Calling all TNs
Comments
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I'm with Gilly, I'm a wine drinker. But I've cut down to 1-2 glasses a week. Most of the time. Well, I try.
I drink a lot of green tea, it probably has caffeine, but it is still supposed to be very good for us.0 -
Hi...I am a convert - and I don't understand it. I was dx'd with mets to the spine in 09/2009 and was ER+/PR+,HER2-. In late July and into August, I had some sort of anomoly after being stable on Faslodex since April 2011 and landed in the hospital. I now have 'sprinkles' in the abdominal wall and flipped to a triple negative. What the heck?
I started chemo on Sept 2nd. Abraxane and Avastin and looks like it will be chemo always.
Anyone else flipped to triple neg after 13 plus years being ER+/PR+,HER2-? If so, was there some explanation?
Thanks....LowRider
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Lowrider: No answers for you but wishing you well.
About diet: My Onc said cut back on processed sugar. Alcohol OK in moderation. But stressed at least 30 minutes of exercise 5 or 6 days a week. And she also said that what ever is a major stress in my life to either fix it or dump it. So I quit my job and fixed my DH. I am also agreeing with Gilly. I love to share a bottle of wine with DH over dinner. Or have a Good dirty martini while out at a favorite steakhouse. I am doing what I can to keep the beast away but deep down I feel it is a just a crap shoot. Either it comes back or it doesn't. I think about that everyday....but I am trying to get back to the joy of living and even starting to make some long term plans/purchases. Just kinda said oh what the hell...go for it.
Having difficulty sleeping tonight....Thinking of those having troubles and those still in treatment. Sending you healing thoughts.
And as always, How grateful I am to have everyone here to listen and lean on. Your support is priceless. And I thank everyone of you.
Navy
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Hi Ladies,
I just had my three month check up yesterday. My onc.examined me thorughly and everything looked and felt fine. All of my nurses thought my "pixie" hair looked "adorable", and chic. They all told me how healthy I looked. I wont' get all of my bloodwork results until Tuesday. My onc. aways orders a CA-29, tumor marker test. It was high before chemo, but on my last checkup it went way down to normal. I'm hoping anpraying it stays that way:) I know i should be ecstatic but I still have that fear o recurrence. I was in the best shape of my life when they founf my tumor via mammogram, so telling me I look healthy isn't as reassuring as it should be.
Thanks for letting me rant again:)
Take Care,
Lisa
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Does anyone know why we would need to avoid coffee? There was a study from Sweden that showed that coffee drinkers were less likely to develop estrogen negative BC. I occasionally drink coffee and alcohol. I see so many conflicting studies.
Lowrider: I hope you get some answers. It seems the more we learn about TN the less we know about it. I wonder if you could have been weakly ER/PR? Some people here are. I hope the Abraxane/Avastin combo works well for you.
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Gilly, Navy: I'm with you. Wine is my guilty pleasure. I would love to indulge in a couple of glasses every night, but I limit myself to a glass or two 3 or 4 times a week. I find that a big enough sacrifice.
My onc says take things in moderation, a little wine is fine, and I think for TNs it's less risky because our tumours aren't fed with estrogen, right? Titan, also agree: I run, I weight train, I eat healthy, lots of "anti-cancer" foods. I take supplements. I drink green tea etc. Enough already!
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"I just think it is so funny how we are all across the world and the states and all our dr's tell us different things."
My point exactly. I do what I d*mn well please, all in moderation. I refuse to live my life in fear of recurrance. Besides, wait a few minutes and the "expert" advice will change. Medicine is as much an art as it is a science.
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Lowrider: Hi there! I remeber your posts from the humor site and I am betting stress is a huge factor with TN's. Who knows why it switches form one to the other but my dr. told me get rid of the stress so when I was diagnosed I quit my job but I realized that just living in Los Angeles is incredibly stressfull so now I moving to Kentucky! I plan to spend a lot of time gardening and outside because it's beautiful and peaceful there.
At first I was really paranoid about everything I put into my mouth. However, I have never really been someone to eat junk food or fast food and I always tried to eat healthy so I now try to eat lots more veg & fruit but I also try to only eat organic meats, poultry & dairy. I used to only eat fish but ever since I finished chemo I crave lots and lots of protein so I now eat meat again.
Gilly, Heidi, Suze: I love a good glass of red wine with dinner but I try to limit it to only one glass. Same with coffee-one large cup in the morning is enough, anything more and I get jittery. I find that I can't live my life in fear of what goes in my mouth. I think stress played a huge part in getting cancer in the first place so that's what has to go!
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Hi Ladies doing well I just finished my 6th radiation treatment . I also doing lympadema treatment to get fit for my stocking.
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Guys, I'm going to be a bit of a mess for the next few weeks. I have my PET coming up, and I think one of the nodes in my neck is starting to grow again
. My LE has flared up recently, and it could be related to that, or it could have been there all along - dead from radiation (I have another palpable node that hasn't changed since the end of radiation) - and I just noticed it, but it still has me on edge. So I may be on an off.I am most worried about hearing, yes, it is still in the nodes, but it hasn't gone beyond that. Sounds weird, huh? But I am living on such an edge right now, the thought of having to stay here sucks. If that happens, it still gives me a smidge of hope, but the emotional cost is high. So a part of me wants all or nothing - yes or no. I HATE THIS DISEASE!!!
