Bottle o Tamoxifen
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There are enough of us we can be the Pips!
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Donna what does your onc say about what your odds are if you go off the meds? mine said they only decrease my chances of reoccurence (and I think this is a guess) by about 3% I think. Quality of life is more iimportant plus I plan to be deligent in testing yearly. There is no way I can stand the SE's I want my life back!! Best wishes to you, it's a tough decision!
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Chevy, certainly like your idea of a baileys and coffee. Just took my first sip. Mmmmmm!
MHP, I can honestly say "I HATE VEGGIES". If I eat anymore carrots I'll turn into one.
Jo, thanks for the coffee break reminder.
My train stops every hour on the hour.
Janetin, definitely catching the midnight train to Georgia with you.
Did anyone get bone/joint aches after chemo? Can't blame them on Tamox yet.
Ladies see you at the next stop
)))))))Jules
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Hi all,
I'm curious whether any of you have had spotting on Tamoxifen and if so what your oncologist did about it. I have had extremely regular periods my entire life and have NEVER had spotting in between periods - until today. It's not that bad, but I know my oncologist told me to watch out for any changes. I have an appointment scheduled with him in a couple weeks, so I'll see what he says then about it. I do NOT want to have to quit this medicine, because I'm pre-menopausal.
Any input would be appreciated!
Karen
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Karen - I am 3 years postmenopausal so I can't answer your specific question.
It sounds like you need to make a call to your onc and let him know what is going on instead of waiting until your next appt. He would most likely want to know this information sooner rather than later and he may want to see you sooner.
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Karen
You might consider about talking to whoever does your pap exams. The woman I see seems much more knowledgeable than my onc about females issues, even when cancer is involved. My onc is a man so maybe the communications is just "different" with him. I was told that the periods from #$&% are the ones to be suspicious of, but of course you still want to speak to a doctor.
I was told if I have any more bleeding, I need to come in for a endometrial bx but my situation is different. My periods were infrequent for about 9 months prior to taking T so both doctors suspect that I'm probably finished with periods (or close to it) now that I'm taking T. I was told not to freak out if I do have a period because it is usually nothing, they just like to keep a closer eye on things when the patient is taking T.
How long have you been taking T?
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robynkk, those are exactly some of the side effects that I am afraid of....and the possible blood clotting of course. I had an extreme reaction to Zoloft (moved to another state and was feeling down) about 7 yrs ago, was only on it for less then a week. I had immediate extreme panic and anxiety attacks, never had before. Then started having hot flashes and night waking anxiety attacks. It was beyond awful. It created issues with my brain chemistry that caused me years of problems. Finally have gotten over them, thank goodness.(Believe me, I've wondered since DX if that adrenaline rush nightly, cortisol, all that, had anything to do with this breast cancer that I now have ?? Who knows?)
So, now here I am getting ready to take something else with potentially the same SE. I think I am very sensative to anything that affects brain chemistry, hormones....and found out I am an extensive metabolizer for T, so I've wondered what that might mean in terms of all that.
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and Janet, I'll take a ticket for that midnight train to Ga also.
Anyone seen the movie with Julia Roberts, Eat, Pray, Love I think it's called? That's what I need, to just get away from it all like she did. Sure would be nice to be able to. 0 -
Hey - I'm just catching up after a long Christmas.....nice to have my place quiet again.
Anyway, just a comment or two:
robynkk, I think your recurrance stats for Tamox are a lot more than 3%. You'll have to check with the onc. but I had a very complete stat record shown to me before I started Chemo. The Tamoxifen over the next ? years was shown to be just as important and equally effective as the Chemo. Maybe more so. Believe I'd check it out. You must be really sensitive to medicine, maybe you'd need to spread it out over the day in small amounts untill your body adjusts. Sorry to hear you had such a difficult time.
Also, I noticed many of you are afraid of taking Effexor for the hot flashes. Just one person's experience here but I have had no problem with it. I started on 37.5 mg in the am, then after a week of taking it - increased to 75mg. I was on that for several weeks. Noticed I was having trouble sleeping and wondered if I really needed the 75 - then I started tapering back down to 37.5 mg again. When I did this I broke it up into quarters and over a week or a week and a half I cut back until I reached 37.5 mg again. I had no problem. I do think as with all SSRI's you have to taper off, not just stop altogether - cold turkey. If you do this you should have no problem. The effexor has really help with the hot flashes, so manageable now.
