Calling all TNs

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited November 2018

    Hello SA8PG,

    Thank you for your kind words. I do hope you are doing well after four years since diagnosis. It is good that you have stayed with the thread. It is so important for the newly diagnosed and started treatment to know that they will get through it and return to a more normal life.

    I often read the posts here and take an interest, but there are too many to reply to.

    Keep up the good work and best wishes to you and to all those on this thread.

    Sylvia xxxx

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  • helenlouise
    helenlouise Member Posts: 420
    edited November 2018
    Hi urdrago

    Yes I did do Xeloda whilst doing rads. My MO did think my RO wouldnt wear it but he said lets do it. All new stuff. Issue can be burning but he was very happy as was I to give it a shot, always with the option of stopping if I did burn more than expected.

    You and I gave similar diagnosis.

    I feel ok but have had 2 delays because of low neutrophils. Firstly I was dropped from 4000mg to 3000mg and an extra week off. Then another week off... So standard was 2 weeks on one week off. No injections just more time for body to bounce back. This is my fourth round and we agreed to just have two weeks break. I get some indigestion and aches from arthritis. Tingling and my peripheral neuropathy is no better but all up I am well.

    This was my second round of rads to that side, so that is a bit rare. But they are keeping a close watch on me.

    I was just glad to start the Xeloda. Sooner I start the sooner I'm done.

    Ccc - your hair is amazing. I have less than that and finished chemo in June!!! Looks great.
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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited December 2018

    Good news to report. I finished chemo last week. My MRI is Friday, but I just had my pre-surgery mammogram... The tumor has disappeared! I am still not certain about my lymph node(s) and I know I need to wait for post surgery pathology, but to see the two mammograms side by side it was "now you see it, now you don't" -- VERY encouraging!!

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  • urdrago71
    urdrago71 Member Posts: 559
    edited December 2018

    woohoo. Congrats Santabarba youve kicked cancer in the a**

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  • Vslush
    Vslush Member Posts: 183
    edited December 2018

    That's such great news, Santabarbarian!!!

    Vickki

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  • Flynn
    Flynn Member Posts: 307
    edited December 2018

    That’s great news, Santabarbarian!! I hope the MRI looks good too! Keep us posted.

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  • SA8PG
    SA8PG Member Posts: 371
    edited December 2018

    Santabarbarian that is such great news!

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  • cccmc2
    cccmc2 Member Posts: 131
    edited December 2018

    having a rough couple days. Not really sure why. For a couple weeks I can honestly say cancer rarely if ever entered my mind. Now I’m back on the every little ache and pain scare myself to death train. I can’t have scans other than mammograms unless I have a symptom. The thought of scans scare me anyway. Guess I just needed to vent. Thank you ladies. Happy Holidays :

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  • romashka
    romashka Member Posts: 62
    edited December 2018

    My heart understands and hugs yours.

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  • urdrago71
    urdrago71 Member Posts: 559
    edited December 2018

    cccmc2,

    we're here for you cyber hugs Any plans for the Holidays?


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  • cccmc2
    cccmc2 Member Posts: 131
    edited December 2018

    thank you Ladies. I just plan to be around lots of family and friends this holiday

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited December 2018

    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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  • urdrago71
    urdrago71 Member Posts: 559
    edited December 2018

    Im so happy for you, celebrations are much deserved...God bless..

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited December 2018

    Thank you urdrago! I am very grateful.

    Has anyone here gotten Proton rads? Curious....


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  • Vslush
    Vslush Member Posts: 183
    edited December 2018

    That's great news, Santabarbarian... congratulations!!!

    Vickki

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  • cccmc2
    cccmc2 Member Posts: 131
    edited December 2018

    Santabarbarian,

    I am so very happy for you!!

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  • VLH
    VLH Member Posts: 1,258
    edited December 2018

    Fantastic, Santabarbarian!

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited December 2018

    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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  • VLH
    VLH Member Posts: 1,258
    edited December 2018

    LoveMyVizsla, Congratulations on the three-year milestone!

    Lyn

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  • urdrago71
    urdrago71 Member Posts: 559
    edited December 2018

    LoveMyVizsla, Congrats. Im still struggling with when my start date should be. lol

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  • rockymountaingirl
    rockymountaingirl Member Posts: 78
    edited December 2018

    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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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited December 2018

    Thanks everyone. And bravo to you LoveMyVisla. Re cancerversaries, I say, pick a day you can remember!

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  • TifJ
    TifJ Member Posts: 1,568
    edited December 2018

    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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  • Flynn
    Flynn Member Posts: 307
    edited December 2018

    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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  • Flynn
    Flynn Member Posts: 307
    edited December 2018

    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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  • Jennifer522
    Jennifer522 Member Posts: 254
    edited December 2018

    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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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited December 2018

    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....

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC50533...

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  • VLH
    VLH Member Posts: 1,258
    edited December 2018

    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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  • urdrago71
    urdrago71 Member Posts: 559
    edited December 2018

    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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  • Flynn
    Flynn Member Posts: 307
    edited December 2018

    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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