Calling all TNs
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hi cathy
Upon my dx of TN I started to read and read and read, too much. I try really hard to not read, now. If you are reading of women survivng many years with TN mets, then I am very happy to hear that, and hope progress is being made. I didn't mean to sound like a "downer." My docs check me every 3 to 6 months, and I pray every day to not have new symptoms, and try hard to "live in the moment." My docs do not do scans unless I have symptoms for at least 2 weeks, and that's fine with me. I struggle with anxiety, and false positives would send me to Crazy Town. I wish we could all feel and be Healthy from here on!
Hugs
Arlene
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Arlene, I spoke this weekend with a TN survivor participating in the Avon Walk. 6 year survivor, TN and I've read of many more with mets. Keep your chin up and stop reading those negative articles. If that's what you read, that's what you will think. So much good, positive research to read about, or better yet don't. Go garden its amazingly therapeutic. I hope you all have a fantastic week ahead. 😁
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I personally know many (more than 15) TN's that are 3 to 15 yeas from dx with mets. I'm a 24 year survivor of another breast cancer, and the statistics were terrible. Yet here I and so many from my support group, some who later progressed to mets are still here.
The internet and research? For me, lots of it is old and who are their base studies? IF you look hard enough you will find things to scare you to death. Plus here on BCO if you go to the TN stage IV forum so many are years out with mets.
. I go to a NCI cancer institute and even they say 5 years is now becoming the norm for those with TN and mets.
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And those statistics are based on worldwide where there are many that don't have the best care available, are already sickly when treated, much, much older, etc etc etc. For every percentage one way there is an opposite. I'm taking the surviving percentage. 👍👍
So my funny for today, I'm looking through an Avon catalog and stop at haircare deals, then whoops remember, Ummmm no hair. I'm cured if I can forget I don't have hair right? 😂
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http://scienmag.com/asco-finally-targeted-therapie...
Just saw this on FB. Don't know of its been posted here.
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Just an update:) I had an ultrasound today and the tumor has moved enough away from my chest wall that the Radiologist said my surgeon can get clear margins with surgery. Yippeee!!! Made my day. The tumor has shrunk to about 1.5 cm from original 3.2. I have 4 more Taxol chemos before surgery so I really hope it shrinks way down to the mm arena and a possible 1 status. I won't know now until surgery July 11th and the path report after. Keeping my fingers crossed. I think it will be close.
Thanks for all of your support.
Janice
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Milwmama thank you for that link! Very encouraging! Triplegirl...GREAT NEWS!!!
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Triplegirl, great news. Keep us posted
Milwmama thanks for the link.
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Hi everyone. Im newly diagnosed IDC triple negative from my core biopsy. Just found out yesterday. I see oncology tomorrow and surgeon on Thursday and radiation oncology next week. I'm doing pretty good...though getting nervous about chemo and everything that is going to be happening to my body. Any words of wisdom yall can share would be greatly appreciated!
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Janice, I'm so happy to hear your good update!!
Yodez, I'm sorry you have to be here but this is a great place with so many caring women and a couple of great men too! Just take one thing and one day at a time. You have a lot to process right now but thing's will settle down once you get your treatment plan. Make a list of questions for your appointments and write things down as they tell you as well. Chemo isn't fun but it's very doable for most folks. Chin up! We are here for you and will do what we can to help you through this. Hang in there! (((((HUGS))))
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Ditto what Luvie said!
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Yodez, beware reading about triple negative, lots of depressing and scary stuff. Its a malicious evil parasitic thing from the pit of hell itself, but We CAN FIGHT IT. my oncologist says its very sensative to taxol. ask lots of questions and focus on the good fight. Trust in Jesus, call in your friends and family for support, and if you don;t personally know anyone who's survivor with same diagnosis, get hooked up either here or through your local American Caner society chapter. I have church friend who's triple negative and 15 years out from her chemo & surgery & rads finished. She's doing great! The encouragement from her fills a niche, and lots of others can cover other needs and bless you! I agree, be good to yourself. I am sorry you are here too, but we are all rooting for you and I am praying for all of us.!
