Bottle o Tamoxifen
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No, she did not share her cancer experience, not that I recall, she has only 9 posts and 4 were direct insults to Rachel. Instead of attacking someone just because you have a different opinion on a subject, find facts to back your opinion.
Yes even on Tamoxifen, I think my risk for recurrence is still about 25%, since I have the BRCA2 gene mutation. Tamoxifen cuts my risk 50% and having my ovaries removed cut my risk 50%. With BRCA2, I was told my risk for recurrence was 87%, Tamox cuts that to 43.5% and the ooph cuts it to 22%, a number more encouraging than the 87%. So even on Tamoxifen I can still get a recurrence, would it be because tamoxfen was not effective, slim chance maybe, but I would not blame that, it would more than likely be due to my BRCA2 + results.
As with any medical treatment, the CHOICE is ours to make!!!!! I chose to fight this w/ evrything available. I know I have said it too many times, but I will repeat it again. MY mom was only 29 when she died from ovarian cancer 32 years ago. her doctors took a wait and see approach, because at the time there was not enough research and treatment options. I can live with the minimal se's since they are se's I would probably have anyhow, since I was close approaching menopause anyhow. Hotflashes, night sweats, insomnia; all part of normal menopause.
OK I will come down from my soapbox!
Different opinions are always welcome, all riders are welcome, and anyone just wishing to hangout are welcome, but we do not take kindly to personal attacks on another riders appearance. That is so mean!
To all, have a great weekend.
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Can't we do something to discourage food and cosmetic manufacturers from putting soy in everything? I realize it is government subsidized and is cheap and therefore big business, but I'd prefer not to ingest it in any way. I'm on Tamoxifen and I've read eating or using soy invalidates it. Cosmetic companies should be made to list all the ingredients in their products. I'm shocked at how many things I buy that has soy in it--Peanut butter, ice cream, Worcestershire sauce, mayonnaise, most soups and salad dressings, phony butter and many frozen vegetables and dinners. It's in most of the makeup bases we use every day, so I think we can safely say we are eating estrogen or smearing it all over our faces daily. What good is an estrogen blocker when we do this?
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Yself, you're right, that soy is in everything. The women on the natural girls thread frequently share their sources when they come across a brand or product that is soy free. That might be a great place to check if you are trying to limit your soy intake.
If someone is still trying to make the decision to use Tamoxifen or not, there are other threads that are better suited to their needs and answering their questions that will help them make the decision that is right for that individual. This thread is geared to the needs of people who have already made the decision to at least try Tamoxifen
I didn't say you need to be taking it. Many women take their time starting once they've decided to start, and they have been welcomed here. There are just better places to get the answers and information you need as you are trying to make that initial decison.
Susie09 wrote:
I never thought I would see the day that bc survivors turn their back on another bc survivor. Just because I don't take tamox now, does not mean that I will never. I just choose not to at this time. So, now you say I am not welcomed here?
If you are here to get and give support to women who are taking tamoxifen, then welcome. If you are here to incite problems and attack people, please find someplace else to do that. We can only guess at your intentions by your actions and your words to other women.
MTG wrote:
don't forget that seasoned runners will often work out with newbies just to share their knowledge
Of course if the newbies go out of their way to hurt or insult or injure those seasoned runners, they find the sharing and the help stops pretty quickly.
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PatMom wrote: Of course if the newbies go out of their way to hurt or insult or injure those seasoned runners, they find the sharing and the help stops pretty quickly.
Agreed. Now you, Rachel, Renee and any one else: Please feel free to read MY posts and see if anyone can say that about me ! (And while you're at it, perhaps check out Rachel's responses to me.) I'm about to start Tamoxifen in a few weeks and want to learn from those who've already been on this thread, share my thoughts, and have questions and concerned addressed. And I, like those before me, have the right to "come in, look around, visit a few cars and ask questions before I decide whether or not to buy a ticket."
