Calling all TNs
Comments
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LJ: So nice to hear from you. Your courage and strength is awe inspring. I pray for you every day and hope that the new medicne will finally kick this cancer's a**.
Happy New Year to Everyone! May the year be healthy and happy with little or no SEs. (oh and I hope we have less women joining us this year than last - one less person at a time until no one has this awful disease).
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New Year's Resolutions:
Back on diet.
Midnight off the threads and beddy-bye.
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KS and Tif - right back at you and thank you both!
Heidi- I have such respect for you. A couple of months ago I went to stay with my sis in N.C. Where she raises horses. Seeing all of the work involved blew my mind. Her 10 yr old daughter was up at 5:30 every morning to feed them etc. Before school. The daily cleaning of the pasture, barn, grooming it is just amazing! They are such amazing animals.
Bernie- what a hilarious post. Too funny. Thanks for sharing.
Swanky- thank you. I'm wishing you a wonderful new year too.
Well I've been on this macrobiotic diet for about two months. I even served it Christmas for my family. But, today I am making waffles in my new waffle maker I got as an x-mas gift and this evening I am making traditional corned beef and cabbage and my family will all be here. A great way to start the year. Happy New Year to all of you! -
Happy New Year to you all!!
LJ, It's great to hear from you!
Bernie, that's too funny! Thanks for giving a laugh to start the day!
Teka, I'm trying to improve my diet, too. I made a huge pot of veggie soup yesterday in my new slow cooker- I'm going to freeze some of it to save for lunches at work instead of eating take out. I'm slowly weaning off the twice weekly pizza night at work, too (you can see I have a long way to go!!)
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Ann Landers
Let this coming year be better than all the others. Vow to do some of the things you've always wanted to do but couldn't find the time. Call up a forgotten friend. Drop an old grudge, and replace it with some pleasant memories. Vow not to make a promise you don't think you can keep. Walk tall, and smile more. You'll look ten years younger. Don't be afraid to say, 'I love you'. Say it again. They are the sweetest words in the world. -
Laurjane: Glad to hear you have a new plan of treatment and I am also glad you are advocating for yourself -- so important to do this to get the best of care. I fired my arrogant, ego-maniac first BS as he gave me the worse prognosis ever. Go with your gut and don't lose hope. BTW: I used the macrobiotic diet a few years ago to get rid of a fibroid tumour and it worked really well and really fast: in one month my tumour went from grapefruit size to walnut size with diet alone. I never tried it with cancer though I radically changed my diet while going through treatment. Hoping all of it works for you. Big hugs!!!
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Love the animal resolutions -- hilarious!!!
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Hope and Debke33.....I am currently taking 5-FU which is the infusion equivalent to Xeloda. It is hard to say what, if any side effects I am experiencing as I am also on Methotrexate, Navelbine and Leucovorin. My insurance would not pay for the oral Xeloda so we opted for 5-FU which they will pay for. I won't know if it's working or not until I am finished (Jan 12th). I did have AC, Taxol, Cisplatin and Gemzar before and those did not work so my fingers are crossed. I have been told that the drugs I am on now are "old school" drugs that have worked for years. I guess there is something to be said for vintage. Good luck to you both!
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LJ.....the side effects for Cisplatin were not too bad for me. I am hoping the same for you. Sending positive thoughts your way!
Bak94.....Ugh! sorry to hear about your infection and trip to the hospital. Hopefully you are on your way home.
Happy New Year to everyone! Here's to a new year with new challenges........bring it!
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Laurajane: I'm very happy to hear from you too. Please try to stay in touch here and let us know how this chemo works for you. Be a squeaky wheel with your onc... be relentless until she emails who she said she would. That's ridiculous to me. She should be seeking whatever advice she can get on your behalf. It's not that another onc might be smarter, but they might think of something she hasn't. Many heads are much better than one!
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Hi ladies,
I just started posting on forums this past week, sort of after the fact but better late than never. The week after I was diagnosed I got in front of surgeon, who I really like, and he, after a brief physical examination and review of my biopsy and test results, had an action plan for me. I must admit that the week leading up to that appointment I felt really lost and alone but once I visited with him I felt like I was in good hands.
It was his opinion (and also of my onc I found out the following week) that I should have neoadjuvant chemo, then surgery, then rads. Was surprising but when he explained that the chemo should dramatically shrink the tumor and would therefore make surgery 'easier' it seemed to make sense. He said while mine is a nasty form it usually responds very well to treatment. All images taken thus far show no evidence of spread to lymph nodes or other organs, which is a relief. I hadn't had an MRI at the time of my surgical consult and the dr told me there are about 10 people in line but that he would get me in before I left. I was in in 20 minutes. Was awesome. Really felt like he cared. Considering my gynecologist pretty much blew off my concerns when I first brought them up to him (I was having a twingy pain in my left breast for a couple months, couldn't feel any mass at first but after a couple months it felt ropey - he dismissed it as fluid build up and told me to come back if it continued to cause pain...seriously????) it was nice for someone to finally give a damn.
