Bottle o Tamoxifen
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Alicia,
I did not have to do chemo so that is not the cause. I am planning a trip to AC with my boyfriend on 10/25 to celebrate my 50th. I had told him that I would not have my period at the time but that was before the random mid cycle period hit me. I keep track and am regular, it drives me nuts not knowing when it will come. I am still hoping for never. One can hope, right?? And you are not rambling, check my posts, I am infamous for talking too much here.
Hi Melanie, you passed the test, I see your name! I like lady madonna though. I should have come up with a more fun name!! Dorothy is my given name although I think I am the only Dorothy on earth that is not over 80!
Have a great day all. Peace and love to all!!!
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I have a question ladies. I started on Tamox a few days ago and would like to take something to help me sleep.
I do NOT want to take a prescription drug if I don't need to. But would prefer to take something natural or herbal.
My oncologist approved me to take melatonin but I just discovered I can't get melatonin in the Republic of Ireland. So plan b is....Valerian root. Has anybody tried this? Does it work? How much do I take? Is it ok to use with Tamox? So many questions....sorry!
I will obviously have to run it by the Onc but I also would like to here from you ladies.
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Momofcuig, I've tried valerian and melatonin. They both seemed to work for awhile. They got me to sleep, but not so helpful at keeping me asleep through the whole night. Lately, nothing works except ambien, but I'm trying to stay away from that except for when I'm really desperate to sleep a whole night. The other thing that works well for me is an over the counter product called doxylamine. I buy it at Walmart, get the store brand. I'd like to research it a little more regarding long term effects before I start taking it too often.
Dorothy, I also am turning the big 50 this year. Looks like we are both Scorpios. (I'm Nov. 4th) So funny your comment about your name! Unlike you, I'd gladly like to have a period again, just don't want to be in complete menopause yet, but it's been 8 months for me now. I did go 9 months last year, then got it again for 2 months and I was thrilled. I had started skipping periods for months at a time even before the tamox, so as I've said many times on here, at this age it's hard to pinpoint whether it's tamox or natural progression into menopause causing all the symptoms. But I agree that it's aggravating not knowing when or if a period will ever come again. Lab tests show I'm not in menopause yet.
I just booked a flight to Italy on Nov 7 to celebrate my upcoming birthday. My daughter is studying there, I'll stay with her to save on hotel bills, and the airfare was very low right now. Can't wait!
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My oncologist says when I tell him I still have the hot flashes/night sweats that it IS A GOOD thing, that all is working. I was totally pre-menopausal before chemo (age 47), slam-bammed into chemopause in one day when starting taxol. Now totally post-menopausal. Took the tamoxifen for 3 1/2 years, now on Aromasin. Tamoxifen really was quite mild with the s/e's. Finding more hair loss/thinning, bone pain on Aromasin, and even bruise more easily. I go for my annual CT scans tomorrow (chest/abdomen/pelvis), luckily now have a power-port instead of the port-a-cath that was taken out in March (developed a sheath that could not be dissolved, replaced the port due to almost impossibility to do blood draws/IV's on only arm that can be used)...so I can get the dye injected thru the port...yayyyyy!~! OH, and don't forget the VERY YUMMY barium too!
We do what we gotta do. I prefer the tamoxifen over aromasin for sure, but different needs now. ALL my best to everyone here just starting, and those still on tamox.~juli
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Hi Dorothy, thanks...I don't know if you read thru my profile info, but I chose my name because of the Beatles. I like that they called their song "Lady Madonna" because they thought of her as the typical mom/wife/every woman! I like your name too... it makes me think of Oz!! Yellow brick road, magic, how wonderful!
I seem to be just fine on Tamox, I don't know if it's doing a darn thing-?! Hope so. We did the metabolizing test. Haven't heard back re: results yet. Maybe I'm just feeling so much better since finishing chemo and rads that I don't notice the effects of Tamox. Honestly I don't feel like I have much to say on this thread! Guess I'll just hang out and chat!!
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Hello NY, NV, Ireland and all my friends!
Rose, how cool is that we are two surviing scorps who is turning the the big 5-0 with me ( btw,50 IS the new forty).....we were both diagnosed at age 49.
Juli, hot flashes are a good thing, go figure. I will do my best to look at it that way. I can't imagine why you would not want mentopause to happen, I welcome it... I say BRING IT ON!
And Ms. Lady Melanie, thanks for liking my name, haha, I have always wished for what I refer as a modern name, ie Nancy, Kim, Debbie etc, those names from my generation. Melanie, are you referring to genetic testing when you say metobolic testing? I have not heard that term.
