Bottle o Tamoxifen
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Fabulous! I love it and will pass it on to all I know!
Thanks!
Jan
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phxsunshine - Awesome! Will pass it on.
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Nice list, phxsunshine! Lots of good thoughts there.
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First day on the full 20mg of Tammy. I am splitting the dose and so far so good. I have noticed my toe joints are aching like crazy. Is this supposed to happen this soon?
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Loved that list Phxsunshine, and may even write it down and put on my fridge!
ECT, lately my motto is: whatever it takes to keep a positive mood. This morning, my husband, who has many things that he worries about on a daily basis, asked me how I could be so carefree. (I was humming along with the radio). I replied that there are many things that I could start thinking about that would make me unhappy, but that I prefer not to think about them. I could sit and think, what if BC comes back? But the odds are in my favor that it won't come back. I just turned 50 and don't want to waste anymore of my life being unhappy. I think stress could have played a part in me getting BC, and now am making an effort to learn to enjoy life more without feeling guilty or pessimistic like I used to about everything. I realized that I love listening to music from the 70s, so I play it every chance I get.
East Coast girl, interesting, I never heard that before. I am one of the ones who quit tamox for over a month and did have some relief in SE. I'll ask my Onc in 2 weeks when I go for my next appt. I am even thinking of taking another break, because as someone mentioned, I have dry mouth all the time now, and for the past 2 months, constant either sore throat or cough, and the side effect of irritated eyes is now becoming burning eyes. I want to see if cutting out the tamox gets rid of these problems or if it's all just from aging.
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Hi you guys! I just read what you all posted! Sunshine....I love the poem! And rgiuff...what you said is also true! If we can just find it within ourselves to stay happy, & yes, hum or whistle while we are doing something, it makes us feel better! It might irritate our dear Husbands, but so what? Ha!
They, as they get older, seem to welcome the blues & that little cloud that hangs over their heads..... It's harder for them to find a reason to be "happy".... And me? I'm just happy I woke up! Dang!
Attitude means so much...and helps us through even the toughest times.....
Now the older I get...the happier I have become.....
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Chevyboy: Yep, agreed. Some days we are allowed NOT feel so happy however. I was like you, always the positive one, everyone gravitated to me and always 'admired' me for being the 'strong one' (my kids still do, they have no clue--they are adults). I've been told to write a book on my medical issues and how I've positively dealt with them my whole life...well, dang, right now I ain't feeling so very strong OR happy! AND I'm finally admitting to ANGER at this disease...and I'm downright entitled to feel it finally. NO offense to ANYBODY, it's 'just me' right now! ~juli
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julio212 - We don't have to be positive or strong all the time. The anger is just really starting to come out in me - got through the denial now I am down right pissed! Of course, you are entitled to be "just me" we all are.
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JO: Very true that...it took me aLOT longer to get angry, cus I just have no choice. I HAVE to be strong, I am alone. Right now is using up my energy cus I got the various 'after-effects' of cancer/chemo/hormone meds going on (permanent retina damage due to tamoxifen for one). As usually happens, things come all at once. There's MUCH more to me right now than I'm even saying, as one can imagine. Thx all for your support, it's why I come here. ~juli
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juli - I walked around numb for a month before I had my first "meltdown". Then I could not stop at times. Now it is the pissed off stage. I did not have to go through chemo, so I can't even imagine what that is like. I have been unsuccessful with the AI's and have just started Tammy - so far so good.
I work in a job that is totally customer oriented and I have know some of these people for up to 11 years. They all know I have been through BC and when they ask me how I am doing, I don't have to put on the "plastic smile" and say I am fine. I can tell them the truth. I makes me feel better knowing I can do that. I do get tired of all the questions and most days just tell them I am getting better and change the subject. I have gotten so much support from this website - don't know what I would have done without the wonderful ladies here.
Because I can't be there to hug you, I am sending you a big cyber hug - we all need and deserve them.
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juli0212: Permanent retina damage? This is the first I have heard of this side effect. As a person with multiple eye issues, this is alarming. Can you elaborate?
