Bottle o Tamoxifen
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Hi Ladies, I have posted on the Effexor site about my SE with Tamoxifen. I have been taking Tamoxifen for 7 months. The hot flashes and moodiness have been relieved by the 50 mg Effexor(not the XR) - I take at night. I have reading some on this site and have not seen any women who have experienced very annoying itching or irritation around the vagina. I notice it mainly at night. It occurs mainly during the time of the month when I should have a period. I have not had a period in 4 months just spotting. I did bring it up to my onco because I have read this could be a SE of Tamoxifen. She didnt seem to be too concerned and said I should let my gyno know at my next visit which is not for 5 more weeks. Has anyone else experienced this and if so what can be done for relief?
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Well one night of sleep is all I got. I went right back to ridingn the train and working stoking the fire in the engine the past few nights. Up and then toss and turn and toss and turn. Last night work up DH and he gave up and got out of bed finally. Maybe tonight.
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Hey all,
Ive been on Tamox Since late Dec 09. It hasnt been too bad so far as SE's goes. I can live with a bit of discharge, the odd headache. The hot flashes seemed to have started waning a couple of months ago and I do occasionally have a VERY short fuse. I also enjoy food a little more than Id like and as such, Im having a bit of a battle losing weight. I am getting there slowly, so thats better than a slap in the face with a wet fish.
One thing I've been wondering about .... Im having surgery on Tues next week for a Prophy Mast. and I've stopped Tamox (11 days B4 surgery 3 day after), because of the risk of clots. This has been a VERY difficult decision to make, but I've been trying to be really pro-active with this scumbag disease we're all facing and Ive been reading the info on this thread on page 256, or more specifically around May 12th posts, about whether you should stop for surgery or not. When I mentioned to my BS about doing this I was expecting him to say not to worry about it, but he seemed happy for me to do this, as well as another noted member of my onc team.
A couple of questions...
Is a Mast. considered minor surgery or major?
How long is it before Tamox gives you no protection/benefit? If it "stays in the system" for 7 -14 days would I be correct in surmising that this is the same as protecting against recurrence?
Are DVT or clots hereditory? I know theres only a small risk of clots but if a parent had had these, should I be more concerned?
Thanks for any input.
Musical
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YramAL .....Hi Kiddo....I have had diarrhea now for about a month....But if I take 1 Immodium AD after breakfast, & then 2 before I go to bed, it is okay! I have been on Tamoxifen since January, & that is about the only SE that is a problem....The rest of them usually go away, or get better after awhile.
I just consider myself so lucky, that I can take Tamoxifen, instead of the Femara or Arimidex. I know some gals do alright, but they have major joint problems with both of those! And some of it is permanent. Tamoxifen actually is good for your bones....Instead of blocking your estrogen, like the other 2 do, Tamoxifen blocks any estrogen from feeding your cancer cells that you might have frolicking around in there!
Okay, I found this...http://www.cancersupportivecare.com/tamoxifen.html .....just copy & paste
I also read that it causes constipation, as one of the SE's....Ha! Everyone is different though.
Musical....you have a lot on your plate right now, with worry....if you mean the part about the Tamoxifen causing clots sometimes, that is just another SE to think about...But my Oncologist told me, that "If all those hormones you were taking with The Pill, & then Estrogen didn't give you one, you probably won't get one now".... Also, Musical....I would say that yes, a mastectomy IS major surgery! I thought MY surgery was major, & it was just a Lumpectomy!
I wanted to throw something like a cast-iron skillet at my DH once, when he mentioned, his "friends wife had a "procedure" & that she was just fine!" Like, "what's the big deal?" I just steamed! A LUMPECTOMY IS MORE THAN JUST A PROCEDURE! A WART ON YOUR BUTT IS A "PROCEDURE"....Oh well, didn't mean to yell, Ha! But breast cancer, & whatEVER we do to get rid of it, is pretty major to me! And sometimes the SE's or the treatments feel even worse!
I take a baby aspirin every morning with the T pill....Along with Glucosamine, Vit D, Fish oil with omega 3, Calcium, & a Multi-vitamin. I don't FEEL any different, but hopefully they are all doing their job! I also take a Melatonin at night, because I had so much trouble dreaming or even just staying asleep!
