INSOMNIACS place to talk in the wee hours
Comments
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Chevy, sadly I might need an intervention, ask my DH, he might agree! Sas said, did we have a book, that taught someone to have fun? I went back and read it again. I thought she said, she actually bought a book to teach her to have fun..
Grumpy days, ah sorry....It happens...
Oregon Coast, which is cold compared to S. CA, allows fires...wonderful to build a fire, watch the sunset, listen to the surf, be at peace with the world...
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Cami Oh i mean cuz Sass was saying she needs to retired lol I could not go on without all the information you guys provide here .
i just love it.
2nd time here is another pic i like.
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Enerva, I love the owl with the upside down head. Makes me want to investigate owl anatomy. Must have some swivel thing in their necks. Fingers crossed for your sister.
Holeinone, I've been on Arimidex for almost 2 years with few SE's. I have some hot and cold flashes but not major. I have a DEXA this afternoon, so we'll see what it's doing to my bones.
Stellina, You might give tami a try and see how it goes. Or ask for a second opinion. A lot of hospitals have meetings where all the oncs get together to discuss cases. Maybe you could get a lot of opinions that way.
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Thanks for the replies !
@ Holinone: for the moment I still haven't "digested" the fact. After all, it was my onc who said that hormone therapy was not for me. And now the change and I'm expected to agree quickly! I can't handle it that fast, especially since I worry that menopause will strike in along with tamoxifen intake!
Besides, another aspect that worries me is the effect on the eyes, since my father lost sight on one eye due to glaucoma and has the other eye with very weak sight!
@ Chevy: ah, my onc seems so adamant now about me doing the hormone therapy! With the low responsiveness to HR, I just don't feel very enthusiastic about piling other SE - and I'm thinking of the long term ones - to the threat of heart issues, blood issues and so on... And my onc is not a very treatable person.
I will have tumor samples retested.
@ Wren: if the retest results give a higher percent of HR responsiveness, I think I'll be less reluctant to try... If the oncs all get their protocols from an established organization, wouldn't a second opinion amount to the same result? That's keeping me worried...
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here is another one
i wish i could see it in person. I never saw an owl out in the forest.
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Hola!Working today, so grateful that I work from home on days like today. Well, ever since10/24 when I was dx'd I've been soooo grateful! I'm tired today though, I think I'm hitting a wall of tiredness from not getting enough sleep.
I have a 4 yr old and a 21 year old....yeah, yeah...I started waaaaay over.
What's everyone got going for the weekend? We've got some company coming over...some old friends that we haven't seen in awhile. She is in disbelief over my cancer, I love her, but I hope I'm not trying to make her feel okay the whole time. Of course the game Sunday. thinking about making potato soup
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Stellina.... You are stage 1.... grade 3..... You also had chemo... And a mastectomy.... how old are you? Ask that dink of an oncologist for another test.... Ask about a test to test your gene's.... for anything that MIGHT conflict with the effects of the chemo drug Tamoxifen. I just hate when we can't talk to them! Can you get another opinion, and telll THEM your worries?
I metabolized the Tamoxifen well, they said, and had just the usual side-effects.... Except I lost my hearing..... BUT, the SE's that are on the labels CAN happen, I mean like stroke, cataracts, and that's why I say, a test will sometimes show what your response might be to it. I don't really talk about what happened to me, because it is rare, but things do happen. "Certain women with a certain gene, will react differently to the Tamoxifen."
I mean like Jackie, (Lilli).... she takes Arimidex, and is doing fine with it! A LOT of women can take the SE's. Some can't. So you aren't alone in being worried about starting something new. I wouldn't want to advise you... one way or another. But just remember, you can TRY it, and see what happens....
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T&C, I have a 20 yo and 32 yo (stepson), I always get the look when people figure the age difference. Not their concern
Tomorrow, have special BC survivor event at a local amusement (not Disneyland, unfortunately). Only 50 picked, was on wait list till notified Wednesday I'm included. Free admission and parking, special breakfast, photo opp, hey, why not? Somebody has to do it. For fun and for free.
Enerva, thanks so much for the photos, in case I forget to mention it. You find beautiful pix, love the one with the owl having his/her head almost turned upside down. Crazy.
Sassy, how are you holding up?
