Bottle o Tamoxifen
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Welcome JOJO
Chevyboy: I'm glad they found the low battery power and can get your husband in the OR on Monday. I would think it shouldn't disrupt your Orlando plans that way either since he'll have some time to recuperate. And you'll have the trip look forward to
. TCK
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Thanks so much TCK.....Yes, I'll be so glad when it's all over! It shouldn't be as hard as when they put the first pace-maker in.....that's what the Doc says! So Thanks again!
Our youngest Daughter, (47) is going to be there also, & maybe his Brother! When I had MY surgery in December, our oldest Daughter flew in from Orlando to be with us.....So while I was under the knife, She, & our other Daughter, and our "adopted daughter" from Viet Nam, AND my Husband all went out to party! Ha! They went shopping, at 3 different stores, then a nice lunch, THEN to a sale in the Hospital gift shop! The Surgeon had to call my Daughter after the surgery, to tell them I was great, & to come back, because they weren't there,
That still makes me laugh! They were out party-ing, & I didn't have any clothes to put on to go home! But I just thanked God, that my Husband had all those women to take him away from all the worrying. Even if I almost had to call a cab to go home...in my hospital gown....Ha! Okay kids....have a great day! xoxoxoxoAnd JOJO.....Welcome! Hope you pull up a chair & join us here, & just have fun with us! We all just sit around by the pool, drink Margarita's & listen to Jimmy Buffet! Ha! Wouldn't that be fun! I'm going to do that in Orlando.....since I'd have to go aways to find a "pool" here in Denver.
Chalex.....let us know what you are doing? Are you alright? Even if you don't find it easy to take Tamoxifen, maybe there is something else better for you! I never noticed a change in my personality, although maybe it could have used some help......but I notice that my "thinking" is a little sharper now! That my brain can "organize" thoughts & tasks better than I used to! I know it USED to keep me up nights just thinking! But the Melatonin has helped quiet my littl brain down.
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JOJO ~ Welcome to the tamoxibabes thread. Great info here and some great girls !!!
Chevy ~ will keep your hubby in my prayers that all goes smoothly with his pacemaker switch. Hang in there !!!
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Hello Ladies wondering if anyone of of you could answer a question for me? Been on Tamox for 3 weeks now and no known SE yet, but this morning was the 1st time I felt like a wave of nausea and got very hot.....never a sweat but VERY warm. Is this a normal SE? I was also wondering how long it takes for the SE to hit. I thought I would experience something now, so maybe that was my 1st.....Any help would be great as this morning my nausea lasted for at least a good 10 minutes....
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Chalex, Regarding your Q about possibly stopping tamox, I'll just comment that sometimes the SEs are temporary, tapering off after a few months. I know another woman who said she felt really witchy (and the rhyming b- word...) and short-fused for a few months but then it tapered off and she was fine. That doesn't mean it will be that way for you, but suggests at least it's possible. Since you felt the potential benefit of tamox was great enough for you to start in the first place, perhaps it's worth sticking it out for a few more months to see if this settles down. Because of the pharmacokinetics of this drug (the rate at which it builds up and breaks down int he body), you're only now reaching a "steady state" concentration, and its possible that once you get used to that you will adjust. Until now, you're constantly experiencing a higher amount every day in your system as it builds up. During this time you could also be investigating alternatives you might have if you do decide to stop tamox.
June, Your nausea is definitely a possible SE of the tamox. Your "getting very hot" is a hot flash (or hot flush, as some people say), which is also a super-common SE of tamox. Lucky you! ;)You don't have to sweat for it to be a hot flash. How long till SEs hit - well, it really varies from almost immediately to never, so in that regard you're in the "normal" range.
Seriously though, a lot of women seem to say they experience SEs within a few weeks to several months, if they get any. Re the nausea, by comparison I'll note that in my 1st ~3 months of tamox I had two 3-5 day intervals where I was nauseous, headachey, stomachachey, really tired, just plain icky. And yes some warm waves thrown in there (my flashes aren't very hot). Interestingly, both times were before my period hit the next week. Luckily this stopped, although I get an occasional mild stomachache or headache. One thing to be careful of is making sure you're not pregnant, though, since nausea obviously could be a sign of that too. My onc's NP insisted on my taking a pregnancy test after 2 months of tamox because I complained of the nausea & stomachaches...even though I'd just finished a period...talk about dumb unnecessary tests! If you're not already, jot all your symptoms plus your periods and and other drugs or alcohol you take on a calendar, so you have a record to discern patterns or make associations from. Hopefully your nausea will improve as mine did - good luck to you!!JoJo - Welcome, glad you can hang out with us!!