Okay gals....just hang in there! Good Morning to you all! xoxoxoxoxo
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Hey chevyboy, thanks for your response!
and it looks like youve just not long got outta bed....me, Im just about to "hit the sack" as we say here in NZ and if I dont get on with it I'll have yet another short 3 or 4 hour sleep. Im not a good sleeper anywayz, so Im reticent to blame that one on Tamox. Ha ha ha had to laugh about the skillett and the "wart on your butt" . : ))))))). Yeah I guess it is considered major surgery, but I tend to think of something "internal" like a hysterectomy or heart or something as more major. This wont involve lymphnodes so that should be quite a bit better than my 1st Mast. Ive heard some medical people say ANY surgery is major, and still others play things down like they minimize it AS IF you should be in denial or something. The latter catagory I have no patience for at all.
Have a great day.
Musical
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Hey Musical, I think the MX would be considered major by just about anybody. Not having nodes out is good though. As for not taking the tamox for a couple weeks - there seems to be varying advice from docs as to stopping or not. Your family history of blood clots does count, but if you had a strong family history of blood clots they might have thought twice about putting you on the tamox in the first place. Stopping for 2 wks is probably pretty minor in the bigger scheme of things. The tamox itself has a 5-7 day half life in the blood, and one of its major metabolites has a 14 day half life. So after 11 days, your tamox will be down to 25% of that it had been (down half in the first ~5 days, then down another half in the 2nd 5 days), and the metabolite will be down about half. So you won't be at 0. You're taking this drug 5 years because its the long-term action that gives the most effect, so being off for 2 wks is a pretty small period, plus your levels won't go to 0. Its not like taking 2 wks out of an 8 wk chemo routine. I hope all that makes sense.
Sorry bcincolo that your sleep-train didn't keep on keeping on....hopefully it'll come around again soon! Take care -
CS
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Hey cs7777 I was hoping you might chime in. Thanks for your info, and I do get the general idea of what youre saying but I only THINK I get it about your figures, so feel free to expand your explanation for dummies like me
. My mum has had DVT, but I dont know if that means its passed to me. My mums sister has also had clots. It just freaks me out at the thought of getting a clot on the OT. Anyway if you do, can they easily deal with it? Sometimes Im tempted to start my tamox again before surgery, even though Ive only got 3 days to go now....and its been a tough decision to stop it and keep it up.. As soon as Im outta that bed Ill be up and doing (but gently of course) and I'll be stretching those calves as soon as I open my eyes. It just bothers me that if I get a recurrence then I'll always wonder if it was becasue I stopped Tamox. Ive been told Im on Tamox for 2 years then swapping to Arimidex. I had a blood test to determine if I was postmenap. or not and apparently I was, but then I got a period....go figure....so they put me on Tamox because they said the AIs dont work unless youre post menap. I wonder why they dont leave you on Tamox and certainly if it does your bones good, unlike the AI's?
Musical
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Hi Musical,
Let's see if I can explain better. When I say tamoxifen has a half-life in the blood of 5 days, that means that it takes about 5 days for half of whatever is in the blood to be broken down into something else. So after 5 days of no pills, you're down by 50%, and after another 5 days you'll be down by half of that half, which takes you to 25% of what your blood level was before stopping. Now, tamoxifen breaks down into a number of metabolites, which also have their own lifetime in the blood. One of the major ones that has activity agst breast cancer cells (can't recall the name) has a half-life of about 14 days. So , after 14 days it would be down about half from the time you took your last pill. I think you said you'd be off pills for 11 days, so that metabolite won't even go down by half by the time you start up again. So my point of all that is even if you're off for 11 days you will still have active tamoxifen in your system that will still be acting agst any bit of BC left, just at a lower level for those 2 wks.
As for the blood clots, its interesting that you have family history of it. Have you told that to your docs? I'm unsure of whether there is a strong family connection or weak (e.g., if your mom had them, how likely are you to???) but I'm pretty sure there's some. If your docs never asked about your family history on the blood clots you should probably tell them. All that said, remember that the likelihood of blood clots is very low to start with, and on tamoxifen its higher but still really low. Plus by lowering the tamox in your blood before your surg you should be decreasing the likely effect tamox could have at the time of surg. In other words, it seems like you're doing all the right things to find a balance between treating the BC (the tamox) and risk of blood clots. You're obviously well informed to keep moving, don't be sedentary etc, so I expect you'll be fine!