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I think you ladies are ALL right. The gamet of emotions felt in just a single day is something I dont think anyone can understand unless thier going throught this. I have mini melt downs and yes the Tam makes me anxious and very sensitive. Still plugging along as I am not even done with surgery yet have another revision in the spring. Some days I feel great and I am like YES I can do this for 5 years and then some others like today I think oh my goodness how I am ever gonna get through this and want it all to go away.I had many complications with my first surgery ended up being almost 13 hours and seem to relive that all day today, its like some things are just starting to hit me. But tomorrow is a new day and the alternative doesnt seem appealing to me. If it does come back someday then I have done what I needed to do to survive... ok ok getting off my soapbox now
.... see when of those Tammy days ugh! Just had to vent. Hang tough WE can do this a day at a time!
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Tink! You go ahead and vent....You too juli! Man, sometimes we just gotta DO it! That's what we are here for, you know? But tomorrow might be better for you...I hope it is....till then, just write us whenever you feel like it! (((((((hugs)))))) and xoxoxoxoxoxoxox's0
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surfette: Remember this is a *VERY RARE* side effect of tamoxifen, my oncologist has not heard (nor his group which is spread all over) of ANYONE else with the effect. I'd not worry, the tamoxifen did not bother my eyes at all, only on the AI (Aromasin) did my eyes start to get blurry, that's how we found the damage. Just need to protect the eyes with the prescription RayBans/mirror lenses/UV highest protection. I mentioned it only because we sign waivers when we take these strong meds and I'd not change a thing, except maybe take the tamoxifen longer instead of 3 1/2 years before the switch to Aromasin. I was pre-menopausal before chemo, totaly post-menopausal now for a few years, hence the switch, but also problems now with period starting back up after 4 years of no period at all. Again, thanks all, I'm really sorry that I wrote, it just seems to aggravate others more and bring up issues that are not necessary probably. (Tho this IS a BC site, and I'd think anything that goes with BC is mentionable). THX all~~juli
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i want to scream it to the heavens and drop to my knees in gratitude and relief!!!!!!!!!!!!!!!!!!! THAT YOU ALL HAE VOICED WHAT HAVE NOT HAD THE COURAGE ORE REALIZATION TO DO even tho my surgery was in sept, already months ago, the other day, i broke into tears and sobbingly said to a friend that i had breast cancer! the novelty has worn off and the fear have hit! even tho i have had other cancers and surgeris, THIS is the one that freaks me out. every twinge or muscle ache terrifies me. brain cancer did not affect me like this does. i am so thrilled to hear that others say the same thing----now didnt THAT sound perverse
thank you thank you thank you for giving voice to my life 0 -
Okay I am going to ask all of you ladies out there a question, not Tamoxifen related. I had 2 lumpectomies and when all said and done they removed over 18 cm of breast tissue. With that much taken out I am completely lopsided. I went from having a full C-cup to and A-cup. 1st surgery in Jan and 2nd in Feb and finished my radiation end of April which I then immediately started the Tamox. I feel like I have gone through so much emotionally and physically that I just cannot seem to take on another surgery. They cannot do anything but a Dorsi Flap which is very involved and a 6 week recovery. I was hoping for a implant as that would be the fastest surgery and recovery time but unfortunately there is not enough breast tissue to hide the implant. My husband says he is fine with how I look and does not want me to take on anymore than I need to. I thought that I was fine with my decision too until I saw my Radiologist who questioned me and now is making me rethink my decision. I know from reading a lot of your post that a lot of you have undergone many surgeries to correct what this horrible disease has done to your body. Do any of you regret your decision and wish that you just left it alone. I am worried and do not want to go through anymore than I have to and I thought I felt good about my descision, but what happens later on down the road when I am so sick of making sure my fake is in correct? Will I regret my decision later on, that I took the LAZY way out!!!!! How does one really know for sure? June .
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Phew ~ the same sort of thing happened to me, I think maybe it does to everyone. I just seemed to go along pretty well for the diagnosis, 2 surgeries and then the day I went to get set up for radiation and I was lying there on the table and I was left all alone - it got real and hit me like a semi-truck and I was a mess for a couple of weeks. I thought I was going to end up in a mental ward, seriously. I took xanax for a week and that helped me get through the worst of it. I took a stress mgmt class last month and the main thing I took away from it was that bad things happen to people everyday and there's nothing we can do about that, but what we CAN do something about is how we choose to react to them, so I'm trying to go with that. I'm getting better at it, but this may be a life long project. There's a lot of love and support on this site and I hope you take a big scoop of it with you when you sign off each time. That's what we're here for.