Chevyboy - Thanks for the latest gate installment, or uninstallment in this case.
Glad you got proactive to get that sleep-disrupter out of the way. We should all be so decisive in changing the stuff that bugs us!! Sorry to hear your husband has to have surgery now rather than Nov, but it sounds like it's really needed. Best to him and you in powering through this one too! (Now let the kids take YOU shopping while he's under, so you're not worrying!!!) As for me I'm recovering from my exchange surg quite well. Off the vicodin. Onto Alleve. Probably can dump it too but I get my drain out this aft so I'm going to stay on today in case that's painful. Last one was no problem.
Speaking of alternatives to tamox, someone asked a week or so ago about that and I mentioned there were 2 other SERMs that exist but are lesser used (at least in the US) but couldn't recall names. They are Evista (raloxifene) and Fareston (toremifine). You can learn more about them at the BCO info pages: http://www.breastcancer.org/treatment/hormonal/serms/evista.jsp and http://www.breastcancer.org/treatment/hormonal/serms/fareston.jsp
As newer drugs, there are fewer clinical studies of them, and I'm unsure whether either is used regularly (or has even been studied in clinical trials) as adjuvent therapy for pre- or post-menopausal women, but for interested parties you can research these more and ask your doctors about them vs tamoxifen and vs AIs. There might also be discussion threads here on BCO about them but I haven't looked for them.
Hope everyone has a great day!
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June2268-
I felt like every hot flash was preceeded by what you are describing....sort of a sick nauseated feeling, but they never lasted very long. Now they are more like warm flushes....very mild. I would have to agree with cs7777, sometimes these SE's come and go. Everybody is very different. Mine hot flashes were much more severe right out of chemo last summer. Now my ovaries have recovered and they are not near as bad.
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Hi Ladies,
I just started Tamoxifen Monday so I am joining the club I don't want to join
I recently had a pelvic ultrasound due to extreme pelvic pain. I have fibroids and complex cysts. My onc is referring me to a gyn/onc for f/u. If the cysts remain ovary removal and possible hysterectomy is in my future. 0 -
Welcome etk....we know about not wanting to be in "the club"....but after you get fixed all up, & over the worst part of your journey, you can come here just to "talk" & even sometimes to laugh! It isn't all about cancer....not us gals.....And you can find information, & a shoulder or two to cry on, & we'll just all be here to help you through this. The T pill "ain't easy".....but not so bad for me! Some gals have the worst hot flashes....(as you can read) that you ever heard of....Some women even get them without taking Tamoxifen! you can "go back" pages here, & read a lot more about us!
I, & probably a lot of othere here have had a hysterectomy...so maybe that is the best thing for you! If you have a lot of pain....just find out from lots of Doctors, & tests, on what it is.
Keep you chin up kiddo! Jeannette
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CS7777 and KorynHthank you so much for answering my question. I feel better knowing that it was from the Tamoxifen and this is what I will have to look forward to in the future. You hear about the hot flashes but never having one before you just don't know what to expect and then throw in the nausea I was just so confused but I feel so much better now..........THANKS ladies!
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I have been on Tamoxifin for just over a month---this follows 6 rounds of chemo that put me into "menopause"--because of that my initiation into Tamoxifen was perhaps easier--I had already gone through 3 months of hot flashes and a couple of night sweats...I am feeling fine on the drug- so those of you reading this and hearing the difficulties---it may not be you. I like the attitude on this forum...everyone is positive and looking on the bright side. There were many people who told me not to take tamoxifen--gave me loads of fear stories even when I asked them not to but here I am and doing fine!
I have a good attitude but the last few days it has been rocked by frustration--was to have my first of two recon surgeries on Wed but I got sick! Sinus infection so now I have to wait. Yuch. really wanted to get going with the next step you know?
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Hello everyone -
I just started taking my little white pill four days ago and I have a question for all of you that have been on it for awhile - does anyone know if hot flashes eventually decrease in intensity? Thanks to chemo putting me into chemopause, I've been having hot flashes the last few months and I've been able to get used to them, but last night was a different story, I had flash after flash after flash and it seemed like I didn't get any sleep at all. It was a miserable night and has me wondering if this is what the next five years is going to be like? I sure hope not because I don't think I can manage not getting restful sleep each night.
I'm sure this question has been asked and answered before so thx for any input.
Hello to Chevyboy - hope you are enjoying our beautiful weather! I'm so glad that its finally warming up here in Colorado!