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Stellina, It's not a standard organization giving out rules. It's more like a case presentation where everyone can ask questions and give ideas. I can see your point about not having a very high ER+. I don't even know what mine was.
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hi ladies. Well, we are back home now. It was RAINING and 45 when we got home. After seeing how dry it was in California, I wished I could send some of it there. Hope they get some wet stuff soon!!
We're at the boat show now, and I'm planning to attend a day of the sewing expo next month. The place I retired from just called and asked me to return for a week so that my former co-worker can take a vacation. Another company has asked me to do some contract work as well, but I don't know the particulars yet... so don't yet know if I'm interested. I agreed to the week at my old place. A little extra money will come in handy.
On the home front we are getting ready to watch the Superbowl Sunday and cheer on the Seattle Seahawks. I want to complete the final settling into our house and break out my sewing machine. I miss making stuff.
My GERD/hiatal hernia has been causing me grief at night. I think I'm going to buy a 2nd pillow to keep my head/shoulders a little higher and see if that helps.
Nice to "see" you all.
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Chevy, I'm 37. Well, I was told that oncs bend themselves backwards to ensure that the patient gets all possible treatment so they can't be blamed to have omitted anything.
I just wonder how much I still have to do, it seems to have no end. I'll have some tumor samples retested.
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Yes, I know Stellina.... they do what they think is best.... I was offered Femara, when I refused to take Tamoxifen anymore.... But they just wanted to help all of us, I know. But she was only doing what was expected of her.... and going with the knowledge, that those drugs will keep us from getting cancer again.... that's why you go back every 3 months, for more blood-work, to check the "markers.".......
So far, I am doing good! Been over 4 years....NED.... That means a lot. I only go once a year for a diagnostic Mammogram, and blood tests for my annual physical.
You are very young! Man, I wish I were that age again! Ha! My Daughter's are much older than you! I mean my Grandsons are only 10 years younger than you are! You are just a puppy! Ha, ha! We will all take care of you.... We should know SOMEthing at this age!
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Oh Wow!
Teka.... sorry, we posted at the same time! I don't even know what that is..... I'll look it up.... sorry about that! What can they do?
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http://www.webmd.com/digestive-disorders/tc/divert...
Okay Teka.... see if this helps.... Have you already been diagnosed with this?
Where is Sass? I think we need to call in the big guns for THIS one!
I came back to edit this.... When I had a bleeding ulcer, one of the gals I worked with told me "Oh, just go get a gallon of Aloe Vera juice, and drink it with everything." I didn't believe her.... BUT on my way to work the next day, I stopped and bought some, and drank it...about 1/4 C mixed with juice... And that pain did not COME! I drank more at night, with hot tea.... So for about a month, I drank Aloe Vera 3 times a day. I have it on hand, but really don't need it anymore.... Honest, it works!
You can buy it at Walmart for under $8 a gallon. Mix it with anykind of juice, 3-4 times a day or even Tea! DH sometimes drinks it straight. Brotherinlaw drinks it whenever he has digestive problems.
It is worth a try, and doesn't cost much.... It is a natural cure.... and it won't hurt you!
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Hi everyone--been a little busy, everyone wants back up generators, cua of this stupid weather and CA I wish u would get some rain u guys really need it---And I have a lot to catch up on ut I don't remember who said what Damn--I can't write it down anymore cuz I can't read my own handwriting it's so bad and I used to have such pretty handwriting--OH well that's neither here nor there--I love that saying.
Stellina I don't think any Dr. cn make u takes meds, it's u'r decision, I'm not advising u not to take them I'm just saying that is u'r choice/
OK now someones' sister might have cncer ONG I hate to hear that. I certainly hope that the test results are good, but I do know how it is, a couple of months after I got it my sister called and said I have breast cancer, my reaction u bitch now who's going to make my favorite foods. Plus she just wanted more attention. We have a whole different out look, then she accused me of giving it to her, cuz she was with me so much--bitch. It's really tough and we both said now we were glad our parents passed away, cuz they would go crazy for sure. So we were kind of on our own and I really missed our parents, my dad died just the year before.
And so many are sad, it's OK to be sad or grumpy, or even sleepy or bashful it's what happens, no one can always be happy and everyone has every right to have sad times--this is no walk in the park, unless u'r walking and a mugger with a knife is following u and their are holes in the pathway and no lights and no one can hear u. Then u can think of ot as a walk in the park. continued
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MADDY YAY---I thought it was thursday, So, nice, it's friday.
