Bottle o Tamoxifen
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Happy New Year everyone!
Virginia - 2 years and many, many more to come! I seem to have some of these dates burned into my memory. Saturday was my one year anniversary of my first radiation treatment... I officially dislike the Wii Fit now that you tell us that it not only tells you how much weight you've gained, but also how long you've been off the program. I just wouldn't appreciate that from a box. ;-)
Murph - it is I with the shoe problem. But remember, it is a side effect of Tamox, not a fetish :-)
Sharon - Good luck with your Mammo today and your consultations over the next few weeks. I had a colonoscopy last year and the actual test isn't bad at all. It is the prep that is inconvenient. I told myself I was doing a spa cleanse and that made it easier. Happy Birthday! And I agree with your ya-ya's - your husband sounds like a dream.
Robin - I'm so happy to hear that Tamox is working for your mets! Let's hope you are on this train for a very, very long time. How long did it take to see shrinkage on the Tamox?
Regarding the night sweats/cold sweats - I've got em big. I think that I don't wake up during the hot part and by the time I wake up I'm freezing because I'm drenched. I've been on Effexor two months now without any relief. I've tried sleeping in the nude (to avoid the removal of jammies in the middle of the night), flannel sheets, cotton sheets, towels to dry off 2-3 times per night and even sleeping in socks. The only thing that I think has helped somewhat is that I switched from a memory foam mattress topper to a 3" feather bed. I think this has helped some - but I'm still collecting data.
I see my onc this week and I've got to start writing down all my quesitons for him. I'm going to see if I can quit the Effexor, because if it isn't helping... I've also been instructed by my PCP to ask him about the complex cysts that keep forming on my ovaries. It seems that they are resolving, but they are complex and therefore painful and more problematic. My PCP wants to know if Tamox is causing this. (Of course, I know it is, but because I don't have a medical degree, I need my onc to confirm).
I've missed you all. Like Virginia, it is easier for me to be active on this site when I'm at work. I've only got an old laptop and dial up at home, so things there are slow, slow, slow.
Barbie
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Oh my gosh. I just went back a few pages and read my last two posts. I apologize for repeating myself in the post I wrote just moments ago! It seems that I forgot that I had already mentioned much of my last post in previous posts... Ah Mondays.
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Barbie,
The Effexor didn't really help me very much, either. I am glad that I stopped it. Be very careful, if you stop Effexor. I had an emotional meltdown when I stopped taking it.Please let me know how you are doing, ok?
Sharon,
Happy BDay!!! Sorry it's late! Thanks for the warm wishes on the job hunt. I haven't started yet, because every day something seems to come up. Today we had to go with my MIL to pick up a flat screen TV, and hook it up for her. Much more interesting than a job hunt, though.
Virginia,
Happy BC surgery Anniversary! I found my lump on 2/8/2007, but my biopsy was on 3/15, so that is when I 'officially' celebrate my bc dx. I'm not far behind you!
Hugs
Harley
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Hi all and thanks for the bday wishes.
Today went ok...however I did have to go back in for about 7 more views of my LEFT breast...but the radiologist said the left one is good for a year.....I was there a long time...The weird thing about this right breast cancer was that my left breast has always had the call backs...Anyway glad that is over.
I was freezing in there....but after all my hospital experiences and radiation.....I always ask for the hot blanket....I love those things! No hot flashes while waiting - so they must not be caused by stress ha ha
I know what you guys mean about dates being etched in your head....Sat was the 1 yr anniversary of my surgery...so last year this time I was still walking around with that dang drain....and I thought it was never going to go away
Barbie - I have had some weird pain in my side and back and was wondering about ovarian cysts....and it seems once I lie down I have to pee all the time b/c of pressure.
Everyone have a good week, looks like Va might get some ice tomorrow....
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Sharon - Glad to hear you got the all clear - but holy cow, that's a lot of looks. I've been thinking about my pelvic pain and trying to get a good definition for my onc. I have pressure and discomfort daily. Then I have pain (like ovulation pain but longer/stronger) for a day or two. Then I have pain that feels like my girly parts are bruised. Of course, then there is the regular old period cramping. The pain/discomfort I feel at other parts of the month do not feel like menstrual cramps. I do have the feeling I need to pee a lot too. And some pain while peeing. I also experience discomfort and sometimes pain in lower back. Lately, I've had many more twinges and sharp pains in my upper right abdoment as well as a little weird pain in the lower corner of my shoulder blade. If you are wondering about cysts - check with your Primary Care Provider. Maybe you could have an ultrasound. I've heard that it is a good idea for all ladies on Tamox to have a baseline ultrasound anyway. I've got a fibroid in there but it is tiny, hasn't grown, and unlikely to be causing these issues, but I would not have known that without the US. Ramble, ramble, ramble! Sorry for the long post about my issues!