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And by the way, here are at least a couple of women who stopped in PRE decision to ask questions and wer'en't told to go elsewhere. No gatekeeper, exclusivity or censorship used to exist on this thread.: And it's time for it as well as the personal attacks to stop.
Dec 29, 2007 03:02 am kagaines wrote: I have to tell you, reading some of your experiences here with Tamoxifen is giving me pause for my upcoming boarding on the train. It sounds like alot of its side effects are going to be nothing more than aggravating other conditions that I already have, but in the grand scheme of things, it's almost like picking the lesser of two evils, I guess. Weight gain? Wonderful. I don't have a thyroid so all I need now is yet another pill to add to the mix of things to increase the waist line. My doctor is pretty set on going the Tamox route but I am going to ask her if there are any other options available and I guess go from there...I will be sneaking on the this train around the end of next month provided I have no more delays in rads....
Dec 29, 2007 06:20 am Lolita wrote:
I have been trying to make up my mind about the tamoxifen for several weeks. It was strange to me that the onc didn't just give me a prescription to get it from the pharmacy when I was ready, but the tamoxifen was sent directly to my house. There it sits in my medicine cabinet. I'm going for a second opinion at a cancer center next week, and I guess if they recommend it, I'll start taking it. I'm not worried about the weight gain or hot flashes, just scared about the thickening of the uterine wall, fibroids, and the small possibility of uterine cancer. I'm such a worrier that I feel like I'll evenutally just wind up with a hysterectomy if there are too many scares.
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All - It's funny how on this site since most of us know people only by their posts. We - myself included - judge them by those posts and until a relationship is developed, the last thing they've said defines them. This is especially true of me since I don't yet have a accurate feel for all you ladies on the Tamoxifen thread.
I was judging PatMom by her comments re: "This thread is geared to the needs of people who have already made the decision to at least try Tamoxifen" and I acknowledge I have a special sensitivity re: what I took as a sort of private club status. (Hey I even joined the cub scouts as a kid; they did cooler stuff.) PatMom pointed out to me that she actually addressed my question about manufactures. Looking back at it, I see she did it patiently and accurately. I appreciated it then and I appreciate it now. Had I realized that both comments were made by the same person I would have reacted differently. In context, I dont believe that she meant to imply that this thread has any exclusivity/ gatekeeper/ secret password type club status. I believe now that misread PatMom's intentions and I APOLOGIZE ! Again, I appreciate the lady who wrote this:
Oct 24, 2009 01:02 pm PatMom wrote:
MTG, every time I refill my prescription, I can wind up with a different manufacturer. That is what happens with generic drugs, the pharmacy goes with whichever company is giving the best price on the day they place their order.
I prefer the pills from Teva, the ones from Watson labs seem to dissolve more quickly and have a bitter taste if you don't get them down fast enough, but that is a very minor issue.
The few women who have had issues with rashes could easily have had a sensitivity to the binders used by various manufacturers. I am prone to reactions, (eating pez or necco wafers guaranteed me a sick day from school till they figured out the rash wasn't contagious) and haven't run into any issues on that front with any of the formulas. IF you develop a reaction to the pills from a specific manufacturer, you can have your doctor exclude that brand on the prescription form, and you should let your pharmacist know immediately so that information is included in your profile, and you don't get that brand again.
We are all different, and may have different reactions to the same ingredients. The "only" brand that one woman can take without reaction may well be the only one that causes a reaction in someone else. The deal is that we each have to stay on top of our own care, and reactions, and look out for ourselves.
I hope that you have a gentle ride on the tamoxitrain.