June, you got a keeper there. I can't help you with the surgery decision. In spite of the surgery and re-excision, my surgeon did a superb job and I'm thankful for my scar. I have an old friend who had a mastectomy years ago and I think she regrets not having reconstruction now. She was divorced and would like to re-marry and it is a concern with her. My husband is like yours, he would love me with or without my boobs - he's a keeper too.
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Julie, I junderstand the "I have to be strong.. I am alone thing"...but boardslike this also say "You are not alone"...bet there are people just waitingin the wings for you to ask for help so they can lend a hand and let you now be so strong..problem is that it is sooo hard to ask for help when you are used to doing it for yourself....Keep the faith..have a few days when you cry and let it out too...while that is also strength, it lets ome of the pain, anger and frustration at having to be strong out.
Loved the list of how to live 2011 better an dhave made it a worddocument to remind myself of every once and awhile.
I am choosing to think of Tamoxifen as the gift of reassurance I give myself. Yes, I have a dry mouth right now..but that is there to remind me to drink 6-8 glasses of water each day which I have never done in my life...yeah, I am wakng up hot in the middle of the night, but I used to wake up 5x per night with cystitis so once per night is fine...and I am saving on heat this winter because of the flashes...which I choose to think of as power surges on the 'good days' and 'global warming' on the bad ones.
We need to do our best to sing (to relieve stress) and laugh (same reason)...we are not to blame for our breast cancer ladies..my broken heart, your stress levels did not cause this. ...it may have added to the dis-ease that has enwrapped our breasts but....it is no the cause so let's all stop blaming ourselves, hmm? It just makes it worse...the fact is we have all had breast cancer..we are all working towards saving our own lives and trying to be happier, healthier people...that includes letting the anger, sorrow and frustration out....moreroom out than in ( I know that applies to burps but really, I think it applies here too)
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One last comment before I head off to bed...when I was going through rads, I cried every third day..or so it seemed...perhaps because it was a safe place to let it out ...did not have tobe strong at school or take care of anyone else's fears regarding my diagnosis and experience...perhaps it was simply because I was lying down...I have cried since, but only once, and not really cancer related...but my emotions are closer to the surface these days. But..and this is interesting to me at least, it has also made me distance myself a bit from those who drain me which is a rare occurance for me.I work in a school where my tears are not poopooed and where hugs are a common thing but I also run the department so being in charge is also important when I am there...makes the meltdowns difficult (thank god I have an office door I can shut!)...
I had a teacher trainee blow up at me yesterday (first day of the course, likely stressed at the amount of work loaded on and looking for a handy outlet..ie-me) and rather than feeling personally affronted, I apologized for the way he was feeling and moved on...and I was not upset in a 'ow that hurt my feelings' kind of way..I was angry in a 'How dare you take your frustration out on me....this is NOTHING' kind of way...which was revealing because I rarely feel anger. I am always and have always been the one who understands and sees all sides of any and all situations...BC has given me the right to feel angry. Thank you BC!..because seriously...sometimes anger can spur you on to do something phenomenal...
Let it out ...don't let it fester:)
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Chevyboy: Brrrrrrrrrrrrrrrrrrrrr...............when we hit the 30's tomorrow we'll feel like it is a heat wave!
We don't all get SE from Tamox. It doesn't mean it isn't working. When you look at the SE chart of all the hormonal therapies on BCO, this is the best one as far as I'm concerned.
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June - You ask hard questions! I think I'd really consider the surgery even though six weeks is a LONG recovery. I think age plays a big part but that's just my way of looking at it. You'll look fantastic whatever you decide.
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June you have to be at peace with your decision but also do you really have to make the decision now. I would ask the PS but if you wanted to put it off awhile and see how you feel about it they should be able to do the surgery later if you want. I also am lopsided after 2 lumpectomies. I have not seen the PS as of yet but I think they should be able to do an implant for me. I am not finished with rads yet, very soon though and he told me I need to wait 6 months. DH does not understand why I want to fix this he says he loves me the way I am. I too have a keeper.
I am lurking on this thread because I will be starting Tamoxifen in Feb after I finish rads.
