Bottle o Tamoxifen
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McKatherine
Sorry not to be answering all aspects of your question - hopefully someone who has taken a Tamoxifen break will come along soon.
My main problem from Tamoxifen was waking up 4 or more times a night because I was too hot. Not as bad as night sweats but hot enough to wake me up.
I have taken to sleeping with the AC on at night (even though it isn't that hot here yet at night). That seemed to help me get some sleep which indeed made me happier and more able to cope at work.
The past few nights I have been waking up hot again so I guess I am going to have to make the AC colder!
It is really hard to cope on little sleep.
Also - I think doing exercise helps with the SE's of Tamoxifen - but I don't know what is advisable for you to do after surgery.
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lonnie713, I finished my radiation in June and had my hysterectomy in October. Hope that helps.
lala1, It's really hared trying to sort through all the info. Ask for six opinions and sometimes you get six answers. I just know from what I went through that the recovery was pretty easy. I was back riding my horse in less than four weeks. (Didn't really mention that to the Doc). Good luck with your second opinion. Jamie
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About to start 8 boosts to finish out 33 radiation treatments and had told myself I would drop of script for Tamoxifen when I reached boost but just couldn't do it yet. Promised myself I would try three month increments and try to keep going for the five years but really not counting the moments to hot flashes. Two sisters took Tamoxifen-one still on. First had no issues but was kind of kicked into menopause with chemo and the other has very heavy periods and pretty moody which is not her normal disposition. Not inspiring me to join the club! Sure hope I am in the group that doesn't have as many side effects. I know Effexor helps with hot flashes but a little nervous about taking something else. Any advice on when to take during day or with what that has helped others would be helpful. Medical oncologist tells me first month or two more symptomatic but then settles down. Would like to make as tolerable as possible.
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lala1........sorry to be so long in responding to your post about the confusion over which way to do your hysterectomy. Here is what I can tell you from personal experience. I had two mid-line incisions........one to remove L ovary and one when I had my tubes tied. (Dating myself as laparoscopy was just becoming the new way. :-) ) Had a laparoscopy later with the removal of the ovary and yes, the body trying to absorb the gas was worse that the midline incision. Then comes my journey with B/C. After completing all of my treatments I chose to have the second mastectomy and a hysterectomy. I was a Grade III and OncotypeDX gave me a breast score of 100. (Not a joke or misprint...100). I told my GYN that I didn't care if she had to climb up on the table & sit on my belly but do whatever to get the most of the gas out as possible. I do remember reading or hearing that there is something that can be used to dispel most of the gas. An hour and a half after getting to my room I was walking the halls X 3 the first day and went home the next morning. I am far from being a young woman but I can be a very determined woman. I was not willing to gamble the "small chance of uterine CA" while on Tamo. My hysterectomy was done with 4 one inch incisions with a vaginal assist.
Please go get a second or even a third opinion before you agree to letting any doctor do a hysterectomy via a midline incision. It takes a very long time for those muscles that are cut through (at a right angle to the incision) to heal completely.
Just giving you my experience and what I have learned. Now we can discuss the BS screw up on the second mastectomy another time :-)
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McKatherine, I too have difficulty sleeping. It is not quite as bad as when I was taking Aromasin but it is nearly as bad. I think that our brains are estrogen-deprived. I take lots of melatonin and that doesn't help sometimes.
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Have2laugh - I have been on Tamox since Feb 24. I don't really have any SEs to speak of. The occassional "warm flush" and staying asleep at night. My periods though are pure heck!!! I had been on the pill for so long with little to no periods so now I am paying for it
. The good thing is they last about 4 days but are very heavy.I was hesistant to start Tamox but greatful for the minimal SEs.
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Me too with the heavy periods, Mrs. Darcy. Also this last one started only 22 days after the first day of the one before. I started Tamoxifen 4/4.
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Wow. Yours are super back to back. Mine are about 30 days first day to first day. But it gets to the point where I don't want to go out during those days. Such fun
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They are usually 28 or 29 days apart, first day to first day, and I was camping when it showed up early. I had to mooch feminine products off my friends.
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Mrs Darcy and Julie -
I am having the same problem with the periods my last 2were 21 days apart and so heavy! Prior to starting the Tamoxifen I was getting periods about every other month due to beginnings of menopause. I'm glad to know I am not alone in the heavy, frequent periods! I definitely do not want to end up with a hysterectomy due to Tami.
Dawn
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I'll definitely track my periods for the oncologist. I have Kaiser and they won't do a baseline transvaginal ultrasound. She did say I needed to get a pap every year, not the recommended 3 years. She said that if I ever have a spot of bleeding between periods, I need ti be checked.
I'm not really sure if the heavy periods are due to the Tamoxifen or that I had my Mirena IUD removed in February after my diagnosis. With the Mirena, my periods were VERY light.
