Bottle o Tamoxifen
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Thanks, Jeanette
If I can find a small bottle, I'll give it another go. We are heading to a small community tomorrow - don't know if they stock it - nor in fact, if Walmart has it in Canada
Cheers,
C
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I took my 200th tamox last night!!!
What can I say - when I was starting back in July I was so nervous but to be honest it has been fairly ok. The odd hot flush, periods never returned, the worse thing is the aches and pains and my onc is adamant that this is a se left over from chemo (taxol) so who knows.
I've lost over 50lbs since I started - I was very overweight and I have been working hard to lose weight but I was worried that I would not be successful while on tamox but so far so good - although Lady Baritone's story is worrying, I hope everything goes well for you which ever choice you make.
Fear of recurrence is what makes me pop the pill every night!!
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Ainm, congratulations on the weight loss! That's very encouraging!
I think SEs are finally hitting me. No hot flashes or joint pain but I feel constantly crampy and irritable like I do a few days before my period starts. It's the wrong time in my cycle for that- my last period ended about 4 days ago. Sorry if that's TMI.
I'm wondering if anyone has this constant PMS-y feeling and if it goes away in time. I really hate it!
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Hellooooooooooooooo!
LadyB, wishing you the best of luck with your decision and sending you prayers and hugs!
Bonnie, getting more snow? We got about 2", but, it came down slowly in big old flakes. Really pretty. The snow plows cleared the roads pretty well, thank goodness. Our neighbor came down and dug the end of our lane out with his tractor snow blower. It had a hugeeeeeeeee drift in it. Good thing hubby isn't back to work yet. Or, is it? lol
Congrats on the weight loss Ainm!
Hoping everyone's se's disappear quickly and soon! I know they are bad with tamox for some, but, I feel now that we make the right choice by taking tamox.
Have a great day tamoxibeauties!
Love, Susie
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Hi Ladies,
I've not been here for awhile...alot to catch up on! Is anyone else still having chemo brain...I am 5 months post chemo, and still can't remember a thing!!! Also, having my ovaries out Mar 2, anyone had experience with that? I think I will wait for nipples until the fall........too may surgeries!!!
More snow here......sick of it
(praying for sun to melt this stuff!)Linda
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Hello Team!
Bonnie ~ Hang in there winter is almost over!! We'll soon be having that celebration!
I think I'm going to get myself some new shades this year just because! Sparrow ~ That is exactly how I've been the last couple of months... PMSy after my cycle... really bizarre!! My hubby has been sooooo patient with me, such a gem!!
Susie ~ How absolutely romantic! Your hubby is a definite keeper and then again you are too!
Linda ~ Wishing you all the best for your surgery on Mar 2. Please let us know how it goes and how you are doing!
Jeanette ~ How is StillVerticle doing? She has been on my mind! mmmmm that icecream/aloe smoothie sounds good.
Hi Harley!
Have a lovely evening all!
Hugs,
Kelly
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Hi, you wonderful girls! SV is doing better....she has her fun sense of humor back, Ha! And I KNOW! Ice cream is good with anything!!!!!!!!! But I don't use it in the smoothie....I'm having a hard time on Tamoxifen, trying to lose weight! Also, my DH thinks "they did something to me when they operated!"....Because he thinks I am crabby now!.....And I KNOW I get pissed at him when he is a jerk, but is it the Tamoxifen? I never used to say anything, but NOW I do, Ha! And what do you gals think.....should I stay on Tamoxifen, or try the Femara next month? What have you done?
And Ainm....how did you lose the weight? Tell me! Love you girls! xoxoxoxo
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Hey Kelly
Good to see you all... hope you are all having a great day!
Harley
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Just doing a driveby tamoxibeauties!
Have a wonderful day!
Love, Susie
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Just a few questions for you ladies..
1. Do any of you ladies get either Zoladex or Lupron injections along with your Tamoxifen or have had an oopherectomy?
2. Were any of you given the choice of taking an aromatase inhibitor instead of Tamoxifen, but chose tamoxifen? And if so why did you choose tamoxefin?
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Micheleboots:
I had an ooph before beginning Tamoxifen (reason for that was because I am BRCA2 carrier, so it was always planned to do it eventually and in doing a pelvic ultrasound, they found a mass - turned out to be endometriosis -thank goodness -but that was why I had the ooph immediately after chemo).