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Well the way I see it, it's not really about what your spouse thinks, it's what you think, and how you feel about how you look and feel and whether it's worth it to you.
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Thanks for the hugs Chevyboy I really needed them today
hugs back to you too !!! xoxox:) 0 -
June: I had 2 surgeries as well, ending up in a partial mastectomy which looks really weird. I am FINE with it, though like you, was offered plastic surgery. NO MORE surgeries for me, but that's just me. My BF is the best thing that ever happened to me, but he cannot look at that breast (FYI: his brother died in 2003 of a very rare intestinal cancer--it was brutal), understood and fine by me. I am the one who is FINE with the way I look. Good luck with your decision, ultimately, it's up to YOU. Best to you~~~juli
Chevyboy: Thanks for the hugs, and backatcha!
Phew: Took me damned long enough to get angry! :O (Like you all, was the one who said, yep, I am fine--to my kids/family--they can't get over how ''''''''strong'''''''' I am/was...hey---I HAD NO CHOICE!!! lol...yes, I 'could' have relied on the American Cancer Society to give me rides every day to chemo/day after for hydration-red-white cell boosters/week after for hydration again; next week start over again for 5 months, then daily to radiation--35 days...but I wanted to do it myself, and was damned proud of myself for doing so....BF was also very proud of me--we decided to get dual sport cars to have 'fun' in, only on Sundays--only day I see him longer than 3 hours at nights!) Today is snowing like crazy...and got my gyn. specialist appt. for the period that started after 4 years of chemo-induced menopause...oh well, we ARE in the NorthEast!
Best to everyone, and thank you...I certainly AM allowed to be angry~! ~juli
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Surfette-I agree with you and that is why I am going to meet with the PS and then make up my mind for sure. Even though DH does not understand why I want to do this he is supportive and says in the end it is my body.
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juliO taking yourse to radiation etc resonates with me. for my second brain surgery i had rad for 6 weks every day. it was i mi down a hill to the bus, took two busses (had to swicth from one o to another) and then in reverse to go home (up the hill) this sint to brag. its to agree with you that i was proactive in myrecovery it was either strength or complete denial, but it worked to the better for sure. no valor, just necessity. and then there is now.....oh! light bulb over head
(just in case its too bright?) i'm thinkg that beside the fatigeue etc from the tamox they are thing that nobody else in my life get....oh, thats ok, it'll pass it's ok you'll get over it all you have to do is just start doing something DO THIS !!!!!! is what i say. i have a job, i walk my dog (when its not snowing or 0º) yeah! get back to me when you do this and ill remind you how totake care of yourself. Anger much ARGHHHHHnancy-carol
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Nancy-Carol: MUCH-O power to you girl!!! And, as they say to me "YOU are an inspiration"! (I know, I know...we don't wanna hear it anymore though!) I DO hear ya, and I feel the same way. If we could only SAY what we were thinking...there was a thread on here that this really cool gal started "Yes, I Am Breast Cancer Girl", and it was all about getting MAD as hell at the disease, and the people who always say those things that of course, they don't know any better...but it sure gets to us sometimes! Good for you on all that you doing...and we just do the best we can, right? Try to get thru each and every day. THANK YOU for understanding!!!!! I LOVE IT! Yep, anger-much right now (but bout damned time, been since dx 5/2006 of just going thru the motions for everyone and myself really). Wish me luck at gyn specialist later, I'm sure she'll have NO CLUE what's up...and defer to my oncologist who I see next week. I DO NEED to be put BACK on some sort of anti-hormonal (be it tamoxifen again or an AI, it ain't been 4 years yet, and onto wanted me on some sort for 10 years ++++ possibly). You rock girl...I see your pic, you are a cutie-pie too and so is your pup. We have a pomeranian...who needs a maze in the backyard right now thru the snow! :O My motto: Enjoy where you can...in summer, that'd be our sports cars/bikes...in winter...ugh...not much, I can't be active, other than walking. Just call me Juli! ~juli
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So, I've been on Tammy for 3 months. I go to the gym every day or every other day and each time I step on the scale I gain 1 lb. WTF?
Wondering if the weight is from the tissue expander fills (saline)? Water weight? LOL, LOL
Any suggestions on how to lose it besides stop eating??
Thanks
Jan
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Jan....quit going to the gym..
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