Calling all TNs
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thank you Ladies. I just plan to be around lots of family and friends this holiday
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TN sisters, I just got my MRI back.... and there was no evidence of live cancer! One lymph node that used to be enormous (3cm+) is still enlarged (though smaller by half) but the imaging did not show anything 'live' .... my surgeon said it can be scar tissue that prevents it returning to normal size.
I am so so so so relieved to have this amazing response to chemo. I know pathology is the final word but it is so encouraging not to see the lit up stuff we saw before. YAY!
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Im so happy for you, celebrations are much deserved...God bless..
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Thank you urdrago! I am very grateful.
Has anyone here gotten Proton rads? Curious....
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That's great news, Santabarbarian... congratulations!!!
Vickki
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Santabarbarian,
I am so very happy for you!!
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Fantastic, Santabarbarian!
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Congrats to those finishing chemo, that is a Huge part of the battle. It will take some time to get back your strength, and hair, but it will come. I have been using Lash Boost, by Rodan +Fields and I really think it works. My lashes were never this long before. I use it on my brows too. Pricey, but one tube lasts about 6 months or so.
Yesterday was three years since my first surgery. My MO counts that as the start of my clock. I still,think about cancer on a daily basis, but I worry less.
Cccmc2, I had pains for about 2 1/2 years until I got my lymphedema under control. I still have one occasionally, but they don’t last. Hang in there.
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LoveMyVizsla, Congratulations on the three-year milestone!
Lyn
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LoveMyVizsla, Congrats. Im still struggling with when my start date should be. lol
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I think it's a little strange that there's no general agreement on what your "start date" should be for calculating some magical date when you can consider yourself safe. Or at least, sort of safe. As if there's ever going to be a time when I feel safe from this monster! But, if there's some choice here, I'm going to try to convince my MO that my start date should be five years ago!
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Thanks everyone. And bravo to you LoveMyVisla. Re cancerversaries, I say, pick a day you can remember!
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Hello all! Just another "old-timer" checking in. I am 8+ years from diagnosis and doing well! Keep your chins up- it does get better. There still isn't a day that goes by that I don't think about cancer (the reminder is there everyday when I see one fake boob in the shower!), but the tremendous fear is slowly subsiding and now I don't panic at every ache and pain (I am 53 after all!). Best wishes to all of you starting this crappy trip and congrats to those who are past the treatment phase!
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thank you for your update, TifJ! Always great to hear success stories!
Congrats Santabarbarian! Awesome news on the mri results!
Cccmc2, I find the whole bc experience to be quite a roller coaster. Just when I think I’m on a smooth path forward, something causes me to start feeling uncertain again.
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question for you folks. I’ve been reading up on some of the news stories from the San Antonio Symposium. Do you know if your triple negative is basal cell like or not?
The article was talking about TN Xeloda trial results and they were different in the non basal cell subgroup. I have no idea what my status is. I’m wondering if I’ve missed something in my conversations with my MO
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Flynn, my understanding is most TN is basal like. So that news on Xeloda wasn't great.
I am going to get a copy of my original path report from biopsy. I know it's not on my path report for BMX. That lab didn't even do a RBC score
I still don't regret taking xeloda. It just seemed it didn't provide larger difference in numbers but still close to 3% improvement and that's 3 more women out 100 alive.
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The subtypes are kind of mysterious.
I asked my MO what subtyype I was, and he said he had no idea. There is a way to type them, but you have to analyze a bunch of different kinds of markers and depending which ones your cancer has, it will fall into a loose pattern.... that corresponds with a type. I think it's about 10-12 different things they look at, and none of them are typical to test for. Unless you look at all these markers and see where your markers cluster, you do not know.
For example, my cancer was strongly AR+ (androgen receptor) -- 90%. So, I assumed I must be "Luminal AR" type. But my doc said that you can be AR+ and NOT Luminal AR type.
BRCA-mutated TNBC is generally basal-type and high grade. Most Luminal AR is lower grade. Mine was grade 3. My Onc gave me Taxotere and Carboplatin which is generally good against basal type TNBC, I guess because of my high grade (I did not have BRCA mutations). There was no certainty; it was a guess, and he told me if my tumor progressed or did not respond inside the first 3 treatments, he would switch me to a different chemo.
I guess mine must have been basal, after all, because it responded well. I think the majority of TNBCs ARE basal like so that's why his first guess went that direction.
There so much room for progress re fine-tuning the diagnosis of TNBC at the beginning, but first they probably need to figure out other chemos that work better for the non-basal cancers. I think that has not happened so far, and that's why they do not bother testing for your subtype right up front.
Here's an article about how they classify them....
