Bonfire of the Goddesses
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Piper.......remember it well.......so funny.........only 347 miles from Philly, and they talked so different.......but then they thought we talked funny...........LOL.
When I worked for GSK Pharma and would make a phone call from Philly to a Dr. in another state, but not let them know what Pharma we were calling from........they would say "Your from GSK right:......I would say "well we don't reveal where we are calling form he would say "you don't have to, that Philly accent will give you away every time"............LOL
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Good Morning Goddesses,
Funny video Piper!
Sorry you're not sleeping Ducky. I take two Benedryl every night since doing rads. It makes me stay asleep all night, plus I haven't had any itching during treatment.
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Ducky, can you try a different AI? Or even tamoxifen? Some women have fewer SEs with different meds - just a thought. I was very afraid of the letrozole when I first started taking it, but I was told to EXERCISE religiously, and I really had no problems with it until I got really sick and couldn't exercise, then the pain started and never let up. But then it quit working for me, so that settled whether I would be taking it, but still, it would be worth asking about changing to a different medication that might give you better quality of life.
4Sew, OMG!!!! I thought I missed the transporter - thought the trip was delayed - read your post from yesterday - got panicky - then finally saw where we have had a 3-week delay! Whew!!! What a panic I was in!!! So now my blood pressure is back to normal, I can start thinking about packing and tour guiding again! And I LOVE the idea of a t-shirt, but I like the unisex neck & sleeves. We have to be careful about colors .... should we have a variety of colors available with one design (like black lettering & design) or light neutral color with lots of colors in the design?
FK, glad you are reading. Just stop by every day to see how much you are loved and missed here! It's OK if you don't feel like posting, but you can't stop us from reaching out with our long virtual arms to hold you in warm loving embrace.
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Linda....I can't take Tamox because I have gotten deep vein thrombosis in my legs even though it was long ago after each baby.......they won't chance it...........however.................you exercising right after starting it blew my mind.......do you think it was that......if it was then that is another time I screwed up.....waited till I got the aches and pains, and then could not exercise.......always a day late and a dollar short........story of my life..........I am going to ask the MO when I go back in May if a vacation and a new drug might help..............or not...............but will ask......last time I was there I told her I was going to quit........she got angry, said "well when you do make sure you let me know", and walked out of the room............I was having a bad day, and obviously she was too, because she is so sweet,and we get along like Mother and daughter........guess she saw it as giving up..............will suggest changing........again........after just getting a 90 day supply.........LOL see what I mean about screwing up...........
Don't panic.........we just have a delay in the trip.....will keep all the passengers informed when it will be time to pull out.......................one opted out, can't remember now who it was.......but if they do and change their mind let us know........
hugs........
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Ducky
IMHO, quality of life is huge. I had one MO that was sweet as pie and was concerned about my future (especially since I was considered "young" at time of DX and had such extensive DCIS with comedonecrosis)
Anyhow, I had a second opinion due to the fact I had so many adverse SEs I wanted to literally DIE. (NO JOKE). I was near suicidal on Tami The 2nd MO substantiated that my stats were reasonably low enough and took me off Tamoxifen.
Each case is individual, but in my case, the severity of SEs I was experiencing and the overall stats with and without TX warranted discontinuing Tami. She even mentioned that in the US we do tend to over treat. However, I do realize, I remained Stage 0.
My mother is 78yo. She had a terrible time with some routine testing last year and is about 16years out from her BC DX. We are entering a time where she and my sissy and I , question what tests are needed or shall I say what tests should my mother have at this time in her life. Mainly because if she would not seek treatment for a newly diagnosed problem why have the Mammogram, colonoscopy....etc etc.
My mother broke her arm...my very first night home from the hospital in 2012.
The Ortho guy suggested a wait and see approach since my mother was and is considered a high surgical risk due to other medical conditions. She also has Osteoporosis. The fracture was in the upper arm on an arm she had broken years ago. It was considered a spiral Fx. Amazingly they splinted it, did PT and she is back to driving around her little area and doing many of the things she has done. She does have limited strength and mobility to some small degrees, but what an impressive recovery. She amazes me so often although I am mad at her for letting her diabetes slide a bit more out of control. And I felt as though my sissy (even if she mean well) kind of made the threat of "If mom doesn't take better care of herself we are going to be left taking care of her and piecing everything together."
Anyhow, I believe in numbers and when you look at them......and can live with them....you need to consider what is right for you
xoxoxoxoxoxo
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Piper you are right........I had an ocotype score of 8, that is considered low......I have to have a serious talk with her next visit..I have osteo, broken vertebrae, bad knees, so some of this existed before Letrozole, but that just put the icing on the cake.............I am going to be 79........why not have a few more good years, then 10 more feeling like shit.