Regarding the arimidex vs tamox...The reason some docs will recommend switching you to an AI once youre postmenopausal is because its slightly better at reducing recurrances than tamox (although the overall survival stats are the same with both). But yes, the effect on bone is the opposite - tamox helps build bone while AIs cause a little more depletion. This is because tamox actually acts like estrogen in bone which stimulates build up. In comparison, AIs reduce the body's production of estrogen to near 0 (assuming one is postmenopausal) so your bones are being deprived of estrogen. But, as you said, the AIs don't work for premenopausal women if that's the only thing given. Some premenopausal women have ovarian suppression or ovarian removal and then take an AI. By suppressing or removing the ovaries, they eliminate the estrogen the ovaries produce, just like menopause does. Then the AI suppresses the estrogen produced by the adrenals and elsewhere. So together they reduce the estrogen in the body very low, thereby starving any BC of estrogen. Yes it starves all the other tissues of estrogen too, hence side effects like increased bone loss.
They could actually leave you on tamoxifen. It's the small reduction in recurrances that is then not attained. In addition, the AIs have a different side effect profile which doesn't include increase in blood clots and uterine cancer, so some docs like that aspect too. I for one am tolerating tamoxifen just fine (7 months in), and so if some time in the next several years my doc wants to switch me if we find I'm menopausal I may just say no. I'm 47 so its possible this could come up. But its a bridge I''ll cross when I come to it.
Sorry this got so long, but I hope it helps you understand how these different drugs work. Take care - CS
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My hair actually came in thicker and curly. I have had not hair thinning with Tamoxifen.
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HI CS, WOW!!!!! thankyou sooo much for taking the time to help me out. I really appreciate it. Needless to say DONT apologize for the (so-called) long post.
I probably will have gone in for my Surgery by the time you see this, but just in case you do, Im going to quickly post this .... I was going to start the Tamox 3 days out from Surgery, now I want to take it, the day after. Would you say this is a wise move? I know people here really are reticent to actually advise people one way or the other and that is understandable. Still I'd appreciate your thoughts....
Thanks, Musical
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Hi Musical,
Good luck with your surgery, I hope it turns out to be everything you want! You're right, I'm reticent to give any medical advice since I'm not an MD. If I were you I'd ask your BS &/or onc and just ask when is it prudent to start again - right away or a few days after. As some add'l info to consider, I can note that part of the reason tamox is taken for 5 yrs is because ER+ tumors tend to be slow growing and therefore need to be starved for a long time. So even if you still had something in you (which most likely you DON'T!) and it got to grow a tiny bit more in the 3 days longer you are off, then it will still be starved for 5 more (4 more?) yrs of tamox. Just food for thought.
I hope you won't be offended that I'm a bit amused - so many of the posts on this board are about people scared to death to take this drug, so it's a turnabout to find someone who's scared NOT to take it!
Best wishes to you in speedy recovery from your surgery!!!
CS
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Good Morning cs7777!!!!!!! I so appreciate, again, your explanations about Tamoxifen and Arimidex! And yes, I also, have been taking it now for 6 months, & very few side effects! You make everything much easier to understand, by explaining it the way you do. You MUST have been a Pharmacist in "your other life"....
But I don't even think THEY can explain the differences like you do! I have now figured out WHY I keep getting bothered with "Stasis Dermatitis".....Once you have it, it will come back every now & then, to drive you absolutely nuts! Then when it flares up, it itches like you would not believe...a "patch" on my lower leg....And it you happen to scratch it, that makes it even worse! I can control it with Domeboro, & Caladryl, wearing compression stockings. BUT, it is now "gone" again....I think because I was so scared & stressed out having to go on Femara instead of Tamoxifen...But I finally made up my mind, that at almost 73, I need all the bones I can keep, so I will not try either Femara or Arimidex! So now I am not worrying around here like a tit-mouse, fretting over starting the other pills! And that horrible rash has bit the dust again! Stress must make it flare up & the cycle starts all over again!
Anyway, Tamoxifen is mine to keep! And I will not complain of any other side effects it may present...Ha! Man, I have been going through so much turmoil every time one of my Doctors say I should try something else.....