Barbie
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Barbie,
I have the same type of symptoms, except the pain while peeing. I also have what I describe as tamoxi-rage (PMS - but worse). I have that during my normal PMS time so I'm just a little more grumpy and pissed off at the world than normal. I do have worse periods (heavier, more painful, etc) but they were always bad - hence the birth control pills that were slowly not working on that issue over time. I seem to be rambling as well.
Hugs all!
Trish
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Barbie and Trish -Thanks for the symptom advice. I had a hysterectomy in 95...but guess the ovaries were still in full gear. My last hormone test I was menopausal, but I am getting breast heaviness, soreness and the funny abdomen pains on a schedule...guess we will see when I see the onc on the 20th.
Barbie - Will my hair get as pretty as yours? Great picture...
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Happy New Year, ladies.
Sharon - wow, one year! Virginia - 2 years! Good for you. Way to go, girls.
I am scheduled for a TVU the end of January - it was scheduled for today but the weather was suppose to be icy and snowy, and truth be told, I didn't feel like dealing with it. I rescheduled to the end of January. My last one was Feb 27, 2008. All my doctors recommend having an annual ultrasound.
I am still experiencing the hot flashes, mostly at night. It just seems to be part of the train ride, and I've hit the six month mark for Tamaxofin, so I'm resigned to them. I do not experience the cold as some of you girls are, so that is one good thing.
I'm back to work after a very relaxing two week vacation. It felt great to have the time off, other than being out on disability for three months, I had not taken any time off in 2008. Fortunately, we can carryover vacation time until end of April.
Take care, ladies, have a wonderful day.
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Good morning, ladies!
Sorry to hear about everyone's woes w/ their female parts...hoping and praying for resolutions to all these issues. Sigh...it's always something with our health, isn't it?
I'm still lurking around the mailroom on base on Effexor Watch...still no package. It was mailed the 29th, though, so it should be here by Easter at the latest (yuck, yuck). Honestly, the mail just seems to keep getting slower and slower to here--but only with some companies. I ordered some books from Amazon on a Tues., and they were here by Mon.; it never ceases to amaze me how priority mail can sometimes be as slow as it is. One of life's great mysteries, eh?
Anyway, I'm doing fine so far on my half dose...no murderous rages, crying jags, etc. Last night I remembered I had stashed some pills in a pill carrier in my purse, in case I forgot to take it at home. Three more pills, so I'm good through Tues. Surely my prescription will be here by then.
I've worked four days and now I have Friday off...took a personal day to cheer my Gators to victory over the Sooners! The game starts in an hour and a half, and I'm so excited. The things a 53-year-old single woman can get all cranked up about...
Hope everyone is doing okay. Those of you who live in snowy, icy climes, please be careful! Those of you in warm, sunny climes...I'm envious. Basha, Virginia, Harley, Sharon, Barbie, Trish, Shari, et al...I think of all of you often and read here daily even though I haven't posted much. You're all very important to me...take good care!
Love, Lynn
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I just had my ultrasound today and they found a large cyst on my ovary. I stopped taking it two weeks ago and my periods already returned by the joint pain and fatigue are gone along with the breast pain I was having. Maybe now my onc will believe me.
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Shari - Somehow missed your message...Thanks for the encouragement and I am glad you got an all clear. I started tamox middle of Aug, so been on it about 5 months.
Had to switch my appt to the 28th...the week of the 19th we are headed to Fort Benning for a quick trip to see our oldest son graduate from airborne. We haven't seen him for 2 years b/c he is stationed in Germany and was deployed for 15 months...I can't wait just to give him a big hug...
Yep, I had cancer and my first born at war last year! So 2009 looks good everyday!
dmh - I know this joint pain, fatigue is related to the tamox too! Sorry to hear about the cyst...I am still having these funny right side pains....will ask about the ultra sound next appt.
Everyone have a good night, Lynn hope your meds come soon - are you in the service?