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I am not aiming for pity. I am just seeking some help on tamox. I thought that was what this site was for, bc survivors helping each other out. But, I guess I was wrong. I am sorry that you feel that you must persecute me. Thank goodness public hanging is outlawed or I would have a noose around my neck by you. I am an adult and a Christian and I don't see the point of your copying and pasting old messages that meant no harm. Yes, I changed them after I realized that they were so hurtful and that some of you were judging me on words written months ago just about someone gaining weight and wondering if it was due to tamox. I have always been worried about gaining weight. I suppose it goes back to my always trying to be just so perfect because I lost my Mom and I wanted to be the perfect child for my Aunt. I wasn't insulting Rachel personally. She kept posting how she was gaining so much weight and wanted to lose it, but, couldn't for some reason. So, I was questioning if her weight gain was due to Tamoxifen. How was that so horrible? I just don't get it. I just wanted some questions answered and to have some of your opinions on tamox. I stare at the bottle everyday, but, just can't get myself to take it. So yes, I am trying to get some help thru all of your experiences and when I take it to hopefully share it with all of you. I had no idea that I wouldn't be welcomed........
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Ladies,
I am one of the oldies on this thread (since approximately November of 2007 when Basha started it) and I have never seen the animosity here before. I will only say this one time to all people involved - EVERYONE has a different reaction to medication. Some may be helped by tylenol, others by ibuprofen or asprin. Some are allergic to some meds. SO WHAT!! Let's please all take a minute, take a deep breath and stop. Most women who do not have many or any se's normally will not come here. People who are scared of se's or have a concern do come here. I did, but since my se's are manageable, I normally don't post, but I do get email notification and what I see happening really needs to stop. It will only scare women from coming here looking for advice, and instead of seeing various degrees of se's or not, all that they see are people whose hormonal (or lack thereof) running their emotions.
Breast cancer is scary, let's not make it scarier. Especially on Halloween.
Trish
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Susie, I'm sorry you are feeling persecuted. I don't think any of us intend to persecute you, really. We're just saying, be aware that your words have an effect. Sometimes words can be misinterpreted, especially out here in cyberspace; I forget that sometimes when I'm really enthusiastic, or trying to be facetious. You've made some claims about Tamoxifen that weren't quite true, or were half-truths. I don't think you intended to do that. It also appeared you asked some personal questions that could have been interpreted as insulting. Maybe in the actual 'conversation', it wasn't, but again, it's so hard to tell when you're not face to face with someone.
I think you are afraid of that bottle of Tamoxifen and showing it. I know because that was me about a month ago. I made a very personal decision to take it after months of stewing about it. This thread helped me, but more so after my decision, in supporting my decision and discussing possible SEs. In making my decision, I got my facts from the doctors I trust and from doing research on the internet. You'll have to do the same based on your personal situation; no one here will try to talk you into it or out of it.
It's a difficult decision and I wish you the best in making it. I think maybe you're like me and Tamoxifen won't make a dramatic reduction in reducing your recurrence risk. However, there are many others here for whom Tamoxifen is much more significant.
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Lenelle my Radiology Oncologist started me on Ambien abut my Med Oncologist has me continuing. It really helps. I feel I may be ready to cut down on it but so far have not because I still have fatiguie but not near as bad as the month before so I know I am making progress!! I am still working 4 days in the office and one form home and love it. I admit by the end of the day Thursday I am really tired and am usually in bed by 9pm. Little Red glad you started the Ambien hope it helps you. I find the few nights I did not take the Ambien I wake with HF and have to go to the bathroom, but the nights I take it the HF do not wake me and I don't have to get up to the bathroom.
Hope all the conflicts going here get positively resolved. I love coming to theis thread for su[[ort companionship, and friendship and hope all others can also. Do not post as often as work is very stressfull and just want to eat take a walk relax in front of the boob tube in the evening. SE's are manageble and feel Tamox is the right deciiosn for me. thank to all for being here for me.
Happy Halloween!!!!! Enjoying lots of apple, pumpkin, and squash recipes right now.
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Morning everyone,
I am going to ignore what is going on because I just am.
