Bottle o Tamoxifen
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Hi All,
I am too late to wish everyone a wonderful Christmas, so I will just have to be early and wish you all a
HAPPY NEW YEAR - one full of great health and happiness
Thanks for the massage info MTG - I have those knots and as I need a baseline mammo next month was NOT looking forward to it! I'll get at the massage. The scar healed really well but there certainly ARE knots below it.
Take care all
xo
C
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Hi Everyone,
I don't feel so bad now that I'm not the only "forgetfull" Tamoxitrainer !!!! I'm pretty sure no one has had the dry eyes from it that I got? The artificial tears and fish oil cleared it up although I get an irritation now and again.
Massage definitely helps both knots, scars, "doggie" ears, whatever !!!! And I'm sure Vitamin E would even add more.
Tootles All LOL
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P. S.
My husband came in and asked what I was doing~~ told him writing my buddies about being forgetful on the Big T......
and then handed him a note to remind me what to take over to my daughter's. He smiled and rolled his eyes as he walked out. LOL
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Kelly,
The phone number for ACS Reach to Recovery is: 1-800-ACS-2345 I think they will ask for all your info., your stats from your path report... so maybe they will try to match you up with a bc survivor who had similar tx...
Susie and Bonnie,
I have had a few referrals since I joined RTR... and I think at least one was a woman who was having a lumpectomy. I had bmx... it really didn't seem to be a problem, as we still had bc dx, and we discussed some of the concerns they had. My coordinator tries to match volunteers with referrals as best she can, but it also has to be someone who is in my area, so I can meet her for lunch...
I really like that part of my assignment!! marlenet:
You WILL know, because you will have abnormal bleeding... now, I am postmenopausal, so any bleeding is abnormal. If you are having heavier periods, or bleeding in between periods... any changes that concern you, I guess you will need to keep an eye on things and tell your dr. I also had trans vaginal u/s once a year, to look for any changes... I'm with you... I asked my onc. and my gyn if he wouldn't just take everything out, since I can't have babies... why should I have another thing to worry about?? They vetoed my decision...
Bonnie,
My dh doesn't believe in chemo brain, or memory problems from Tamoxifen... the guys really don't 'get it'....
Hugs to all...
oh, and the countdown continues... 2 more tamoxifen pills to go!!!
Harley
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Still Chuckling over the pics! Haha
Has anyone noticed how expensive beds are? I am shopping for one right now and can't get over the prices!!
Harley ~ Thanks for the phone number, I will definitely be in contact with them next week. Only 2 pills to go...YAY!!!!!!!!!!!! Something else to toast tomorrow!
Susie ~ My parents are arriving tomorrow and will be here for a couple of days...had to do the "mom clean" today...LOL! Anyone else that does the special clean before mom comes to stay?? Anyway, we will be going to a party for a couple of hours and then will be back at home for the count down!
Just in case I don't get online tomorrow...HAPPY NEW YEAR team!
Kelly
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Good Morning! I just have a couple questions for you gals on Tamoxifen...Does it make a difference in your age, about your dosage or length of time? I'm probably the oldest one here, & will ask the Oncologist on the 4th, but I'd like to hear from you! I finished Radiation Dec. 15, & my Surgeon is sending me to this new guy for Tamoxifen....And is it best to take them with the evening meal? Did I read where you are supposed to drink milk? Have any of you been "allergic" or break out in hives from the Tamoxifen? (Guess that's more than a couple questions!)
Also, I read about your posts with different creams & etc....I started making my own quite a few years back..I just soften cocoa butter, coconut oil, then mix it with vit. E oil, glycerin, even aloe vera gel or cream, & anything else that sounds good. I read the "ingredients" on some expensive creams, & just tried mixing them myself...I don't keep this in the frig, because it becomes too solid, unless you add vaseline. But it definately does help when massaging those tough little scars. Thanks for any help...Jeannette
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Susie,
The only caveat about vitamin E oil is that it may have soy in it... but I checked it out with my onc and he said that it should be ok to apply it topically.
