Bottle o Tamoxifen
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Yes.... I hear you.... We need tape. Like Adhesive tape or duck tape or something...Ha! It's like we have to roll them up to stuff them into our bra's! What's UP with that? I NEVER thought of how I would look at this age!
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biopsy channel seeding ? Is that really a proven fact ? I had 8 biopsies from 3 holes. Hopefully Mx would have then removed any risk ? ( but no rads ). I have something new to ask BS/ONC fret over now ??0 -
No it is not fact. My BS said it doesn't happen, my one MO said it might happen to some people but it doesn't happen to everyone.
Fret is a lovely word. I think we all do a lot of fretting.0 -
sort of makes sense doesn't it
When they did then my brain thought hmmm if you are burrowing into the centre of a suspected tumor and then removing some of it it is no longer encapsulated and what's to stop a few rogue cells ....
I will fret no more it was a necessary test
)).
Yes we do all fret don't we0 -
Hello Tamoxifen Ladies,I just started on tamoxifen this week. I finished rads about 3 weeks ago. I was wondering for those of you with side effects from the tams, how soon after the start of treatment did you notice SEs? I am taking 20 mg in the mornings.
Best to all!
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Hi. Everyone is different! I think its safe to say though that some SE's start quickly and some take time before the drug has built up in your system.
I decided not to keep monitoring myself for changes - I figured when I was having a side effect I would know. Once a day I write down anything I may have noticed that might be Tamoxifen related and then try to forget it.
I want to take that little pill each night and think how wonderful it is that it's protecting me. I want to take it and feel strong - not scared witless that its killing me.
Some of the SE's seem to come and go. I had insomnia but seemed to get over it. Hard to tell cause my cat keeps me up too!
Hot flushes seem to be settling in to stay. Exercise helps moodiness for me.0 -
Something else to think about.....an oncologist friend told me right after my diagnosis that statistically speaking, if he were to compare me to a group of my peers, that I would probably outlive all of them because my health care would be so good from here on out. In other words, don't spend all my time worrying about dying because I'll probably outlive all my friends!! It was an off the cuff comment that has really stuck with me through my UMX and reconstruction. I am getting my new nipple next month and then my areola tattoed on 5-6 months later. I'm going to have a big celebration then. I have actually found my silver lining to all this. I'm much more healthy--used to swear I was allergic to sweating, and now I go to the gym 5-6 days a week. I have discovered little things like massage (did alot of myofascial release therapy) and the joys of waxing my underarms (since it's so difficult to shave the "cave"). I get manis and pedis if I feel like it, take myself to the movies if I want and most importantly, have learned to say no. It's quite liberating to finally be able to say no to those people that want to suck the life out of you! And while I hope and pray that I NEVER have to deal with this again, I look in the mirror every day and admire the new boobies (well, one new one and one refurbished one) that I got out of this. Yes I have pain when I try to wear any underwire so I'm stuck in soft nonwire Bali bras, but I bought about 6 of them in a wild assortment of colors ( I used to only wear beige bras and panties....so boring!) and I wear purple underwear almost every day cause it makes me feel cool. And I show off the cleavage I now have as a result of my new boob and my augmented and lifted native boob. I've become more girly, more touchy-feely, and more likely to break out in song and dance for no reason. If you pass the woman driving the little sports car singing at the top of her lungs, that's me! And do me a favor, crank up your own radio and sing! The scars will fade. Hopefully the pain and anger and worry diminish. Have you ever heard the song Brave by Sara Bareilles? There is a line in it that says "Show me how big your brave is". That's my new motto. From quiet, boring people-pleaser to someone who will show you how big her brave is every chance she gets! I turned 50 in the middle of this whole process and am shocked by how much I am looking forward to the next half of my life as opposed to just getting by through the first half! It is my prayer that everyone discovers their silver lining.0 -
Lala! You sound so fun! Man, if ANYone has a good attitude, YOU do! Yes, I'm much older than you, and it DOES feel good to finally lean how to say "NO"....!
I didn't have a mastectomy.... just a Lumpectomy, and any underwire bra, just drives me nuts! I can wear them, but I take them off as soon as I get home.
You ARE brave! All you ladies that had a Mastectomy! You are much braver than I was..... Best of luck to you!0 -
lala1 - Thanks! I really needed to read that.0 -
lala1, I like how you roll!0 -
hi Drago
I started my T 2 weeks ago
Apart from some minor hot flushes, I have noticed nothing at all. Still early days I guess. But a bounce said - don't go looking for them
I take mine at night0 -
Drago, my oncologist said most people first notice side effects at the 2-4 week point, typically 3 weeks. I would say I didn't notice anything for over a month.
Lala, you have really lifted my spirits! I am going to look up that song and think about some things that will make me happy.0 -
One week and counting........haven't noticed anything except waking up all sweaty in the morning. That could be from my furnace of a husband and actually having to turn the furnace on last week!
Good to know or have an idea of when/if things may hit the fan!
Saw my genetic counselor today. Going to go in tomorrow for the blood work to test for the BRCA mutations. She's also doing a panel to check for several other gene mutations. Will know in 3-4 weeks.
I have 4 daughters, ages 23, 21, 18 and 14. My oldest 2 are already having problems with fibrocystic changes. I am really scared for them.0 -
I started my Tamoxifen today and came on here to see about side effects.
