Bottle o Tamoxifen
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hey ladies!
ive finished my chemo nov 2006.After about 8 months.im also on the tamox train, have been travelling on it for about one year as i started after chemo,..yeah, its hard to remember , i think because ive blocked alot of it out.ive just recently statred to have trouble sleeping. i had bad hot flushs.(not anymore thank god!) Ive started to wonder if ive gained weight from tamox or because of the xmas period..mmm...wine!..red of course ( its got antioxidents as you all know its good for you!!! thats what i like to tell myself .) Also i havent been going to the gym as much,i usually do alot of (light)weights and am fairly fit and healthy .Im only 29 and havent had kids....YET.
ive just experienced my first period in one and a half years!!!
my advice to weight gain is to excercise daily.Maybe try light weights as muscle actually burns fat so the more muscle you have the more quickly you burn fat!!
i hope i get someone replies as i dont ever write anything usually.
im in australia, and was dx with stage 2 grade 3 er+ pr+ her2+ 3/15 nodes.
trying to remain positive...lara
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hey, im new to this, and my typing is not great.hence why my writing was in bold, i have no idea! lol
has anyone heard of a lady named "mcpete"?? im trying to find her.
lara.
xxxxx
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Welcome Lara and Helen!!
(I spend most of my time in the Chocolate car and the Martini car on this train...oh, and occasionally the Dunkin' Donuts car!!)I am a chronic insomniac and also have always battled my weight, so I don't even think to blame it on the Tamox... I need to get my heinie in gear and join a gym...but I just hate to exercise.
For all you gals that know how I forget to take the Tamox...I think I am going on more than 2 MONTHS without forgetting! This is unprecedented!!
Whoo hoo. Happy Friday...
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Welcome Lara from down under and Helen from the Bay area!
You'll find that this train meanders a bit but mention any fun food and we're right back on track!
Virginia,
Good for you -- not missing a pill for so long. Those little boxes with the days of the week on them are great. I've been on about the same as you, also haven't missed.
I did feel like I had a victory yesterday. My gp's office said that I had to call them every month to renew my Ambien CR -- couldn't just call the pharmacy and get refill. So it was time again. I picked them up yesterday and they actually gave me 5 refills! SO much easier. Without that, I wouldn't be getting much sleep. That's my solution to sleeplessness. I feel fine in the morning and sleep 7 hours each night.
I'm still thinking about chocolate chip cookies but the other night I had a cinnamon chip scone -- yummy!
D
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Hello to my tamox friends. I am back on the train. I guess I never left (when it comes to the pill taking), just out of commission for awhile. I am recouping back home from my reconstruction surgery. Doing ok.
I just wanted to pop in and say hello to all. Feeling still somewhat woozy, so reading is not too easy right now. It will take me awhile to catch up.
I do have one question. Does anyone else have severe pain and discomfort in there arms?? I have it primarily in my right arm..from my elbow down through my wrist and into my hand. I am wondering if this is tamox or something else. It is very bothersome and painful.
Thanks ladies. Have a great day. I will check back in again later, when I am stronger.
xoxo
Lisa
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Lisa,
Glad your surgery is over. Take care of you. The train keeps rolling and I'm sure there are some quiet seats for you. Feel better!
D
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d- you are right...the pill box is the life saver...that and the fact that the box sits right on the vanity so I HAVE to see it every day. My problems arise when I "clean" and put the box in the drawer...then I forget! (So, I just basically told you I haven't cleaned in 2 months...haha...just kidding).
Lisa- wishing you a speedy recovery. I had major pain in my infusion arm for about 6 months post-chemo. It was awful. It was b/c I didn't have a port....the pain is finally going away.
V
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Greetings from the "squeaky wheel" in Japan--
I stayed up Friday night until 11:30 to make phone calls to the states. First to the billing service from whence I received the $2355 bill for "experimental radiation treatment". Of course, I got a woman's answering machine--leave a message and she'll get back to me. Right--in the middle of the night. Sigh. So I decided to call the cancer center where I had my treatment to talk to the insurance lady there and see if she could give me any info. Long story short, she put on hold and called the billing place on another line...found out that I am NOT to pay the bill yet. They have appealed this bill to BCBS as they think it's not correct either.