Kelly,
Glad to hear that you'll be calling RTR... they really are quite good... wish I could be the one to call you...
And, yes, I do the Mom Clean... we are going back to Maryland to visit with some friends for the weekend. We leave tomorrow, so I won't be online after today... We are doing the Mom clean now, cause my MIL is coming to stay with our cats while we are gone...
Jeannettes9
that cream sounds interesting!! I am looking for an all over body moisturizer lotion/cream, because they all have estrogen in them. So... I have to be careful with the Vitamin E oil, since alot of them have soy in them. I didn't find any that didn't have soy... so for everyday moisturizing, I guess I won't use it. Although, I have some Safflower oil, which also has Vitamin E in it, and that might just do the trick. ; -)
Since I won't be back on after today, I want to wish you all a very HAPPY & HEALTHY NEW YEAR!!
Harley0 -
Hello All,
I have been using Vit E suppositories for vaginal dryness - my onc did not seem to be concerned about it containing soy.
Jeannettes9565 - I also am 'old' here on this site. Because I am an intermediate metabolizer of tamoxifen, I am taking 30mg. Yes, take it with food in the evening (I take mine just before I go to bed with a half banana or several crackers - keeps any side effects happening for the most part as I sleep and prevents nausea).
Have a great New Years everyone.
2010 will be a MUCH better year for us all
Caroline
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Caroline,
I am not sure if ALL vitamin E has soy in it. If you have checked the ingredients, and your dr. says it is ok, then it's fine. I am using KY Liqui Beads, and that has Vitamine E in it also, and I didn't really check for soy... ;-)
Happy Happy New Year!
Harley
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Hi bcamnb! Thanks for the info! I have a lot of questions to ask the Oncologist now! There is another thread on this site that talks about the women who want to quit Tamoxifen because of all the side-effects, & some just don't want to take it! Man, I'm really confused now...But I want to do all I can to stop any cancer cells from growing again! Have you gals looked at the thread I am talking about? There are a lot of references to other sites, that question the necessity for this drug.....Again, I just thank you for helping me decide...Jeannette
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Happy New Years Eve Tamoxitrainers,
Jeanette ~~ I've seen sites too where they scare the living daylights out of you about Tamoxifen. I try not to let it influence me because it's been successful for many many years.
We're staying in but I feel sorry for those who have plans because in our area it's supposed to sleet and the roads are supposed to be terrible.
Now I take a half of a pill (T) in the morning and the other half at night. It works for me. And my onc is fine with it. So...lots of times we just have to do just that. Follow what is good for you as long as your doctor is o.k. with it.
A Happy Healthy 2010 To All of You,
Bonnie
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catbird--I took tamox for 5 years and now take evista. I definitely have short term memory issues and very dry eyes. I'll be starting omega-3 fish oil soon--I'm hoping it will help my achiness/stiffness too. But we can't blame it all on the meds--a lot of these symptoms some along with natural menopause too--I lost my ovaries to rupture, so had immediate surgical menopause--got thrown right into it all at once!
Anne
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Hi Jeannette, I'm all for investigating all the threads to get the full impact of what's going on. Unfortunately sometimes the information can scare the sh*# out of you. I walked around giving my Rx a wide berth and just looked at my bottle of Tamoxifen for about 6 weeks until I got up the nerve to swallow the first pill..........nothing happened. I've heard that some side effects take a while to show up and I've only been on it for 6 weeks but honestly, I was truly afraid and so far I haven't had anything noteworthy occur. As always in this mad world of breast cancer treatment, it's different for everyone. I figured I could start and if things got hairy I could always stop. Good luck, and Happy New Year!
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Embracing a New Dream!
Well beloveds. The verdict is in. I am in ovarian hypofunction (premature ovarian failure). My gynecologist could barely even FEEL my ovaries when palpating for them by hand. This is good news and it's bad news. Ultimately, it's good news.
The downside is that I will never be able to have children biologically. Not even through a surrogate at this point. My eggs are fried, over-not-so-easy. LOL!!!