Lowrider - I'm so sorry to hear about the switch to TN. That just sucks. My MO does think that lower ER+ cancers can switch to TN over time, and less commonly the other way. I hope the Abraxane and Avastin gets it under control for you - that is a good combo that has been showing a lot of promise for TNs.
lynniea - I'm glad to hear rads are going well! Keep it up, it will be over before you know it! Good idea on the LE sleeve. I have mild LE, but when it flares, the sleeve really helps.
Heidi, et al - you said it well. I try very hard to eat what I should, but I still let myself have whatever I want on occasion. I enjoy wine, I'm never giving it up completely. And you can bet that if I have progression, wine will be a large part of my life again when possible
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Hi ladies Thanks Suze for the input about the sleeve I was very small fluid but after the tx I am glad i did it. I am going to attend Celebration of life at the Hospital I go to. I hope everyone has a great weekend.0
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Thought I should change my photo. Todays the day all the hair I grew back is falling out. I thought I might be the one who didn't loose it again. It's silly, I don't know why in the scheme of things this is so sad for me. I just hope this chemo is working and it's all worth it in the long run. I'm scheduled to get my port replaced next friday. If it heals quickly I will get the Avastin the following Tuesday. My onc is putting me on the extended oxy and the .5's for break through pain. My pain is so much less today than yesterday. I asked her how they will put the port in when my new tumor on my clavical is so close to where my last port was and she said the surgeon will figure it out.
Suze- I'm thinking of you. When is your PET? What is LE? I pray this is working for you too! Man, I wish I could give you a super big hug right now.
Heidi- thanks for the photo info I will see if my son will help me when he gets home from school.
Gosh really sad news for so many of you on this board. My heart goes out to all of the newbies, friends and loved ones that are going through this FC.
painting- Switching oncs was the best thing I did.
I know it's easy to say" Enjoy every day we have" but we really need to. I try and think of something that makes me happy like a warm hug, or the sun shining, flowers blooming etc... I wish all of you a smile today.
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You can see on my new Avatar how swollen the tumors on my neck and chest have made me. I'm hoping this Avastin will shrink them right up.
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MBJ- Yeah!! Congratulations. I am so happy for you both.
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I'm with Heidi on what to do, eat, smell, drink, etc... I think we all hear different things from our doctors, because they are each telling us what they personally believe in themselves, not medical facts set in stone.
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LJ: You look beautiful - despite all that you are going through and feeling, your beauty is still radiating out of the picture.
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Laura: I agree with LRM, you look radiant in your photo and really cute with short hair. I know that it's sad to lose the hair again and I hope too that the Avastin does it's stuff.
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laurajane: Love the picture; you look beautiful, and I am really happy to hear the pain has lessened.
heiditoo: Good point, I think I'll adopt your attitude.
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LJ- You look great! Glad to hear that your pain is under control. Like always, I love your positive outlook and I aggree with you, we do have to enjoy each day to the fullest.
Have a great weekend everybody.
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Laurajane, wow! you look absolutely stunning! I don't see the swellings in your neck, maybe because I just don't know how to enlarge the pic, as after chemo, my eyes is not the same. I think even with what you're going through, you are an absolute hottie!!!!! Thanks for sharing your pic with us.
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Some of you have probably seen this before (it's been around awhile), but if not, it is *definitely* worth watching!
http://www.youtube.com/watch?v=_OBlgSz8sSM
Always a good laugh...
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Love the vid Heidi!
LJ...yes..like Lovelyface said you are a Hottie! I really can't see any issues with your neck either..I see what I want to see..you know what I mean?
OMG..my DD daughter is turning into Bridezilla..the wedding is in 3 weeks...all I asked her was how many bottles of champagne for the wedding party table and she turned on me...seriously...how am I supposed to know how many bottles her friends can drink?..I'm not sure DD is the proper term for her right now...
MJB....you talk about reducing stress..I dunno how in the hell I can reduce my stress in the next 3 weeks..help me!
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And Lowrider...welcome to the tn club...you may wonder why you are here but we will love you anyway..ha ha..
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Titan - maybe you need some of the champagne yourself to help with your stress...lol You will look back on this time with fond memories some day!
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Lowrider - so sorry you had to join the TN group, but as you can see it's a good group of women.
LJ - You look beautiful in your picture - love the hair. I'm glad to hear that the dr changed your pain meds. I got so much more relief once the onc switched me to long acting meds with short term for break thru.
Titan - Good luck.........the stress before a wedding is tough from what I understand from my friends with daughters getting married. I think I may be feeling what you're feeling next summer.
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Bridezilla:
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Seriously Heidi..that pic looks like my kid!
Jenn3..I will send you any extra champagne if I don't drink it all that night.ok?
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All this preparation and the day/night goes by so quickly..and so do the $$$ but whatever...at least Bridezilla will be happy..my Dh and I are going for a much needed beach vacation one week after the wedding..we did this one week after I was done with treatment 2 years ago..time to recoup and reflect...
I'm not complaining, really..I am so happy that I will probably (nothing is a given) be here for my daughter's wedding...
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it's been a bad day, port that was put in wed was taken out today because of infection.i had been on antibiotics for a wk as a precaution because of lumpectomty site being red and a little warm,took the last this morning so WTH.
so now what, how and when will chemo start? more questions,more waiting arrrrrrh
i am on bactrim ds for 10 days and pain pills, hopefully won't need them!
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Titan: Sorry, I am no help at all-Me, I am just running away from it all. I second the champagne drinking idea. Better order an extra case for yourself, lol. So glad you are going away after-you will need it, I am sure!
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