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Morning Girls! Can anyone help me with THIS one? I am now taking Immodium AD for this "problem" I have had for a week! It HAS to be the Tamoxifen.....Been on it for almost 4 months now! What IS this? Every week there is a new little side-effect we have to keep up with! Damn! Now I know it is better than being plugged up....MAYbe! But this is driving me crazy! It is mostly in the morning when I wake up! After the Immodium, then it is better....But I am just not normal! Now THERE'S a revelation!!!!!!!! I mean physically! I tried lots of bananas..."Fiber Choice".....but they just laugh at me! Didn't help! Maybe I should try taking the Immodium at night? With the Melatonin? Do all these pills care? I mean about each other? Rattling around in there? Man, what next?0
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Have you tried Glutamine? I took it the whole time I was doing chemo--you can get it at gnc I think though I got mine through my acupuncturist---the nutritionist at my oncologists puts all her people on it. Mix it in ---yogurt or I use almond milk--juice whatever and down it.. I was doing really well post chemo and then wham about 2 weeks ago it started like it was when I was doing chemo so I took a teaspoon or two morning and night and it all righted itself.
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Good afternoon tamoxibabes! I'm feeling more babe-ish now that I have a normal chest again.
Well, normal looking anyway. Woohoo!! I went out in a form fitting tee and no scarf today and felt so fabulous. Yippee!! (For the newbies...I just had exchange surgery to my final implant 5 days ago.)Speaking of newbies, welcome etk02038, alpit and Mommaof2!!! Do hang out here and ask and answer as you can contribute. I've really enjoyed this thread since I started tamox and learn a lot from everyone here.
etk, so sorry to hear about your ovarian cyst issues. At least you don't have to wonder if it was a side effect of tamox, since you just started on it. Best to you in resolving the gyn problems. Ask your docs lots of questions! Including, "what would happen if I do nothing? and, Are there any nonsurgical/nonmedical things I can do like exercises, stress reduction and foods that might be helpful?" Well, you don't have to ask those, but I would.
alpit, So sorry for the delay on your surgery- ARGH!!! I definitely relate. My 2nd recon surgery was delayed 2 months because my clinic screwed up something related to the implant clinical trial that I was to join and they couldn't use the implant until it was straightened out. The waiting for was so frustrating. You'll get through it though, you will, you will!! Demand another surg date ASAP and do everything possible to stay well - wash hands, stay away from kids (if you can), rest a lot, etc etc. Good luck in that next step, and may tamox treat you gently!
Mommaof2, sorry I can't say anything about your hot flash experience, except that I hope it calms down. Hopefully some other gals who get hot flashes can comment on whether theirs settled back after some time. I sure hope it does for you!!
Chevyboy, wow, Imodium eh? I guess that means diarrhea?? Ack!! I didn't even know that was a possible SE but just looked at the list and yep, it's there (along with constipation...the exact opposite...huh? Ok, not so wierd perhaps...I suppose if tamox can mess up peristalsis and digestion then either might happen.) I'm a bit surprised it came on after 4 months though, since you ought to be getting "used to" the drug by now. I wonder if you might have a bit of a bug, or ate something bad that you haven't shaken? Also, maybe I'm remembering this wrong, but fruits tend to be diarrhetic don't they, so perhaps instead of adding more fruit like bananas you could add other high fiber foods like other veggies and whole grains??? Just make sure you don't get dehydrated, which is adanger of diarrhea. If it continues I'd call your doc.
Love the visual of all the pills rattling around together inside us - LOL! I feel that way after I take mine. I'm sure some of them care about each other but that's one issue I just haven't pursued, other than splitting my calcium dose morning and eve on doc's orders. Just don't have the energy to figure all this out.
Have a great weekend everyone!
CS
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Chevyboy, I am so sorry about your husband. I know how helpless you can feel waiting and worrying. Sometimes it is so much easier to be the patient. I sit and wait a lot for my DH quite a bit of the time.....and worry. And that worry eats at you and causes stress....which can also upset your tummy too. Which I'm sure doesn't help with your other issue going on. You are in my thoughts and prayers.
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Good morning - I have a question for everyone, if you're willing to share. Has it been recommended to anyone that they take Tamoxifen AND have their ovaries removed? And did you? Or even if it wasn't recommended specifically in combo with Tamox, has anyone (who was premenopausal) had their ovaries out?
