TRIPLE POSITIVE GROUP
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Omy stars getting caught up is a brutal task here---
Roz I'm glad it's a little better.And congrats on finishing Chemo Someone-I think it sol???
I'm sorry I'm lost but I mean well. Wirh everyone I read I could feel what u are going thru and I never wanted anyone to go with me it's just to boring for them and all of the patients talked and laughed so much with each other no one would get it.
OK I'm sorry I' so tired I was in the ER late yesterday for some tests (My Dr. wanted me to go) They just found a small infection which acted oddly with me and of course my D--so I'm on more meds and just knocked out but I'm fine.
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Bren58...
So true. Be ing 12 years NED.
My infusion nurse had recently recurred as well after 20 years! Her chest wall but she said it wasn't active..her words. She was very optimistic about her prognosis.
So much has changed in the treatments. As you well know there are layers of treatments now. You received only one of the layers ...the bmx. Now you'll get the super duper deluxe version. At least some more surgery. Chemo. Herceptin. Rads. And then as Lago calls them estrogen sucking drugs. You may even get some of the trial meds out there.
I think of cancer as a bandit with both barrels aimed at us. So you want to survive? Give me ...........0 -
Aww Camille.....feel better......
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I like to think of cancer as a bad guy pointing a gun at me. My answer? Go ahead, make my day ... LOL! Had my chemo today, only 9 more to go!!! I'm kicking it to the curb!!
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I don't want an apology, never did. Thing is my sister basically abused me (granted verbally) one time I needed her… now over 2 years have passed. What if I didn't maintained NED these past high risk 2 years. She just wasted all that time. I'm done with her. When I found out my DH called her several times (once just last month) and she still didn't call me… even after she promised him.
When I was done with chemo she did send me a gift (store gift card) for my 50th birthday. I was ready to send it back but my DH said she was reaching out. I called for a month and no one would pick up the phone. I finally emailed her saying I didn't want to thank her in an email, when would be a good time to call since I had been trying for weeks. She said she'd call that weekend… never called.
I'm done with her. Our relationship can't be repaired. It's been too long and I quite frankly her silence speaks volumes about who she thinks is important in her life and who isn't. Did I mention one of her areas of specialties is "family".
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Lago, your story does break my heart, but at the same time, I have a very close friend who is from a giant Italian family. Her Mom died ~2 years ago from a stroke. After that all of the siblings started fighting and it is mean, heartless, judgemental, down and dirty crap. A lot of the kids are in their home town around Harrisburg, but my friend is in Philly and her therapist told her to do exactly what you have done--put them behind you, stay away, stay close to the ones that care and aren't acting like idiots and go see your father. But don't stay, don't engage, just visit and love your dad and leave. It breaks my heart. She was with me during the surgery and we talked for a long time over the week she was here. I think she is doing the healthiest thing she can. But she too is done.
Solt, I really struggle with not telling people. My job now that I've left the hospital setting, is to submit our products to the FDA and get them cleared and sold in the US. My projects can easily take 1-2 years because I am the lucky soul that gets to submit the complicated blood tests that might go with a drug, or might have 5 things that we measure to predict risk of colorectal cancer and (YAY!) someday screen for who needs to go for colonoscopy. So my "project teams" can be huge with R&D people, reimbursement, medical affairs, statisticians, clinical trials people. Everything gets vetted through me as "will the FDA accept this?" So if I drop off the face of the Earth, they are going to all think I'm a slacker. So I've been pretty much telling everybody because I kind of have to. I'm an active person in my work place that can't just go wandering off. Har! Makes me feel like a cat herder, but hey, all is good.
http://www.youtube.com/watch?v=Pk7yqlTMvp8One of the things I've found that is so true is how very caring my male coworkers are. They are so sweet. And my German and Swiss coworkers are very gracious even though some of them are under pressure to get us through the FDA. They warm my heart with their sweetness.
But women are funny. Survivors are the best to tell. They will embrace you in every way. The rest of them, it has really been a toss up. I wish I knew who not to tell before, but my boss is so chatty, it wouldn't have mattered. She was there when I heard my diagnosis on the phone, so I knew it was no use trying to bury it a bit.
Cami, I'm thinking of you. Just a little bump in the road. And I wish your cat picture would have had an all white cat in it, because you would have captured the true essence of my little white udder buddy Smudge. He is the most hysterical cat I've ever met.
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pbrain it must be something in the water in Philly. Sister lives just west of there.
BTW I've seen that video before but in your context is cracked me up because I wasn't expecting it. Thanks I needed a laugh today. Still very down about Aetna although I don't know yet if I will have another option. Fingers still crossed. I really do like/trust my current doctors and typically I don't.
Cami hang in there.
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Lago, I've sent that video to so many of my German and Swiss regulatory colleagues and they don't even laugh. How can you not find it funny? They come back with "Jane, ich can es nicht versteh." I'm always saying "it doesn't look like us on a project team? Dragging 100 R&D folks across a cold fjord?"