Anyway, just thot I'd give a good report on these two drugs and how they're effecting one more BC sister.
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ECT - Good to hear you are having good results with the Effexor. What a lot of people don't know is that Effexor is an anti depressant and is also used to control hot flashes. This type of drug does have to be tapered off when you no longer need it.It is one of the few on the market that work well with Tamox and does not lower its effectiveness. I worked with these types of medications when I was in the Air Force - I worked in psychiatry for 16 years and am familiar with the chemical make up of this drug.
Thanks for sharing your experience. If I need it, I will ask the onc for it.
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Hey jo1955 - good comment, thanks for serving in the Air Force - I really appreciate all those who put their life on the line for the home-team be it as a pilot or in psychiatry as a support. Thx!
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My thanks too Jo. All who serve in the military deserve our thanks, but the women who serve are so often forgotten.
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I am an Air Force brat. My dad was in the Air Force for 28 years, DH in the Air Force for 20 years and I served 20 years. I retired in 1996 and the Air Force was still pretty much a "boys club". The women have made great strides in being recognized and that we do contribute alot to the cause.
Your welcome - I was proud to serve my country.
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Called my onc's office today and have an appt for next Wed to see him. That is when I will get my RX for Tamox. Guess I better get ready to board the train. We will all go for a ride.
Here is the engineer
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Oh Good! I love him! Is that actually Beanus? Ha! Happy New Years almost gals! xoxoxoxo
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Jo that is so cute!
It's not as bad as you think for most women the se's are minimal. My onc says takes 6-8 months for your body to adjust so any se's may be temporary.
I hope it's a smooth ride for ya!
Di
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That is a very cute bear. However, it is the only cute thing that I can find about Tami. as it is prescribed for me to prevent "possible recurrence" in the opposite breast rather than survival. The minor SE's sound a lot less than "minor." My own hormones are scary enough. I am in the middle of my second (51) really hard core period since my surgery and cold turkey off the pill in September. I turned into a really moody crampy awful person about a week ago and finally have it-(crampy, but not as mean and nasty as earlier.) I'm afraid of the QOL issues associated with this drug. I also don't consider a hysterectomy a minor procedure and uterine and ovarian fibroids and benign tumors run in the family (not cancer)... I also have read that for DCIS patients, recurrence after Tami. is more likely to come back as an aggressive invasive cancer. I am really in a quandry. I am reading alot from the Tamoxifen threads and especially yours, Jo as you seem honest and straightforward about positives and negatives- radiation and meds. I wish all of you well. This is not a critique of any one else. This is simple a really big thanks for posting honestly to all who do. I am reading much more than I post. ( I also read scholarly research.) My medical team is nice, but does not deviate from "standard of care."
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Chevyboy - That is Beanius - isn't she just too cute?
clare2 - I have also read about the DCIS thing. Pretty scary. My reasoning for taking the Tamox is like yours - to prevent recurrence. I was sooo strong in the ER+/PR+ (100% favorable) that I need for this med to work. I don't want BC in the other breast and with the 100%, according to my onc, that puts me at high risk. Did not like to hear that and I know he was not trying to scare me into taking it. He just does not pull any punches and I really appreciate that.
I have a history of uterine fibroids - periods used to be 8 days of very heavy bleeding and continuous spotting all month. Seemed like it never stopped. So I know what the crappy periods can be like.
I was talked into going back on birth control to even everything out. I had not been on birth control for many years - did not need it - had a ectopic pregnancy at 23 and give not conceive. Did the birth control for a number of years, my gyn put me through menopause and then the Prempro for 2 1/2 years. What a roller coaster ride wihen I had to quit the Prempro. Just have alot of estrogen in my body and it tends to overproduce as it is. We did not know that until it was too late and here I am with BC. Now, I have to watch the other side very carefully as the little cancer buggers could already be floating around in there. Follow up mammo to come soon.
We tend to talk about the negatives - we would not be normal if we didn't. We do the "what if this, what if that" thing. When you are not feeling good and treatment is not going well it is hard to focus on the positives. There are a few moments and they do get to be more when we can see the positives and focus on those and move forward.
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I wanted to chime in here about taking effexir. I started taking it shortly after starting the tamox and it has definitely helped with the hot flashes. The only other s/e I get is cramps in my toes. My sister took it for five years and cramping in her calves was her second biggest complaint over hot flashes. She is the one that told me to try the effexir, along with One a Day menopause and bee's pollen. I am not positive which has helped so much with the hot flashes but mine are now few and far between while i was previously having them every day and many many night sweats. I was sweating so bad in my sleep that I would wake up with my pillow, bed and pj's saturated. Not fun.