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mrs Darcy, Julie, etc... I have been on tamoxifen since 1/30/14 and haven't had a period since. No other side effects except the missing period.
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Amazing how one little pill affects so many of us the same - and yet so many differently. Like I said though, I am grateful to have minimal to no SEs. I do find the not "staying asleep" at night to be up there with a bigger SE lol. I don't mind getting up early because I go to bed early - but not staying asleep is really annoying. I tried Melatonin - did nothing for me. Tonight I will try one of my "nighttime" teas and see if that works - but then that usually contradicts itself by sending me to the bathroom all night LOL !!!!
At least I can vent this stuff out on here .. and not feel alone in my silly dilemmas
Have a wonderful day ladies 0 -
Downey and NormaJean---Thanks for the info. I got my BS to give me a referral for a second opinion. It's with a group that does all the latest procedures. I'll see him next week and figure out all my options. From what I've read, the laprascopically assisted vaginal hysterectomy (LAVH) is considered to be the best one....cheaper, quicker, less blood loss and complications. That is the one my dr said I couldn't do since I hadn't had kids. The scheduler for my second opinion thought that was not the case so we'll see. Downey....Riding my horse is my litmus test! I have a friend who had an abdominal hx with a vertical incision and she actually rode (albeit lightly) at 3 weeks! In all honesty for me I want the one that gets me back to driving the fastest!! I hate being dependent on others, especially to go somewhere! Norma Jean....I will definitely ask my dr about ways to get rid of the gas. My SIL will be here to help and she's quite the Nurse Ratchett....she'll LOVE forcing me out of the bed!
I'm very impressed with how quickly you were up and moving. That really motivates me! This Tamoxifen is a real pain in the butt. I am one of the lucky ones who have very few SE (joint/muscle pain at night, interrupted sleep, weight gain...well, let's just say no weight loss despite every day at the gym!). I seem to have just started menopause with periods coming every other month or so. And compared to when on BC pills, they are quite heavy. But no pain or spotting so really no issues. Then I suggested a baseline US cause of Tamoxifen increasing risk of endometrial cancer, and look where I am! When my dr read me the report, she said "Well you were the one who wanted the US! Be proud of yourself for pushing. Now we can solve it." I just know I don't need my parts so they are coming out!! I want the lowest risk of cancer as possible.
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Hi ladies -- my period experience with tamoxifen was that I noticed a difference in them right away. I started tamoxifen a little over a year ago. Right away the cycles got longer (I used to get them every 21-26 days, so I was happy when they were 30+ days apart). They were also a lot heavier, but relatively short. One period last summer was so intensely heavy that I had to get out of bed every two hours to change a super+ tampon AND full-size pad! It was like this for about 12 to 18 hours, then tapered off.
All that said I haven't had a period in over six months. I guess I'm in menopause, but it's weird how they went from regular to nothing. I was always expecting the super irregular every-two-weeks thing that I've heard is common in menopause. Maybe the bright side of tamoxifen is I was spared this? I do know my obgyn told me to call her immediately if I ever experience any spotting. So far nothing, thankfully.
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I thought I would chime in on cycles. Prior to tamoxifen I was having regular cycles every 28 - 30 days. Once I started I still had them the first three months but they were significantly lighter then they disappear for a few months and all of a sudden I have one very light though. Just to make sure all was well with that area of anatomy my oncologist wanted my gynecologist to do a ultrasound. She noted the my uterus lining had thicken but she said it could be because I was getting ready to have a period. She did an endometrial biopsy to be on the safe side. It turned out fine. I did have a period in April a week or so after biopsy.
My issue now is every three months when I see the oncologist she wants an update on that. I don't want to keep having unnecessary biopsies when nothing appears to be wrong. I'm currently 49 and have been on tami for one year.
Just wanted to weigh in on this. Anyone around my age that is on tami that still has regular cycles each month. I thought one of the things I read said tami stops menstruating??
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I was quite regular prior to being diagnosed, but I was on
Loestrin FE, every 21 days for 3 days like clockwork down to the time it would
start and stop. I was actually on it with I had my surgery, but haven't
have one since. Not complaining, mind you, but now I told I need to watch
for the unexpected break through. Ok, so I have a question, when I was
diagnosed, I was told possible chemo (turned to definite) and tamoxifen
for 5 years, ask the oncologist yesterday at my 4 month check up and he said
well ya know they have changed the guidelines to 10 years now........so the
question has anyone else started off on 5 years and been changed to 10?0 -
I have had a similar experience to Gemini's regarding cycles so far. Most of my life I was at 31 days like clockwork, but the past few years they were getting shorter and shorter (down to about 23-24 days). Since starting Tamoxifen, they went back up to 31 days, and the past couple months have been more like 33. They've been a bit lighter too, though not what I would call light (my previous were VERY heavy). So far they haven't disappeared entirely though. I was 45 at diagnosis, will be 47 in June.