Anyway, the oncologist was great too - spent a good half hour explaining things to me and my family about what I have and what chemo regimen he had in mind for me. I am currently two thirds the way through a TC regimen - I've had some mild SE's, nothing too jarring, fingers and toes are getting sensitive now and skin is friggin dry (besides being bald). Will be really happy when I'm done with this part of the process!! Groundhog Day should be my last treatment.
Anyway, still have a ways to go in this process but figured I'd join the discussion. Hope everyone enjoyed the holidays! Fight on!!!
Heather
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Heatherweather - Welcome to this thread too.
Wishing everyone a Happy New Year. Thanks for helping me feel less freaked out about being TN. I don't always post, but I try to follow along. Hoping everyone's 2012 is a better year.
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Welcome, Heather!
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Welcome Heather, the ladies on this thread are amazing, you'll find a lot of support here!
Ok Ladies I know this isn't the forum for complaints but just need to vent. Christmas was the first time I went without the wig to see my grandfather. He had asked if the cancer did that to my hair (its about the length of a buzz now) and I said yes. He responded with "I'm glad the cancer did that to your hair and it wasn't your choice because I don't like it" Needless to say I'm incredibly hurt and upset. He's never been one to keep his mouth shut, he's always had to pick out the flaws on me and everyone. I grew up constantly hearing about my weight. Its no wonder I have self image issues. My hubby and I treated both him and a friend of his from the home (he's 90) to lunch at Ruby Tuesdays yesterday and he just couldn't keep his big mouth shut. Every damn time he would look at me he would laugh and say "oh that hair!"
Everyone says I just need to let it go because he's old and has no filter left. Frankly I'm disgusted and really don't want to visit with him anymore. How can someone be so unknowingly cruel? How can I tell him he's hurt my feelings and needs to stop with the coments? His response has always been that I'm too sensitive.
Other than my grandfather, I had a very nice New Years, Hubby was actually off I think for the first time in 6 years so it was just nice to spend time together on a holiday.
Hope everyone had a nice New Years,
Heather
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Good morning ladies! Well the new year has begun and I believe it's going to be a fabulous one. It feels great to be able to say "I'm here"
Inmate- you must be reading my mind. I was planning on posting today to ask if anyone had done Cisplatin. I did do carboplatin with Gemzar but I was told cis was more toxic. What were your SE's. I'm actually even more terrified of the Cetuximab. Hoping it works or slows it down so my dietary and life style changes can keep it at bay. How did you select your name. I really thought you were in prison?
Heather- welcome. These gals have helped me so much as we will try and help you too!
McCrimmon- WHAT! my response has always been "I'm sensitive to your insensitivey, MF" (excuse me for those I may offend", no matter what the relationship, we can all choose who we spend our time with. Surround yourself with people that love you for you. I feel so sorry for people like that they must be very, very sad on the inside. "Letting go" is a struggle I am constantly trying to work on but
it is so good for us to be able to do it.
MBJ- I've had fun on this macrobiotic diet and truly feel better eating it. I was given all of these wonderful cookbooks when i was first diagnosed that i completly ignored up until a couple of months ago. I was really looking forward to meat last night but funny it wasn't nearly as exciting as I thought it would be although my family said it was the best I've ever made. It was all that love I put into it, I'm sure. Smile!
I hope you all have a great day today. I am going to meditate and then work on the painting I'm doing for my daughter. -
Heatherweather, my only symptom was pain, sharp and like nothing I had ever felt, and my GYN likewise blew it off as "never a symptom of breast cancer". It was my only symptom as I never had a palpable lump.
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Heather,
I'm sorry you had to put up with that at lunch but I wouldn't feel bad about avoiding someone like that, particularly while you are still going through the recovery process. I agree with LJ - we choose who we spend time with and people like that must be horribly sad inside - if they are in touch with their feelings at all. There is someone in my life like that and I have had to limit my exposure during all this but when I haven't it has been very tough. No matter how much I know it is them and not me, it still stings to hear things like that and I am vulnerable enough right now.
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OK, let's all close our eyes for a moment and go to St. Lucia...
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Oh yeah!- I could definitely use a trip there!! Thanks Heidi!
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Well today is the last official day of my holiday - back to the grind tomorrow!
I hope all of you had a great break, and I'm wishing us a happy and healthy 2012.