I got my period yesterday after not having it since early October. Darn, I thought it was gone forever, how disillusioned I was! I went as far as giving my personal products to my dd. I can be so dumb sometimes.
That's it .... wishing all you girls all the best in your treatments. And I also appreciate those of you who have selflessly served our great USA in the military and those who have loved ones who have served.
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Hey gang, for what it's worth, on day 3 of decaf and green tea only. I've gone from 4-5 flashes a day to 1 and change. I'll report back on whether this sticks, but it's worth letting everyone know about if there is a true relationship.
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eastcoastgirl,
What did your oncologist say was the benefit, % wise of you taking the tamoxifen? At this point I'm not taking any of it and going to start living healthy, getting regular check ups and just want my life back to normal. My brain is going crazy, racing thoughts, can't sit still, DEEP depression, it's so weird my family doesn't know how to act I've NEVER been like this and my oncologist says it's ALL tamoxifen. I was on Paxil years ago for anxiety and weaned myself off about 3 years ago so I don't want to get back on it but at this point I'll take anything to subside these SE till the tamox is out of my body. Good luck and best wishes to you, let me know what you decide to do!! Robyn
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Jo, I see my onc on Tues for my RX for Tamox and to go over labs. We may be starting the same time. I have also read the study about the Tamoxifen actually causing more aggresive cancer. Scary but who knows what it all means really?
Just awful having to be faced with these kinds of decisions/"options".
I am 89% ER pos and 95% PR pos.....I wonder what it means that my PR is MORE positive then the ER? Will the T still be as helpful? What about that higher percentage with the PR? Does that mean I didn't have overactive estrogen but progesterone, or both? So confusing.
Wow, robynkk, you sound similiar to how I reacted to Zoloft. I felt for years that the drug ruined me. I was so messed up from it. It was a nightmare what I went through just putting that little blue pill into my mouth... so I totally understand where you are coming from! It took me years to fully recover because there was no way I was going to then take another pill to try and "fix" what should't of happened in the first place! So, I healed myself. I said I would NEVER take anything that could have that kind of effect on my brain chemistry again. Now here I am with no choice really. I know I will not take another drug like Effexor to counteract side effects from Tamox if I have them. And thats just me, I know it works for others just as Zoloft does. But for me, I would never, ever in a million years take that chance, not after what I went through. I had been wondering if the Tamox could have that kind of effect and was a bit worried about that. Now it seems it can and does.
So sorry you had that happen. I hope you feel better and back to normal very soon. And again, i totally understand. I think anytime we mess with hormones, brain chemistry it can go really wrong. There's a reason all of that needs to be in balance.
Oh and my doctor said my risk of recurrence is something like 6-7% taking Tamoxifen and goes to about 12-15% without (but that's if you believe the "50%" increase risk study which I think is skewed). Which she says is too high of a risk in her opinion because of my age. I clearly don't want to take (but do want to take because I don't want the cancer to return...dbl edge sword) and should of probably already been on it. But I've gone to each appt with more and more questions and asked for more and more testing(blood clots, metabolizng, etc). I think she really wants me on it and got a bit frustrated with me last visit because I was sorta of back peddling. She said firmly to me, if your cancer comes back, we CAN'T cure it, only treat it! You need to act now and do what you can to PREVENT it from coming back. Ok, got the message. So guess it's time to at least give it a try.
Do you know if you are an extensive metabolizer? I wonder how that may or may not come into play with the SE. I DO know that I am sensative to medications. I wonder about that with the Zoloft reaction I had also. And, when I had a recent surgery after the BMX to remove some skin that was not healing properly, the anesthesiologist said to me after, "wow, you really are a lightweight, I though maybe half cocktail for you and didn't even take that much!!"
So, I really wonder ????0 -
Also just want to note that the increased risk without Tamox is quoted at 50% but per the study I don't believe it to be that. It's more like 3%.
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EastCoastGirl - I was 100% on both ER & PR - overactive on both. I have read about the T causing more aggressive cancers but my onc has me convinced that the T is supposed to block the estrogen and stop the BC from coming back. What is just as scary is that T can cause endometrial cancer. What to do? What to do?
