft hugs
Helena
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Just on another totally unrelated matter - why am I here at 9.30pm on a Friday nite you may ask..no of course you won't, sh#@t I've been here at 4am ... anyway is there a way to put the last post first in these forums? 101 pages ... unbelievable.
good nite everyone
soft hugs
Helena
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Helena
I have this topic as a favourite so when I log on it goes straight to the last post..Hope this helps.
Going to bed now as home renovations start tomorrow.
Sleep well,
Hugs
Viv
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Skipped the Zofran this morning b/c I feel GREAT!!!! Guess what??? My mind told me...I am not going to have SE's..isn't that great!! I believe it too!!!....jules
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Great news Marlanet. Clean Mammo.
Jules I am glad you found something to help you, I have not had any nausea, just a decrease in appetite, but no weight loss.
As for the libido, I had an increase, but have been too tired to act on it, more often. It seems like now I am always tired. Not sure if it is from the tamoxifen or just recovering form surgery and rads. I have tired to keep everything as normal as possible for the sake of the kids.
I go back to my onc for a check up, she will be doing blood work and I am not sure what else since this will be my first sine I started tamoxifen.
I hope eveyone has a great day!!!
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Mary::
I do the same with my kids..don't want them to hear too much..esp. my son in Phoenix..b/c he is not here to see that I am well.. and he needs to keep that mental picture of me..My daughter who is 19 saw my blog on myspace about the BRACA testing..she then posted a blog on her's that was soo sad...I will never make that mistake again.(turned out BRACA- !!!) This is why both my Facebook and myspace are CANCER FREE!!! All my kids are on there.
The ladies on here are pretty much the only ones that get to here thoughts on all this..Thank God for this site and this thread!!
Without ya'll...I would just stay in pieces!! You can't imagine how important all of you are to me.
Lets all have a SE free day, everyone needs a break!!! Go enjoy your wonderful day!
....jules
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JULES4EVR39
I am also on Facebook... will look you up!!
hugs
Harley
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Harley,
She's on my friends list if that makes it easier.
Linda
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OMG!!!! Having so much fun on here....am I aloud to have fun..with such a serious disease??...yes...we all are aloud to have a good time...you all saved me!!!!! DH even getting a little jelous now!!!!...........love to all.....jules
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Wow, kmmd, you hit a home run!!
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Just opened the mail and there is a 9pg. copy of info. on the PET scan, sent to me from, my onc.'s nurse. Nothing else with it....I guess my onc. will make an appt. or what ?
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LeggyJ - have you had a PET scan or is it just info about the scan?
Last I saw was that you had the CYP2D6 blood test done - how did it go?
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Gonna go friend JULES4EVR39- and Linda, if I can find you on her friends list, I will try to friend you too. If you see me, please try?
(rachel in the name)
Mary- please.... please please please... have some sex... for me? :::banging head on keyboard::::
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I am trying too - proteins, veggies....gained about 15 during chemo; another 5 since then. i am exercising and holding steady, but need to lose at least the 15. cant seem to budge. Am on tamoxifen and am not complaining if it keeps cancer at bay.....today I heard a friend at work had a recurrence, I have been preoocupied all evening. family says, come watch a movie, so I am going there now......
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HelenaJ,I haven't heard anything on the CYP test, they said it would take about 7 working days, and my onc. never even mentioned the PET scan, when I saw him 2wks ago. It was just info. on the scan, and the nurses business card. I guess if they want me to take the test, they will make an appt., until then...I don't think I'll call them.
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LeggyJ - well that's weird isn't it. They will undoubtedly call you with the results from the CYP test, just ask about the PET stuff then. In the meantime a little light reading before bed???????
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Rachel, got lucky lastnight!!!! Jules, I do have cancer on myspace and facebook account, but only because my kids are too young to be on those sites. Also computer in the livingroom so I can watch them. I think the best thing for them is that last year their music teacher had a double mast, and was back this year, so they realize that mommy is going to be ok.
However today at my sons therapy appt he did mention that he worries about me, so I will have to give him piece of mind. ( he has adhd and sees a counselor and a pyschiatrist)
Rain rain go away, it is summer vac!!!! the kids want to play and I want to relax at the park!
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It's kool with me whatever anyone posts on thier site...it's just me...I am the one that I don't want keeping the subject up, on there...like I said, my kids are Friends on there and they are from 19 - 26..so they are quite aware of my health..I did tell them about the tamox...just in case I flipped out on them..lol..but otherwise..it's life as usual when they are around. ....I have enjoyed everyone that has added me!!...jules
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I think their preparing me, the one thing that pops out in the info. packet, is that the PET scan is usually only given, when the doctor suspects mets. But since I can't do chemo. or rads. again, what's the point of scans, "basically,that's it", was his comment. I told him, my radiologist said scans, weren't conclusive and would only scare me. He also said, when the pain in your back, gets to the point your grabbing for the vicoden, on a daily basis, then come in. Ya think there trying to tell me something! Oh well, I'm going to the movies, so I can get this off my mind, for a while.
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kmmd: I may be a litlle late for the train, but RIGHT ON GIRL!
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