Bottle o Tamoxifen
Comments
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From one Debbie to another -- I also take an 81 mg aspirin every day with the tamox. My pcp and onc are on board with it.
Cynthia -- I agree about groups but I also have to believe that I will be around for a long time to come. Any other outlook would be too depressing. In fact a friend of mine who is a psychologist on staff at NYU and cancer survivor himself advised me to NOT go to those groups. Talk to friends who have gone through this or are good listeners -- that's worked well for me. Honestly, you sounded a lot more feisty today so maybe that group did do you some good. Feisty will get you far!!!!
Basha,
You sound energized too. Obviously, since you ate all the lobster! That would energize me too. Did you get a lot of painting done? Did you enjoy the beach life?
Good night to all.
Deb
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Hi Dears,
Deb, I did get a lot of painting done and I even plunged myself into the frosty bay a few times. This weekend I start coaching rowing beginners. I'll find out tomorrow if my surgeon signed up!!
Cynthia, I so agree with these prescribed groups. Noone can tell you how to recover, not even me! I love it when you're feisty.
Love, Basha0 -
I'm a new poster to this topic--just started Tamoxifen 3 days ago. Do you ladies happen to remember how long it took until you got hot flashes or any other symptoms? Like, was it right away or after a week or what? I'm hoping maybe I'll be lucky and not have any!!
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Cynthia,
Good to see that you are posting again! You sound as though you are feeling better, and that is a good thing.
I thought of going to a support group meeting, but it just doesn't sound like it would help me. What I need is to 'talk' to others who have been there, and who will not just sit there and judge me, and tell me that "I have to be more positive". Although, I know that it is important to keep a positive outlook on things.I think it helps to talk to others, and when they say, that, yes, they have had these same thoughts I am now having, at least I know that it is ok... like someone on one of the other threads said, "you have to feel what you feel..." that is so true.
I guess there is hope for me, too, since I see you are doing better.
Harley
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Layne,
I am right there with you feeling that the pill caused my breast cancer. I stopped taking the pill after 22 years and it was not long after that I was diagnosed with cancer as well as menopause at 42!
Dawn
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Christianne,
For me it took about 2 months before I started to get hot flushes -- not flashes. My ankles got stiff after about 3 weeks. I now have hot flushes about 3 in the morning. I've found that if I keep my feet cool, the rest of me will follow. I know this sounds strange but it works for me.
Harley,
Know that you are NOT alone in your feelings. Most of what you've said you're feeling I've also been there. Just knowing that I'm not weird (although some friends may disagree) is helpful. And we're all friends here so we'll hold together through this.
Basha,
Do you ever go to any races outside VT? Head of the Charles maybe? I so respect you for being able to row -- that's such a touch sport. You go girl!!!!!
Finally have some decent weather here. Had the opening pool party with barbecue (what else is there in KC?) Hope you all have a great weekend.
Deb
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Yep, Deb, I guess we are in this together, and somehow, we'll muddle through!
My friends and my dh all keep telling me "you are finished your tx... you should be happy!" or "You have a wonderful dh, and a house near the beach, you should be happy!" I can't help how I feel, and that just makes it worse, cause then I feel guilty... D*MN Tamoxifen!Hugs,
Harley
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Dear T friends,
Oh Happy Shmappy, don't you think it's overrated? Harley , your friends have not had BC; we've been through the trenches physically and emotionally. We get to feel any way we want.
Deb, I've only rowed in VT. The secret is I'm not very fast but I have the endurance of an ox. I once rowed 18 miles non-stop. So I just love to row and keep working on my technique. I was 48 when I started!!
Where's my Layne? Get out here girl. It's 95 today in Vermont!!
xxxxxx
Basha0 -
What is with this "you should be happy" thing anyway? I know people mean well, but someday I am going to answer that comment with one of my own: "Oh, yes, you're so right. I should be happy I'm in pain 24/7 and have to deal with chronic infections in the 'saved' breast, and have to go to doctor's appointments every few weeks. Thanks for pointing that out for me, I totally missed it!"
Well, I probably won't ever really say that to anyone, but I do THINK it from time to time!
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Basha,
You rowed 18 miles?? WoW! You are a SUPERWOMAN!!
You are right... After going thru bc dx and tx, we deserve to pamper ourselves, because it has been a rough year. I guess I thought that after all my tx was finished, things would just settle down. I had my nipple surgery on May 22nd, and I've been feeling down in the dumps ever since.