The upside is that this is the state my body needs to remain in so as to limit the amount of estrogen flowing around. I need SOME estrogen to protect my heart and bones, but beyond that, it's poison. Managing limited amounts of estrogen in my body will give me the BEST chance of not having a recurrence of breast cancer in the future.
I always knew this would be the likely outcome of the life-saving treatments I underwent this year. But hearing that it's actually a done-deal, no turning back...well, that's a bit sobering. I could spend lots of time, energy, and money trying to revive my fertility, and it's quite possible through the many miracles of science, I could personally enjoy the miracle of birthing my own child. It's been done for women with far more severe cases of breast cancer. Some of them had recurrences, some of them did not. I still can't wrap my brain around the ethical dilemma of bringing a new life into the world by taking your OWN life into your hands, but I suppose each woman has to work that out for herself.
So, as I grappled with this news this week, I kept going back to my testimony at my T6 Party. I talked about "Necessary Losses" and embracing the NEW DREAM God gives you when one dream is destroyed.
I don't know the new dream God has in store for me. But I know I've had to give a few up just in order to survive. And I'm ok with that. I'll choose LIFE each and every time, if given a choice.
So later on tonight, as the clock strikes 12, join me in choosing LIFE and embracing NEW DREAMS for 2010! I'm excited for the future! God bounced me around a bit this year, but HE NEVER EVER LET ME GO!!! And for that, while tired and with much on my plate, I will make my way to a house of worship, and praise His Name and THANK HIM for allowing me to see another year!
My anthem for 2010 is Sade's new single, "Soldier of Love" She sings it better than I can say it:
I've been torn up inside...I've been left behind...So I ride...I have the will to survive...In the wild wild west...Trying my hardest...Doing my best...To stay alive...I'm a soldier of love...
You can hear this on YouTube --->
http://www.youtube.com/watch?v=IvDaJaU5My4Goodbye 2009!!! Hello 2010!!!
I'm Living Proof, Alaina
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Alaina ~~ Yes you are Living Proof Alaina and your beautiful account of what has happened to you and how you are dealing with it brought tears to my eyes. I know God will bring you many blessings in this coming new year.
Anne~ I had the surgical "quickie" menopause at age 37 so who knows all the shock of that does to our bodies. As you meet each of our Tamoxitrainers here you see the many and varied things they've gone through. And I think we all do quite well !!! Let's give ourselves credit.
Susie ~~ Thinking about you and hope all is well with you.
Happy New Year Everyone!
Bonnie
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Good Morning gals!And Thank You echosalvaje! Yes, I have read as much as I can about Tamoxifen, Ha! I even found a website that talks about these body-builders taking it to build up body mass! Yee Gods!
I'm just wondering...why Tamoxifen, & not Arimidex? I have had so many years fighting these Hormones scrambling around inside! I had a hysterectomy in about 1982...Stopped taking the pill then, after about 21 years.......3 months later I went into some sort of "melt-down" with my skin! Hives, welts, rashes, even "hand-prints" on my stomach, where my Husband put his hand while we were sleeping...almost blistered! This went on for 5 miserable years...Doctors referred me to Allergists...THEY referred me to Dermatologists! I tried EVERYTHING they gave me...Wound up in the Emergency room 3 times, because of what they prescribed! This went on for 5 long years! But finally, trying to figure this out myself, I noticed that these bad monthly happenings came about the same time every month! And the hives/welts lasted about a week!
I went back to a Doctor, begged him for a shot of Estrogen, because it seemed to happen every month, like when I used to have my periods! He gave me the shot, & that night I went into an "allergic shock!" It was like an overdose! My face swelled up, my eyes closed, I shook, my arms broke out, & I went back to Emergency. After yet another dose of steroids, we figured out that it was some sort of Hormone imbalance...So I went back on "the Pill"....for about 8 more years, then graduated to a low dose Premarin for about 5 more years.
I still cannot get an answer of what went wrong....The Doctors just shake their heads...I don't even know when I went through the "change"....Probably when I had the hysterectomy, but I never even had a hot flash!
