Bottle o Tamoxifen
Comments
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YEAH for scientists - thanks for fessing up, Sully. ' helps to sift through all the conflicting info. And you are absolutely right - we should not beat ourselves up on it all - just be as aware as possible.
Have a great day my friends (and no, I am not interested in a support group. My friends and family do that; and my T buddies here give me a HUGE additional boost. And besides, I am moving on. To me, this is a chronic disease I have to manage - like post-stroke, post- heart attack.....I will not be victimized in a survivor mode.)
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Susie,
LOVE the pics! Keep 'em comin'! ; - )
On the topic of soy... I agree, we shouldn't drive ourself nuts about it... I have started eating BUTTER since it is SOY free as far as I know... I was using Promise spread but it's almost 100% SOY! I think I'm taking so many supplements, and that is why I'm concerned... will have to try to find another source for soyfree supplements but for now, I'll use what I have....
I can't believe your onc would say that about Tamoxifen makins soy a non issue... but really, this is how I feel about any of the soy I'm now getting... the hormonal treatment will block the estrogen receptors, so it IS maybe ok to have a little soy, especially since it's impossible to get rid of soy, because it IS in everything... but I worry what will happen when I stop taking the hormonals... I won't feel 'safe'.
Kelly
Yes, I'm exercising, because one of the se's I'm having from Femara is that it seems to be making me very HUNGRY, kind of like when I was in chemo, and those steroids made me SO HUNGRY all the time!!
Hope everyone is having a wonderful day!
Harley0 -
Jennie--tamox doesn't stop the ovaries from producing estrogen, it just blocks the estrogen receptors in the breast. My oncologist explained that while on tamox, 25% still get normal periods, 50% have irregular periods, and 25% stop altogether. Mine became very light and very irregular. But even after my total hysterectomy (ovaries removed as well), I continued with tamox, as estrogen is also produced in the adrenal glands, skin and fat.
Anne
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Hey My friends,
I just had a LONG conversation with the guy that markets the multi-vite I am taking. The multi-vite does not list soy lecithin as an ingredient but it is there. AND he says lecithin is lecithin; in this case is is derived from soy but contains NO isoflavens or genesteins - the phytoestrogen part of soy.
SOOOOOOOOOO anyone else heard this? can we relax our vigil on soy lecithin? (Soy lecithin may contain chemicals and pesticides and....... BUT.......)
So where are our scientists - Sully?????????? HELP
Caroline
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Hi Everyone
Thank;you for the warm welcome,I feel better already,I think I needed to stop thinking about the negative ,we are all different and be more positive and hope for the best while on tamoxifen.
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Caroline ~ You're my hero!!! I love this comment - "I will not be victimized in a survivor mode." Thank you, it gave me a much needed boost!! I haven't heard any scoop about soy lecithin but Sully is our resident scientist so maybe she can enlighten us. Or, Bonnie's niece.
Harley ~ That is one se I don't need!! I would have to spend 1/2 my day walking just to maintain! LOL!! Talking about walking, I have decided to sign up for the Avon Breast Cancer Walk, and this Thursday I have a phone introductory meeting to hear what it all entails. Have you done something like that? Anyone else on the tamoxitrain who has done a breast caner walk? If so, I would love to hear about your experience!
Have a wonderful evening all!
Kelly
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Hey tamoxibeauties! It is good to halfway feel good to where I can come back on here. I did miss you and reading about everyone.
TCK, I aim to please with the pictures. I always hope to put a smile on someones face with them. If I just get one, that is enough! How did your first day at work go? Fill us in.
Hey Kelly! About the support group that I went to, sometimes it was good and sometimes it wasn't. I didn't open up a lot as I didn't feel comfortable enough to do it yet and noone forced me to. I could connect with what so many said, but, then some of it, scared me. And, that is why I think I am kind of waiting to go back. Plus..I have been so sick. I think some of my fears, especially of a recurrence was surfacing............
Harley!!!! How u doing on Femara? Better then tamox or not?
How is your doggie doing Bonnie? Better I hope!