All the best to my new friends - we all have a special bond. I was told my my PT that I will be a better person due to BC. I am waiting for that to happen haha!
Mom, I agree that a PM pain reliever will be helpful with sleep. I can sleep and sleep and sleep, I sleep too much. I wish I could give you some of my accumulated zzzzz's!
Peace n luv to all of you!
~dorothy
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Hey All - I finally received my "Bottle 'o Tamoxifen" and have had three days of it. So far nothing to gripe about. I assume the more it gets in your system and effects the estrogen the more likely the se's will appear.
Momofcuing: Not sleeping well has been a problem for me since Chemo started in February. I think I have warm flashes through the night and that wakes me to the point of not really resting well. Anyway, I have tried nearly everything from Melatonin to alcohol (ha) and like Rose, Ambien is what has worked for me. I don't know why so many people are afraid of it. If your afraid of getting hooked on it you won't - you'll be responsible. I've taken it for years -- off and on and never taken more that one 10 mg tablet - and most always it's been more like 1/3 - 1/2 that works for me. I don't do well on little sleep, that's one thing I have to get plenti of. Have always thot I was a wimp in that department, but it's my chemical make up I guess. I'm a bear w/o it. Hope you find something that works for you.
Juli - hope your CT scans go well.
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ECT: Thank you, just back from them..yummmmmy barium drink and no problem with power-port for the dye. Will know either if I call for my reports (I always do) faxed to me, or when I see onco next week.
Dorothy: Oh, I didn't say I didn't want menopause, I just want the s/e's of it to END, lol. 4 years now of the same, constant flushing/hot flashes/night sweats, when does it end?? (Rhetorical question!) Sure I'm glad not to have a period anymore, just sorry that I cannot help my bones with estrogen, as I'm already losing bone density and now the big debate over bone drugs, my primary doc and I will discuss that next week. No endocrinologist anymore (just 'fired' him for not taking my vitamin d deficiency OR my bone loss--9%--seriously at all)..my pcp is more interested and researching the bisphophonates (sp?)/bone drugs.
Truly, tamoxifen really did not affect me all that much, but the Aromasin sure is...hair falling out/thinning, bruising REAL easy, rib pain...still nothing to complain about, just 'stating the facts, ma'am'!
Enjoy Monday all~! ~juli0 -
Thank you all so much for your replies and advice. I am not oppose to taking a prescription strength sleeper... I just wanted to try natural first to see if it would work for me. I will admit that I tried the Valerian root for 2 nights and it did seem to help with falling asleep but....I still woke up many, many times during the night.
The night sweats are ridiculous. I don't think the 4 doses I've taken of the tamox have made them any worse but they are really really sickening!
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momofcuig, take your Tamox first thing in the am with breakfast if you're not already. See if that helps with the night sweats. If that doesn't help you can ask your onc about gabapentin or effexor (sp?)
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momofcuig: LOL...that's a good way to describe the hot flashes/night sweats! I have to use a sleep aid nightly, and vary between Dalmane & Chloral Hydrate (THAT is a libido booster, whooo!). The ambien/sonata/lunesta never puts me to sleep, in fact, I get adverse affects from most meds, and I'm up all night, yep even tried melatonin. Gotta try what works for ya. Good luck on the tamoxifen, I truly had very little trouble on it, in fact, think it was mostly menopausal symptoms anyway. ~juli
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Lady_M and juli,
I had just popped today's dose of Tamox when I read the post about switching to the morning. I will start tomorrow. I think my train of thought about taking the Tamox at night was because I thought I would sleep through most of the SE'S. YEAH RIGHT! Who did I think I was kidding???? lol
Anyway, I will do a time change tomorrow and see what the results are...... keep you posted!
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Juli, Sorry I read ya wrong. I feel so bad for you, I am at the beginning of the tamox and have not had to endure what you have been through, especially with the bone density issues, wicked hot flashes and sweats. A big hug coming too all my "hot" sisters that are burning up and I hope you all feel better <<<<hug>>>>. I hope that my hot flashes continue to be mild, I can deal with that. I will go on another drug after five years but I intentially failed to remember what it is!
I am gearing up for my next surgery on 11/5, having the right TE removed and both replaced. Yay, I will finally have some symetry to my body. My first PS did not do the lat flap but my new one is doing it this round on both sides, I am hoping for no infection this round. I look forward to having drains again (NOT). It will be just another day in the life of Dorothy. I know I will get through this and pray daily for patience to do so. I am NOT a patient person but have improved since my dx.
Good night. Peace and love to all!
