Calling all TNs
Comments
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I've just been diagnosed with the Triple Negative breast cancer. Am I in the right group? I'm awaiting a treatment plan. I'm not loving the things I'm reading about survival, but I know better than to go there right away.
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missourimom, yes you are in the right group. welcome, sorry you have to be here, but you are in the best place for support.
val
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missourimom, i found this place amazingly supportive and helpful as I went thru my treatments. Theres different topics as well that will be supportive as you journey thru the treatment plan. We all are uniquely different and alike. Ask anyone for information blog or send a private message.
Sending you peaceful vibes and cyber hugs.
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Welcome to our group missourimom... sorry you have to join us, but glad we can offer support. There will be many questions and someone usually has the answer!
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In addition to our TN group, you might also check out the threads for groups of those going through chemo or surgery. They can answer a lot of questions and provide support as well. It's a lot to digest... but the more you understand the more you can be a good advocate for yourself.
Wishing you the best!
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I have been looking into proton radiation. I have Obamacare/ Blue shield in California - gold plan. So far, based on having a TNBC diagnosis as well as a left sided cancer, I AM able to get coverage at an out of state proton center, and they will not charge a larger copay than the copay "max out of pocket" for my plan (which I will meet no matter what). Of course, a month in a different town isn't free but the coverage level surprised me.
In case any other TNBC sisters have an interest in proton rads, thought I should mention this.
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Missourimom,
Sorry you have to be here, but it is a great place to get information on all kinds of topics. Check out many of the different forums as the info can be interesting. Fill out your diagnosis information in your signature if you are comfortable with that. It helps people to see if theyare going through a similar situation.
I was totally surprised by my initial diagnosis. And it kept going from bad to worse with each test. I am going to remain positive and focus on the fact that several people have lived long, happy lives with my diagnosis. Do not Google too much. It can be dangerous!
Take care!
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Welcome MissouriMom. Sorry you have to be here, but this blog is a great comfort and my security blanket. Such great strong women. I’m in Kansas City treated by University of Kansas. Are you on the west side of Mussouri
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Hello Everyone,
Five year survivor checking in.
edited to added: 6.5 years from diagnosis I realize. Chemo brain is real.
Keep moving.
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QeenKong - congrats & thanks for checking in! Keep on staying healthy!
I spent a chunk of last week on the phone re-arranging my follow up appointments now that I have my school schedule sorted out & that kind of ratcheted up stress, just having to think about this all again.I have a diagnostic mammo on Feb 21, oncologist on Mar 14, and endocrinologist (to discuss chemo induced osteoporosis tx though my GP has already started me on Prolia) on April 15. Plus bloodwork etc. It just struck me that cancer is still taking energy and space in my mind, plus sucking up actual time, and making me do something about it each month.
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Thanks, Val!
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Hello, thanks for writing. I am in South Kansas City and my hosptial and doctors are all associated with KU, too!
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Thanks for the encouragement. You hang in there, too!
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Thank you for welcoming me!
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Thank you for welcoming me!
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Welcome Missourimom, - and ditto to all the previous responses you received! This board is the BEST place for those of us on this 'journey'. I'd rather we be sharing a trip to Hawaii or the like, - but I am forever grateful to have you all along this journey, too!!
QueenKong, - Thanks for your wonderful update! Keep them coming!
Big storms predicted in many parts of the country for the next couple of days. Stay safe and stay warm everyone!!
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KU is awesome. I’m so blessed to have them
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congrats, volleyballmom!
Also congrats to queenkong!! Always good to hear from those further along on this journey!
Welcome Missourimom. I’m sorry you’re here but happy to help in any way.
Moth, I hear you. Life certainly is still complicated post treatment. I’m doing well and yet I feel like I pour so much energy into managing my health.
Take care & stay warm, to all my fellow TN’s!
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Hello Lovely Ladies. I am an OLD timer from this thread. It breaks my heart to see so many new members. I hope my post will give you some encouragement.