Susie
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kcl65: I did the Komen Race for the Cure this past June. It was something I had been interested in doing and it finally worked out with my work schedule. I did it with my daughter who was 9 then. We did the 5K walk in memory of my mom and in honor of my sister. We both really enjoyed it. This was before I had found my lump so I didn't know I had bc--ironically enough I found my lump later that day! I'm hoping that we can do it again this year--it was a great experience. You could really feel all the love and support and emotions flowing. It was a really hot day and the route went through some older neighborhoods with tree lined shaded streets and there were people all along the way cheering everyone on. The neighborhood people along the way even had stations set up to get 'cooled off" with sprinklers/fans etc. There were signs everywhere in support and even a chorus sang at a church as people went by. I know that this year it will have even more meaning for me. They also had alot of informational booths set up which my daughter and I both liked. Well, I guess I could go on and on--definitely worth doing!
TCK
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Kelly
I did a breast cancer walk on board the cruise ship... it was fun. I'd like to do a walk or run but there doesn't seem to be any nearby where I live.... ....sigh...
Susie
Hi... thanks, I am doing ok. Hanging in there. I'm not having too many se's from the Femara. It is day #20.
Hope everyone has a happy rest of the week.
Harley
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Susie: Going back to work was good. I was really ready to try to get back to my usual routine. Everyone was happy to see me (or so they said haha
). It has been 6 weeks since my GYN surgery. A funny thing did happen. One of my coworkers actually said "Hi. It's good to have you back. Did you do anything fun while you were off?" Like I was on VACATION or something--for 6 weeks (and yes she knew that I was having surgery). I said, "Well, I had surgery--I'm not sure if you call that fun or not." Oh well, some people will never get it, will they?Hope everyone has a restful SE free night. TCK
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Harley: How far is Raleigh from you? That's where I did the Komen walk.
TCK
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Now I'm disappointed. All this talk about the Race for the Cure made me look up when it is this year and I have a scheduling conflict
.TCK
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Hi All Tamoxitrainers,
I was invited by a neighbor to attend support group meetings too and chose not to do it. And it was basically for all the reasons I've been reading on here.
To me, our group is the best support any one could ever have to turn to and ask questions. What I like most is how we mesh as a group and each one respects the other person's view or what they believe or have heard, etc. Might not agree but respect the view and search for more.
We should be proud of ourselves for that.
Bonnnie
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Too Cute !!! 0 -
You are right Catbird....I think you can find an answer or support for any question or problem you come up with on this site... I went to a support group once for women....All I could do is cry...And all the other women had a worse time than I did.....But my friends, my blessed friends, are what comforted & helped me the most....My SIL went to a grief support group, because she wanted more than what we could give her...it just seemed to like she wanted more sympathy than the whole family could give her. She became lost in her grief, & she became comfortable there! We have to move on...either with the help of our family, or friends or professional counseling....but we have to move on.....if we want to.
And I loooooooove your picture!
Is that pup yours? Jeannette0 -
Hi everyone, My name is Erika and this is the first time I am posting on this thread. I just found it today as I am starting my search for answers on Tamoxifen!
I realize that BC is an ongoing process. I got through the first part which was the first surgery on December 31, and I am getting used to my funny looking tissue expanders, but I also am finding myself debating over Tamoxifen!
I went into surgery with the knowledge of only one small IDC .4mm nodule in the right breast, and I was almost certain about skipping Tamoxifen. But now, with my pathology report showing three different cancers in both breasts plus usual ductal hyperplasia multifocal in both, I am questioning if I shoud just go ahead and take it! I am going to see my oncologist soon but I doubt she'll say OK to go without it even though all three were .4mm and smaller, no pymph nodes involved and very clear margins. I heard the side effects of Tamoxifen is really bad for some people!
I would love to hear your opinion,
thank you so much and best wishes on your jorney! Erika
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Sorry! I forgot to ask if I can embark with you and take a seat on your first class tamoxitrain!
Thank you! Erika
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Hi Erika,
No one asks permission to join this group - we are just a mixed bag from all over the world - wonderful women as you will find out for yourself.