So ... I am also going to bore you all with my snaps from my cancerversary party which we had yesterday. It was so much fun. I am feeling so good on tam, I even forgot to take my pill last nite, even though it was a cancerversary I felt so "normal" I didn't even think about SFBC. Hope these photos work. One is my bc friends and my sister doing the secret handshake, one is the beautiful cake my friend surprised me with and the other is my gorgeous sister who also has SFBC. I love all you guys so much and I hope you don't mind me dropping in every now and then,not to talk about SFBC or tamoxifen but to just read up on how you are all doing. All you socal gals have a great get together and hope everyone is having a great halloween.big hugs
Helena (edited to add ....holy crap they are really big HA. sorry about that ...here's me in all my glory. ROFLMAO, sorry to upset your brekky. (((hugs)))
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Thank you Trish. I never meant harm or to insult anyone. I hope that I have explained that clearly. I never realized that not everyone or anyone that needed help could or could not post. And, I will probably open up this bottle of tamox and take it. I just need some help in answering some of my questions and in reading how you are all doing on it. I certainly never meant to start anything...never. Have a good weekend Trish.
Susie0 -
Thanks Patty! I apologize if the info that I wrote is wrong. I was just writing what I had read. That is why someplace like this is so good, it can clarify and correct the wrong that we might read or hear about. I came back on here, as I said, to get some help from my bc survivors inre to opening up this bottle of tamoxifen and taking it. I never came on here to start fighting and to have people attack me. I have bc attacking me, I don't need anything else doing it too. So, I am hoping that I can continue to post and to be considered a part of this group. And, when I take tamox, that I can write about any symptoms or feelings that I am having and have them received by at least some of you and get a response. Thank you for your kind words and understanding.
Susie0 -
.............................TRUCE ............
Helena, Happy cancerversary ! Beautiful as always, never change.
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Helena, beautiful pictures.
Well, my vision is improving a month off of Tamox, my Onc wants me to wait another month before getting back on the train. I'm going to keep my fingers crossed I'm in the group who has no SE's after a tamox vacation.
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HelenaJ:
Congratulations - you and your girls look great - celebrate!!
I meant girls...but I guess you could interpret it as the 'girls' ...LOL
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Gals, remember the ignore feature. You don't like what I am saying? Put me on ignore and my posts will magically disappear.
Use the ignore feature by clicking on the person's name, and when their profile comes up, click on "ignore this person". Voila- all your problems are gone.
This works especially well for people who only want to make trouble, because they feed off the attention from the trouble they started, no matter the topic. There's an axiom on the Internet "Don't feed the trolls".
Or if you are strong like Helena, just ignore what you don't like to read
Since I can't see anything that bothers me (except a lot of my friends here looking like they have to justify why they are taking Tamoxifen???) I am just posting normal stuff. And please, please go ahead and ignore me if you don't like what I am saying!
Speaking of Helena- WOW great pics and great friends!!!! The NoCal girls have got their work cut out for them beating that secret handshake pic! Congratulations Helena, Happy Cancerversary and many more to come!!!! And Happy Halloween!
Today I felt like I was wearing a hair shirt. Its rainy and humid, and my apartment is always hot- I never turn on the heat- (except my son's room seems to be on another planet, his room gets cold). I was just hot hot hot- and not in the good way. So I am running the mental checklist: It's my period, so that could be it, it's actually hot in here, so that could be it, and its my second month on Tamox- could this be like my version of hot flashes? It was a big trip today, schlepping the kid to PA to visit my Dad and some other dear friends of the family. My friend came to pick us up and that became a little wacky because he couldn't park the car, then he did but the meter didn't work, so he came in, and I went out to install the car seat and stuff, but while I was there I saw the parking ticket writer, so I moved the car and then there were no parking spaces... I was just creepy creepy under my skin uncomfortable, even in the car with the AC on. My mouth was really dry too. Finally I just took a half a xanax- at least I think it was a xanax, I have some emergency pills with me and I forget what half of them are... I can recognize benadryl... and valium... well, I know I am suggestible so I just told myself that's a half a xanax (why would I break anything else in half?) and calmed down. Had a great day (those of you on my kid's email list will see pics). I just wonder... was that a hot flash? That'd be great if it was! (Eh, maybe its because I ate all the halloween candy, and I haven't had that much sugar in years!)