FK went off her meds and so far is doing terrific........we both have LE, but I can deal with that......no hot flashes........but the joint pain and aches cripples you.
I need to have a serious talk with my MO.........although in the end, it is all up to me which is what they usually tell you.
Your Mom sounds like a lady after my own heart, God Bless her.........hug her for me............
Not happy with what Sissy said.........hmmmm how many did your Mom take care of all her life........??
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super busy day here, but wanted to check in and say hello!!
Hello!!
Be back tonight!
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checking in
Babysitting
HOW MANY TIMES HAVE I TO
D YOU DUCKY TO GET OF THOSE MEDS?
QOL is very important to me
Hmmmmmm
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Piper and Ducky, there is a book "Overdiagnosed: Making People Sick in the Pursuit of Health" by Welch, et al. that provides some very interesting insights into the testing that we do and what we do with it. Another is "How We Do Harm: ..." by Otis Webb Brawley, a very well-known physician with the American Cancer Society, amongst other prestigious organizations. Both are well written, very articulate, and very eye-opening. And not too difficult to read, especially if you are able to follow even a quarter of what Sassy usually posts! But not as much fun as a Maeve Binchy novel.
Tamoxifen made me not only suicidal, but also nearly homicidal. I had very dark thoughts directed at one specific person, which is really really hard to admit to someone in the very short follow up visits you have with the MO. I am the kind of person who responds "Just fine, no major problems" when asked how I am doing. I lie. I deny. I always look good (people always comment "You're looking great!" because I never go out anywhere when I look sick - then I hide). And Ducky, I really get it about having even a few MONTHS to feel good compared to several YEARS to feel bad - that was what tipped the scales for me when I really thought about it, and this has been my guiding principle ever since then. I will not trade length of time for quality of time with my family. If I am in pain, unable to participate, am depressed and horrible to live with, then I would rather not take the meds. But if the meds can give me a little more time and I can be RELATIVELY comfortable (I am not asking for feeling like I did before BC), and I am able to be pleasant and loving, then it is worth a try.
Piper, you and I have similar mother/daughter issues! My mother is 19 years out from BC diagnosis, no recurrence, no LE, just did what she was told from the beginning and has had a wonderful quality of life. She is also diabetic, worries about her numbers but just doesn't want to give up going out with her friends for breakfast or lunch or dinner on the spur of the moment (which is at least once a day!!), she doesn't exercise like she should because she enjoys spending her time playing music with several groups and she doesn't have a walking buddy so the motivation is low. She is 80 this year, and I am just happy she enjoys her life to its fullest, regardless of health stuff. She wondered if she really needed to do that colonoscopy this year .... my response is "it's up to you" but I really want to say "why bother?????".
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gee I hope Ducky is reading this
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I'm reading Sweetie...........just sent Linda a PM.........will get the books from the library.........thanked her and Piper for their good advice.......
I know, I know, you have been telling me this for a couple years............your my special friend too..........love you dear heart................xxxxxxxxxxoooooooooooLOL
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Morning all
Just ask most docs here and they agree that folks in the US are over diagnosed and over treated. We get great treatment when it is required but only have scans etc when needed not routinely . We don't get neulasta (sp) unless needed, the opinion here it is much better to let the body recover by itself. We usually have 25 rads here but exactly the same amount of radiation. Hospitals in the US get a grant of so much for each rad treatment given so you lot usually have 33. My onc said all the scans show up 'problems' that need to be investigated and that is far worse than waiting until real symptoms appear. I am not saying things are better here just a lot more relaxed because it is mostly a state system - yes we have socialised medicine. Yes we personally have insurance but that is for elective things which are on waiting lists here - things like knees and hips etc.
It is just very interesting listening to everything you lot have done. Pet scans are rare as there are only two or three machines in the country - there are 4.5million people in NZ. One of yor problems is that doctors throw everything the have at you because they are scared of being sued.
Ducky, there are lots of theories about length of time you need to take an AI. The doctors here are saying five years max but after 3 years you probably have enough in your system. Found this http://www.asco.org/sites/www.asco.org/files/adj_...
Ok enough of this seriousness. I need coffee
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Linda....my library has both books......put them on reserve......will go tomorrow and pick them up........thanks again..................
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For Ducky
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Countdown for Jo
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Beppy you are such a sweet person.....always thinking about others......hugs
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Alyson,,hello there
U r right,,,in the good old USA we r over treated,over medicated and the drs do get a kickback when the write a script
THAT SAID IM MOVIN TO NZ.
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Fire.......your full of crap.........no way you could every leave Greyson.........LMAO
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No she won't move too far from her kids. Just wish mine were closer.
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ya no I was bored when I lived in NJ
Now I don't have a minute for myself
Which is betta?
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That is the best way.................never alone or lonely............