So all of this past history is why I am afraid of taking Tamoxifen, or any Hormone Receptor...I'm going to tell all of this to the Oncologist when I see him on the 4th...Has anything like this happened to any of you gals? Happy New Year to all of you also! Jeannette
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Jeannette,
Tamoxifen is a pro drug, converted in the liver to endoxifen, the active enzyme we need (that's why some of us metabolize T differently - it needs to be changed in the liver and some of us, like me, don't do it all that well). It removes all estrogen from the breast and vaginal areas but leave a bit of estrogen for bone health etc. Arimidex is an aromatase inhibitor. AIs can only be used in post menopausal women. They have not been around as long as T but seemingly work well. Their downside is they strip the body of all estrogen, so if you are prone to osteoporosis, you will need another drug to manage that; also there seems to be more joint pain with AIs. On the other hand, they don't have T's SEs - possible blood clots and possible endometrial cancer (both remote but possible). I chose not to go on an AI for several reasons: for the osteoporosis part mainly but also because I believe if I can keep the T working for me, it is really tried and true. My tumor was small and had not spread to the lymph glands and perhaps I didn't need anything for the affected breast as I think taking T only reduced the recurrance there by less than 5%. However, for the other breast, it reduces the recurrance by as much as 50%, which I think is really significant. I figured I could begin the drug and see what happened. The doc does not plan to switch me to an AI (although my reading seems to suggest this might be the most effective treatment) but I figure we can revisit this in a few years, when perhaps more info is available. I have had three months of T and VERY minimal SEs.
Yes, you really do need to discuss the estrogen reaction with your onc. This is a big decision and all your cards need to be on the table. I found it useful to always take a writing book with me into my appointments and for me, I found it best to write down all my questions (and don't be afraid to ask all your questions - someone said to me the only foolish question is the one not asked!) on one side of the page and the answers on the other. My husband also always was with me and also took notes. There is SO much new info, some of which is very confusing, so the more record keeping we could do the better for me. If your husband can't go, take a friend. Four ears are always better than two!
Best of luck with your appointment. You will know in your heart of hearts what is right for YOU.
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Alaina,
What a shock you have had. I am so sorry for your news. But as you say, it is what it is....
And yes, God seems to give us what we can handle and I know s/he will bless you as you forge ahead with living.
And yes, here's to 2010!
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Happy New Year Ladies!
It seems Harley and I are doing a relay of tamoxifen. After staring it for almost 20 days I make up my mind to start taking it tomorrow. Hop on the train!
Liz
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All of us have done the same thing, Liz. It seems like sentencing yourself to an eternity of pill-popping! But I am 90 days in - many many more to go - but like you all - I am alive - and plan to be so for many many years to come
Best of luck!
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THANK you bcamnb !!!!!! That is a great idea, to try it & see what happens! You know, I am more afraid of a blood-clot, & stroke, than I am of getting cancer....My age number sounds very much older than I feel,
and I know most people don't have strokes until they are older...So that is why I was hesitating...I didn't know the statistics before I read your post...And for that reason, I will probably go ahead with the treatment...Do you take an aspirin a day with the T? I wanted to ask if any of you gals have taken Tamoxifen, and then had cancer come back? Did you take that test to see if your body does metabolize the drug? I asked the Radiologist about the test, & she was pretty vague, & said something about the "danger" of the test????? Which was no help to me.
I printed off your answer bcamnb ...You women are always here for me to turn to! You have all been there....done that! Your experiences are so valuable to me! Thank you! Jeannette
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Good Morning Tamoxitrainers and some passengers waiting to board:
I've only been on the train myself since September 10th and hesitated just like all of you and was cheered on just like you to make an informed decision and then decide whether to jump on the train or not.
There have been days I wished I didn't but all in all I'm glad I decided to give it a go. It makes me a bit more secure that I've got something that could keep me from another bout of b/c. Of course, I know there are no guarantees. But none of the treatments guarantee anything.
We've started the New Year here with snow and 14 degree weather. Yikes !!!!
Bonnie
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Hello My Dear Team!!
