Calling all TNs
Comments
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CS - I'm with Mags, I think it just means it went to the nodes. Someone will no for certain post an answer for you soon,
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I hate reading my path report - I had it out today to send to the University of Washington research team - there is a clinical trial there- "Genomic Analysis of Inherited Breast Cancer Among Women Diagnosed with Triple-Negative Disease or with Diagnosis at Age 40 or Younger." Cocker Spaniel, One reason I am doing this particular study- "Our study includes complete screening of all breast cancer genes, including BRCA1 and BRCA2 and approximately 20 other genes..." is that apparently you get the results six months later - for free. However, you have to have been tested for the BRCA gene first but can be positive or negative (I was negative for both.) I want my daughter to have these results in case it is important for her in the future (she is 35.)
My path report reads "metastatic carcinoma in 2 of 16 lymph nodes..." - but the AJCC stage on it reads "IIA-ypT1c, N1, Mx, G3." That means Stage 2A, the "y" means post neoadjuvant chemo, the tumor size is now 1c, the nodes stage is N1, and Mx means distant metatasis unknown status. G3 is grade 3. So they use the term metastatic in reference to the lymph nodes not distant metastasis. If I had had proven distant metastasis I could not have gotten into the clinical trial I just finished because that was one of the exclusions. Hope that makes you feel better. I think it is confusing how they use the term; I guess I need to look up the definition of "metastasis" because it is probably different from what I think. .
I hope it is okay to put a link here to the TNBCfoundation website, but that is where I found out about this trial.
http://forum.tnbcfoundation.org/corrected-most-important-thread_topic9642.html. All I had to do was fax my pathology report and my BRCA test results. Now I have to fill out a consent and family history and then submit a blood sample.
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Cocer Spaniel: Get the BRCA genetic test. Sounds as though you have some type of genetic thing going on. It doesn't have to be a death sentence, although it sure feels like it at the time. One of my two daughters tested positive for BRCA2. She already has a ventricular septel defect (hole in the heart). It is so hard at her young age of 20 to have to think about when she is going to have bilateral mx, but I tell you this much, at least we have a heads up about it. Genetic predispositions have been around forever. Now, knowing that she has it ahead of time, we can fight this beast before it has a chance to bite. I'm glad we now know, even if it is hard for her. I don't think I could live if something happened to one of my kids and I found out it was "my" fault, but I've also learned it's not "my" fault... it is what it is... no one's fault... and maybe there are positives to being BRCA that they are still finding out about. We all have something genetically incorrect, but most of us will never know what it is because we simply aren't that scietifically advanced yet.
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Is there any other TNBC that developed leukemia after chemo and radiation out there?
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Is there any other TNBC that developed leukemia after chemo and radiation out there?
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Cocker spaniel- I remember a year ago November, when the told me 5-6 weeks without surgery and more chemo but 3-4 months even with chemo, I had those same thought. Why do more chemo, I almost didn't because I felt like you, why not feel good until the end. Well I'm sure glad I've done all the chemos I've done because I'm still here. The way I look at it is I've beat the odds and when I go I will know I've done all that I could to try and beat this. When I complain about my pain I try and remember how bad it was about 7-8 weeks ago, that was as close to death as I've ever come and even though the pain is again getting worse by the day it still (knock on wood) isn't as bad as then. Ive really had some great times this last year again so glad I did more chemo.
I had a great time tonight, wish we were all there together. My friends are real sweet and understand when I get tired they are very accommodating I never have to call "shot gun". LOL -
Ladies once again you have made me feel better. I am going through the BRAC test, I had a letter about it the other day. So maybe that will shed some light for me.
Thank you all for the info about the metastatis. I feel a lot better and will talk to my oncologist on the 2nd March. I am not sure is the PET scan you talk about is the same as the CT which I am going to have on Tuesday which will show, chest, tummy and pelvis.
I have two daughters. My eldest girl we adopted (hate that word cause she is mine! and I adore her). But my diagnosis will not affect her only my youngest girl who I gave birth to.
Everyone of you has helped to make me feel a lot better so thank you all.