So, then, yes, I had the choice between Tamox and AIs. Onc said really, could do either and there are not studies in all combinations of a few years on each. AIs do give additional benefit in preventing recurrence apparently, but they said in their practice, they see a lot more people having difficulty with the side effects of the AIs, particularly younger women. So, our plan was to do the Tamox for probably 2 years, then switch to AIs once my body has gotten used to this lack of estrogen. Hope that helps!
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Michelleboots: I started tamoxifen in Oct and had ooph in Dec at the recommendation of my oncologist and BS. My tumor was 90% ER receptive. I did not have the BRCA gene but did have "2 variants of unkown significance" on my genetic testing. I also have a very strong family history of premenopausal breast cancer. My doctors strongly recommended the ooph. I chose to also have a hysterectomy at the same time because I didn't want to have problems down the road --bleeding, uterine/endometrial cancer, etc. I will be remaining on the tamoxifen but I'm not sure when I will be switched to an AI--no specific plans to switch as of right now. I am tolerating the tamoxifen very well--only having a few hot flashes.
TCK
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Hello Ladies,
Just dashing through!
MICHELEBOOTS ~ I wasn't really given a choice. I'm pre-menopausal, no family history of bc and BRCA was neg... so I just had the blood test to see if I metabolized T and away I went!
Gotta run!!
Hugs to all
Kelly
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Hey T-Buddies I am m sorry I havn't post lately I been having some boo-hoo days.
I appreciate reading your post It help me get thur rough days!
I am now 18 day post -op today & still have both drains too . They driving me crazy, But still haveing 55 cc in one today. I can't figuire it out. The surgeon wont take my out til under 25cc & he wont start filling expander until both drains out.
Are any of my TE friends having Rib pain. The expander is causing sharp pain in my ribs. Sleeping on my Back doesn't help I am trying pillow for sl releif.
I have been on Tamoxifen for 1 week now. I woke up with a bad head aches & have had it all day & actually been in bed most of the day because of it.I am not sure if Ihaving this as a Side effect, or just a bad day. also my eyes have been dry too
I do hope you all are getting stronger every day!
Hugs to all
Gina
Regina Robinson
Diagnosis: 12/16/2009, DCIS, 5cm, Grade 3, 0/6 nodes [Edit] [Delete]0 -
Morning girls! this might sound stupid, but what is "Ooph" or oopherectomy? And I was told by both my Breast Surgeon and the Radiologist, that after the radiation I would be on Tamoxifen...I went to an Oncologist, that I didn't care for, (because he wanted me to do chemo) & he put me on Tamoxifen....( He did order the "test" to see if I needed chemo, & it came back that I didn't! )
But when I went to the NEW Oncologist, SHE said to start the Femara, & gave me 3 bottles to start....I still have about 1/2 a bottle of Tamoxifen to take....(1 1/2 months) and in the mean time, I go see the Radiologist for a "check-up" & I'm going to ask her....
I looked on some of these threads, & the posts on "Femara" were about terrible joint pain, and some with hair loss, & it being harder on your bones than Tamoxifen, which is actually easier on your bones! So I'm watching this thread with you gals, to help me decide! Jeannette
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Chevyboy: Oopherectomy is surgical removal of the ovaries--sometimes done in women who have ER+ bc. I had it done in Dec along with hysterectomy. My onc is leaving me on tamoxifen for now though. It seems that many onc's do go ahead with the AI's. My understanding was that if you are post menopausal to begin with that they usually go straight to the AI's. I'm sure you will get more input from others here.
TCK
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Hi Hannahbearsom - I've been meaning to send you a PM to ask your opinion on above topic. As a folow up exams (so many!) I did a pelvic ultrasound and they found a solid mass in my right ovary. I am supposed to see the GYN this Friday but I already can tell he'll suggest removal of it! I am seriously thinking of removing EVERYTHING while he's at it, but I must say that I'm a bit scared of all the side effects that come with it. Making a decision for BLM now seems easy compared to this one.
These are the major symptoms I'm worried about: constipation (I already have it bad now due to IBS), dryness, lack of libido, dry skin, short life -I guess this is a big one!
I'd love to know about your experience and if you have had any effects so far. Thank you -Erika
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Kelly, thanks for that. I'm sorry you're dealing with the same PMS at the wrong time thing. I don't feel like such a weirdo now.