Oh my word, I haven't been on here in a couple of days and there was so much to read. I just skimmed through as I have to run out in a couple of mins!
Alaina ~ Your strength and courage is inspiring! I am sorry about the news you received and I will pray for you as you continue on this journey! You are right, no matter what we are going through God never lets go of us!!
Bonnie, Caroline, & Liz ~ It does seem we have all had some hesitation taking the T. I vacillated between taking it or not. I just decided one day to take the plunge and take it. Like you Bonnie, I have only been on the train a short amount of time.
Jeanette ~ Wow! Your poor body went the wars! Definitely speak to your onc about that. I do take a baby aspirin a day. I was doing that anyway before the bc and have just continued. Also, I don't know if you travel a lot or not, but on trips I make sure to stop every couple of hours and walk around for a bit.
Have a wonderful day all!
Kelly
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Liz,
Thanks for the honorable mention. I graduated to Femara on Jan 1...
Hi all you Tamoxi beauties,
I just graduated to Femara yesterday. The jury is still out as to whether I will be able to take it, or if I'm just too scared of possible se's from Femara....
I'll just take it one day at a time... maybe I'll be able to tolerate it ok.
Harley0 -
Good Luck Harley. Please don't forget about us!!
Best of luck to you.
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Hi all, I am waiting to board. I see the onc. this Wed. and already was told I will be given a script for the tamox. I am very scared as I had such terrible SE's with chemo and even some with rads. Apparently I am "hyper-sensitive" to drugs. Great what does that mean? I was told I will be on Tamoxifen for 3 years then something else (whatever the best new thing is) for an additional 8. I am so confused as to why I would be put on this after having a bilat, chemo and rads. I am just starting to really research. There is so much to read!
Any simple tips~lol like any of this is simple.
Much love and thanks Deb
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Cherneski: Welcome! I have been on tamoxifen since mid Oct 2009. I was a little nervous about starting it and looked at the bottle on my counter a few days before I actually took it. Luckily, I haven't had trouble with it thus far. I recommend taking it with a snack to decrease chance of stomach upset. It seems like a lot of the women here take their dose at night to decrease their hot flashes. I personally take mine in the morning and usually have only wake a time or two feeling hot at night and don't really have hot flashes during the day. My Onc said that around 2-3 months is when people seem to the get hit with the SE's. Only time will tell. I figured that I would take tamoxifen and if problems arose as a result that I would deal with them then. I have an Onc appt on Tuesday so I will see if she has any other info for me. We are here for you.
Harley: Good luck in your transition to femara. Keep us updated on how you are doing.
TCK
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Harley: Good luck with the femara. My onco wants to switch me, in about a year or so. Been on Tamoxifen 3/09. I am only 46 years old and have not had mymy period since Feb. ( chemo days) The test shows i am almost there....So I may be joining you in a year or so....... Keep us updated on how you are doing.
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Deb/Cherneski ~ I have only been taking my T since Oct 1st so I am in my fourth month. I find my only se has been irregular periods and maybe an odd hotflash after a glass of wine (LOL so it is probably the wine). I take mine at night when I go to bed, no particular reason just had spoken to a couple of ladies beforehand and that's what they did. Definitely speak to your onc about your concerns and fears! I wish you the best!
Harley ~ I can't believe that the T ride is over for you! Please do pop in to see us here and let us know how you are doing on the femara.
Have a wonderful Sunday all!!
Kelly
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Hi Tamoxibeauties One and All !!!!!
One thing I have found out is that not all sources we find when we research a medicine are valid. Most are known sites we can trust, but do be careful.
For instance, on another thread I read where this member thought ...... because she said she had read it ...... that Tamoxifen caused bone loss in post menopausal women. I've never read that any where. She was older I guess and was frightened. I'm sure someone gave her the straight up on it or her doctor maybe.
Good luck on your Femara Harley.
And Deb and Kelly with the Big T. I'll soon have a big four months in on it.
)Think I'll go sunbathe on the deck now. The temp has risen from "4" to "8" !!! LOL
Bonnie
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