Bottle o Tamoxifen
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Hey Harley!!!!!!!!!!!!
9 days!
Hugs girl,
Trish
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Harley - Wow ! You're into single digits ! Doesn't that seem simply amazing ?
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Hi Everyone!
Susie: I LOVE that kitty cat and I bet you felt like that about the grapefruit and Big T !!!!!!!!!
M~~ Let me echo that I, too, enjoy the links you provide us. Thank You.
Buggie~ Oh I bet we all wish we knew the answer to that one. But it's just a decision each one has to make for themselves. I did lots and lots of reading and came to the conclusion that in my case, it had more positives than negatives by a long shot. But each diagnosis is a bit different and some benefit more than others. A tough decision for sure. Guess that's why lots of us LOOK at our bottles for a while before we start Day One.
M~ Can you offer anything more concrete for her?
I'm getting back most of my energy now from "whatever" I had. Since I didn't go to the doctor, I'm not positive what it was but think it may have been a bad cold that went into sinus problems.
Can I trade my rain and high winds for someone's sunshine and fair temps?
Bonnie
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Hey DebbyM! My doctor started me on Zometa in September. I'll be getting infusions every 6 months for the rest of my life. It has now been approved for use in reducing the risk of recurrence of bone mets in pre-menopausal ER+ women who had Stage 1,2, or 3 (locally advanced) breast cancer. Bone Mets are apparently the most common type of recurrence that can occur after a breast cancer diagnosis.
The infusions only take 15 minutes. You can have them run it longer if you wish.
The first (only) time I got it, I was fine until that night. I woke up with what I thought was a hot flash but it was really a low-grade fever. I went back to sleep and woke up the next morning with a fever of 103.6!
I called the doctor on-call (it was Labor Day weekend) and he said to try Tyelenol and that if it didn't break my fever in 6 hours to come to the Emergency Room. They were really concerned about me because I had just had my mastectomy 2 weeks prior and I still had drains in. They were really thinking I had some horrible infection.
Well, my fever didn't break and I went to the ER. After taking my blood and running cultures they decided to admit me (out of an abundance of caution).
Now mind you, one of the MAJOR and FIRST side effects listed for Zometa is high fever and flu-like symptoms! I asked if it could just be a reaction to the Zometa and I was poo-poo'd by the doctor on call. He was SURE I had some dread infection lurking about. So he admitted me, and because my counts were so low (post-chemo and post-surgery they WOULD be) I spent the WHOLE HOLIDAY WEEKEND IN THE HOSPITAL! I was so pissed!
My doctor returns on Tuesday after enjoying HIS long weekend, took one look at me and said, "Oh, you just had a reaction to the Zometa, you can go home today!"
I was livid! I mean, I understand being cautious, but really.
So I say all that to say, be aware of the side effects and know that a high fever and feeling flu-ish is very common! My oncologist said with Zometa "The first time is the worst time" and I should not have such dramatic side-effects when I get it again in March 2010.
Alaina
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So Zometa is only for mets? I guess I don't know anything about it either. I will do what you told Debby to do MTG and do some searching of info.
Welcome Buggie. I just started taking tamox a few days ago. I also just stared at the bottle for awhile, but, then decided to hop on the tamoxitrain and try it. So far, I am doing ok. I figured if the se's ever got horrible, I would just stop altogether or just for awhile. That is always an option.
That kitty pic made me laugh Susie! Thank you!
Ditto to MTG. I love your posts and love the website links. I appreciate them too.
Hope you feel better Alaina and Bonnie
Almost done with tamox Harley! That is so great! We will have to celebrate BIG with you!
Lex
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Doing a fast driveby! Got lots to do today!
Good Morning Tamoxifriends! Hope you all are doing great today!
I want to welcome you Buggie! I was very hesitant to take tamox too, but, finally did. I am not sorry that I am on it. I felt I needed to at least give it a shot. I want to do whatever I can to prevent bc from ever coming into my life again. I had a lumpectomy and radiation treatments, so, tamox was next on the list. Feel free to express yourself on here. We are here to help each other.
Hoping that you are better Bonnie! Need more chicken soup? lol
Susie
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Buggie - If I were you (and I kindof was/am), I'd first get a general feel for the big picture re: Tamoxifen - the good, the bad and the ugly - by reading BC.org's summary on Tamoxifen: http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp. If you want more overviews let me know and I'll find some for you.
The next thing I would do is make an appointment for a consult with my gyno. He can tell you what your potential risks are re: Tamoxifen ("T") in light of your specific gynecological medical history (cysts, polyps, bleeding, whaterever).
In my book, the first 3 issues to think about are (1) the potential gynecological side effects (and there are many; thus the suggestion above), (2) possible eye issues including cataracts, and (3) possibly stroke/ blot clots (always minimizable with a daily baby aspirin). As far as I can tell - and it's best to check this with your doctor - these are the only 3 side effects ("SE") which can be permanent; the others, if they occur, all seem to go away once one stops taking T.