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Erika09: My onc and BS both recommended the BSO because of my 90% ER+ tumor, strong family history(maternal grandmother, mother-who did not survive, and sister-w/recurrence) of premenopausal BC and genetics. I had genetic testing done and it was BRCA negative. The geneticist still feels that there is a likelihood of a genetic connection though. I have what was called "2 variants of unknown probability" on my genetic testing results. So there is something different in my genes but they haven't figured out what the importance is. Based on this info and the advice of the geneticist, oncologist, and BS, I decided to have BLM. After the BLM and final path reports, the BS and onc both said I would be on tamoxifen for 5 years and they then recommended the BSO to further reduce my estrogen levels. When I met with my GYN surgeon, he said that I could go with just BSO or BSO/hyster but he seemed to think that BSO/hyster was probably the way to go. So I met with my longtime OB-GYN, and after talking with her about my history(not really too many GYN probs-1 abnormal pap and monthly bad cramping) and the potential problems with tamoxifen, she recommended that I have it all out. As she put it, "After you have finished with your treatment/surgeries for bc and recon, you are not going to want to be in doctors offices any more than absolutely necessary, and with the tamox, people do have bleeding/thickening issues which require ongoing medical care."
I am very comfortable with my decision and have not really noticed any difference from how I felt with just the tamoxifen. I had been taking it for about 6 weeks before I had the BSO/hysterectomy. I do have a few hot flashes usually at night. I haven't noticed any particular change in skin dryness--mine usually is dry in the winter. No problems with constipation. As far as dryness and libido, my husband has been gone on Air Force Reserves training since my "pelvic rest" restrictions were lifted so I can't really address that for you
. Hopefully I haven't been too longwinded. If you have any more questions feel free to PM me.
TCK
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Thank you, TCK! All your information is very helpful!
I'm ER+ 80% and PR+90%, tested BARCA1&2neg. and I do not know of family history of pelvic/ovary cancer but BC is high with mother and sister....I guess it my be a bit drastic decision if no genetic probability for me, and I'm kind of jumping ahead here, getting prepared and educating myself about it before I see my gyn! I'll see what he has to say tomorrow! It is a much bigger deal than deciding on BLM.
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Good Morning All,
Jeanette - I am post menopausal and my onc expects me to be on Tamoxifen ONLY for five years. (I am keeping watch on what might be better though.) I guess my diagnosis suggested this was the best course of Rx. I am happy(ier) as T is way better for my bones - and I tend to osteoporosis.....
vaginal dryness - ladies, ask your doc for Vit E suppositories (800IU). Messy but do the trick....
All well here on the West Coast of Canada. We are opening up our cabin - a lovely sunny day - and I may get the primula I just bought yesterday into outdoor pots
(having left the snow behind in Calgary!)Take care all - have a great day (aren't the Olympics something else...we are just 90 miles north, but 4 1/2 hours by car - two ferries, so we are only getting to see it all via live streaming - no TV but exciting all the same. And SO unpredictable.)
C
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Regina - I have te's, and yes, had at least 5 bouts of sharp, severe rib pain in the very beginning - pain that took my breath away & ended up in the ER twice. I've also been sleeping on my back, maybe I'm just used to it now. It's funny you mentioned that your eyes were dry - I could barely open my left eye after surgery, it felt sooo dry and "stuck". I tried to drink lots of water to help flush out residual anesthesia, and eat lots of healthy foods to help the body recover. Wishing you the best & hope you get those drains out soon!
Erika09 - very sorry to hear the news, but wish you the best in your decisions.
xo, E
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Hi Gals, Thanks for the post.I feel so Blessed to find this site,I appreciate what everyone says & have learn alot from all of you.I haven't posted much lately due to crying spells.
I went to Surgeon today, I did get one drain out but still have one that still drainge is 50ish in 24 hrs, So He won't do 1st filler until both drains are gone. I go back next week. I been very boo-hoo today some may be cause of being 3 week post-op & still haivng gotten my 1st filler & I am still having bad rib pain from expander & sleeping on my back is hard. I am just not recovery as fast as I want. Have to get back to work soon my vac is running out. Plus I am now on Tamoxifen 1 week now.( for 5 years) so it may be making me moody.
I hope all of you are doing well, feeling stronger every day!