I am not getting my daily walks and I notice a difference when I get out and walk every day. Now it is TOO darn HOT to get my walks, or runs, like I really like to do. I went out today, though, and I hope it will help.Thanks for your message...it made me feel better!
native mainer-
Well, I DID reply to an email from a 'friend' and said...you are right... I should be happy... I AM NOT finished with my tx yet, because every day I am reminded of the bc, when I have to take that stupid PILL... and I have to worry about recurrence, and every pain I get really freaks me out...
But you are right. This 'friend' sort of disappeared while I was getting chemo. She emailed me while I was still mulling it over, and deciding about whether to get chemo... and she said "it's good you're NOT getting chemo, because EVERYONE I know who got chemo, well, they DIED anyway!" Now she KNEW I was agonizing over the chemo decision, and I hadn't even made up my mind yet. In my next email to her, I said.... I'll be starting chemo next week. I bet she felt like a real ASS for saying what she said!!
Thanks for your messages... they really help me to keep going!
Harley
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Basha,
Like I said before -- YOU GO GIRL!!!! You're my hero.
Harley,
We are in this together and anyone who hasn't been through it has no idea what we have and are facing. I've been told how 'lucky' I am since mine was caught early (DCIS) but I don't feel lucky. My cousin has a friend who had to have a dbl mast and has had various difficulties with recon. I wouldn't wish that on anyone but then my cousin tells me that I shouldn't be so upset -- to think of her friend. I finally yelled at her one day that I didn't want to hear about her friend. That I have to get through this my way. We don't talk about my tx or the tamox any more. She meant well but I had to protect me.
And NativeMainer -- I agree with you too. 'Be Happy'?!?!?! What does your husband or where you live or any of that have to do with your health and all of the uncertainties that we are facing. While I do try not to dwell too much, it's hard when you are juggling multiple doctor appts, tests, etc. and still trying to live your life.
Ok, so I'm off my soapbox -- but it's nice to vent to a group who gets it. WE WILL GET THOUGH THIS!!! I'm told by my best friend who's s-i-l was dx about 6 years ago that a day will come when you don't think about it. It took her quite a while -- so, my pals, we just aren't there YET. But we will be. Harley, I will pull you along with me...NatMainer, Cynthia, Lynn, Layne, Basha, Virginia -- all of you. (Can you tell I'm feeling stronger today?) I'm determined that together we'll get through these blues. You give me strength.
Deb
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I have a Tamoxifen question...I'm whispering... I think my hot flashes seem to be getting a little better...Have you all found that over time, they get calm down a bit? It's been 6 months since I climbed aboard the Tamoxi-train. When I stopped taking the Effexor, back at the end of Feb., boy did those hot flashes & night sweats go into high power!
Deb,
There is power in numbers, and we 'breast friends' are in this together, for the long haul!! You must be one strong woman, if you are going to pull ALL of us with you, but I'm with you!Hugs to all,
Harley
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Yes, Harley, me, too. I've been on Tamox a little over 1 year, and at about the 8 or 9 month mark, my hot flashes abated for a few months. The hot flashes are back now. But my hot flashes are very tolerable. At the beginning, when I wasn't used to having hot flashes, they woke me up at night, but now that I'm used to it, I hardly make note of them. They make my skin warm for less than a minute. Big deal. But I don't have a good answer as to why the hot flashes temporarily abated. I'm guessing that I had a perimenopausal surge of estrogen, but nobody's confirmed that for me. I'm assuming that I'm normal. I've asked 3 docs, and none of them registered any alarm.
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Deb - Your post brought tears to my eyes because it's such a relief to be among women like yourself who get it. Sure, I'm grateful for how well I'm doing, but I'm still angry and sad that I have to be dealing with this at all.
Harley - I'm glad to see you posting...hang in there, I know it'll get better. Someone at the support group I went to mentioned that the chemo effects don't leave our bodies for a year after our last tx, which may be true because some of the side effects I was still dealing with a few months ago like dry mouth have improved a lot since then. I agree that having to take a pill each day is a constant reminder of having had breast cancer. Then, in the evening, I take the beta blocker which reminds me all over again. (I need to start taking those pills together. lol) And, my gp is leaving town and I have to find another to get a refill on the beta blocker now. What a pain in the hoo ha.
As for hot flashes, I rarely have one now, so maybe it's normal for them to taper off. I do tolerate coldness better, though, so I may be a bit warmer in general. I hope yours will eventually stop, too.
Basha - 95 in Vermont? Wow! Hope you're staying cool.
Native - I've been to a few talks for cancer survivors where the speaker's message was basically that we should be happy. I kind of felt it was a waste of my time and glad that at least the food was good. lol
Hugs everyone!