Once you've wrapped your head around the 3 issues above, if you're still thinking about taking T, then you can consider the other SE - for some they are minimal, for others unpleasant and for still others, the side effects are a real bitch. But again, you can always stop taking the pill. For this reason many taking T, take a wait and see attitude.
Educate yourself - learn the upside and the risks/ downside. Ask questions here and of your doctors.
I hope this helps.
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Brenda, the CYP2D6 test is to see if you metabolize Tamoxifen. Your oncologist can get it for you. Just ask him if you want it. Some have it done and some don't. Some oncologist's will recommend it and others won't. See what yours says if you want it.
Still have an upset stomach today UGH
Debby
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Debby... thank you. I hope you feel better.
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Alexis2u asks ~ So Zometa is only for mets?
Originally it was. Now it has been approved for pre-menopausal women who have/had Stage 1, 2, or 3, ER+ breast cancer.
I don't have mets. I'm Stage 3b. But I am pre-menopausal and had ER+ tumors. I will still get Zometa for the rest of my life to help reduce the risk of me getting mets to my bones.
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Alaina,
Zometa is used for bone mets, yes, but it is also used in conjunction with the AI's, because they can cause low bone density, and it is my understanding that Zometa can help our bones. If you are taking Tamoxifen, you probably don't need Zometa, though, because I thought that Tamoxifen was supposed to help the bones.
This is a short version, and I don't have an explanation about WHY any of this works.
Harley
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Trish and MTG:
Thanks!!
I must have mis-counted... After tonight, I will have ONE MORE WEEK!!! so ... I have 8 more Tamoxifen pills, and after I take it tonight, I'll only have SEVEN more left!! YIPPEE!!
I will have a huge celebration next weekend!!!Hugs
Harley
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WOW WOW WOW Harley! Only seven after tonight! You must be sooooooooooo thrilled. I know I am for you! Let the fireworks begin and the corks pop! Celebrate, Celebrate! So, what do you think you will do to celebrate this wonderful happening? You have to let us know!
I thought Zometa was for mets and if you take the Al's. I didn't know that tamox users took it. I was never offered it by my oncologist. hmmmmmmmm
Still no headache! YIPPEEEEEEEEEEEEEE! I am praying that they are gone, even if they weren't horrible, horrible.
And, no other side effect yet. But, maybe it hasn't been long enough?
My gf and I did some shopping today. The stores have really reduced everything. Ofcourse, I buy something for someone, then I buy something for me. You get the idea! lol My hubby just laughs! Glad he does, since he is paying for all of it!
My hubby and I went to get our eyes checked together before I met my gf to shop. Everything was fine. I read where some of you, even Bonnie, have had some eye problems? What should I watch for?
Susie
This is a cutie!
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Off to South Floorida tomorrow, horray...or ahould I say Yahoo !
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LOL @ the picture Susie posted! I really like your giving us a laugh or an aw for the day! Thanks!
Harely, OMG, you are almost done! Want to trade places? You take my tamox and I will be about done? LOL congrats!
Have fun MTG!!! Need someone to carry your luggage? Maybe my husband will let me help you out! LOL Enjoy!
Jeanne
p.s. how do you get something above your diagnosis on here? i wasn't for sure where to post it at. thanks
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I wonder why my onco never mentioned Zometa for me.
And, I seem a lot more tired since starting tamox. Could that happen or am I just "more tired?" I think my mind is playing tricks on me. I am still scared of this tamox, but, I know I need to take it. Need some reassurance I guess.
Someone here was talking about leg cramps? Here is something about that from Mayo Clinic
http://www.mayoclinic.com/health/night-leg-cramps/MY00410
Night, Lex
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Hi Everyone !!!!!
Susie.....SO GLAD YOUR HEADACHES TOOK A HIKE !!! We'll cross our fingers and toes that it continues for you.
I have "dry eyes" from the Tamoxifen. I use the artificial tears and that's where the Omega 3 fish oil cap began. Dry eyes are no biggie, but they can be uncomfortable and do need some "fixin." LOL
M~ Wish I were going to Florida. It's 33 here.
Lex~ I haven't heard it mentioned too much by our crew, but tiredness is definitely something that can bug you on Tamoxifen. I also take other meds that do the same and thus I've sort of had to learn to deal with it to some extent. I'm just happy to be feeling "almost" myself after this undiagnosed bug of mine. LOL Didn't go to doc so don't really know for sure what I had. LOL
Love that bunny. He's so sweet. Have A Great Day !!!!!
Bonnie
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Thanks Bonnie! It might just be a normal tired and not have anything to do with tamox. I haven't been on it long enough to really have se's, or, so I thought.
I want to go to Florida MTG! waaaaaa
Susie, that bunny is cute! Thanks for another smile!