Prayers & Many Thanks .Gina
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Hi Regina:
I didn't get any fills into my TE while the drains were in but I can imagine it is not comfortable. I'm a side sleeper myself, but still am sleeping mostly on my back after surgery January 7th! Try to prop some pillows under your arms some and that might help. I had one mx (left) and can sometimes lie on my right side with a BIG king size pillow between my knees and it goes between my breasts to cushion and then I take a little pillow and put under my left arm so my arm doesn't hit my sore breast tissue.
I always end up on my back at night no matter what I do though. I know it will get better. Just keep that in mind.
I've been on Tamoxifen since the end of January and am also crying a lot over absolutely nothing. I ended up going back to work the day after my last drain came out. That was 12 days after surgery counting weekends! I think I went back too soon myself. I work in a small office though and sit most of the time so my PS said it was ok. Of course it made taking my pain meds hard.
I'm still not driving myself, which makes me cry too....it doesn't have to be anything important to make me cry. It's almost like being pregnant when I cried all the time over Kleenex commercials!
You will probably find everyone at work is understanding and willing to help you anyway they can. Hang in there!
The years of Tamox will last way longer than the recovery from all this surgery stuff. 0 -
Hey Gina,
Hang in there girl! This too will pass - damned annoying at the moment. Nothing is predictable in this game for any of us.
xo from Western Canada
C
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Wouldn't you know it...hubby goes back to work after being home for a few days and I get a bad headache. Arghhhhhhhhhh Tamox..make them go awayyyyyyyyyyyy!
Have many of you decided or had your ovaries removed as a precaution?
Ok, that is the ? for the day! Have a good nite!
Love, Susie
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susie - I thought about having my ovaries out as a precaution but since I was BRCA negative I decided not to. I haven't had a period in almost a year but they didn't consider me post menopausal when I started Tamox. Still having quite a few joint aches but nothing else major. Hopefully the joint aches won't last the whole 5 years.
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Hi Tamoxibeauties All,
Susie...I loved the "drive by" you did. I do "drive bys daily" as I'm sure most of our active members do. We got about 8-10 more inches of snow since I talked to you before. We have a drip in our bay window now caused by ice. Had a roofer come to check it (we do have a new roof) but he said it's not roof related and we just have to wait until the ice thaws. He said to report it to our homeowners and "get on the list" because he says there is going to be lots of that type damage because of this goofy weather.
Kelly....I'm hangin in there girl waitin to wear my shades. LOLOLOLOLOL My glasses turn to shades in the sun and I love that. I actually like it much better than sunglasses.
Gina...wonder if your doctor would let you take Tamoxifen after you're feeling better from everything else you're dealing with now ??? Maybe 3 or 4 months from now? I know most of us on here waited a couple months before we even opened our bottles. LOL
I think the Big T definitely does a number of your emotions until your body adjusts. I had the "meanies" and the "sniffies" for a good 2 months and still take spells of it on occasion. I find myself speaking up in situations I might not have done so. And sometimes I speak up a bit TOO much. LOL
Bonnie
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Regina - I had my drains for 6 weeks. That is obviously not normal but it does happen. At least my doctor warned me it could happen so when it did I wasn't surprised. I kept them in a fanny pack and pinned them to a lanyard so I could shower. I found ways to get around with them. It was a very happy day, though when they came out! I wish for you that day to come SOON!
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My oncologist told me that I didn't need to take Tamoxifen (if I was hesitant about it) since my periods stopped after chemo. He termed it Chemo induced Ammenorhea and cited the Zebra study. Has anyone else ever heard of this? This study shows that women who were pre-menopausal before breast cancer but who went into early menopause from chemo, had the same reduced recurrence rates and survivals as the women who take T. Granted, the sampling seems to be small, but as my doctor says, we will never know with the T group of women because, well, they were taking "T"! They may have faired just fine without it as the study revealed.
Never heard of that before. He admitted that in the US it is not the standard of care but it is widely practiced in Europe. He is a military doctor (not bound by standanrd of care and insurance practices by the way), works closely with NIH and National Cancer Institute. He says until the FDA comes on board with some of the European studies, Tamoxifen will continue to be the standard of care but only because doctors have nothing else in their arsenal and admitedly know very little about women's health (oncologists treat ALL kinds of cancers.)
He strongly believes that my taking birth control pills for 13 years prior to my dx is what contributed to me bc . Of course I am not flooding my system with those hormones anymore. He says my personal greater risk comes from the Her2 +.
He is hoping to get some studies performed here at NIH which will track this in women here in larger numbers.
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