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Bren,
That's great news about the PET! Sounds like once this axilla issue is knocked out, you'll be rockin! I love that you see a nutritionist. Never occured to me to see one until after first tx when I was in the hospital. The nurses sent one to me because I was counting calories and wouldn't eat half the stuff they brought me! lol
Nutritionists was wonderful. And since then I've consulted with a couple different ones, including one that specializes in Oncology nutrition.
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Here's a mantra that I try and live by ... Go where you are celebrated and avoid going where you are just tolerated.
I've had quite a few people bolt when I announced my cancer. Hurts. But I let them go ... I'm trying to forgive them. If they come back? Don't know ... Will cross that bridge when I get to it0 -
Hi everyone. There's so much to read and I've been trying to keep up with it but this dilaudid haze is having its way with my ability to respond.
The BS says there was no sign of cancer in any of the nodes they took out? But they have to biopsy them?
It's taken me about 15 minutes to write this but I want to wish everyone well with surgery, chemos (firsts, lasts and all points between) as well as test results/scans/tissue expander pain and pain in general.
You all are the best!0 -
Hi Lee! Yippee!
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Lee that's awesome.
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Congrats Lee!!!!!
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Lee, I have been thinking of you. GREAT NEWS. Congrats
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Good news Lee!
Yes, they check the nodes in the OR under a microscope...then they send them out to a lab with stronger equipment to check them. Occasionally the lab will find cancer..usually micromet or isolated tumor cell that for whatever reason (equip not strong enough, human error) it was missed in the OR.
But I don't think that is very common.
Once you get that final "clearance" you're ready to FLY!
Woot.
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Lee, YES!! I'm trained as a clinical pathologist (lab test stuff) and I know that the anatomical pathologists (body tissue stuff) confirm what the technicians, surgeons and front-line people can see with their own eyes. Congratulations!
And Katharine, I love your post! I am going to use that in the future. This breast cancer has been an eye opener for little ole naive me.
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And Sol, congrats on the understanding friend. I swear, I wish I had some sort of divided stick that would wiggle when I'm about to tell someone that will act like a weirdo. I still can't get over that lady that said to me "lumpectomy? That's all? What will you do when they get in there and keep finding more cancer?" (like the cancer is a pretty gold color and they can just see it and keep digging in the boob cave! Holy Mother of Pearl. And then she said "What if you wake up and they took off your boob? Will you be ok with that?" I was just 5 days post-diagnosis, and I walked off to my desk and shook.
Now she wants to come sit with me during chemo tomorrow. Um, suck it Trebeck!
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Lago - I completely understand your feelings - my family have acted disgracefully since my diagnosis and I am now estranged from my parents and brother and his family over something that could have quite easily have been sorted yet they refuse to fix. 'I knew everything pre diagnosis was about them - I should have known they are incapable of looking past their own noses to see what I am dealing with. To top this off my mother has told at least one person I refuse to speak to her and is getting sympathy - ugh!!! I was confronted the other day as to why I am not talking to them (triangulation at its finest). It makes my blood boil
Do they think that at some point they can then just "pop" back into my life when they feel like it? Especially after deserting me when I need them most?TonLee - thanks for the heads up on the triple positive group
Im on day 11 #1 of 4 AC and so far only minor SEs - hopefully this will continue however I am now starting to worry about the Taxotere i will be having after AC which will be 4 every three weeks (+ Herceptin). From most personal accounts I have read most people who handle AC well have problems with Taxotere. I know I shouldnt even be thinking about this yet - I guess I have too much time on my hands these days. One of the SEs for a few days was a fuzzy head - slowed my overactive brain down which oddly enough was a relief (weird hey?).
Decided to enrol in LGFB and will be attending next week (day 14) - not sure if I'll have hair then.
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Well my eyes have caught up but my brain hasn't
Lee great news
Lago I'm so sorry about u'r sister--I don't have a clue what I'd do without mine. But u did all u can do and u have a very kind DH so just be happy.
Pbrain
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My computer conked---Pbrain--I loved steroids, I'm a very laid back person so I acted more normal with them not totally but I worked with energy and the following day was my 12 hr day at work then--And I had no problems so for me it was great. Then in 2 days I'd collapse hahaha
My former Onc. called me uesterday just to talk woman to woman and I didn't know how to talk normally to her cuz we always talked medically well she did I didn't She said she missed me but what was funny I told her that I'm seeing a heart Dr. and what was said and she said U mean u actually listened? LOL and I said Well this is my heart, and she came back with u never listened about cancer--ever and we laughed--I told her about our threads and how wonderful that I met such nice people this way.She was happy but she did say (I was laughing at her) that I really never accepted cancer just went along and she said that saved my life.( I still don't) Do u'r heart the same way and i'll do fine. hahaha I was surprised but a nice one I always loved her and it felt nice just to talk to her like a real person. not my Dr.