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Momofcuig, I had the same mindset as you with the timing on the tamox, I also took Lady M's suggestion and changed it to the AM and think that making the night sweats more tolerable. Thanks again for the suggestion Lady Madonna :-)
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I think I'll join you and switch my tamox around as well. I've been taking it at noon, but have sleep issues also. Have tried melatonin but I find I am very tired the next day, so maybe switching it to AM will make a difference. Thanks for posting the suggestion. :-)
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Edited to Add - and as I type this I'm having a tropical heat wave - omg - lol
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Pretty Funny!
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Dorothy: BEST of luck to you on your surgery. My gosh, NO need to apologize OR feel badly for me. LOOK at all YOU go thru!!! :O I always know there are SO MANY people much MUCH worse off than myself totally. Keep us posted, and sorry about the drains (ugh!). (BTW: I really, truly had VERY little effects from the tamoxifen, just mostly menopause symptoms, which one would get anyway). ALL my best to YOU, girl!~! ~juli
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Today marks the one week mark for me on the Tamox and it's been really uneventful to be honest, just a little emotional, but my bf tells me this is nothing new...lol
I haven't noticed any other side effects, taking the pill right before bed each night.
Just wondering, did most of you notice the side effects right away (most of you mention hot flashes) or was it after some time on it? I had horrible hot flashes during and after chemo, but not a one since I started the Tamox...should I assume that it hasn't 'kicked in' yet?
Mo
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Mo, I have only been on it for two weeks so I am not sure if the SE's are going to worsen but I do not think so. The only SE I feel is very slight hot flashes, mainly while I am sleeping. I am thinking that your lack of hot flashes is a GREAT sign.
Peace and luv to all....
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Just to reiterate, my oncologist said hot flashes/night sweats ARE A GOOD SIGN the meds are working on us ER+ patients. Not really sure why, probably due to the estrogen being quelled? Just thought I'd throw my .02 in there...not to complain about the hot flashes/night sweats...but I sure would love them to GO AWAY finally~!
~juli0 -
in_cognito - I got a back ache on my right side for several days after I began taking Tmox, but it subsided and has not come back. I've been taking it now for about 5 weeks in total.0
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Thanks Juli. Glad to know it is working. I am starting to think that the side effects are overrated lol. As in any RX, there is a laundry list of unlikely se's. From what I have read and experienced, so far, my tamoxi-fun has not been so bad!
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Well, I've been on tamox now for 366 days, only 1459 to go!!!
TCK
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Thanks ladies for all your insight about the back aches. I "think" my back aches have subsided - I haven't had a back ache for over 3 days now. I am now taking the T at night though - I wonder if that has anything to do with it!
As for the hot flashes - I get "warm" flashes so far but nothing major. I guess I'm waiting for some type of major hot flash to overtake me like they portray on TV.
I notice at night I go back from being either too hot, or too cold. I sleep with the fan on.
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Hey, a whole year Hannahbears - Woohoo!!!!!!! Good for you! I'm about 6 weeks behind you, at 10.5 months.
Re hot flashes as a sign tamox is working, I'm going to note for anyone w/o HFs who's suddenly worried that that is a debated point. Yes some oncs themselves will say it's a sign, but others say its not so, well, its still debated. I don't have all the data at my fingertips, sorry, but its been discussed on this thread in the past so you could read back.
CS
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Hi ladies it has been along time since I have posted.......but after reading what alot of you have to say about metabolizing Tamox, I guess I am a little worried.....The only REAL SE I have is constipation and headaches.......I have only gotten one hot flash and absolutely nothing else......My doc seems to be such old School I am not even sure he would test me......so with that being said, how do I know my Tamox is actually working for me? I am ending 5 months on the little white pill..........June
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In response to Juli's comment about hot flashes being a sign the Tamoxifen is working, unfortunately, that is just not true.
Each woman's response to a drug is different and there is no standard side-effect or measure that says something is working vs. not. Especially when it comes to the murky world of cancer recurrence.
The majority of women on Tamoxifen have no side effects at all, to include hot flashes and night sweats, and their cancer does not come back. We only BELIEVE that the majority of women have these side effects because those are the people who complain about them and report them.
And to be clear, there are women who take Tamoxifen and endure hot flashes and night sweats as their indivdual body's reaction to the drug, and Tamoxifen fails them and they end up with a recurrence of cancer.
I believe we have to be very careful not to scare some people into thinking Tamoxifen is failing them if they don't have these side effects we read about. Most women don't have those side effects and most women do VERY WELL on Tamoxifen.
Alaina
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Very good point Alaina. The debate is also out about the CY blood test. My onc won't even run it because he says it really doesn't tell us much although I know opinions differ on that one.
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