Lex
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Harley,
Hooray for the new math!! Way to go - only 7 more.
Hugs girl!
Trish
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Susie, and all,
Hi there. I don't think anyone who is taking Tamoxifen needs to take Zometa, it's really for bone mets or the AI users. I think it's supposed to help the bones, and may prevent or treat bone mets.
Aww... thanks for the celebratory wishes! I don't know what I'm going to do to celebrate... but it'll be a celebration that lasts the entire WEEKEND!! and it may involve a drink or two...
Jeanne_D-
No, I don't want to trade places with you... sometimes it seems like it took me FOREVER to get to this point... someone else pointed out that I am almost halfway to the 5 year point... I can't wait...
Trish,
Are you at the two year mark, too?? Funny, when I was in school, I HATED the 'NEW MATH"... but NOW, I LOVE IT!!! LOL
Hope everyone has a great weekend!!
Harley
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Harley,
I started my rx for tamox in Oct of 2007. Looks like all my se's have faded to the wayside except for an enlarged uterus and an ovarian cyst. I had a D & C done in October, but the lining grew right back to its humoguous (sp) size. Looks like I'll be having a hysterectomy at the end of the year - not sure if I'll keep one ovary or not (since my only side effect causing me issues will be gone/uteruse) and that way I might be able to stay on tamox for the full 5 years. I meet with my gyn next week, so I'll let you know how it goes.
Have a wonderful weekend!
Trish
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Hi everyone! I hope everyone is having a good day! It is so beautiful here. It is cold and crisp outside and every now and then, a beautiful, perfect snowflake comes floating down ever so slowly. It is just so pretty! Hubby is home today and we have been doing some xmas decorating. He has even helped me some on the inside! YEAAAAAAA or YAHOOOOO! lol He is outside now putting up some decorations, so, I thought that I would log on and post a little.
Even though my Mom passed away and I miss her so much at the holidays, I always carry her in my heart. There were some xmas songs that were playing today, and, every now and then, I would shed a tear or two, or three for her. But, I know she is in Heaven with Daddy, healthy and with him again, so, I try to focus on that.
Harley, I can't believe you are almost DONE! WTG girl! I am so happy for you. I hope you will still hang around here. We would miss you.
Trish, let us know what your doctor says.
Glad you liked the picture Bonnie! I can see you smiling! lol Feeling better?
Yea, I didn't think Zometa was for me, since I was on tamox. Thanks for clearing that up!
Ok, later people!
Love, Susie
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Harley, Great news only 7 more to go. Hope you are having a party and celebrating.
My pink tamoxifen party is scheduled for April 25 2014, and I will be the one wearing the pink tiara.
Hugs
Viv
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What a fantastic site!! I love the comradely interaction between all! I was diagnosed in May had a bi-lateral mastectomy in June, I did not need chemo or radiation but of course I am on Tamoxifen. I started in October and find that I am fine so far, however I am late for my period. I googled tamoxifen and irregular periods and (I am happy to say) this is the site where I landed. Thanks for all the intersting input!
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Harley,
My doctor has me on Zometa and Tamoxifen.
I was also told to take Calcium and Vitamin D daily, a requirement for the Zometa.
I'm getting it to prevent bone mets. Every 6 months for the rest of my life.
Alaina
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I love that pic Viv! All of the pics that are posted here have been so funny! We need laughter in fighting this horrible disease. So, thanks for all of the laughs!
How are the rest of the Tamoxiteers doing? I am doing pretty good today, actually, I am doing fine today. I hope that continues. No upset stomach like I had.
Welcome kcl65! Welcome to the tamoxitrain! Late for your period? I think tamox can do that,right?
Debby
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Trish,
Oh, then you are AHEAD of me! I didn't start board the Tamoxi Train until... let's see... I think it was Nov. 18th, 2007.
Please keep us posted, ok? You and I BOTH have dr. appts. next week!
Alaina
Now I'm confused, cause I haven't heard of anyone taking Tamoxifen also getting Zometa. I guess EVERY dr. is different. Somehow, that annoys me. Do they know something that MY onc doesn't know?? Anyway, I'll probably bring it up in my appt. with my onc. next week.
Have a great weekend, beautiful ladies!!
HarleyThanks Susie! I'm counting down, every time I take a pill...
Viv,
Love the pic!! It's so funny!!
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Hi Debby,
Thanks for the welcome! Sorry probably TMI for first post, but that is how I found this site...lol.
Glad your stomach is doing better!
Kelly
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Yeah (or Yahoo) Debby on the non-upset stomach. I wonder if the second one was because you had a T in the am and a T that night in order to get started on the switch?? But who cares? The NB thing is no stomach upsets for you and no headaches for Susie.
Hi KC - yes, this is a crazy site. Lots of laughs, lots of good info, lots of support, TLC and compassion. We are all on this train together regardless of what country we are in.
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