Laurajane - thank you for sharing the worst time of your life but I am so glad you pulled through. I hope you enjoy your evening.
Paintingmyway thru - your painting of the Kiwi was gorgeous. One of my daughters and I make cakes and decorate them. I don't know how to get a picture of one on here but it is a good distraction from all of this.
To get through the day I went and cleaned all the windows but only felt worn out, not better, cause I got a lot of windows.
They say laughter is the best medicine so I thought I would share this with you. My daughter sent it to me.
Inner Peace.
I'm passing this on because it worked for me today.
A Dr on TV said to have inner peace we should always finish things we have started and we could all use more calm in our lives.
I looked around my house to find things I'd started and hadn't finished. So I finished off a bottle of Merlot, a bottle of chardonnay, a bodle of wum, tha mainder of valiuminum prscrptuns, and a box o chocletz.
Yu haf no idr how fablus I feel rite now.
Sned this to all who need inner piss and telum u luvum.
Hope you fabulous ladies get as much laughter out of this as I did. Annie
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Cc-is a hole in the heart related to brca? I was born with that and had heart surgery when i was 4!
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Niciopp-do u have leukemia? I have heard that some chemos can cause it.
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A hole in the heart can be genetic. It can also be operated on to correct the problem. Have you asked your GP what can be done about it. I hope you get some answers. Annie
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Niciop:
I know I was told and read on the forms I had to sign prior to chemo that Leukemia is a rare but, unfortunately, a possible side effect, of chemo. I had AC & T. She did tell me that if it happens, it is something that occurs years after chemo. I do not think it is related to radiation as a side effect, just the chemo, as my radiologist never discussed, whereas my onc definitely did bring it to my attention. I have been on several BC boards since my diagnose, and have never read of one case such as yours, so it must be a rare side effect. May I ask how far out from treatment you were when this was diagnosed?
I wish you all the best and am so very sorry that you are faced with this on top of bc.
Linda
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Cocker_Spaniel - Yes Mags is correct. Your doc called it metastatic only because it had gone to the lymph nodes, not because it has traveled anywhere else in the body. That can be known only through a petscan which they should definitely order for you. Chemo is the best drug for TN's and for aggressive tumors. Please find out when you are getting a petscan. Waiting for that result is very difficult because it is then that I feared the result of mets. Butyou should relax now, as this means only that the cancer had mets into the lymph nodes.
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Niciopp-do, I was told by my Onco. that 1 in 1000 get leukemia from the chemo. I did AC and Taxol (not taxotere). Do you know someone or is it you who has been diagnosed with leukemia. I am so sorry. I think about this often as it has been my worst nightmare. 1 in 1000 is not that far fetched.
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Than you for all of the hope and love -- anyone know abou Stge 4 mets to the liver?
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Popping up to wave hello to everyone! MBJ, it is so good to "see" you, even though I am so very sorry about your recurrence.
Even though I do have mets to the liver, they are not really giving me any problems. It is my lungs that are the issue. I know the liver is a very resilient organ and can function even under the direst of circumstances. I also know there are varied treatments - regular chemo, chemo straight to the organ, radiation, and in very rare circumstances resection. I just know, don't read the stats on the Internet, they are very outdated! The women on the Stage IV board can offer you so much more hope.
I've officially started Hospice, and the nurses are just wonderful. I have my hospital bed set up, an aide every other day to help me get cleaned up, and plenty of morphine lol. I won't be doing any more chemo - my goal is to be as comfortable and pain free as possible so that I can enjoy my family.
My kids are holding up very well, they are resilient as kids are. My best moments these days are cuddling in bed with them, watching cooking shows.
Hope everyone is well. I'll try and say hi when I'm feeling up to it
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MBJ- You may want to PM Coolbreeze. She is stage IV with liver mets and had a liver resection and is currently NED. She did have some complications after surgery, but is getting better. She may be able to give you some answers. She also has a blog butdoctorihatepink.com.
Suze- Good to "see" you! I am happy the hospice staff is wonderful and making you comfortable. I hope each day holds a special memory for you and your family. Thanks for keeping us "in the loop"! Love and hugs!
