Triple Neg Survivor
Comments
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Hi there to any newly diagnosed triple neg's. I just want to say that I was very scared when I was diagnosed as a stage 3, node positive & triple neg and with a poor prognosis. After mastectomy,chemo and radiotherapy followed by a tram flap recon I'm now three years out, feeling great and loving life. Just want you to know it's not all doom and gloom to be triple neg.
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That's wonderful! It is wonderful to hear news like this. What chemo treatment did you do?
Thanks,
Cheryl
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Thank you Lucy...I'm with Cheryl - you give us hope!!
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Yay Lucy! Thanks for that.
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I'm a triple neg survivor and proud of it! I'm over 2 years out! YAY!
It's not all THAT gloomy. There are more out there. We are just a minority.
I had AC followed by Taxol.
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Hey.......my mom was dx in 1999 at age 69 years old.........she is a triple negative. She is now 77 years young........and you know what, she never even new what her pathology report said. She just puts all her trust in her Oncologist....which is mine also....and gets on with living life.
I remember her being sort of sad during the first year.......but man did she get busy with life after that. She prefers not to discuss Cancer because it makes her think about her own diagnosis years ago. She tells me to stay off the message boards and get busy with life. I have reduced it down to Wednesdays only.....but I have cheated this week.........because I NEEDED YOU GUYS!
Love,
Terry -
My Chemo was 4 doses of Epirubicin and 4 doses of CMF followed by 12 days radiotherapy. A big dose of positive thinking also helped I'm sure of that.
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I disagree, as it is all doom amd gloom! Cancer stinks and the treatments are even more odious than the disease. There are no answers; I am sick of fooling myself into believing the load of sh999it they feed us. I am sick of feeling like a chump. I am tired of it, the damn doctors and the garbage they feed us.
Indi
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I'm new to chat rooms and keep getting lost. thank you Lucycat for your positive replys. I have "1 more treatment" of T.
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positive, negative, tell me...what reply is different other than truth?
Indi
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maybe we'll all die like my Debbie one my closest childhood and adult friend, maybe we won't. it's where we are.....
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I say lets kick a... and survive as long as we can for not only us, but for our loved ones and generations to come.
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just want to say I agree with Godsgirl and we all need to keep as much of a positive attitude as possible....
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Hi Everyone,
I am a two year trip neg survivor and things do get better with the more time that passes! I can go a whole day without thinking about it and when I do I am able to push it out.
There are a lot of us triple neg survivors out there - sometimes I think this disease is harder to deal with from the mental standpoint than the physical.
What a special group of people we are - best to everyone!!
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I was dx Triple Neg in '96, micromets to nodes, Stage IIb. Did A/C & rads.
Back then they told me I would be very lucky to make the 10 year mark.
Here I am, halfway through Year 12, healthy, happy and livin' life.
I won't tell you it wasn't a rough ride, it was {insert stream of cusswords} horrible.
I learned by experience that a positive attitude won't cure you, or prevent a recurrance but it sure does make life a lot easier to live; for yourself and those around you.
Indigo, I've been where you are now and felt the same way. I managed to find my way through those feelings, while not denying the truth in them. I accepted the fact that I have no control over the disease, but I do have control over what I let it do to me emotionally. I'm not going to tell you to try a positive outlook, I was ready to cram those words down the throats of people who said it to me. I do hope you find a little ray of sunshine, some little bit of joy to make your journey easier or at least give you a small measure of relief.
All the best,
NED
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Two and a half years Triple Neg survivor here. Can I get a woo hoo? lol I did AC then taxotere.
I don't follow the gloom and doom / statisctis thing. This is all a crap shoot. It is what it is.
I"m not the cheerleader rah rah type at all but I refuse to give BC any more thought or drama than necessary. We're here now, make the best of it.
That being said, cancer does suck donkeys!!!!
Watson
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Go Watson! I'm with you...don't give up to you have NO more choices.
I have been given nothing but bad news for 2 yrs. Everyone around me thinks I'm NED because of my attitude. I'm having a life in the middle of cancer.
Living in hope
Fla
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I've just finished my chemo 4 weeks ago. I'm now getting my first of my annual scans. I should start out by saying I had bilateral mastectomy. 12 years ago I had 28 nodes removed on right side. This year with the bilat. I had 6 nodes removed on the left. Therefore, no pokes or blood pressure on the arms. My bone scan they said they can inject my foot. My CT I had yesterday......it was quite the drama......where to put the IV. I had my port removed last week which they cannot use anyways because the push is so hard and fast. They cannot use the foot either for the same reason. They had to get a dr. from the ER to put one in my neck (it didn't hurt). They said I was there first patient who couldn't be poked in the arm (or at least that told them not to).
What does everybody else do for their CT scans???????
I'm only 44 that means I better figure this out if I have to have them annually. I think the onc. just thought they would know what to do and obviously they didn't!
Sharon
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Share,
Good question...I would like to hear everyone answers. I was told I could not use my port for this or that. After my 2nd mast. I now could use it for everything at my main clinic. I just had another surgery at a different clinic and they used my feet it was very painful and than they moved up the leg also very painful.