My onco is leaning in that direction because he thinks it would provide me with additional insurance angainst recurrance (hey, that rhymes!), but I'm just not ready to be in full-on menopause. I didn't have chemo (another reason he wants to do more), so I didn't go into "chemopause" (and haven't had any hot flashes on T either, but it's only week 2). I'm 39 and done having kids, but it still seems so final and I'm having a hard time with it. I haven't gotten BRCA results and will definitely do it if it's positive, but the geneticist didn't think it would be. Anyway, I'm just looking for some input.
Thanks!
And Chevyboy, good luck and try not to worry!
Alpit - I seem to have gotten a lot of negative vibes from people about Tamox too, but when I expressed my concerns to my onco, he really made a case for taking it, so I do feel like I'm doing the right thing. (but ask me again once I have some horrible SEs! LOL)
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Chalex----as others have said, you may want to try and hang in there with the tamox a while longer if you can. It does take your body time to acclimate to it, several months for some (up to 6); and you have to weigh all the Ses with all the benefits. While it wasn't easy, I took it for 5 years, as the benefits far outweigh the risks for me. (high risk from LCIS and family history of ILC).
Anne
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tory: I was advised to have my ovaries removed and chose to do so while taking tamoxifen. I am 46 years old and was perimenopausal (irregular periods and a few hot flushes). I had my ooph/hyster in Dec 09 and had started taking tamoxifen in Oct 09. My BS and Med Onc as well as my longtime OB-GYN all recommended this for me. This was based on my extremely strong family history. My genetic testing did not come back positive for the BRCA mutation but there were abnormalities that were of "unknown significance." My bc was 90% ER+ too. I will be discussing with my Onc at my next appt what her plans are for me such as how long to continue tamox. I am tolerating it well thus far and haven't really noticed a big difference since having the ooph/hyster. Feel free to PM me if you have other questions that I might be able to help with. Good luck in your decision.
TCK
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Hi Tory, No one in my doc "team" has suggested I remove my ovaries. I'm 47, and seemingly entering perimenopaus before tamox (had infrequent warm waves for about a yr before BC, plus periods starting to shorten a bit). I expect part of their talking to you about this is because you are quite young. Sounds odd, I know, but the longer "natural expected lifespan" you have ahead of you, the more aggressive they often want to get because you have that much more time for a recurrance to happen. Anyway, I know if my docs talked to me about this I would be asking where the data are showing that this has benefit, how big is that benefit for women with your disease characteristics, and how does it differ than the tamoxifen alone? For example, my docs estimated my risk of recurrance was ~10-15%/decade w/o tamoxifen and ~5-10%/decade w/tamoxifen, given my disease characteristics...so I'd ask how much lower would that go if I had the ovaries out, and would they still expect me to take tamox or an AI with all their potential side effects (as well as the SEs of oopherectomy). I'd also ask, is there anything in particular about your disease characteristics that's making them think you're at a higher risk than the general stats show (e.g., Hannahbears mom said her ER+ was 90% positive; your BRCA status is definitely relevant). Also, might your course of treatment already have improved your odds of no recurrance? (e.g., lumpectomy vs mastectomy vs double mastectomy)? I'd also ask if there are other ways you can decrease your risk instead that you don't already do - like nutrition, stress reduction, weight control, etc etc. Most docs won't have much to say about the latter, but its worth asking, and looking into as the data are compelling. And I'd ask about the possible downsides to being postmenopausal at age 39, e.g., extra bone loss starting a decade early, etc. The effects of menopause are well known - you should know whether you want to experience it early and have an extra decade of its effects. (Some effects, notably are good - no periods to worry about, no PMS, no more birth control needed, etc., so I'm not saying they're all bad!) I would also most definitely get a 2nd opinion.
I'm sure in my tone you can tell where my bias lies, but please don't hear what I think you should do but instead that I'm encouraging you to ask a lot of questions and then make an informed decision based on what works for your life and your risk tolerance. Gotta go to dinner, so I'm signing off. Good luck to you on this decision! Hopefully other people will chime in too!
CS
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Thanks for your input, TCK & CS!
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My hot flashes and insomnia have faded considerable after a year and half of tamox. According to my onc. that is what he sees often. HOWEVER, trans vag ultrasound showed uterine thickening, I went in for biopsy and colposcopy as there was also funky cells from PAP and now I have to have a LEEP (cin 1 and cin 2 - cervical issues)!!!! please don't tell me two cancers! I read a lot of you have had hysterectomies, that may be my next step too. I am 53, have 2 years to retire and yikes!!! I am nervous about the procedure as my biopsies were pretty painful, but I am going out. MORE nervous about the outcome.........
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I didn't do BRCA testing since my daughter didn't want to know and if I had a chance of passing something on to her I wouldn't want to know and not tell her! No family history on either side. So I guess I'm takng my chances right now with tamox keep it from coming off. My onco seems to be conservative in approach and that is fine with me right now.