And best wishes Musical! xoxoxoxxo Jeannette
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You're welcome Jeannette. Not a pharmacist, but a biomedical researcher (still am). I like learning all this stuff, although man it makes me realize how ignorant I was when BC hit. Oh well, some things its good to be ignorant about. Glad the dermatitis has receded again. Hopefully for a loooong time. That's interesting about the docs wanting you on an AI. Actually, what's interesting is that they started you on tamox in the first place, instead of an AI...in the US I think its becoming more common to start with the AIs in postmenopausal women becuase of the small improvements in recurrance vs tamox (although as I said yesterday, no better survival benefit). I'm with you (although younger, obviously) - I'm tolerating this drug just fine so why trade the devil you konw for one you don't? It there were massive differences in their efficacy that would be one thing, but there's not. And yes I agree - the stress of all this must go!!! My BP was up for 6 months by about 15 points and it finally went back to normal, and I track that to my finally just saying "tamox is ok, I'm taking it and that's that" and stopping fretting about whether there's any absolute way to know whether its working for ME. Funny what stress does to a person! Down with stress I say!!!
Take care - CS
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Haha CS yep, with this mongrel of a thing called Cancer, Im must confess to trying to be VERY proactive in everyway I can. I kinda think, since this beast doesnt stand still, its either going backwards or forwards, as such, if that means gaining 1 minute against the monster I will. As Ive said a lot now, Its AWAYS ALWAYS a choice between the lesser of 2 evils and I will gladly take the lesser, as its hobsons choice anywayz, so might as well get on with it eh. . Still Tamox so far hasnt given me toooo many dramas and Ive still "got a life".
Indeed I look forward to reading some more of your posts as Im only a relatively recent newcomer here. From what Ive seen, its really GREAT to see the effort that people like you put into research.
Cheveyboy thanks for your kind thoughts
and by your name I take it you like Chevs??? My hubby is a V8 boy and we have one and it sounds SOOOOOOOO neat LOL. ...ANywayz, V8s are the music of the car world Well ladies, Im off in a couple of hours, and thanks again.
Musical
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Well CS777 isn't an MD, but she is so knowledgeable and I always learn something new. I think it is wonderful how she takes the time to type all this information for all of us. What a blessing she is!
My onco said that if I can tolerate Tamox he wanted me on it instead of an AI because of longevity of the studies on this and side effects compared to other meds.
That's interesting to hear about your BP going up CS777 since mine sure has. Of course I'm a big baby about all these needles (almost fainted today at the lab). My BP has been up so high that the nurses have freaked out before surgery and wanted to get an EKG done first. Just nerves.
Musical, I hope your sugery is a sucess with no complications!
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Hi Musical! Yes, we love Chevys....We bought a '57 black hard top in 1961...Then he converted it to a stick, & re-built the engine SEVERAL times...put 4 on the floor......even raced it one year, & it was so fast one time, that he had it "fish-tailing" down the highway one day, & I was screaming at him & wanted to kill him, if he didn't kill us first! But this was a long time ago! He chromed a lot of the engine...& we just sold it to his Nephew a couple years ago....At least it is still in the family!
And during this time, our Daughters brought home this little tiny puppy, carried in one of their pockets....We couldn't believe it....And DH was sure we weren't going to keep "it".....But I figured if we just took our time, he would come around....So DH got to name him...."Chevy"....& he was "my boy".....We had that guy for 14 years....He was an Australian Shepherd, Sheltie mix...& a blue merle. You guys know how you get attached to these "kids".....Well now we have little "Lacee"....the most beautiful little Sheltie in the world...of course. She was another one, our Daughters bestowed upon us! And our hearts just opened up. So what was your question again?
cs777.... I "asked" for Tamoxifen! One of my dearest friends had a mastectomy, then 5 years of Tamoxifen, & this was 10 years ago! In the mean time, I had read all I could about the other 2, & the side effects, at least for me, just weren't in the "things I want to do"......So I told the Oncologist I just wanted Tamoxifen...& he gave me the prescription...The NEW Oncologist wanted me to try the Femara....but I am like you.....This one seems to be working, so I don't want to try something new! Now I just have to get up enough nerve by November to tell her I am staying on Tamoxifen. Could one of you gals tell her for me?
Okay girls, have a great day! xoxoxoxo
Okay sweet gals....
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Chevyboy, I'll tell her for you! I've already told my Onc in advance that I will not take AIs, tamoxifen is evil enough, and that''s as far as I'm willing to go, I will not take something that sucks every last bit of estrogen out of my body and that possibly will age me a lot quicker in many ways. No I just simply refuse to do it! He keeps saying that we will talk about it more when I'm postmenopausal, but he doesn't know how against these AIs I am. I'd rather do natural things than take those if it ever came down to me no longer being able to take tamoxfen for any reason.