Lala1...you are awesome! Loved your post!0 -
Tamoxifen is a strange drug in that the side effexts are so different for different women. Somehow it seems that if you are overwight when you start yoy are apt to gain and if you are underweight you will loose more. When I got my Dx I was trying to gain 15 to 20 lbs. In three years on Tamoxifen I have lost 50. At 5'9" I weigh 106 fully dressed as of my MO appt. Friday. He is a new Dr for me since my previous one is on maternity leave. He has taken me off Tami and has put me on another hormone inhibitor that is also such an effective appitite stimulator that it is used to treat anorexia. Got to admit I have been spending more time in the refrigerator the last couple of days.
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tague - really interesting you mentioned you get your flushes early in the morning - that's exactly like me. Normally about 5.30am I do get the occasional one thru the day but that's my most common time - spooky0 -
I have been on Tamo since Sept 25th and I have really lost my appetite. I have to remember to eat or I just don't eat. I am finding I am also a bit nautious. I was also put on Effexor for hot flashes so maybe some of the side effects are coming from that but I have only been on Effexor a week.
I could stand to lose some weight but its odd when I am never hungry at all..0 -
LOVE your post Lala!0 -
ndgrrl - The nausea may very well be from the Effexor. I experienced that when I tried to take it. For me, it was too much to handle. As for the weight loss, enjoy it. One of the SEs of Tamox is weight loss. Unfortunately, some gain weight. I have been able to maintain. Hang in there with the Effexor. Give your body time to adjust.0 -
Well went to the Orthopedic doctor yesterday after his own little exam he decided that Dr. Stolier was probably right (about the Tamoxifen causing inflammation) and gave me a cortisone shot in the shoulder. Needless to say after the shot and Halloween, today I'm VERY B*tchy and whining. Also, why why do doctor always feel they must correct you. example: told the ortho all about the bc and my course of treatment and that I had DIEP Flap reconstruction and then he said "No, don't you mean Tram Flap reconstruction". I followed with nope I was there no muscle used and Dr. D definitely said DIEP Flap reconstruction. GEEZE!0 -
Oh well.... don't pay any attention! So much for the wonderful bed-side manner they are supposed to have. I think some Docs try to make us feel like we know absolutely Nothing! Just don't tell him you look things up on the Internet. That is enough to send them into a tail-spin! Then they think we are finding stuff out on our own..... and we are supposed to listen only to THEM!
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I have read conflicting reports about taking melatonin if you have BC. I have been taking 3mg for about 1 month and it is working great but I just read something about hormone sensitive cancers and melatonin that wasn't favorable. Are any of you other Tam ladies using it and did any of you run it by your MO? Thanks ...0 -
Hi Lenn13ka,
I asked my oncologist about melatonin 2 months ago. He researched it and called me to say it is safe to take with tamoxifen. I also have been taking it for 2 months and it is working. What information did you find? Can you share the link?
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I was also planning on starting melatonin next week but at a .3mg dose. I'd would love to hear what info ya'll have about taking it with Tamoxifen. My BC was ER+.0 -
My Mo oked melatonin. I've been taking it with Tami for allmost 3 years. Start with a 1.5 tab and take another if that hasn't put me to sleep in 15 -20 min. most of the time it works well.
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NewBC - Sloan Kettering has an Intergrative Medical section online. It was there that I saw the warning about melatonin and er positive cancers, as it can alter estrogen levels. I was never a sleeper and probably had issues with melatonin already.
Thanks for all your answers ladies. I am going to ask my MO. One frustrating thing for me is the the conventional approach really doesn't look at our existing circulating hormone levels and how we may correct them. We got BC already and with Tam we still have estrogen.0 -
ndgrrl - The tamoxifen made me nauseous for the first few weeks. Then it improved. I take Effexor as well, but T in the morning and E at night. I was always queasy in the mornings after I took T.Tylenol even made me nauseous, but recently I started taking probiotics, and things are much improved. I guess three surgeries last year with mega antibiotics and all the stress really did a number on my gut.
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I have been on Tamoxofin.But since July and for the first month didn't notice too much until the 2nd refill.I know it was the same dose and manufacturers but The first dose I took made me feel like weak and very tired like I thought I was going to pass out.I called the pharmacist and she said I was on the highest dose there was so I decided to cut them in half and only take half in the morning.The difference was amazing I couldn't believe how much I felt like myself again.I didn't realize how much of a fog I had been in for the past few months.I originally called my MO and told her how it made me feel and the nurse didn't like the fact that I wasn't taking the full dose.She wanted me to come in and talk to her about it and possibly switching meds.I think the only alternative is Arimidex.No thanks.I really intended on taking the second dose in the evenings but haven't been able to bring myself to do just that.But I have guilt for maybe not doing the most I can to prevent further BC.
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Josie.... another gal on the older womens thread has always taken just 1/2 dose.... She is doing good.
Just sometimes our team doesn't want to hear what we have to say, or do anything about how we are really feeling.... It's like everything is either black or white to them.
I quit taking it altogether, and I'm still okay.... I couldn't take any more side effects. I'm almost 4 years out now.0 -
Josie, if you're premenopausal, you wouldn't be able to take arimidex or any other aromatase inhibitor. I don't know if there's an alternative to tamoxifen for premenopausal women.0