Cynthia
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Cynthia--
Good food does make up for a lot of boring meeting, insensitive speakers, and a host of other things, doesn't it?
Harley--
I have heard or read (probably somewhere on the boards here) that tamoxifen hot flashes calm down over time. I was told when I got the Lupron shot (like zoladex, to shut down the ovaries) that I may get hot flashes and that they diminshed over time. That makes sense, out bodies adjust to the lack of estrogen after natural menopause--women don't have hot flashes forever (although I'm sure it feels like forever!).
Deb-
keep that soapbox handy so we can all take turns venting our personal 'hot button' topics!
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Ok, in case I haven't said it lately, I love you girls.... You all never fail to touch a nerve or make me smile....all of you...
Layne, Deb, Harley and everyone who continually asks about how my dad is...I REALLY appreciate it... He's hanging in there... This time he seems to be responding to the IV diuretics which is a good thing. I think he's lost close to 15 lbs! (I really need to fill that 'script I got for my diuretic as I have been moaning about my swollen hands....) We are hoping he gets "sprung" in the next few days.
It's been hotter than HADES here in NJ---close to 100 over the weekend, expected for today and tomorrow...not breaking until Weds. UGH. This is when I am REALLY sorry I don't have central air in my house...
Harley- the "friend" that told you that you should be happy doesn't sound like much of a friend to me... As I've mentioned to you in the past, people really surprise you (both good and bad) during this journey... Sounds like a "friend" you could distance yourself from?? (That's just how I would handle...I would be like "seeeeeee yaaaaaa" - and have done that with people...) As far as the blues are concerned...I wouldn't be afraid to ask for "help" - if that means talking to someone or taking some meds... I'm sure your onc could give you some advice...
Basha and NativeMainer- all this talk RE lobster...sheesh...makes me crave one...had an old boyfriend whose family had a house in Wells...we went to Kennebunkport (ugh...spelling...sorry) for 3 lb lobsters for like $2.99 lb...craziness...
Cynthia- great to see you post...hope you are feeling better...
Christianne- Welcome aboard! You will find me (mostly) in the chocolate car... I am one of those who has minimal SE's from tamox. Had hot "flushes" in the very beginning - maybe about a month into taking the tamox - but I acclimated to the meds and don't have them very much anymore. Don't have the joint pain so much. Although, my lower legs and feet hurt when I get up in the AM, but I don't think that's tamox...just old age...hahaha...and wearing flat shoes all the time.
Dawn and others- I too wonder about the years of taking The Pill...if I could have prevented the BC b/c I also am BRCA neg. Although I do agree (ugh, I can't remember who said it) that there is a gene they just haven't discovered that I have...
Ulla- hope you are doing better. I can't relate to the whole Zoladex thing, so I don't think I have any pearls of wisdom. I had my last chemo in June '07 and got my period in Oct '07. That first one was as you described - "black." I have been regular since....
Lynn- school must be winding down for you by now...
Layne, Deb- Your posts are great...
Yellowrose- bummer that you are anemic... I feel so tired all the time I wonder about that myself...
Ok, my turn to ramble with a huge posts....
Hugs and smoochie kisses from me too!!
Stay cool for those of you here in the NE with the crazy heat! I am GLAD to be at work today!!
Virginia
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Hello ladies,
Layne, you do NOT talk too much! Settle in for another long one - I've been away too long and I suddenly need to do some sharing.
My blues/depression/fog is lifting a little bit. I'm having glimpses of blue sky (despite this crazy non stop rain we've been getting). I see a cancer psychiatrist weekly. She has been wonderful. Right now I'm in the "cut yourself some slack" phase. And, I have to say this has helped immensely. I do not have a husband nor do I have kids, so maybe it is a little easier for me to follow this than those who have more responsiblilities at home. But for me, I am now acknowledging when I'm down, and I'm ok with it. And equally acknowledging when I'm having a good day, or a good hour.
Those people who say to me "you were lucky" or "you should be happy" or even "you should be relieved you didn't have chemo" I say to them one word: "really?" With a very quizical look on my face. This usually gets them to leave it alone or back pedal a bit.
Guess what? I have never felt "lucky" nor "relieved" that I didn't have chemo. I have unrelenting anxiety and fears that I didn't kill every cancer cell in my body. I have this deep, deep gut feeling that just will not go away that we've missed something. When I say it won't go away, I'm talking about a daily, all consuming fear that I'm just waiting for the clinical signs that we messed up by not doing chemo. I realize that there are so many women who may wish to be in my shoes and I SHOULD feel lucky - but this anxiety is really difficult. Surely, the anxiety is probably not nearly as difficult as the chemo would have been, and i think it is crazy to feel this way - thank goodness I am taking an anti-depressant. I cannot imagine what it would be like if I weren't.