Sharon
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Hi all, I posted here before I started my Tamoxifen. I was started on the Effexor for 2 months before I was to start Tamoxifen. I started it Nov 1 and for the first few weeks things were okay. then I started with big time fluid retention............for a while there I was gaining 1- 1 1/2 pounds a day..........I have put on several pounds the past few weeks (okay, so it was also the holidays) Weird aches and pains are there......have no clue if it is due to aging (agghhhh) or the meds. Hot flashes have also reared its ugly head..........esp at work.............but at night I find I sleep mostly just under a sheet (yes, even in winter)....so I do not have them at night. Would love to stop the meds, but am so afraid to. I did have an all clear 6 month mammogram and do not have to have another one for 1 year. My gyn doc does a routine transvaginal ultrasound during the office visit, so I will get one in a new months. Getting tired of all these doc visits.
Here's hoping everyone has a wonderful 2009!!!! We desereve it!
Donna
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Hi Donna- I'm one of those that complains about the fluid retention!! I know that i've been eating badly and gaining weight b/c of that, but my hands are most definitely swollen... I can't fit any of my rings on my sausage fingers...
I had my annual gyn exam this past November and my gyn said I DID NOT have to have a TVUS. I was glad about that, but now that I'm reading all of you ladies having them yearly...I'm thinking, uh oh...
Have missed 2 tamox pills in the past couple of weeks. The first one I blamed on being off for 2+ weeks... This past Monday I missed...who knows why... Another funny story... I was filling my tamox pill box, and became a total butter fingers...dropped the pill bottle in my bathroom sink...who knows how many I poured down the drain. I was just like, "aaaaaaaaaaaaaaaahhhhh" Stoooooopid me...
Happy Friday girlies...love you all!!
Virginia
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Hi All!!
Like Lynn I've been reading the posts pretty much daily but don't always post.
BTW Lynn-- Hope that bottle of effexor arrives soon for you. I haven't tried effexor yet but may need to (seeing if I can handle se's without it for now) How are you doing with SE's these days? Didn't I read a while back that you were having hip pains? If so are they gone now and if so what did you do for them?
Sharon and Barbie--
If I had to sum up my whole BC and Tamox. experience with two words it would be "WEIRD PAINS"!! Everything from hips, shoulders, pelvic and neck. It's oddly comforting to read other's posting similar descriptions. I like to blame Tamox. for all my woes. HA!
Sharon--have a great reunion with your son!
Harley-- good luck with the job hunt!!
Hoping we all have a better 2009!!!
Shari
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Atomic Lynn,
Hi, there! Hope you are doing ok, and hope your Effexor gets there ASAP!!
Oh, Virginia, dropping Tamoxifen pills down the drain is not fun! I guess you can always get a refill before your Rx expires, can you just call your onc and get a new Rx? I did have to call my onc in Sept., because my pills were fixin' to run out in November, but I wasn't scheduled to go back to see my onc til mid-December! I always wonder WHAT the heck they are thinking when they schedule our follow ups at such strange intervals?
Shari,
Thanks for the warm job search wishes! I haven't really started looking in earnest yet, because well, we are going on a cruise in Feb., and I wouldn't want to have to explain why I need to be off for about 3 weeks, right after being hired. (Sheepish grin...)
Hugs
Harley
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Harley! When/where is your cruise?? Cruiseline...etc! I need details girl!! I am going on the Exploerer of the Seas on March 27th...Caribbean cruise...this is the one I booked more than 1 year ago. I can't believe it's almost here...
No worries on the Tamox down the drain. I actually saw my onc back in Nov and she gave me a years' worth prescription. I had sent it to my mail order place (I get 3 mos at a time) and they basically sent me a bottle when I didn't really need it...Which annoyed me at the time, but I guess the cosmos knew I would pour the other bottle down the drain! :O It was near the end I suspect...so not that big a tragedy. I am very lucky as I only pay $10 for a 3 month supply of Tamox.
Well, it is NASTY here today. We had snow yesterday...and over night we must have had freezing rain... When I went out today to get my newpaper, my feet barely sank in the snow/ice, so I fear it's going to be a giant pain in the bootie to clear the driveway...
Need to get cracking so I can watch the Giants game!
Happy Sunday girls. Love you all,
Virginia
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Virginia,
Oh, good! I'm glad that you didn't lose your Tamoxifen, and now will run short. I got an extra bottle, because my onc didn't give me enough, and I was ONE MONTH short, before I saw him in December. When I called for ONE extra month, he gave me THREE extra months! Maybe I'll go and pour some down the drain, too!