This is my 3rd Xmas since my diagnosis December 4th 2008, and I have to say, this is the first time since then I've truly felt the joy or happiness of the season. I feel like I made a wonderful Christmas for my children to remember - did all the decorating, baking, candy making, food, all the stuff I've kind of half-assed in previous years because of that dark cloud hanging over me. For some reason this year I've been able to let it go enough to enjoy myself.
Good to see everyone's updates - though I don't post often I do keep up with and think about you a lot. LJ, glad to see you back. And to the new folks - it does get better, we're here for you.
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LJ......The Cisplatin SEs were very manageable. Mostly fatigue for a couple days after with a little dizziness (not enough to be overly concerned). The nausea was very light. Make sure you keep hydrated! I have been very lucky in the 1 1/2 years of constant treatment I have not gotten sick and my appetite has remained somewhat steady. Of course I wonder if that is because the drugs didn't work. I am always secretly hoping for some severe side effect to make me feel like it is working. Oh the things we wish for?! I am not familiar with Cetuximab. I hope any side effects can be managed for you. When do you start?
My name came from my original diagnosis date and how I felt when diagnosed (like I was in prison). I guess my reasoning was this disease makes us all feel like we've been handed a sentence of sorts. I am understanding more and more just how much of a life sentence this can be. Perhaps I will change my name when I get my turn to spin on the dance floor with NED.
Heather......Boys say the darndest things! I agree that you can limit your exposure to those who can't seem to open their mouths without stuffing a foot or two in it. Again, in my experience it's mostly boys but not strictly gender specific. Don't let it get to you too much and if you must, say something to them. Take the opportunity to wave your bald flag and speak your mind. It really can make you feel better, even if it does sting them a bit.
Okay...the best comments I heard when I was bald:
10 yo boy next door....."what happened to your hair?" "Was it the lice?"
nephew...."Your hair is different." me..."do you like it?" nephew...."will it always be different?"
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Inmate, your nephew sounds adorable. How many more treatments until you are finished? I know what you mean about the side effects. I was under the impression that you lost all of your hair during chemo and I was so afraid it wasn't working because I still had a very small amount left.
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Hi, Just thought I'd join this thread since I was diagnosed with TNBC last June. I've been on another thread with women who all started chemo in July. It has been a wonderful group but now that I've finished chemo and rads would like to be with other TNs. I've been reading some of the previous posts and it's interesting to learn about some of the other treatment options. I see my onc next week and plan to ask her about Metformin. I had a clean mammo a couple of weeks ago and they don't want to see me for six months which I guess I take as a good sign. Anybody else seen more frequently than that the first year?
I've also noticed alot of other cat lovers on this site. I have two-Sookie and Sunny. They have been super cancer buddies all through this experience. Hope you're all as happy as I am to leave 2011 behind and look forward to a better 2012.
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HeatherWeather-It is so nice when yo uhave a team of doctors that will listen and take time with you. Glad you were able to find that.
Mcrimmon-I don't know what I would do with those comments, as I am truly sensitive. I always wished I was the type of person that quckly came up with a comeback to the comments, to put him in his place! You do not deserve to have to put up with that.
Inmate-yes, I feel like I am in prison! Especially since I have been in the hospital!
Welcome Khs. I have lots of animals, including 2 cats, I get a tird one in a few days because my friend is moving and can't take hers. Hers is the kitten of one of mine. Mine was a stray and was preggo when I took her in, I kept one of her babies and now will have another.
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what does Ki-67 mean?
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Bak - I'm sorry, I keep meaning to post that I'm sorry your stuck in the hospital with that infection. I hope its clearing up and you'll be out soon. Are you feeling better?
mtnbiker, I'm not sure what it is exactly and I keep forgetting to ask. Starting to really believe chemo brain was my worst side effect.
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Hi girls, surprise surprise yes It is me I am back to the land of the living....barely but here. I made it through the holidays and going to try my best to focus on all positive in 2012. Cant beleive one year canniversary is coming up...I dont know how that happened. Well I wanted to wish you all love and happiness you deservve in 2012. Thank you for always being there for me my sisters
Hugs Kymn
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More than you'll want to know about ki-67 and cell proliferation.
http://jco.ascopubs.org/content/23/28/7212.full
Mine was 90%
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Mine was 99% and I am not concerned. That article was from 2005 and stuff dated last week can be out-dated.
My surgeon at MSK gave it no significance, and I have stated the reason why innumerable times in here.
I hope people are not stressing over something of questionable significance. Additionally, TNBC is typically Grade 3 and Ki-67 is just another indicator of this.
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Well to be more specific, Ki-67 is a molecular marker, a protein that reveals accelerated cell division.
Whether or not it's a predictor of anything else seems to be unclear. It's probably of more interest to research scientists than to physicians developing treatment protocols.
You can make an argument that it has no significance, but I wish mine was under 10 rather than 90. I might not have had the rampant spread that occurred in a matter of a few months.
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