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Hi Susan. Glad to here that you are comfortable and well taken care of. So good to hear your children are holding up too. Big hugs to you and your kids. xx
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Hi sweet Suze,
Great to hear from you. I'm also glad your kids are holding up. How about you? I'm thinking about you every day. I have become addicted to the cooking shows too! Thank you for taking the time to stop by. Wishing you comfort.
Laura -
Hi Susan! Glad you stopped in to say hello and I'm glad you are happy with the care you are receiving. Sending you love and support to you and your family.
MBJ, Tif has great advice - I think Coolbreeze would have good information for you, too. I have read several of her posts and she is very knowledgeable.
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Ah Susan. Cuddles and cooking shows. It sounds just wonderful. Love to you and your family!
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Susan:
So good to hear from you. Cuddling with the kiddies - doesn't get any better than that! Thinking of you as always, and sending love and gentle hugs,
Linda
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Nothing better than cuddling with the kids...
Here's a big "cuddle" to you Suze..
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Hi susan. Glad you signed on....and so glad to hear your children are doing well. They are amazing aren't they!
Worrying some today about pains in my breast and back but I think they are more aches than deep pains,,,gosh I hate this gift that keeps on giving.
Laura so nice you had a girls night last night.
I really want to talk with my md about Metaformin..any advice on what articles to use...
Cake making...yummy... -
Thinking of all! Suze-glad you stopped by with an update. Your children sound absolutely adorable, strong and smart.
MBJ-Hope you fine the info you are looking for regarding liver mets. Are you still in the hospital?
Painting-Hope you are just sore from over doing it!
CC-I did have the surgery when I was 4, everything heart related has been fine since, but some docs can hear a slight murmer. I didn't realize it coud be genetic, but I never really thought about it.
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Speaking of cake, I am up to my eyeballs in it. I bake and decorate cakes. Today I am making a stacked cake with double 16" and 12" layers as well as 120 cupcakes for a company's anniversary party tomorrow evening. After I do these big events, I don't even want to see cake for a long while!!
The kids are anxious for the first cake to come out of the oven. I level off the top of the cake and the kids (and me too) get to eat warm cake!!
Happy Sunday all!!
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Sorry a bit tired--will try to rememember who posted.
Home with hosperus starting Monday (same as hospice)
SUZE: I so love the cooking shows, that you are in good hands and are well loved. Wish we could have all met. I can't have chemo until I feel better.
Crossing my fingers that walking is in in the near the near future and that I regain use of my arm so so I can talk more.
Big hugs to all.
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MBJ - my fingers are crossed for walking and talking in the near future for you, too.
Suze - so glad to hear from you. I also love cooking shows..and snuggling with my girl and doggy!
Speaking of cooking....TifJ your cake decorating inspired me but I'm a bit embarrased to say I'm on my way out the door now to buy a cake (wish you lived nearby). It's my niece's birthday party tonight and I was "voluntold" to bring a cake for the family get together. I got back late last night from a girls weekend with my DD, my GF and her DD and am too tired to bake anything today but I must get groceries.
Take care everyone and enjoy the Oscars tonight!
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About the Metformin thing..I want to take it NOW..I don't want to wait..dang it...I just feel that if there is somehing out there that can help US..let us have at it...
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Sugar- it's okay to "cheat" and buy a cake once in a while!
Suze- I am a cooking show junkie too! My kids likes to watch with me and help in the kitchen.
Titan- why are our doctors denying us something that may really work! Shouldn't we at least be able to try it? Sometimes doctors just suck!!
MBJ-wishing you strength and sending healing vibes!!
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MBJ - It is so nice to start getting posts from you. I am sorry I don't know much about mets to the liver but I will try researching and reading up and will let you know what I find. I know that is where you need the most help from people, information.
Suze - I am certain that you will feel better soon in order to start chemo again. I know you are doing the right thing right now. Sometimes doctors forget that our body needs healing after treatments and that is exactly what you are giving to it right now. Healing can come from Love and Inspiration and Prayers. Cuddle with your beautiful children and they will give you the strength.
Love, love, love and lots of love to both of you inspirational women! God Bless you both.
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