Is that weird, for a billing service to appeal a bill? Is it the insurance co. just trying to slip one over and hoping to get some undeserved $$ out of me? I've read my policy, but I have to admit to being a hopeless idiot re: the whole insurance process. Anyway, I don't have to pay it--yet. Woohoo! One down
Then a call to the onc's office...the nice woman at the front desk said that yes, she had received both of my faxes and had given them to the dr. She said she would take the latest one and put it on top of his pile. Lo and behold--an email this morning saying he had faxed a prescription to Medco for Effexor for me. Woohoo again! The email was from Mittens4...something tells me that's not this older man's email address but the girl at the front desk. :-) Whoever, whatever--I should be in business soon!
Lisa, so sorry you're laid up after your surgery. Hope you're feeling better again soon. The pain you mention could be from the tamox., but is there any swelling? Just praying it isn't the beginning of lymphedema.
Welcome, larjo...where in Australia are you? I love your country...been there twice and loved. I'd move there tomorrow if they had a teaching job for me. I, too, am a red wine lover...and Australia produces some great ones! Give me a nice Shiraz, cab sav, etc., etc. Too many calories for me, though--I have to cut it way back. I'm trying to lose, too...no weight gain from the tamox., just life in general, I think.
Helen, I'm in Sasebo, on the south island, about 45 minutes north of Nagasaki, of a-bomb fame. Interesting your friend being married to a Japanese man...you don't see that too often. I'm thinking American woman are too outspoken and independent, for the most part. Now Am. men married to Japanese women--they're everywhere.
Take care, fellow passengers...have a good evening! It's a beautiful sunny Sat. here. Sleep well!
Lynn
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Hi Lynn! Celebrating with you on your insurance successes! I'm always hollering when I finally get some movement on things. Big pain and mood management opportunity. lol We went on COBRA right before I had my bc surgery and I kept getting these letters saying in bold type : Preexisting conditions not covered! Hello!! My friends live in Nakahara, they were missionaries for awhile. Why are you in Japan? I'm assuming you are American?
Lisa, rest up, let your body heal.
Welcome Lara - gosh you are young for bc. Keep working on those thoughts - keeping them positive!! I am doing the same.
Virginia - you sound like the type who likes to party! I to hate to exercise too, but I've been walking regularly with my family so I am glad for that. I use those 7 day pill boxes as well and keep it out on top of the microwave so I see it every morning. If I put it in a cabinet I'd forget it. So I'm with you on that - congrats on taking it 2 months straight!
TGIF!!
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Hello everyone! I will be finishing up radiation next week, so have been following your posts with interest. Thanks for sharing your experiences.
I have a question.....When I last saw my onc (post chemo) he advised me to see him again mid March (a month after rads). Well....that means AT LEAST a month or more before I even get a script for tamox. Is this normal? On the one hand, I wouldn't really mind a month of not being watchful for SE's, on the other, I'd feel a bit "unprotected" for that one month.
Have a good weekend everyone!
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Hi Lori,
Welcome aboard! There isn't any research that shows the best time to start Tamoxifen, so it's flexible. I took a week off after rads because I just wanted a break, but other women take longer so it'll be fine. If you really want to start sooner, you could just call his office and ask for a rx. My onc wrote me one when he saw me right before rads, but told me to take it when my rad onc said so I don't think your onc needs to see you before you start taking it.
Helen - I don't actually live in the Bay Area, although I lived in San Jose many, many years ago. I currently live in the valley, but our Girl Scouts and the Bay Area GS are under the same group (I don't know what to call it, this is all new to me, lol).
Lisa - welcome back! I don't have severe pain, but my wrists and hands do bother me sometimes, especially on the side that had all the work. My elbow even hurt for months after my excisional bx. I wake up sometimes and my hands are swollen and my fingers are stiff. My drs have no idea why. I hope you get some answers.