I am in NO position to answer your question re whether you should/should not take the big T. Your diagnosis does not say if you have had a lumpectomy/partial mastectomy or a mastectomy/bilateral mastectomy. I'd GUESS you had a lumpectomy - and on both breasts??? But then you talk about expanders, which leads me to believe you had a mastectomy. Did you have radiation? Also, are you pre/post menopausal.
As you will see, my IDC was small but only one. I am taking T, even though I am post menopausal for two reasons: first, it is the gold standard of drugs (if you metabolize it properly) and second, although it will only minimally protect my 2/3 breast, it may reduce the recurrence of BC in the other breast by 40%. So it is worth it for me. Just as a BTW, and everyone else knows this, I only partially metabolize T (had my DNA tissue tested by Genelex lab), I am on a higher dose of T - I believe higher than anyone else on this site - 30 mg/day (the usual is 20).
I am lucky and only have very minimal SE so far, after almost 4 months.
WELCOME and the very best of luck to you!!!
Caroline
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Hi bcamnb, Thank you for your response and am sorry I was not clear!
I'm 48 years old, pre-menopausal. Had a bilateral mastectomy on December 31. I will start expansion of TE's next week. When I went into surgery I had the knowledge of one small (.4mm)nodule in the right breasts. My Decision to have BLM was because of family history of BC, serious fibrocystic breasts since my early 20's, I didn't want to go though radiotherapy, and most importantly, I din't want to have the anxiety of another lump, recurrence and the scrutiny of monitoring. I thought that because I removed my breasts, no lymph nodes involved and all three cancers found were very small I could skip tamoxifen.
After reading a here and other sites, and input from a few other ladies, I think I should just go ahead with it. Best wishes! Erika
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Hi Erika,
Thanks for sharing....
Have you checked on
Tamoxifen and bilateral mastectomy ...thoughts&? another discussion board topic ? Might have some answers for you.
C
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I am into my 17th month of taking tamoxifen and Sunday developed a rash on my stomach...it is still there and growing...I have to think it is some late reaction to tamoxifen...no new foods, detergents and I don't take any other meds...
I am starting to feel back to normal and my hair seems to be straightening....does anyone think that the more normal me might be allergic to tamoxifen even after all this time????
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UGH... Raleigh is quite a ways for me... I had to think twice about getting my care there... mainly since 1. it is so far away and 2. my insurance doesn't work there... so I ended up going elsewhere... a little closer... Whiteville and Wilmington.
Sorry you have a scheduling conflict...
Harley0 -
Hi all,
Well I guess that I opened up a can of worms for myself when I confessed to being a scientist, huh? LOL. Well, happy to come clean.
I'm not a nutritional expert (I'm a molecular biologist/pharmacologist), but I do believe that soy lecithin (and lecithins in general) is a phospholipid and does not resemble estrogen. I wouldn't worry much about that. The thing that we need to be careful about is the phytoestrogen component of soy, as well as flaxseed and a few other things. It's my understanding, however, that the results of studies is truly inconclusive regarding whether phytoestrogens actually do activate the estrogen receptors. Some studies say yes, some say no. Having worked in science for many years I'd attribute these results to questionable study/experimental design, but having said that there's no way to know what the actual result is. I'm sure that the scientists are doing what they think is right. Eventually things will become clear.
Ok, so bottom line is this- phytoestrogen ingestion should be watched until it's well established what the actual story is. Other parts of the soybean, such as lecithin, probably won't do a thing but there's no way of knowing whether the lecithin has been completely purified away from everything else. Listen, just limit your intakes. We're all still producing estrogens at some level, even after menopause. We can't control everything, but we can let T do it's job with natural estrogen as well any phytoestrogens that happen to slip through. Let's not sweat it too much.
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Hey tamoxibeauties! How u doing!
OMG Bonnie, that is the cutest pic. It is for sure an AWWWWWWWW! Thanks for it! I am glad that your doggy is doing better! 3 cheers for that! YEH YEH YEH!