Traveler56, I will keep you in my thoughts and prayers that all is ok. [[[[[hugs]]]]]
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Hi All - I've been taking 20mg tamox daily since March. Hot flashes are truly awful when they occur, especially when they come at 3 a.m! Also have lots of aches and pains, on top of the rheumotoid arthritis I've had since before BC. But, these SEs are managable at the moment. Question: I'll be taking a 6 hour flight next week and know tamox puts us at more risk for blood clots. Should I wear compression stockings during the flight? Anyone ever been advised to do so?
Best to all
Lottie
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Lottie, I haven't heard anything specific about wearing compression stockings although I have been recommended to wear a compression sleeve on the side where my nodes were removed to reduce lymphedema chance. I suppose the stockings as insurance agst blood clots would fall in the same boat. (note that the docs admit there have been no organized studies of whether the sleeves on flight resulted in less LE in the wearers, they're just using logic). As important, maybe more important?, is to get up and move around frequently, at least every hour I think is recommended, don't just sit in your seat sedentary. This is recommended for everyone.
Traveler - So sorry to hear of the cervical issues and biopsies. I do hope that the LEEP isn't painful and even more that the path on it is nothing! I'm sure its scary esp after BC, but at least cin1 & cin2 are the earliest signs of dysplasia (which is not cancer), and lots of times the LEEP and/or colposcopy remove the problem areas and it never comes back. I do hope that's the case for you!!! Hugs, and hang in there!! (I expect they told you this, but in case not I'll note that uterine thickening is EXPECTED with tamoxifen because tamox acts like estrogen in the uterus, instead of acting to block it like it does in breast tissue. In most cases, however, the thickening never leads to anything of note. The cervical issues are separate.)
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BCincolo - I meant to add, since you have no family history of ovarian cancer or BC, then your choice not to do BRCA testing makes a lot of sense IMO. I didn't do it either, for similar reasons (I don't have kids to worry about, but do have sisters). We must have similar oncs.
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Hi,
Thanks for everyone's help by responding to my displeasure with taking tamox. I am still taking it and will be asking my surgeon for my specific case what my numbers are for having a recurrence. It was also mentioned to me by the surgeon to take the ovaries out as well. I am nervous about going into full surgical menopause too....
Thanks,
Chalex
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Thanks for the welcome. And yes, CS I will ask those questions. I do exercise a lot since I am a pet sitter and walk dogs all day. I did change my diet which was good but now even better. I miss my sweets and wine! Since doing research on ovarian cysts I found out that dairy may be a culprit. Since I reduced it quite a lot my pain has been reduced. But, then again I think I may be going into natural menopause, missed 1 period a few months ago and again this month. Well, I will see what things look like Friday after my 2nd ultrasound.
traveler Good luck with your results!
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Speaking of diets: I have been reading the book "Anti-cancer" the recommendation of someone on this site. Very, very interesting. Was curious to see how many of you have changed your diet and your exercise routine? I have been trying to incorporate more fruits and vegetables, but haven't bought any of the organic food yet.
Brenda
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Lottie: I have beard that you should also make sure not to cross your legs at the knee (a hard one for me) and flex and point your toes every 20 minutes at least in your seat to keep the blood moving in your calves and avoid clotting....even on car trips. This was told to me by my BS.
CS7777: Glad to hear you chose no BRCA too since I've been second-guessing myself so much over that one for so long. It seems like everyone is doing it and I thought I was the only one out there who didn't. Since I know your background, I know you research everything, and I sure feel so much better about my decision! Thanks!
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bcincolo - Not doing the BRCA test was easy for me, since I have tons of aunts and great aunts and none of them had breast or ovarian cancer except one great aunt who got bc at a quite advanced age. So it just seemed like an unneeded test. Esp since I don't have kids to worry about informing (or not). Not taking the oncotype test was harder. I consulted two oncs aobut whehter I should do chemo and they both said no. When asked about whehter the oncotype test would be helpful in "being sure" hey said that since everything about my path had "no unfavorable characteristics" that the likelihood the oncotype test would suggest a benefit of chemo was extremely unlikely. The second onc said, so, what if you take it and it says you might benefit from chemo, then what are you going to believe, the oncootype test or all your "favorable" pathology? Good point. Since chemo would only give me a small benefit anyway (statistically, for my BC path), and tamox would give about the same amount, it was easy to choose tamox instead. Its a quagmire of decisions and choices though isn't it?
CS
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