I love my port and will not take it out for an while.
Fla
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You NED ladies are so fortunate and a few years out, too, which is great.
I have a good attitude, but cancer is still kicking my butt. I got mets 4 months after my treatment ended and it's steadily progressing. We're yet to find a chemo that works, but there are still more to try.
I have alot of faith though and I know God is looking after me. I'm still able to work full time and do chemo every week, I have a good support system where I live, I can still crack jokes and find things to laugh about; I have decent health insurance; I am truly blessed.
But I feel like crap alot too, and cancer has taken away things as well, and it makes me angry sometimes.
May I'll be stable or NED someday, or maybe I'll lose this battle. Who knows what's gonna happen? Not me. I just pray for the strength to get through what comes my way.
Sharon, about the port. The power ports or super ports are able to handle the contrast dyes for the CT scans. When I got my port, my onc said no to this kind of port
so I get poked in the arm or somewhere.
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Gosh, I hope you all know how very much I and undoubtedly others who aren't triple negative feel for you. It breaks my heart to see how this disease messes with people. And I can just imagine the anger generated when platitudes are given. I'm sorry...
I dropped by to say there is a daughter of a triple negative,Jenn, who may come and post here. Her mom just got recurrence to the lung and both are real scared.
I scrolled through, and if I may say to Sharebear. The IV thing and prior node removal. Practically speaking, you can have an IV in your arm if it means less yearly trauma than putting it in a leg vein or neck vein. The no needle thing is relative. If your life depends on knowing test results, then a single needle stick in the arm with a big vein may be much safer than elsewhere. Some studies show that needle sticks into veins do not cause LE. I've had my LE vein used once in an emergency.
All the best to each and everyone of you remarkable ladies. I wish too for just daily strength.
Tender -
Sorry, I hit it twice by mistake. T. -
Hello Share bear and Everyone,
I am three years out from treatment and am having many opportunities to have blood tests, IVs, and lots of tests using contrast materials. Recently, I had surgery and had blood clots move into my lungs so I'll even have more blood test now. I have found that the people who draw your blood especially for MRIs , CT and PET scans may not be as skilled as a person who works in a hospital lab or your oncologist's office.
I now tell a new person that my veins are very difficult. I pass on some hints I've learned like using a butterfly needle or pediatric needle. I ask them to bring in their top person, the one who is the trouble shooter first, before I have two or three people poke around and scar my veins more.
I'm cheerful and try to appear helpful as I offer this information about my body. I'm learning to be more assertive... not aggressive. It has really seemed to help. I thought they wouldn't be able to use my arm any more, but they have been able to draw my blood lately.
My regular doctor has a lab tech that always is successful so I request her now. She loves the compliment.
I hope others will have ideas on this topic too. It is helpful to hear your tips.
Hope you all have a good week.
Sadie
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Sadie,
I hope all's well with you and those clots go away. I haven't had surgery yet (I'm almost half way through chemo) and all the lab assistants complain about my small veins. They have used the butterfly and the pediatric ones that Sadie was talking about. I can't wait to see what happens after surgery!
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Thanks Sadie,
I have also had the butterfly and pediatric needles used. The veins are so bad from my previous chemo. You are very correct in saying that the technicians that run the scans are not as skilled as the techs in the blood labs. Before my bilateral, I would let the scan techs poke around and believe me, sometimes it took more than 4 people. Good thing I'm not needle shy. Now, I can't afford to let them poke. My concern is the LE risk.
Sharon
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triple neg here- i was stage 3 and did 4 AC and 4T its been 1 1/2 yrs
when they did my mast after my chemo tx there was no sign of any cancer
stay positive!
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Hi gals, I have been around so long, I have moss on my feet!
9 YEARS NED, TRIPLE NEGATIVE!
SO DUMB BACK THEN. I THOUGHT Tiple Negative WAS A GOOD THING!
Hugs, Shirlann -
This thread gives me hope...I found out yesterday and the sun went out ...I am waiting for the cloud to pass....and then let battle commence...
I see my oncologist for the first time a week on Weds....
I was diagnosed with cancer 7 weeks ago and these past 2 days I have been fed up to the hilt....
love xxx
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Sueps,
I have such high hopes for you. I am four years out from diagnosis and the field has so much more information about triple negative breast cancer now.
Ask lots of questions at your visit and if you intuition tells you something feels funny, get another opinion. I did and it made all the difference in my treatment.
If you can, take someone with you to the appointment so they can take notes for you. Sometimes when emotions are high, it can be hard to take in so much information.
Please keep writing on this site. The women here have lots of information and the support is wonderful.
Warmly,
Sadie
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thank you sadie-rose for your comments. My new husband has been a god send in so many ways. He goes with me and takes all the notes and has our list of questions. It really does help to have someone there with you.
Silly me never put it together that I was a triple negative until coming here. I have had one chemo treatment and the second on 11/09. I am anxious to see if this stuff is getting to the cancer or not.
HI sueps! I hope you are having a better day. It is tough and I know how you feel. take care and keep in touch.
Thanks to all you help us newly dx.
Penny
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