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Ha ha Ha Cami, you are so funny and so fresh! I love your posts! Can you tell I'm still up and kicking after my second steroid pill. I feel like I can go to work right now. Beeeeezar! I'm a good sleeper. I love that your onco called you, can you tell that you charm people? You seriously do!
Shikari, welcome and so sorry on the family stuff. I just don't understand why some family members become so confrontational. A lot of the sibs and parents of the ladies on this board sound a bit narcissistic. My younger sister in Ohio is sending out a care package to me, so I feel so much better. My sisters kind of backed away a bit over this recent diagnosis, but not so much that I had to worry. Just no word from them. I think they just had to get used to the shock because it is scary for blood relatives. What if it happens to them. But some people's family members are just too focused on themselves and are pretty worthless. I'm glad I'm not dealing with that.
Hang in there with the AC. I hear if you can survive that, the T is nothing and neither is the H. They first proposed the AC to me, and I asked if I could avoid it. My onco said "sure". You might get some sort of odd ball side effects from the taxotere, mostly the blackening of nails, but no biggie. You will be fine. It is a bit more mellow I guess. I don't know but a lot of these wise women here do, so post some Q's. I start tomorrow...hence me being up with wild roid rage. Tee hee! I never stay up this late. WTF?
I love this board. I will post tomorrow in my bored state as I experience my first fun long round of chemo. I'm still wondering when to have the head shaving party....
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The day after chemo I cut my hair short, for me, and when it started coming out by the handful, I shaved it. My hair started coming out exactly 2 weeks after my first chemo.
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Linda, I had my hair cut short (seriously short!!!!) about 3 weeks ago. My hairdresser and her cronies were asking if I wanted them to make a bed pillow from what was cut off. I was thinking "hmmm, I can use that in my garden to deter rabbits" HAR!
So my hairdresser who is also a good friend will come over and join me in my "head shaving party". One of my good male friends said he will get his head shaved in solidarity. I'm thinking lots of food, wine, beer and conversation. But now I'm not sure exactly when it will start falling out. You support my 4-rat study on this board that it will be 2 weeks or so (yum, Thanksgiving---pumpkin pie, Pbrain?" "oh, sure, let me just clean up my hair" arghhhh.
I have to go to bed. I'm wired!
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Much love to all. Congrats to those hitting milestones. Welcome to the newbies. Hang in there to those in the middle of tx, if you're just starting tx, you will make it, and if you have question.s just ask. Did that cover everybody? LOL
Pbrain, I started losing my hair two days after my second tx, so pretty late. I was going to get it shaved the next day but ended up in the hospital, had to shake out my pillow every morning, though and finally got it cut a week later. It came out in multiple strands not big handfuls, but I was sick of eating it by the time I could get it shaved. Oh well. BTW, I had TCH and that makes a difference I'm sure about when it comes out. Much love.0 -
Ugh, I've slept a total of 3 hours. I'm up and pondering over cleaning out my freezer. Seriously, me and this dexamethasone could rule the world. I have to decide if I like it...I could be a skinny powerful woman with no friends and bad breath running around and beating back entropy... or I can go back to my laid back, chubby, sleep-hog of a self. Sleep hog, that's it.
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Ladies, I love all your crazy senses of humor, your encouragement of each other and even your rants. So glad I found this group!
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Shikari I assumed I would get every side effect there is from chemo. I don't do well with meds and thankfully I never needed them in the past. Well I didn't get every SE. I didn't even get nausea, flu like fatigue and the taste changes were very minimal… all more common SE of chemo. (Granted I did get some of the more less common like the nails from hell. To be honest, if I could have stopped after my 4th tx it wouldn't have been bad at all on Taxotere. I hope you are pleasantly surprised.
We all have to go through our own emotional roller coaster at the beginning. Now that I'm on the other side I have realised that my sister is who she is and isn't going to change. She'll probably get worse. I don't hate her but have trouble with the "sister" title. She's more like distant family now. Maybe your family will come around. My family is very controlling. I'm the only one who'll admit it… and as a controlling person I try to control that behavior
Pbrain I was told at the wig place with Taxotere/Carboplatin my hair would start to fall out on day 16. Made an appointment on day 16 to have my wig fitted. Day 15 I called and said my hair wasn't falling out. They told me not to cancel the appointment. Sure enough my hair came out the next day. Lots of drain l of hair in the shower. I have a ton of hair so it took some time for it to all go. I cut it short the day it came out but not buzzed. Ironically I wear it shorter now. I did love steroids but I have to be honest I didn't get a good night sleep till maybe 10 months after my BMX. It was always something. I had to get used to sleeping on my back (sides didn't work after surgeries), then shingles and some night flashes etc.
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