About the 5 years vs. 10 years question - my MO said 5 years and then "we'll take it from there", so I'm not sure. He seems to think I'll be in menopause by then so maybe he's thinking switch to an AI? I haven't asked him. I'm not sure I agree with him though as I would be 50 and my mother didn't hit menopause until 55 and otherwise we've been similar in regards to age at starting menstruation, etc.
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HI, weighing in on the five years versus 10 on the tami.....I have been taking it for over five years because of being off of it for surgery so many times. My oncologist asked that I continue until I see her next in August. She mentioned then that we would way the pros and cons. I'm so hoping the chips fall on my side so that I can quit taking it. I'll do what I'm told but would really prefer stopping.
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my good friend finished up her five years and was put back on for another five. I think a study came out stating the benefit of 10 vs. five.
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here is the article regarding 10 yrs on tamoxifen. http://www.breastcancer.org/research-news/20130604
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Annette, yes I was told 5 yrs in the being but later I read an article about some women that meet certain protocols are advised to do 10 yrs. Sure enough the next visit to the onco I was advised I should do 10 yrs. instead. The explaination I got from the onco (who is very well known nation wide) told me that women who were E+, P+ and sometimes Hers2+ were at greater risk for reoccurrence once they stopped taking Tamo after 5yrs. Their risk jumped dramatically soon after ending the Tamo at the end of 5 yrs. Women with E- and P- didn't have this issue. I told him sign me up.......what's one pill at bedtime. But then again I refuse to do TM's. After a while he even agreed that on some women that were "high stung" (which I admit I am) can get a false positive. I go twice a year, CBC and Metabolic Panel done and THAT's ALL. To each his own.....it's our body and the patient has choices in their care.
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my MO said since I'm not having side effects, she'll probably keep me on it for 10 years also. I'm 48 and premenopausal. Kim
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hi Norma Jean, what are TM's?
I don't get any bloodwork done by my oncologists. (I wouldn't mind it, but my hospital's position is they don't do it -- not sure if this only applies to early-stagers like myself.). The only bloodwork is at my annual physical, just the routine stuff like cholesterol, vitamin D, iron ... Nothing cancer-related.
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gemini, tumour markers. Some docs believe the test is too unrelieble.
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...jumping in....
My MO (UC Davis) said I would be on some sort of endocrine therapy for at least 10 years -- tamoxifen until we're sure I'm through menopause, then an AI. She said the latest thought is tending toward staying on anti-hormone therapy because of increasing numbers of late recurrences of ER+/PR+ women. Also, she doesn't do any tumor marker tests because of unreliability.
Thanks for all the great discussions!
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My MO still does blood work every 3 months, CBC and metabolic profile. I wonder why they all don't follow the same guidelines...
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I now have a new MO and he does not do blood tests other than once a year either. He will see me again in September after my mammo and US of August. But he is not overly concerned with anything at this point .. so I am going to have to just trust him and enjoy my summer
I am on Tamox for 10 years as well (45 at DX) - and it's what keeps that nastiness away from me, then so be it.0 -
My MO also said 10 years on something. He said he'd keep me on Tamoxifen as long as he could since I do pretty well on it, but that I would be on something for all 10. He sees me every 9 months and does the tumor marker tests and a breast exam. I see my BS every 6 months and get a check up and breast exam. I space these guys out along with my gyn so that I manage to get looked over every 3 months or so. It's alot of trips to the dr but it gives me peace of mind and I usually drop by the fancy mall for a treat for myself!
And as far as Tamoxifen and periods, the Tamoxifen gave me back my usual periods of 30 days apart, lasted 5 days and much heavier than before BC while on the pill. I was regular up till Jan. Had one Jan 1 then not again for 10 weeks and now it's been 8 weeks. I had no break through spotting or particularly heavy periods or painful periods. All of these things are what I was told to watch for on Tamoxifen. I asked the dr if I should do a baseline US. She didn't think I needed it because I hadn't had any symptoms. We decided that if any slots were open while I happened to be in her office, I would just do it. One was open in 20 min so I said let's do it. My dr marked down that my periods were irregular (they were) and that I had crushing fatigue (I did). I'm very happy that I pushed cause I have thickened lining, enlarged uterus, fibroids, enlarged ovaries and ovarian cysts. All tests and biopsies were negative but all these things can become cancer. It's like DCIS in BC. And once you've had BC, you're more likely to develop other cancers. I don't need my "lady bits" anymore so out they will come. Most of these conditions resolve themselves or never become anything but I am ER+ and figure I'll be one of the unlucky ones that has this crap turn into something worse. One thing I've learned through all this is to advocate for yourself. Get educated and then push. I had a dr tell me that I would probably outlive all my peers because my health care was going to be so good after dealing with BC and it's after effects. I intend to prove him right.
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