Glad that work went well for you TCK. That first day back is always hard and I am glad that yours wasn't. So, how was the 2nd day? lol
Welcome and hi Erika! Glad that you are here. You are struggling with whether or not to take tamox like so many of us, me included. I was scared to death too about the se's. And, I was thinking of not taking it. But, I decided that I wanted to do all that I can to keep the beast away, so, I took it and am glad that I did. So far, I have only had headaches and some leg and foot cramps with it. So, I really can't complain. I fired my oncologist and haven't got a new one yet, but, hope to in a few months. I hope that you will post and let us know how you are doing and feeling. We are a very friendly group. lol
I think support groups are great most of the time. I just have chosen to not go for a little while. I found myself getting sad more thatn glad or relieved. But, they are great!
I need to get back to finding some more cute AWWWWWWWW pics.
I am feeling better as you can tell, just not 100% YET. But, soon, I will be my old self again.
Have a good nite all!
Susie
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Hi Sharon! I am sorry that you have a rash. I haven't heard of that happening before. Do you think it is the tamox?
Harley, you are having trouble finding a doctor or???
Susie
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Hi Sharon - have no idea about the rash. I sure would give my doc a call if it was me.....
Sully - many thanks for the comments. Didn't mean to pressure you but the lecithin (with no/almost no phytoestrogens) came right out of left field. To me soy=soy=BAD. EVERYTHING seems to have lecithin in it, so I am relieved I don't have to be quite as paranoid about it!
Off to pick up my daughter from the airport. She can't stand not seeing her new (read only) nephew! She's here 'til Sunday YEAH!
Take care all
C
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Hi ladies. I am from Australia and although I cannot talk for other oncologists, mine never mentioned anything about soy. I was having my last chemo and he wrote out the script and just handed it to me. That was back in August. I had to have further surgery in september which pushed my radiation back to oct/november. I saw my onco in November and he never mentioned the Tamoxifen and I forgot to mention it. Anyway I rang his office in December to ask if I should start taking it as I have had hepatitis (20 years ago) and on the side effects sheet it says don't take if you have had hepatitis. His receptionist rang me back and said start taking it, which I did on Jan 2. With the amount of ladies here that have been told NO soy, my feelings are play it safe and I will not be taking soy. Sorry if this is very long winded but I just wanted to say Thanks for all the advice on this thread. I am due back at the oncologist in February and will raise the subject then.
Jennie
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Hi Erika! Welcome.....As you can see, these women have a lot of useful, information! And before you decide anything, you just have to listen, & ask questions, get different informed opinions, & then maybe you can decide! We don't want to get cancer back again, ever....And we'll do almost ANYthing to prevent it. If you decide not to do Radiation, it really is your choice.. It's not easy to go through, for some women, BUT we are fighting our cancer with every useful tool that we can....Radiation & Chemo are ways to fight cancer...and keep it from coming back again! The Tamoxifen, I know, will help us prevent cancer from coming back either in our breasts or "anywhere else in our body!" That is what the research tells us.
Did you have an Oncotype test? That tells you a lot about your chances of getting cancer back again, & where your treatment should go.
I didn't want to take Tamoxifen either, but I knew if I at least tried it, I was doing everything I could to help me get through "this life threatening disease" we "had".......I've been taking the T pill for just 2 weeks, & no side effects! It is such a relief to be fighting cancer & doing everything I am supposed to do to WIN!
So Hop On our "Train!" We'll be here to hold you up! I've listened to these women ever since I was told I had cancer....so they are my "Guardian Angels!" Jeannette
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Good Morning Tamoxies,
Susie ~~ Glad to see you back and hope you get to your 100% very soon. Thanks so much for showing concern for my pup.
) She is doing much much better too but not 100% either.Sharon ~~ I'd of course have the rash checked out but my feeling is that it probably isn't the Big T doing it....but what do I know. LOL I never dreamed my PINK EYES were caused by it either until I saw the doctor.
Hope you're all doing great!
Bonnie
hoping soon to need these spectacles. LOL0 -
Susie,
Hi... glad you are feeling better... get some rest, and you'll be back to 100% again soon!!
Hugs
Harley
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