Lynn - I'm glad you got results from your onc's office. I hope you feel better soon! As for your insurance issue, it's not unusual for your dr's office and billing service to help you get it paid. They may have even coded it wrong or they're used to BCBS pulling sh*t like this (they're known for it, lol). Just keep fighting to get them to pay it and they will eventually if it's a valid charge which I'm sure it is.
D - Ambien CR? Hmmm...I might need to look into that. I still need to try Melatonin, too.
Lara - Welcome! I have a feeling that my period will be coming back, too. I had my last one a year ago April. The last couple of days, I've been feeling very achy/crampy, tender, and full in my abdomen. I'm either ovulating or going to start my period. I guess that's a good thing, but it sure has been nice not having to deal with it. It makes me consider having a hysterectomy/ooph. I think I'll talk that option over with my onc in a couple of weeks.
Have a nice weekend everyone!!! We're enjoying weather in the high 60's today so the kids are playing in the backyard while my hubby does yard work.
Cynthia
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Hi Everyone , Cynthia , glad to see you had a good weather day and the kids could play outside. I am so sick of winter , I will really appreciate our first spring day!
Are you still wearing the monitor? My palps stopped two days after they started. But this past Wed. , they started again! And haven't stopped yet. I stopped the caffiene , but that doesn't seem to be it. I see my onc on the 28th. I hope they have stopped by then. If not , I'll see what he has to say about it. when I take my pluse , it is not rapid , or extra beats , it seems to miss a beat. Let me know what you find out.
Hope everyone is having a good weekend. Hugs, Melody
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Hi Melody,
Yes, I'm still wearing the monitor, although not at the moment. lol I took it off this morning when I showered and didn't put it back on because we went out to eat. I have another week of wearing it. My heart has been pretty calm lately. It's weird how it acts up in spurts. Mine seems to "miss a beat", too. It kind of pauses.
I don't remember if I already posted this, but there's another thread about heart palpitations that occur after Neupogen/Neulasta shots. Some women continue to have palpitations for years after they had the shots. I've always been prone to palps/tachs, but they got worse and more consistent after I had the first few Neupogen shots. My onc nurse told me it's considered an allergic reaction and to take Benedryl (which didn't help). Now, I'm wondering if this is going to be a long term problem for me.
I hope yours resolve.
Take care,
Cynthia
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hi Cynthia , thanks for responding. Wow , I heard of that somewhere else here about the Neupogen shots. I got those too. Boy , we have all been through so much , and we still have to be concerned about reprocussions from treatment and all. This really sucks!lol I had a stress test before my surgery and two echos with chemo. I told them , I too was prone to palps. They said that all was fine. So I wonder if I need to see a cardiologist. Is that who has you on the monitor? Well , good luck to you.xx Melody
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Hi Melody,
Yes, I have a cardiologist now. Just one more dr to add to my collection. lol My gp first did an EKG, a 24-hr holter monitor, blood work, an echo, and put me on Toprol XL before sending me to a cardiologist when I didn't respond to the degree she thinks I should have. The cardiologist gave a treadmill test, another EKG, and put me on the 30 day event monitor.
The last two evenings, my heart has started to beat hard and fast for about an hour or so and I think it's when the Toprol has worn off. I read that it peaks at 8 hrs and so it would make sense that it doesn't last the full 24. Plus, I don't take it at the same time each evening. It makes me wonder if I'll ever be able to stop taking it.
It is depressing that the very tx that may have cured us, may now interfere with our quality of life. But, such is cancer. I just keep telling myself that it could be worse. lol
Cynthia
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Thanks for answering my question Cynthia. I think it would have been great if my onc would have given me the prescription before-hand. Sometimes I wonder if he has much foresight.
I sure hope your heart palps are very short-lived and temporary.
Like you, I've heard that they can be caused by the shots, and also a withdrawal symptom form certain meds. So, here's hoping it's just something that simple.
I guess I'll call my onc and come back when I find out the date of my boarding pass.
Take care all.......
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Hey ladies!