kmmd- GREAT news about your vision improving! I forget what the issue was, but thank heaven. Sure, why shouldn't you be one who gets back on the train without the SEs? Oh I don't know if this applies in any way, but I take the Bausch & Lomb AREDS vitamins for eyes. Proven (I don't have the study) to improve eyesight as we get older. My Dad takes it too. Supposed to be twice a day, but I take it once a day (I'm too incompetent to do anything twice a day). Maybe see what your ONC or Eye doc think about them? Maybe helpful???
Mary- I am sorry I didn't say anything about your crappy week. You do so much! I have to write you (off BC.org) and tell you about my progress getting a place in PA. Actually, maybe ask your advice, because the bottom line is that so far, it ain't happening where I wanted in Erwinna. I'm thiking about Bethlhem again. I really want to get the PA girls together like the NoCal girls are getting it together.
Thank goodness all the halloween candy is out of the house!!!!
Hugs y'all
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Oh and Little Red, nice new avatar!!!!
Reminds me that after all that planning, I didn't bother with our Halloween costumes today... we saw some ADORABLE kids on the street... maybe we'll put them on for music class tomorrow...
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And, thanks MTG for your kind words. I appreciate it. I hope to be posting more and getting to know more about all of you. I need support, advice and help. I pray that I have found that here.
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Rachel, thanks I'll look into it. I've been eating so many carrots the last few weeks I could've been a rabbit for Halloween.
I'm encouraged and really want this to work, I'm in that group that really needs the protection it can afford. Being off of it I've missed how great my fingernails were. Never had them grow so fast, strong, and I swear a better shape. How weird is that? 0 -
Carollyn- did you see the chick pea soup recipe?
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kmmd- your nails grew stronger and longer on Tamox? That's wild! My nails grow like dog claws, wonder if that'll change on Tamox? We'll see.
Hey, we all need the protection from Tamox. Its just really great and reassuring news that your vision improved. So far everyone who got SE problems on Tamox got relief when they went off- and that's got to be really scary, wondering if you get your vision back. OK, so first the vision... then the Tamox Nice that your ONC is on top of it.Mary- did you see the stuff meg posted about new research showing that Tamox and AI are the same in terms of recurrence when they exclude the low metabolizers? Hope that means you can stay on Tamox- although lots of gals do just fine on AIs.
meg- you aren't saying a lot about your oomph so I wont say too much either, but just hope it was easy for you in every way.
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Rachel_BC:
Could be a hot flash. I've noticed that if I don't stay hydrated, or eat too much chocolate/sugar (not that I would ever do that), or drink red wine (again, never...) it can make the hot flashes more frequent/stronger. But I remember my girlfriend trying to "get out of New York" for a weekend, and it was always so hectic and stressful for her...maybe the last straw was the ticket writer. Ticket writers always give me bad SEs...
Happy Halloween!
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kmmd- carrots- ha!!! That is really funny... Good girl!!! I mean, what else could you do, right?
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The halloween candy is in my house!!!!!!!!
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Helena, WOW, beautiful pictures, cool handshakes, and a wonderful anniversary --(wonderful to be one year out, anyway). CONGRATS!!
Rachel, IF ONLY a hot flash were like a sugar rush! LOL I suspect you were having a HF! Stress can bring one on. However, lately for me, just about anything brings one on. That, plus one other thing (otherwise not desirable but in my situation, not so bad), makes me happy in the knowledge that the Tamox must be working for me. Don't need to take that metabolizer test.
meg, can't believe you already went back to work! and happy your path report came back clear.
Happy Halloween everyone! Now I have to devote myself to the OSU-Texas football game....go Pokes!