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I've seen the pathology reports for my core needle biopsy and both lumpectomies. (DCIS was found in the margins during the first surgery.) None of them addressed the basal or androgen status. My surgeon, too, said that most triple negative cancer is basal; however, I'm one of those people who likes to know as much as possible about my case.
Lyn
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Fynn and Jennifer522. -I didnt k know there was an article on the Xeloda treatment for us TNBC's . And 8 percent is the reduction in risk or response to the treatment?
I should be starting Xeloda in Jan. But maybe I should just pass and see which arm of the Keytruda trial I get.
Any info wld be great..
Sending good Vibes.
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ok, thanks for responses. I’m also not regretting Xeloda b/c it’s been a pretty easy go, so far, but I am disappointed by the results that I’ve been fixating on since this am. I told my dh that if nothing else, I’ve done everything offered to me. I’ve gone over all path reports and see nothing about basal cell or not. I was stage 3, non BRCA but have a sister who was diagnosed 3 years before me. I have no idea what I was and I’m not sure that I can find out now. The cancer world is changing so fast just from early 2017 that now apparently TN’s should ask to be evaluated for basal/non basal. I’m at Vanderbilt, currently, and my MO who worked on early break through AR studies and doesn’t feel like my course of action would have changed depending on that (also not done, apparently)
My cardiologist told me someday we won’t be triple negative, we’ll have a new name for whatever we turn out to be positive for. I like that idea but I’m having a downhill slide this evening.
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Flynn,
If you had a biopsy they likely still have tissue they could test. However, it might have morphed since 2017.
My naturopathic doctor had lab that did a blood test that separated the shed cancer cells out of my blood. I think "liquid biopsy" is a name for it. They can culture the cells and test them against chemo drugs or nutritional supplements for what is effective.
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Urdrago71- sorry I missed your post last night! Following is a link to one of the articles. There was a slight improvement in most patients but one subgroup did get a nice impact. The articles I saw did not mention dosage and I recall the big Japanese study was at a higher dosage than most women here are able to tolerate. I’m wondering how big of role that plays. I have to look for the actual study and see what I can find.
https://www.medpagetoday.com/meetingcoverage/sabcs...
Santabarbarian- since I’ve participated in a clinical trial and moved and changed medical provider, a few samples of my biopsy have already been pulled. Perhaps they have more than I realize. I was also thinking that ideally we would check the residual found after surgery but that is described as cookie crumbs vs one mass. I’ve heard the term liquid biopsy but don’t know much about it. I plan to discuss all this in detail with my MO in Jan. I stepped back from my computer today and I’m feeling more even keeled.
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Flynn, I'm going to send a message to my surgical team and ask the question about basal or non. I just had surgery in October re-read the report and nothing on there. So why not ask. The link you sh is red is very informational and it sucks they don't have the funds to start investigating further in depth.
Sending good vibes..
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Flynn, I looked up the second opinion I received from my cancer center on my original biopsies, because I remark it saying something about basal-type.
Here is what it said, in part: additional immunostains performed on the biopsy demonstrating the following immunophenotype: OSCAR, GCDFP-15, GATA-3, CK5/6, p53 positive; mammaglobin and p63 negative. These IHC findings support the diagnosis of a breast primary. The neoplasm has variable expression of CK5/6 and over expresses p53; together with the high Nottingham grade, these findings suggest basal-like ductalcarcinoma.
Don't know what all of that means, but there it is.
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Hellos, heres another study phase 1 that some places are getting.
Oxford BioTherapeutics Receives US FDA IND Clearance for OBT076
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Thanks for that urdrago!
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I’m in a weird catch-22 right now. My initial report came back er-, pr,slightly +, her2 -. When we tried to get an Oncotype done, it “failed” and the dr led me to believe that meant I was for all intents and purposes TN. However when I just read my add ended path report, it just said it failed due to ER -. Well duh, already knew that! So now when I go to my next appointment I need that clarified as well as I want to ask about basal status after reading this thread!
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Hi Mncteach, and welcome to our community.
Yes, it does sound as though you'll need some clarification in order to best help you make treatment decisions that suit your situation. Please keep us posted and obtain a second medical opinion if you feel it necessary.
We are thinking of you,
The Mods
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Hello everyone,
I just wanted to wish all of you on the TNs a Happy Christmas and a very Healthy, Happy New Year.
Sending my best wishes to all of you going through treatment and telling you that you can get through this journey. I am now 13 1/2 years out since diagnosis. Keep looking forward.
Love.
Sylvia xxxx
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Hello all,
Merry Christmas! As of the 26th I will be 6 years out Cancer Free!! Just had PET scan on the 20th. NEDS!! Spending holidays with my daughter & her family. May all your holidays be Happy!! If anyone has doubts that this can be done, see my story. Odds were not in my favor. I’m still here.
Love to all,
Marsha
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