Didn't check in yesterday -- looks like I missed a lot!
Cynthia,
Ask about Ambien CR. It has definitely helped me.
Lori,
I agree with Cynthia about when to start tamox. My med onc gave me the script before I started rads but my rad onc wanted me to wait until I finished rads. It was after my one month check up with rad onc that I started on this train. My med onc left it up to the rad onc to tell me when to start.
Lynn,
Way to go! Glad to hear you squeaking!
Cynthia,
Go ahead and rub it in that you have nice weather! It snowed again today! YUCK! I'm SO ready for spring.
It's late Sunday evening right now. I have my first follow-up mammo and U/S tomorrow morning. I'm ready for tomorrow to be over.
D
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Hey ladies!
Didn't check in yesterday -- looks like I missed a lot!
Cynthia,
Ask about Ambien CR. It has definitely helped me.
Go ahead and rub it in that you have nice weather! It snowed again today! YUCK! I'm SO ready for spring.
Lori,
I agree with Cynthia about when to start tamox. My med onc gave me the script before I started rads but my rad onc wanted me to wait until I finished rads. It was after my one month check up with rad onc that I started on this train. My med onc left it up to the rad onc to tell me when to start.
Lynn,
Way to go! Glad to hear you squeaking!
It's late Sunday evening right now. I have my first follow-up mammo and U/S tomorrow morning. I'm ready for tomorrow to be over.
D
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D--Sending good karma your way for an uneventful check-up. Please let us know when you get done!
So sorry about your heart issues, Cynthia, Melody, and Lori. Great--a cardiologist to add to the mix. At least it sounds like you're well taken care of.
No news from here...I have Presidents' Day off, so I did laundry, piddled around the apt., and then went to Huis ten Bosch. It's a replica of a Dutch village that's about a half hour from where I live. My 3-year membership expired while I was in the states for treatment, so thought I'd go out and renew it finally. It's beautiful there...they have exhibits, shops, restaurants, etc.; I like to go every now and then just to walk around and enjoy the scenery. Today I spent an hour sitting on a bench by the marina enjoying the sun...a nice way to spend my last day off until spring break.
Nothing else to report so I'll close. I picture you all sleeping peacefully while I type this...almost time for dinner here. Take care!
Lynn
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Dear Tamoxfriends,
I've been keeping up with reading, but not posting. Sorry!!
D, I am so keeping you in my heart while you get your first mammo. Sure do know the anxiety. I hope they let you know right away.
Cynthia, I've used Ambien CR for years with good results. I also have used Ativan, and find the Ambien gives me less grogginess the next day
Virginia, how's shakes, honey? Managing with your papa?
Did I tell you gals my surgeon gave me some tools (tweezer, reostat) after my stereotactic? My friend in the waiting room said, "Looks like you had a happy meal!" Hee hee!
Basha0 -
Dear Tamoxfriends,
I've been keeping up with reading, but not posting. Sorry!!
D, I am so keeping you in my heart while you get your first mammo. Sure do know the anxiety. I hope they let you know right away.
Cynthia, I've used Ambien CR for years with good results. I also have used Ativan, and find the Ambien gives me less grogginess the next day
Virginia, how's shakes, honey? Managing with your papa?
Did I tell you gals my surgeon gave me some tools (tweezer, reostat) after my stereotactic? My friend in the waiting room said, "Looks like you had a happy meal!" Hee hee!
Basha0 -
Lynn- I picture you all the time in Japan and think that is so exciting... I moved from NJ to CT and couldn't handle it... LOL That's very cool. You are a teacher? Is that why you are in Japan? In the military??
Basha- thanks for asking about my Daddy. He's still in the hospital...has been since Superbowl Sunday. It's been extremely sad b/c his mind is not right. None of us kids expected that....we all thought his body would fail him...not his mind. So, it's been exruciatingly sad.
It's ironic...watching my Dad go through this has actually been harder than my whole breast cancer journey. I guess b/c I am not in control of my Dad's destiny and know what the outcome will be... At least with me, I was doing all the "right" things and knew there was a light at the end of my tunnel.