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Oh yes red wine, oh so good and it definitly makes this Tamox girl "Hot", oh well have to enjoy a glass now and then anyway, small sacrifice in my world.
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meg- clean ovaries and tubes, now THAT's cause for celebration. That just ROCKS. Bummer about having to wait to recover more. You know the deal on that, be nice to YOU!
Wait a minute wait a minute wait a minute... I just was re-reading my post for errors and saw Patty B part deux's post- I had to see it twice to get this... you went back to work THE SAME DAY you had the oomph?????? What? Is that what you are saying? Even Mary didn't do that (even though she got no sleep at the hospital that night). Oh now come to think of it Renee was in her garden pulling weeds the same day. She made it sound like it was as easy as ordering a happy meal at the drive through... but I think she also needed to take a break after that? Renee?
Boob lyphedema? I gotta go google that. Sheesh. If it ain't one thing... it's another. ah, massaging boob... after IVF I had lifted my skirt so often, I had to remember to check I was wearing pants before I left the house. After SFBC DX, I flashed my boobs to so many people every day I felt like I was marching down Bourbon St, waiting for someone to throw me a necklace. I do find myself trying to tell if my boobs feel different from one another. I still have some gross stuff on my permatan from RADS, and keep remembering how my RAD ONC wouldn't commit to saying my boob would ever return to normal. The kid is the only man in my life these days, I don't know how I'd manage with a man in a romantic situation and my weird lookin boob. The scar also is noticeable by feel. Don't get me wrong, I am grateful to have gotten to keep my boob. OK so I gotta learn about boob lymphedema. I know you are probably already doing complementary stuff to improve the situation. I'm sending "make it work" vibes to ya. I am still rockin' on the clean parts. WTG! What a frikin relief!
mary- omg, your kids' candy!!!!! What will you do? ( Good Lord, there's nothing but sirens tonight. Halloween in NYC... it's insane. )
PattyB part deux- if this is a hot flash, then I am one happy camper. I just can't believe it could be this easy? My friend confirmed it is actually hot in my apartment, but the part in the car, that was a new feeling, not just hot but like I had an itchy wool sweater inside my skin, head to toe. And kind of irritated as well, and yes, I was under stress...hmmmm. It was bad enough for me to reach for a half xanax... and it did go away after I took it... even though the same stress continued. Hmmmm. And it's the end of my period, and a lot of gals said they get HF on their period... dare I hope that this is what my ride is?
Well I got the AC on full blast here...
I think its AMAZING the state of OK can change halloween date for a football game. Here the big deal is the Yankess vs the Phillies. Its pretty ugly, the towns are 80 miles apart. Some parts are funny, in PA I saw someone wearing a t shirt that said A ROID and a cartoon in the NY Post had a picture of the Phillie Phanatic meeting the mascot of the Yankees: a gangster with a baseball bat... So I am going to be rooting for the pokes... is that Cowpokes?
And tomorrow is the NY marathon. Life in the Big City.
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Well, half-time's almost over and the Horns are hooking us -- but the game is much closer than the score indicates (yeah, right). Rachel, yes, it's the Cowpokes (OSU Cowboys), and the state of OK didn't move Halloween night. Our city Council decided to designate Tuesday as "official trick or treat" night. This was because a lot of traffic was anticipated today due to the football game. So we've already been there done that, and the doorbell's not rang once tonight. Which is good, because we're glued to the TVs watching the game.
I'm checking out the info on the eyes and vitamins. (THANKS) I'm thinking it might be a good idea to get yearly eye checks while on Tamoxifen, huh? I haven't had my eyes checked since lasik surgery 9 years ago.
Well, I think Meg went back to work on the 5th day after her procedure. ??? Still, I probably would have probably been laid out on the recliner.
Carollyn, red wine makes ya' hot, huh?
OMG, now it's 34-7. This is getting ugly. UGH!!! I need a boob massage....
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