Another point of anxiety for me is that I'm in that first three month limbo period. I had read that this would be a difficult time, but boy, did I underestimate how difficult it would be! I liken it to a trapeze act. I'm a novice trapeze artist in middle of my first flip. I've let go of the first bar and I'm waiting to grab on to the next. I do not like this limbo-land one bit.
Wow. I guess I had a few things to share today. I hope that my thoughts were not offensive to anyone - if they were I sincerely apologize.
On a more upbeat (and tamoxifen related) note, I have my first accupuncture session this week. I'm really putting a lot of faith in this treatment to alleviate the joint/bone pain and nausea. I'll let you know how it goes.
I'm sorry I missed the lobster party. Maybe I can host an ice cream social. Special flavors anyone?
Thanks for listening.
Barbie
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Ok, so I read these posts...and I feel like I'VE WRITTEN them!!
(((((((((Barbie)))))))) (And everyone...)
I have had this pain in my upper back for the past week... Rationally I know that it is probably roller coaster back (I was in Hershey PA last weekend)...but panic filled brain says "BONE METS!" (My mother succumbed to BC with bone mets to upper spine (right where my neck hurts).
As far as the whole cancer journey...for me it is all consuming. My mom died when I was 17 (diagnosed when I was 14), so I have been thinking about cancer EVERY SINGLE DAY for the past, oh, I don't know TWENTY EIGHT years. Then I got the cancer, and now I worry every day that it will come back... Sometimes I just laugh (ironically) because when I'm alone in my house (I too have no hubby or kids) all that reverberates in my brain is CANCER CANCER CANCER... I feel like I'm going crazy sometimes.
I have treatments every three weeks (I'm HER2+), so I know I am going to be freaked out when the tx stops...thinking...OMG, I'm not doing anything...
Oh, and the funniest thing...I keep telling my Dad that I have chemo brain...well, he never believed me...until last week there was an article about "chemo brain" in the local newspaper and he all of the sudden "believed" me. ARGH....grumble grumble. My father also never admitted that I had cancer...he always said I had "pre cancer." I'm like, uh, Dad, they don't give chemo to people who DON'T have cancer!!!
Ok, lemme get off my soap box before I fall off and hurt myself. Today I went to lunch with my girlfriends and we had Japanese and then we PAID for Ben & Jerry's... It was yummy on this 100F day!
THANKS for listening to my total RANT... Two long posts from me... SORRY!!
Luv you gals!!!
Virginia
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Thanks Virginia. Wow, today must not be a great day for me. ((((Virginia)))) back at you.
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You women are the best! And long posts are just fine!!!!!
I know that taking tamox reduces our chances of getting this crap again but I can't help but feel that I won't be one of them. And that I won't know it in time. I have another 6 weeks or so until my one-year mammo & U/S and I'm terrified. I didn't have to do chemo but the rads were bad enough. How anyone can think me 'lucky' is beyond me. One thing that I haven't mentioned is that during the rad set-up, a spot was found on my lung -- 3mm and outside the rad tx area. I had another CT in Dec and it hadn't changed. I have another set for July 7. Although I can block it out for parts of a day, I never seem to lose it. I can be strong some days -- like yesterday -- but then others I totally feel adrift. How weird am I? But you women tell me, with your posts, that my feelings are justified. The days I'm strong are because you are supporting me. You all rock!
Virginia,
I love your picture -- did I tell you that already? Glad to hear Dad's doing better but also waking up to the smell of coffee and chemo brain.
Barbie,
I felt like I could have written your post.
Layne, Basha, Virginia,
I remember what it's like in the summer in your part of the world. It's similar here. I just wilt. I'm thinking cool thoughts for you and hitting the ice cream car is a necessity.
Lynn,
Hope school has ended with a peaceful quiet. When are you going back to the US?
Ok ladies, I'm done for now. I love you all.
Deb
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I started this in 2004 and it was horrible at first.Sweats and fatigue and I just felt so ill, but right now,I am A-OK
I do hope its working cos my mammos are not coming back clear and thats depressing
Wish you better luck.And yes i did gain weight.!!!!
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Hello ladies. I am new to this posting area, but I just finished my radiation treatments today (yippee) and now have to find the courage to start the Tamaxofin. I'm anxious about the side effects and figure I'll start in about a week.