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yodez welcome and you will find a great group of supportive tn ladies here. Best advice take it one day at a time. Once you know your treatment plan and find out if you are doing chemo before or after surgery then I would suggest joining a chemo group for the month you start.
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Today is my last day of chemo!!! Still have surgery and rads to go, but I'm so happy to be almost done with this step!!! It's been tough, but worth it, my 4.5cmx4cm tumor is barely palpable and we are hoping that is scar tissue/dead tumor. On to surgery on July 12.
Can't thank you all enough for the positivity and help here!!
~Kelly
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congrats lifealoft! Hope the last infusion goes easy.
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Milwmama, - thanks for sharing that link!
Wonderful news Janice!
Welcome yodez!
Lifealoft, - so good to be done with chemo now!!
Hugs to all here
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kelly, celebrating with you!
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Lifealoft/Kelly : you go girl, only one more. So glad to here of the great response to chemo. Blessings on your surgery & radation.
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thank you everyone for the words of encouragement. Oncology dr says we have to move fast as my ki-67 is 95%. Anyone else seen or had a ki that high? It looks like surgery first then radiation and chemo. They also ordered CT chest/abd/pelvis, PET scan and genetic testing. I see the surgeon tomorrow and will hopefully know more at that point.
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Thank you all! I'm officially DONE!! My counts were a little low and I was worried for a few minutes that they were going to delay me, I would have been so bummed! Now just to get through this round of side effects 😝
Yodez75, best wishes to you! I don't think I was ever told my ki-67. It was almost a month for me between diagnosis and treatment between getting a second opinion, echocardiogram, CT, bone scan, port, etc. You will feel much better when all that is behind you and you get things started.
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LifeAloft...CONGRATULATIONS‼️
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yodez: yes my Ki-65 was almost that high too, don't read about it too much, will supermega freak you out. I was scheduled for surgery about 2 weeks after diagnosis. Had lumpectomy/partial mx with clear margins!! (yay) and only 1/12 lymph nodes positive. Axillary dissection was by far the worst of it. Surgery was 8 weeks ago, just did round 3 of 12 weekly taxol. Will follow with 2 months A/C then 6 weeks of radiation. I get a CAT scan next week to be sure there arn't any yucky growing things in my liver, but thankfully my tumor markers are normal. I feel really blessed, although this process sucks and is a major bummer!! You will get thru this fight, we are all here pulling for you. blessings, A
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yodez75...as others have written, once the beginning testing process is over and your treatment begins you will feel less anxious. All doctors have different beliefs. Mine doesn't pay attention to Ki-67 or statistics. He will never discuss with me. He believes every woman is individual, NOT A NUMBER. He continually tells me that every week he sees patients who had TN with big tumors and lymph node involvement who are 20,15, 10 years out from initial diagnosis. This is very encouraging news and exactly whyI chose this particular doctor. He is always calm and encouraging. No doom and gloom. I wish you good luck in this journey. It's not fun, but we are all here for you.
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Lifealoft congratulations!!!! What a wonderful feeling.
Yodez75 my Ki67 was 89% & tumor was almost 5 cm so my oncologist recommended chemo first to shrink then surgery. It sounds like your team has a good plan in place for you. Please keep us posted as your treatments start. We are here for you.
Meadow I keep meaning to tell you how much I love your new picture. You look wonderful. Full of life & love.
Xoxo & prayersto all going through treatment.
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Hi to all of you.
Has any of you seen this article.. dont understand why it is not in the news?
http://news.berkeley.edu/2016/05/12/triple-negativ...
I will be asking my MO about this and see what he says.
if that's the case, this is great news for all of us!
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This also came out today, many hopeful possibilities!! Dr. Merajver is brilliant and so dedicated to her work.
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SA8PG, Thanks for noticing, and for the sweet compliment! I feel good, life is good. Hugs to you!
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Thank you all for the congrats!!!
And how exciting to see all the research going on for us!!
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Congrats on finishing chemo. You are almost identical to me. I finish chemo in 3 weeks with surgery scheduled for July 11th. We'll have to keep in touch. Good luck to you. Keep the faith:)
Janice
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Thanks Madison! It's so hopeful when they have new drugs and approaches to what we are all going through. Best wishes on your reconstruction. Here's to new boobies.:)
Janice
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