I pay $9 for 3 months, so that isn't too bad.My cruise, well, it's the one we have been planning since two years ago, before my bc dx. We were going to leave on a 14 day cruise over Christmas and New Years, but it was a high-end cruise line, and I just felt really anxious about spending all that money!! So we cancelled that cruise, and booked this one through a neighbor of ours, who is a travel agent. It is through Oceana cruise lines, and it's the Regatta (ship name). We leave on Feb. 13th, and will return on or about Feb. 25th. We will go down a couple of days early, and stay with some friends in Cocoa Beach. The destination is eastern Caribbean (the cruise is called Caribbean Pearls). We will be going to the British Virgin Isles, Turks and Caicos, and St. Kitts, among other destinations. This was SUPPOSED to be our 20th wedding anniversary, but my dh's Dad was dx'd with kidney cancer, with bone mets, so we had to postpone it. We just celebrated our 23rd wedding anniversary (on Jan 4th!), so I figure after my bc dx, since no one knows what will happen in 2 years, we should also celebrate our 25th anniversary!!
Oh, I know you will have a wonderful time on your cruise, too!! I have not sailed with Royal Caribbean, but my surgeon did, after my bc dx, and he had a great time!
Enjoy the Giants game! We are watching it now. We don't care who wins, we just don't want Pittsburgh to be in the SuperBowl. Since we are from Maryland, we root for the Ravens.
Sorry for all the rambling...
Hugs to all,
xoxo
Harley
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Hi Gals, Glad you're both cruising. Never have done that, except in my rowing shell on the river. I joined Facebook today and have been frittering away my time. Fun!
Love y'all and hey to Lynn. Basha
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Basha! I JUST joined FB too!!! PM if you'd like to be "friends"
Anyone else on FB?? It is cool. I only have 22 friends...my niece...well, she has 572 friends!!!!!!! Right now, I have my name hidden to everyone...but I can change that...Harley! Your trip sounds fantastic. Congrats on 23 years of marriage. That's wonderful.... Your cruise sounds really great. I have traveled on RCI and love them...also love NCL...
Haven't tried any others...Happy (yawn) Monday girls!!
Virginia
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Hey Basha! How do I find you all on Facebook??
Virginia,
I have only about 7 friends on Facebook! I think I am pathetic!! Also, I don't have my pic on there yet...
I'm really looking forward to the cruise! Thanks for the happy anniversary wishes!
HUGS
Harley0 -
I just joined FB too. I, like Harley, am pathetic too! I only have 7 friends.
Have fun on your cruise.
How can we find each other on FB?
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Haven't been on in a while.
I joined FB in November.
On another subject, has anyone had severe leg cramps with Tamox? Ihad such severe pain that I had to leave work +go to the ER My leg swelled up and I was scared it was a clot in my leg but it was a low Potassium level which my be caused by Tamox.
(been on Tamox since 7/07)
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LOL- you are NOT pathetic b/c you only have 7 friends in FB!!! For sure... It's a generational thing. My niece has 573 friends....but she's also 19...although I didn't even KNOW that many people when I was that age. Anyhow, I have 25 friends but that's because I work with a lot of "kids" who let me be their friend!! We would have to know each other's names to search in FB...and I have to "unhide" myself so you could find me...
karol- I had really bad cramps in my legs for a period of time...charlie horses that went away thankfully. Don't know WHY they went away but they just did... Got them in my feet. Now my biggest complaint is water retention...
Virginia
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No one is pathetic because of FB friend list!!!
I just started too + have more than 7 only because my relatives have all members of their families as friends LOL Virginia- Water retention is the pits! Hot flashes have lessened but I have a dry mouth 24/7!have had leg cramps and take Flexiril but it's not so bad I'd go off Tamox,I have a Dr appt 1/15, and blood tests for electrolytes.....always something,isn't it?
Karol
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That's the best advice I've heard, lately. Love the "shoe prescription"!
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You guys are too much! I don't think my kids would let me join FB!!! And they definitely would want me as their "friend". LOL!
One of my son's friends moms was diagnosed with BC. Her surgery is next week, then rads and chemo. I spent time with her on Saturday, talking and gave her some books that I had received. It's upsetting to hear of another family that has to go through this.
Have a wonderful day ladies.
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No FB here...