It sounds like the SE vary from person to person. I have some friends who didn't experience any and another friend who did have significant weight gain (27 lbs).
I won't see my medical oncologist until 7/7, but she said if I experience the hot flashes and can't bear them, she can prescribe a pill to help with those. Did any of you girls go on meds to help offset the flashes??
Any info would be helpful. I am trying to read thru 47 pages of postings ... and I admit, I have "rad brain". At least that is what I tell my family!!!
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Murphmort,
Welcome to the train! You've fallen in with a great group of women.
Everyone does react a little differently but there's some similarities too. From hot flashes to hot flushes to nothing. And it changes from one time to another for some people. So be aware and keep a journal if necessary to track. We're all here to help. You'll find some of us a little nuttier than others (but who's counting?) but most of us enjoy the dessert car or some section of it.
Deb
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My Top 5 Tamoxifen SE's
1. Swelling (edema) in hands (and now ankles?? maybe from the 100F heat)
2. Tamoxi-rage, especially at astonishingly BAD drivers who SOMEHOW were given license to DRIVE (when I am on the road)
3. Hot *flushes* in the very beginning that were never full blown sweats and have thanfully abated.
4. Heightened PMS feelings some months (irritability and "the blues")
5. MAYBE slight weight gain and joint pain --- BUT, I work for a food company (and I eat all day) and I think my foot/joint pain might be caused from wearing flat shoes all the time...
Read in Health magazine that wearing SOCKS to bed counteracts night sweats...
Deb- yes, you were kind enough to comment on my hair in the past. Thank you... June 21 is my 1 YEAR of finishing chemo, so I will be putting a new pic up then. The curls are crazy, but my hair is definitely straightening out... I may have to break down and get my first hair cut! :O
Another 100F day here in NJ/NY...I'm definitely melting...
Virginia
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Hello everybody, glad to have found this thread.
Like murphmort, I just finished rads, starting tamox today! yikes! It is also my birthday, turning 46, so I will celebrate the end on my 51st. That will help me to remember to stop, just in case the tamox and the menopause make me senile, HA!
Like most I am totally worried about SE. DH read all the warnings last night and was shocked, I wasn't because of all I have read.
Virginia, I used to live in NYC, I know those dog days. I escaped to CO where it can get up in the 100 but dry. Today will be in the 90s... hmm... maybe not the best day to start...
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Hi all. Just finished with radiation, so Tamoxifen is the next step. Everything I've read says to expect weight GAIN, not weight loss. UGH!!
YellowRose, I think that the tamox does slow down your metabolism to a certain extent, as well as promote storage of body fat in the abdomen as opposed to other parts of the body.
I am so dreading starting the tamoxifen - am looking for a reason not to take it al all.
Regarding the eyelashes... my eyelashes continued falling out for a full month after chemo was done. Then, my eyes were totally bald for about a month more before they started growing back. It took another couple of months, but now they are totally back to normal!0 -
Good morning, ladies, and welcome to the new riders--
It's raining here in southern Japan, and is supposed to keep up for the foreseeable future. Ah, well, it is the rainy season after all, but still...
This Friday is my last day at work...woohoo! Paperwork is almost done, my room is getting cleaner, and I've done a major throwing out of junk I haven't looked at in years. It feels good...usually I end up shoving everything into cabinets at the last minute, promising not to do it again the next year. Not this year! Glad to have it (almost) finished...starting the school year after Thanksgiving doesn't help one get in a groove of any kind. I get a do-over next year!
For the new ladies--my SEs have been fairly minimal on the tamox: flushes, esp. at night (worse lately despite the Effexor), and joint pain esp. in the hips but lately in the shoulders, too. Weight has gone down some, but I've worked at that; I don't think the tamox has helped or hurt in that area. Good luck to you all!
Barbie, it's good to see you back...depression truly does suck.
No time for lots of individual messages...but I'm sending good karma to all of you...and hoping for cooler weather in the NE! I arrive in NY on the 30th and would prefer not to die of heatstroke right off the bat. Take care...I'll be in the salty snack car. :-(
Lynn
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Virginia-
I heard that bit about wearing socks to bed helping with NIGHT FLASHES...it is a bunch of malarky!! I was kicking off my socks, and throwing off the sheets, and ripping off my night shirt... STILL SWEATING!!!
Harley
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Harley- LOL---funny mental picture. Oh well...just thought I would pass it on as I read it... Hopefully you can manage with some comfy AC. Last night I had mine CRANKED...(I only have a window unit in my bedroom) so cold I had a blanket on... We had wicked thunder storms last night....lots of trees down today... 85F and no humidity though!
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