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Hi all, thought I'd share an update. I had my excisional biopsy yesterday. The surgeon said it was a lipoma, a fatty mass that are always benign. I'll see her again either Thursday or Tuesday and get the final lab results, but, I feel like if she was confident enough to share that information, I'm probably in the clear. What a relief. I was miserable during this wait. And, I got to skip my tamoxifen yesterday, slept like a baby, or maybe it was the vicodin. ;-)
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Great news Lottie!
TCK
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That's great Lottie!! Yay!!
I wonder if lipomas are common once we've had breast surgery...there was someone on another thread that also mentioned one of those that popped up real quick, and turned out to be fat. Hmmm....
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Chevyboy: Let me know when your appointment is and I can try to drive up the road and tell your onco for you.
Lottie: What great news!
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Chevyboy - I hear you on the tamox vs AIs. I'd like to be a fly on the wall in your next appt when this comes up!
Actually, taking a friend or DH with you to support your position might not be a bad idea, even if they're just silently "there for you". I'm going to be gone for a week, so Happy Independence Day everyone!!!
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Oh man you guys.....but thank you for offering to go with me, or at least tell my Oncologist! Ha! It just makes me feel like I am doing something "wrong" by not doing what she wants, but I am at least 100 years older than she is, & I should NOT be afraid to speak out...
I guess what I should do, is call anytime soon, & just tell her, & whine about not wanting to even START the Femara... & that I won't use the prescription for Femara, & ask for her to refill the Tamox when it runs out next year! Maybe I won't even have to GO in November? Why do we have to go to so many Doctors anyway? Our primary care, our Radiologist, the mammograms, AND the Oncologist! Can't just our primary care take care of these prescriptions & order tests? Just a thought! Thanks BC....Ha! And cs7777...you too! I copied some of your posts about Tamoxifen, & printed them together, to keep in my note-book!
Stay cool girls! xoxoxoxo
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Really great news Lottie!
Hope everyone is having this beautiful weather we are having now!
Have a great day!
♥ Susie
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Wonderful news, Lottie
Susie09, it is beautiful out my way also. After having my biopsies yesterday, it was nice to be able to sit outside on the porch and enjoy watching the birds instead of being cooped up in the house. I hope everyone has a wonderful 4th my BS has mentioned Tamox to me on my last appt. It is good to read all the responses on this thread. After my appt. tomorrow I will have more of an idea where all this is going. 0 -
Yeah, Lottie Yippee
and Sheree, thinking of you as you wait, yet again!
Cheers all,
C
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Good morning girls....Could you please tell me WHO prescribes your Tamoxifen, or any other Als? I started thinking....WHY do I need to see an Oncologist AND a Radiologist every 6 months, besides my PCP every year? Can't your Radiologist prescribe Tamoxifen? She orders my Mammograms....or even my PCP? Even if I only have to pay $30 for each "specialist," wouldn't it make more sense to have just ONE Doctor do all this follow-up? Thanks....xoxoxoxo
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Hi Chevyboy- I have been asking the same question- the oncologist gave me the script for Tamoxifen after a failed Femara try- I still see the surgeon, she orders the mammo/ultrasounds, the Rad doc. said I did not need to come back Yeah !!! unless I had sideeffects from Rads, I do have truncal lymphedema, but saw a pt specialist who taught me to massage the fluid out, I am seeing the surgeon again next week, and plan to ask her if she can do all the "stuff" I need to have done. When I have an appt schedules, insomnia, loss of appetite etc always reappear, so the best for me would be fewer doctors to go see. It will be 1 year from my surgery this coming month.
Will post after the surgeon visit and let you know the answer.
dsgirl
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Thanks everyone. cs7777: this lipoma was in my left breast. Lost my right one almost 1 year ago. I was thinking that maybe the lipoma was always there, but I've lost almost 20 lbs since March (not on purpose either ???) -- perhaps the fact that my left breast is lots smaller than it was months ago made the lipoma more palpable? This also makes wearing my prosthetic a problem since it's now obviously larger than my real breast.0
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Chevyboy: My onco prescribed my Tamox. I see him again next week. I have a feeling my PCP wouldn't do it and would want me to see the onco knowing him. Now my BS probably would though knowing her if I wanted her to.
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