Ok, sorry to babble... But I thank you for your patience and support! It REALLY helps...
Virginia
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Hello,,,,
Is there a seat on the train for me ???
Just had my first onc appointment and lo and behold am trying to make the decision as to whether to take this stuff....
They let me take time to decide becuz I mentioned that I may want to get pregnant seeing as I just got married and I am almost 40.
I dunno, It looks like I am going to take this darn pill, and probably adopt. Don't think that I can get pregnant and survive it thinking about bc cells floating around in my body!!!
Anyway,,,I have enjoyed all of the posts,,, I think I have almost read thru the 25 pages!!!
Hugs and luv...
Kosh........
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Kosh,
There's plenty of room here. I like to sit back and enjoy the Starbucks car and the chocolate car. Let us know what you decide.
luv ya!!
Trish
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Thanks D....good luck for your mammo today.
Lynn, thanks for the well-wishes. I don't have heart issues (that I know of), but ya never know....there's always time to throw a cardiologist into the mix. lol I'm sure you just noticed me talking about symptoms in relation to Cynthias situation.
Virginia, I'm truly sorry about what's going on with your dad. It's so very difficult and heartbreaking to watch a loved one lose their mental clarity. My thoughts and prayers go to you and your family.
Koshka, good luck with your decision...not an easy one, I'm sorry.
As I said before, I'll be back later on. I heard this party is a BYOB.
Done with rads on Thursday, so I guess I will just worry about that step for now.
Take care.....
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Hey there!
I just wanted to let you all know that my mammo and u/s came back clean! I took my pain meds so I'm still kinda sleepy but wanted to let you know. There is a significant fluid build up though. That probably explains why I'm still so uncomfortable. I see the surgeon on Monday. He may have to drain it -- he did in October, not very pleasant but did relieve the pressure.
Thanks to you all for the good wishes -- they worked.
D
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D , Good for you!!
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Woohoo, D.!
Lynn
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D - Congrats! I'm so happy for you.
Lori - Congrats to you on finishing rads in a few days. That's so great.
Kosh - We'll save a spot for you in case you decide to come aboard. I'm sorry to hear that you're having to make a choice between Tamoxifen and children. What a difficult choice to have to make. If you choose to do Tamoxifen, perhaps you'll still have time to have a baby after your 5 yrs is finished. We were planning to have another child until my dx and I would have been 43/44 yrs old. We'll be here for you if you decide to join us.
Basha and D - Thanks for the Ambien info. I'll have to look into it if the Melatonin doesn't work.
Virginia - {{Hugs}} I'm so sad to hear about your dad. You and your family are in my thoughts.
I have a bone scan tomorrow since it's been a year since my last one. It's hard not to freak out. I hate being under that machine so badly. I plan to take a Valium this time to help me get through it. Then, it'll be the waiting game again because I won't get the results until I see my onc a little over a week later. I hope I won't have to have a bone scan every year. I guess I need to ask my onc what the schedule is for the various tests.
Sweet dreams all,
Cynthia
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Hi again!
the choice babies/tamox is hard... but is it really a choice? the way I see it, a baby may not come around anyway.
When I discussed it with the onc, I heard the same story (maybe in 5 years it will still be possible, haha I am 44).. but I prefere to be alive and kicking for my existing kid, than pregnant and with recurrences. Also, what I found discouraging is reading the stats about how aggressive is BC when found during or right after a pregnancy... obviously, all the hormones send the ER+ in high gear.
To some extent, the concept of babies was already parked in my mind, but it was still a possibility. The hard part is to come to term with the fact that from now on, it is simply impossible.
Anyway, bottom line... tamox it is for me. I am on since jan, so far not too bad (hot flushes and joint pain). I don't know if the joint pain is related, or if it is just arthritis setting in - it is too easy to put on tamox everything as SE, but in fact I suspect that it is genetics... ouch.
I am heading off to the bar car of the train, and getting a stiff drink - drats.
Cynthia - best of luck on the bone scan. Those machines are nerve racking at any time...
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