I've got an update for ya gals. I had a very productive meeting with my Onc last friday. First of all, the liver MRI was stable which is great news - rescan in 6 months. Second, I explained all my pelvic pain issues and the recent formulation of complex ovarian cysts and changes in my cycle etc., and my onc ACTUALLY said "I think that all of those things could be caused by the Tamoxifen." I was so happy to hear the onc validate my symptoms, and actually attribute them to Tamox. Too often we hear that our symptoms are not related to the meds we take, and then it seems like the docs just let it go and don't try to get to the bottom of it all. We had a little discussion about whether or not I should remain on Tamox. I explained my anxiety about going off. He suggested I see a gynecological oncologist to rule out other pathologies. He believes that they will concur with his thought that Tamox is causing all of this, but HE wanted me to have another doc consult. How refreshing! Have I said lately how much I love my onc?
Night sweats - he thinks that the night sweats are an underlying reason for my fatigue. He believes Tamox can cause some fatigue, but that my case is probably exacerbated by the lack of sleep. I'm now taking Tamox at noon-ish to see if I can lessen the night sweats. It has only been a couple of days, so it is hard to tell a difference.
finally, I asked him if I could go off the effexor XR because it wasn't helping with the night sweats. this drug was not prescribed by him, but rather my PCP. He said yes, I could go off it, but to go off slowly - skipping every other day to start. Holy Cow. Serious withdrawl symptoms and I've only been weaning myself for 3 days. I think I might stay on the Effexor until I get used to the Tamox at noon. One thing at a time...
Very, very cold here in Wisconsin. Wind chills near 20 below today, and a high of minus 5 tomorrow with wind chills in the minus 40 range. I'm so bundled up that if ever I'm going to get a hot flash, this would be the time.
Hugs my friends. Barbie
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What happens to the cancer cell once Tomoxifen binds to it? Does the body get rid of it? Or...does the tomoxifen treated cancer cell hang around? I know Tomoxifen competes with Estrogen so some cells could be hanging around after treatment to explode again....just need clarification....and I do not want to research all over the internet.
Love,
Terry
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Yes,murphmort, my own grown children do not want to be my "friend" on FB However, my grandnephew and neice do LOL!
It's great that you gave support to her after dx w/BC, and it is upsetting, but as you know it's so helpful to the newly diagnosed.
A wonderful day to you,too
Karol
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Figured it was time to switch back to a picture of my regular self rather than my sassy wig from during chemo. Not sure if you can see, but my curls came back even curlier!
Recently returned from our cruise celebrating one year after my BC diagnosis. It actually was the trip we had to post-pone due to my surgery. Boy is it nice to have surgery-chemo-rads in the past. Coming up on 6 months on tamoxifen. Generally doing well but the hot flashes have jumped from mainly once a day (middle of the night) to multiple times per day and sometimes per hour. Also getting the cold flashes that Basha, Shari, Harley, & Barbie mentioned. It's a bit ridiculous - dressed for the 20 F temperatures then sweater off and wearing sleeveless tops then layering on the sweater again. And if that wasn't bad enough, my cheeks and nose turn bright red with the hot flashes and (yes, you are allowed to chuckle) my glasses actually fog up. Can you even believe it? So, does anyone have experience with something that does work to reduce the hot flashes? Thinking of trying Black Cohosh first. Heard someone swear by Megase at my "BC graduates" support group meeting so may look into that. I do see my Onc again at the end of the month so this certainly will be one of the items we discuss.
I'm with you and many others, Virginia. Period is intermittent since being on tamoxifen.
Barbie - If you wouldn't like Wii fit telling you the change in weight and days since your last visit, I'm guessing you really wouldn't like how it adjusts your Mii once it has your weight. My Mii changed from thin to roly-poly. I do enjoy many of the balance games and am trying to use it at least 3 times each week. Must say that I think it helped me recently ... while in San Juan, I did a Segway tour of the historic sites. Lots of fun and balance is the key for safely operating the Segway.
Lynn - congrats to your Gators.
SharonS - glad things worked out with your check-ups.
My GYN also is not a believer in annual TVUS. She said, we know there will be changes; will check when there is an indication of the need (like spotting).
Harley & Virginia - I just got off the Explorer of the Seas on Sunday. 9-night to the Caribbean. Loads of fun. Would love to do a longer cruise. Wish I would be sailing with you. We've been on both RCI and Princess so far. Likely will stay with RCI in the future. Are you familiar with http://www.cruisecritic.com/ and its message boards? My DH thinks I am a bit nuts but I love connecting through the roll calls to others we will be sailing with and then meeting them on the ship.
Take care everyone!
Joan
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