I was diagnosed in 2011 and had a rapid re-occurence (sorry SP) in my lymph nodes in 2012. At the time they gave me 2 1/2 to 3 years. There were some factors that were discovered after that estimation. First they admitted that the diseased lymph node was probably there at original diagnosis and missed. (Apparently Sentinel node biopsy isn't fool proof). Second, I convinced my new oncologist to AR test my tumor. (Testing was fairly new at that time, but I had a sneaking suspicion because I had been on testosterone replacement before CA raised it's ugly head). I was 99% AR+. (Waves Hi to Santabarbarian. Thank you for that interesting link to tumor types.). I have great fun telling people I basically have Prostate cancer. (I have a PSA test every 3 months) It makes me laugh that God apparently has a sense of humor. I take this AR+++ status as proof that my big balls decided to bite me in the ass!
This March will be five years since the end of my last round of chemo and radiation. I'm still here and many of you lovely ladies will have many good years ahead of you! I don't fool myself, I know that it may rear it's ugly head again, but I've survived for 8 years. Have hope lovely ladies!
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kathyrnn, so good to hear from you and know of your success! BTW I was 90% AR+ so I am interested in perhaps following up on that in terms of prevention. You really get PSA? That's cool. I wonder if i should ask for one for baseline in case I should want to monitor that in terms of recurrence?
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My doctor is using the PSA as a possible cancer marker for this type of cancer. It must not be unheard of because my insurance company is paying for it. I have no good info on any preventive measures. Biclutamide and Enzalutamide have shown positive results but you can't get prescribed or covered because it's considered experimental. My doctor said she would fight for it if I my cancer recurs. It's very frustrating. Possible drugs exist that could stop metastasis, but you can't get them till metastasis occurs. Rock, meet hard case. I guess I'll just have too outlive the damn clinical trials.
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Im confused, is this PSA testing something all TNBC shld do or just if AR+ ? And how do we know if we are AR+?
Sorry trying to play catch up..
Cyber hugs
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urdrago, Just the AR+ people would (potentially) need to do this. AR is a 4th receptor that can be tested-for after ER, PR & HER2. Optional to test for it. My doc did it.
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Just had my 1st taxol treatment. No nausea thank God. Just feel tired and no tastebuds still. Will see how it goes with more chemicals in my system.
Decided to track my journey. Im new to instagram. "hope.creativitee"
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HopeBry - great you are hanging in there!
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congrats on 5 years, Kathyrnn!! Thanks for checking in! I haven’t been tested for AR because my MO indicated that results wouldn’t change current plan of treatment (Xeloda). I’m still mulling if it’s something that I want to argue about.
Hopebry, glad you decided to give Taxol a try! I hope you find any SE’s tolerable. Yay for no nausea!!
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Hi all, I haven’t checked in much lately but I just want to jump in for clarification for any newbies. Besides ER, PR, HER2 and AR there is also PDL1.
I was seen by a well respected teaching Onc who told me I should do everything I could to hit the ground running in case I progress to mets. That is why I pushed for testing. It’s true that it didn’t change the course of action right now, but I am ready to make some pretty quick calls if I do get mets. Keep in mind everyone was very worried about my case as my cancer had no reaction to chemo. I suppose that those that have good success with chemo could ignore that advice.
I’m glad to hear that so many of us are doing well. I am eagerly looking forward to my 2 year anniversary in June.
Hugs,
Rebekah
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Rebekah you and I think the same way. I wanted to be ready -- and then be thrilled if I do not need the info after all. I think that TNBC is so heterogeneous it is important to have a sense of what you might respond to if needed as a 3rd line. It might indicate hitting a clinical trial or an off label drug, if you know all of your receptor statuses.
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I just got the response back from my doc. And nope I wasn't tested for AR or PD-L1 so I asked if there's still a way to do testing. Ugh, bothers me that nationally theres a struggle for cure and new test come out yet we dont gather data..
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I feel so lost to a lot of these terms. Maybe I should brush up on my knowledge. I’ve just been cruising along trying not to think of cancer and doing pretty well! I have my first post chemo Mammo in March. Hope everyone is doing well❤️
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