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Newbie to this thread - I just started Tami about 2 weeks ago. When I started it I was on 200mg Sertaline (generic Zoloft). Then I found out that the sertaline decreases the effectiveness of the Tami, I have severe anxiety issues and it took two years to get it under control with Sertaline. Now I am only taking 1/2 of sertaline dose until I see psych 1/11. Panic attacks haven't returned yet, but irratability (sp) is maxed out and DH and I are at each other's throats. Really need to decrease some stress or something. Trusting that God knows how much we can handle, because I'm thinking we're getting close to the edge.
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EastCoastGirl,
I totally understand your frustration but with what, 6% decrease in the chance of reoccurence WITH tamox verses without, for me personally since the SE are so severe it's not worth it. I was Stage 2 but didn't even have to go on chemo because they were confident they got it and mine is not genetic. I found the Natural Girls thread and am going to try that route, even though Paxil and Xanas AREN'T natural
at this point I have to take something to get me thru the day. What was weird is that I took the tamoxifen for ONE MONTH without ONE side effect, nothing, then one day they just hit me like a mac truck. My best wishes and thoughts are with you!0 -
I just started Tamox 1 week ago and have had no side effects (I don't think), but maybe some ovary pain in my left lower back. But no hot flashes, maybe a few leg cramps, but I get those anyways. So my question is to you ladies who have been on it for awhile, if SE's are going to happen, do they usually start right when you begin taking the drug, or can they just show up at any time? I'm feeling quite optimistic at the moment . . .
I've been on an anti-depressant for a couple of years. Started on Celexa and then went to Wellbutrin. Now I found out from hospital pharmacist last week that Wellbutrin reduces efficacy of Tamox so have now been switched to Effexor, which I will begin tomorrow. I'm just hoping that it all works well together, because I've had enough meltdowns in the last 3 years that I finally know I can't do without the anti-depressant. And that was before BC - - you can only imagine what it's like now. Is anybody who is taking both Effexor and Tamox feeling positive about the combination and how it's working for you?
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My SE started EXACTLY one month after I started taking it. I literally had NONE before that time, no hot flashes, nothing then BAM!
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Morning gals....I'm just sorry about all of the side effects some of you girls are having! It is so true, in that we are all different, and some may have an awful time, but then others like me try & work through minimal side effects, & now, after almost a year, I don't notice anything.
And EastCoastGirl.....What your Doctor told you is just being honest....So far, when we do get breast cancer, they can't "cure" it.....they just have to remove it....and by all that blah-blah about Mammograms, & self exams, that's what WE can do to help. I know the thought is always in our heads, about "oh man, maybe it's still there somewhere, & we just don't know." But with our determination and our teams knowledge, we CAN have a big impact on cancer not coming back again. We do what we have to do....I know a lot of gals that just can't go through the profound side effects of not only these pills, but the chemo as well.
And then some, like my Sister in law, are just too afraid to take ANYthing. So she is still doing the Holistic thing, & doing well, so far! No-one can say for sure WHAT will keep us from getting cancer again...But I'm taking the Tamoxifen because I want to "believe" that it does help...and I haven't had the trouble that a lot of you have had. I would never tell anyone to just "hang in there" because I don't know what you are going through...And I really feel bad, when I hear you gals trying to get over your fear of cancer, AND the SE's of Tamoxifen.....But HANG IN THERE, trying to do what is right for you! xoxoxoxoxo
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Pennythoughts, I definitely have some lower back pain. I'm off to the gym again this morning to get back into my daily routine. I also feel a little depressed, but hard to say if that's the drug or post-holiday blues.
Regarding percentages, considering 5% is clinically significant when thinking about SEs, I think that sounds quite large when considering life threatening recurrences. For me, 8% chance of recurrence was livable. 16% without Tamox, forget it. I don't know what I will do if the SEs become severe.
Also to throw in there, I've been trained well on these boards. There are all kinds of recurrences, and even new primaries. Tamox can't save us from all of them, but they are not all deadly. A recurrence that has gone to the entire body is no curable. I feel like doctors sometimes use the deadly kind to drive the point home, and while it's well taken, it's not the entire truth.
My experience with people who have refused treatment of one kind or another is they've had their cancer come back consistently. However, I also have one gal who did it all, and still suffered through twice. I also know stories about lots of friends of friends who are at the 20 year mark. Scientific? Not exactly. But we base our decisions to some extent on our environment as well.
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