So tired DBF keeps waking me up at 5am. SEX Morning sex. Never knew it existed. It is so much fun.Your not tired, It's warm and toasty. But then he went off to work. Staying up all day is no longer in the menu.
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Please, Chevy, don't beat your self up. Thy Birds wrote a a song "Turn Turn" and it's good, but let me try.
Lacee, my beautiful Lacee.
The turn of your head
with a smile, and snowflakes
on your nose..
You will be in my heart and
with me always.
Your time was now.
My time will come.
We will meet again
my sweet Lacee.
My beautiful Lacee
with snowflakes on your nose.
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Yes! Lacee with snow on her nose! Thank you Sassy..... I'll print off your note, and put it in her scrap-book! xoxoxo
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Chevy OH Chevy My Chevy I'm tearing up. Gosh.
Chevy you didn't print it till I got the last line in did you?
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OK Page 2--my computer jumps.
Chevy u'r still feeling miserable and who can blame u it's still to soon for u. Just be whatever u feel like Oh and by the way if I looked like that girl u posted I wouldn't care what anyone called me--no one.
Sas a book about relaxing I told u that's what I know about, and I do it so well.
2nd I remember u saying about the owl with the head upside down, OMG that's really upsetting to me--I know u all find beauty in the owl, buuut anything with wings I'm not thrilled about, including airplanes.
Geeze I'm sorry I'm not addressing everyone personal, but I have to reread again in order to--u guys have been busy today, And I have to relax between calls--so I clean out my webs in my head. Like my old oven I used to dust it to clean it-I never used it. I'm not proud of it, just truthful.
Geeze again I hope this wek-end is better for all of u------TEKA what u have is painful--OMG everyone is hurting---BTW I'm not 5'1" and small --when I started this I was 5-7 and big now I shrunk and lost some weight but I ain't little-I have a nice belly too thanks to 3 hernias--that's what I blame it on LOL Oh I just want everyone to feel better. Really.<3
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Teka,
Have you had it before? Are you on anti-bio tics? Both Sas & I have had colon resection. You DO not want to go there. I spent about 4 months in 2011 bedridden from diverticulitis....that was my wake up call to eat better, take care of myself, 2 years later...the bc dx....damn, life throws us some punches..
Blessings, thinking of you & your family.....
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Did someone say something about sex??What is sex, I used to have it, used to enjoy it...but now, oh I just don't even know. Poor dh, but I don't even know how he could be attracted to me. Does this part get easier? lol
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Cami You can so appreciate this---I spent 4 hours on the phone with several govenment agencies. Then took DBF for an eye glass tes,t we went early for paperwork and picking out glasses.. I went next door for FOOD-----said WTF a nice glass of wine would be nice--had three.
DBF now has a temporary license. Lost it b/c of child services. Some 7-8 years no license. Then it compounded with tickets for no license. He is clueless about lawyers, law, rights, wife committing fraud, CSE not doing their job on and on.
You know the unemployment thing where you have to fill in 5 employers-----I made him make the calls. DUH he has some great leads, but a drivers license is required,
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TEKKKKKKKKKA, Did you not read my stuff on the constipation thread. POOPER literally. I have a whole section on diverticulosis/itsis..........CHIT girl. Nothing to mess with. Read all 11 pages. There is a routine in there someplace that will work for you. PROTECT THE COLON AT ALL COST. It can be done. Read the whole thing then we will have a firside chat on the constipation thread deal?http://community.breastcancer.org/topic_post?forum...
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Stelinna-soooo glad to see you, We love our International Savoire Fair here(did I say that right?).
Get a third opinion? Just don't know--clueless. It would seem no. But I saw my printed range in color. Then I just did what they told me. Failed so to speak---All AI's Arimidex, Femara, and Aromasinj. Each had side effects. I reached a day with each that I just said "Fuck it, their done , no more"> BUT I did take them for awhile . total time---perhaps 2 1/2 years. Don't have a clue until it's over, what it means.? They are poisons. They interact with drugs, They can make pre-existing conditions worse.
Try looking at the drug on "dailymed.org.nih.gov" the first drug listed is the original either drug producer or the first one to bring it in to this country. They have to have all the clinical studies pre approval and post marketing, through the FDA. What's nice about that is it's in one place.