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Slow - Love the sign. Two days and counting!!!!! So very awesome!!!!
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hey JOJO
Been thinkin about u
I no ur busy,crazy excited and all the good things so I havnt even sent u a pm
But
I'm crazy excited for u as well
I cannot even put it into words
Just no ur in my thoughts day and nite
And smiling too
A big congrats to u my dear sista
I'll talk to u soon
Love ya
FireKracker,
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Whew! Crazy Day.
Fire, I also remember telling Ducky to really think twice and consider ditching those meds!!! I agree busy is better than lonely, but a little down time is nice too!
Aly, my onc also didn't do Neulasta unless you needed it and is very conservative in his approach to those things. No benedryl with chemo unless you had a reaction that kind of thing. Probably because he grew up and went to med school in Athens before he came here!!! My RO is pretty conservative too. But 22 nodes buys you a lot of rads!! I had 27 and then 6 boosts to the tumor bed. Hope the asthma is settling down and you are feeling better.
Linda, Sorry you got scared you missed the transporter! I also so get what you are saying. When I was making my chemo decision and the told me even with ACT I still had a 40-50% chance of recurrence and then you add in the risk of heart problems, luekemia, etc..... I didn't want to be hot mess for my kids to deal with, I would just rather they mourn and move on, not be burdened with taking care of me. Plus they couldn't prove to me that the ACT was any better for lobular than CT. In fact some studies showed the opposite given my stats. Everyone freaked out at 22 nodes positive though.
BTW I told them they could kind of shove their 40-50% and I was only doing this once. I used to be like you and say yes, everything is fine, etc.... but after I got screwed with the whole that golf ball in your boob is just dense tissue, come back in a year, well, now I am kind of a nightmare patient. But, that being said, I have had doctors compliment me on how I have handled things and managed things and stayed on top of things. Some have actually said I told them something they didn't know! not bragging, but I am operating on the Fool me once shame on you, Fool me twice, shame on me theory!!
T-shirts will be whatever style and color you want. We should be able to look online at say Gildan's website and everyone can pick a color. We will figure it out!
OK, I know I am missing peeps. Sorry, My brain is mush. Went to surgeon for a consult and am getting my gallbladder out on 4/25. Not bad considering they told me 13 years ago I should get it done!! Then I went and had my drain pulled. HOORAY!! It's been almost 3 weeks. My PS said as soon as he gets back from Africa he will see me and we will schedule to start rebuilding Nemo's fin!! Please say a prayer for my PS. He and his wife go to Africa at least once a year to do what ever is needed. This time he is going to work on burn victims. He showed me a picture of a young pregnant lady. She has seizures and very few meds are available to control them. She had a seizure and fell into the cooking fire. Her whole left leg is white and pink. She is very dark skinned. You could see the pain in her face. One of the things he is going to do is try to repair her leg. He does things like this here too. He is a wonderful man.
Slow, I hope the hands and RA are getting better. When are the rads done?
Think I am calling it a night ladies! Took all the kids on errands and for hair cuts today. I am going tomorrow when it is quiet and I am alone!!
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Oops! Sorry JO! I need my ipad so I can scroll on one and type on the other!! Can't wait for the partay fireside Friday Night!!! I bet you retire and then get even busier than you are now!!!
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2 MORE DAYS!!!! YEAH!
TY 4 for the story of what your PS and his wife do in Africa. Amazing to not only be so talented but to break barriers and borders to make his talent available to others in need.
G'Night ladies
C'ya fireside Friday night.
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well I hope ducky hears all of us with those meds...thanks for the backup
JOJO my broom is ready to go to ur party at the bonefire
I'm gonna pack it tomorrow and head down to Texas so we can go together to PARTY
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Hey FK are we all invited to the retirement party........you know we know how to part[y................
Kudos to the PS.....what a stand up guy...........
You ladies are the best.........damn I wish we lived closer so we could meet at least once a month.......your all so terrific........this thread has nothing but loving, caring, ladies who truly have each other's back.........it gives me such joy when I read what you all say............
Now you Jo.......you did your time girlfriend........now sit back and enjoy the fruits of your labor.......stay up late, sleep as long as you want, take long walks and enjoy life like you have never before.....but above all...........know you gave life your all when you had to.......now it is your turn to get something back...........love you girlfriend...
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sure everyone is invited to JOJOs retirement party
Just bring ur appetite,everything will be catered
All u gotta do is show up
If yr on this thread ur invited
If JOJO wants to invite anyone that's her choice after all it's her party
Anyone have any questions speak up now,,,
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Of course everyonr is invited to the party. More the merrier I say.
I'm not too busy yet FK. Still on my daily work routine. Tomorrow is my last day - yea!!!!!!
FK - you are in charge of putting this party together. I'll look for your broom in the Texas sunset. Love ya sista.
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