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Stellina- saw your post about hormone treatment. It looks like you are 37, so they usually recommend tamoxifen if you are pre-menopausal and an aromatase inhibitor if you are in menopause.
What you need is information to make an informed decision about what the benefit is to you for taking the meds? Did your MO give you any % of risk reduction with taking the meds and without taking them? Did you have an Oncotype test on the tumor too?
I will tell you the information I had that helped me to make a decision to at least try it. I saw two different MOs during the course of my initial treatment, and based on my pathology and Oncotype score, it was determined I have a 15% chance of reoccurrence. Both MOs I talked to (including the one I am seeing for the longer term) said taking an aromotase inhibitor would cut my risk down to 7-10%.
There are risks with any of these meds, and the one I worry about the most is the risk to my bones (slightly osteopenic to start). So I am ensuring I do bone strengthening exercises and take CA and Vit D to keep things good on the bone front. And I told my eye doctor so he can keep an eye on my eye health for any concerns there. My doctors all watch me very closely these days.
The other thing to remember is that these drugs are usually recommended for a long period as they are cumulative. Currently it is a five year protocol, and my MO says there is evidence women do even better if they stay on it longer. I think there are much better statistics around tamoxifen than there are around AIs. As several have said here, look on line for data and also consider a second opinion.
I decided I would give my recommendation to do an AI a try. My MO said they have to balance the risk vs. benefit with these meds. For some women, like myself, I have a lower risk of reoccurrence and we have to balance that against putting me into osteoporosis at a young age. You may have a higher risk based on your pathology, and it may be why they are wanting you to take the meds. The information will help you to know better what risks you are living with either way.
Continue to the conversation with your MO, while you complete your herceptin treatments and consider a second opinion with another MO to get his or her opinion on the tamoxifen. I had two opinions with ROs around my radiation treatment and with MOs the antihormone meds, and it really helped me to make the decisions that were right for me. It is good your MO may be collaborating with other doctors, but think talking to a second MO might help to give you a bit more info for the decision you are struggling with.
There are women here who opted out, those who have started them and then did not finish, those who are still on them and not sure if they will get through the five years (like me). No one can live our lives or live in our bodies. Keeping asking questions until you know.
Good luck and wishing you the best!
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Wren HAPPY ANNIVERSARY, WHAT A NICE MEMORY-----AND WARM
Golfgirl---yes , it was supposed to be a mind teaser." I'm tired of learning, do you have a book on how to play?"Which meant I would be learning. Your okay, maybe your golf game is quicker LOL . Take more drugs, then you won't care.......I'll have some wine with you
OH Enerva--feel for you my twin and multiple others in the family have had BC it doesn't get easier. Your owl is regal HRMPHH your Highness!
Stellina, my post went to the computer netherworld-------------get a third opinion, -------look at dailymed.org.nih. Look at first listing. They are ususually the first producer. Way short from last response , but now getting way tired.------glad you are back sweetie.
Lost my motor L&H&P's sassy
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DUH, I was trying to catch up on posts from 266----which post to the end, DUH -----STELLINA my post is up there
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all is quiet...hmm...
Nicky we miss you.
Tang, I hope your weekend is good, hard to have company when your dealing with this shit, I have a very good friend, that still, after 6 months, sobs when she is around me...I have to tell her to get her act together.. It's ridiculous to have to cheer her up, especially when I was sick with chemo...
Last day of January...:-) my SIL turned 59 today, I will in 4 months...
Hugs & appreciation to you all...
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Tang - I was wondering about that sex thing too... Since my mx in dec. it's been non existent. Now granted I had another operation last week, so I have not healed completely, I have not had any te fills, I still have a drain and going for a port and starting chemo next week. So where do I fit DH in (no pun intended). He has been so good to me, and I do miss our closeness, I am Only 47 certainly not ready to close that chapter of my life, I hinted the other day about giving it a try, and he said he is afraid of hurting me. It's killing me to feel like I am neglecting him, even though he would never complain, but I also wonder if physically I am repulsive. In my mind this is the issue, but I'm sure to him it's not... The mind is my worse enemy! Anyone know if it's ok to be intimate while on chemo? Everything else changes so why not this?
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