Calling all TNs

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    Thank you, Parrynd1 !!!

    HopeBry my MO explained it to me as the # of times they need to whack the cancer in a row. Every further treatment makes a small difference. if 2 was as good as 4 they'd give everyone 2.

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  • Vslush
    Vslush Member Posts: 183
    edited January 2019

    That's fantastic, Santabarbarian! Have a Happy, Happy New Year!!!

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    Thank you!!!

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  • HopeBry
    HopeBry Member Posts: 88
    edited January 2019

    I hear ya

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  • Flynn
    Flynn Member Posts: 307
    edited January 2019

    Congrats Santabarbarian! So happy for you!


    HopeBry, I’m sorry that you’re having such a rough go with AC! I’m not far enough out to tell you how ending chemo early can work out. I did have to end Taxol & carboplatin ahead of schedule b/c my MO pulled the plug due to side effects. I’m glad that my side effects have improved light years but I didn’t get pcr. I think I might have achieved pcr if I finished treatment as planned. It’s added a bit of stress, honestly. That’s just my experience tho and I wish you nothing but the best, however you proceed.

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  • Lookingforward66
    Lookingforward66 Member Posts: 147
    edited January 2019

    HopeBry,

    I had 2 A/C & stopped all! I almost died. Allergy to chemo. I would have been a Chemo death. Yes there is such a thing. I had 1 node involved. I changed eating, exercising, my whole lifestyle basically. That was over 6 years ago. You have to do what is most comfortable for you to live with. Stay positive! That is a biggie I think.

    Much luck,

    Marsha

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  • urdrago71
    urdrago71 Member Posts: 559
    edited January 2019

    CONGRATS, Santabarbarian

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    Thank you so much Flynn & Urdrago!

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited January 2019

    https://blogs.princeton.edu/research/2019/01/03/experimental-treatment-shows-promise-against-triple-negative-breast-cancer-in-mouse-study/

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  • cccmc2
    cccmc2 Member Posts: 131
    edited January 2019

    congrats Santabarbarian!!!!!!!!

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  • cccmc2
    cccmc2 Member Posts: 131
    edited January 2019

    I did Finish all 4 AC treatments but only did 3/4 taxol due to extreme neuropathy. I’m only a few month out. Hope every day it was enough.

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  • Volleyballmom2008
    Volleyballmom2008 Member Posts: 54
    edited January 2019

    Good morning.

    Santabarbian congratulations awesome news.

    I had my lumpectomy and node removal yesterday. I have a lot of pain under my arm but it is tolerable. Just taking Tylenol because pain med make me sick.

    They ran some test on my nodes during surgery and they came back clean. I believe my surgeon took three out. My tumor in lymph node was completely gone only clip remained. I will have to wait for my pathology reports which will be nerve-wracking but my surgeon was very pleased between my Mri and node result so far she said we have had the best case scenario.

    Thank you ladies for all your support.

    HopeBry I was thinking this morning about the 20 weeks of chemo I had and how bad it sucked. I dreaded every week and all the new and old side effects that I would get. My chemo was 12 weekly taxol followed by 4 a/c every other week. I finished my last a/c December 20th. I never thought I would feel grateful, but I am glad I did all that chemo, am not so sad about being hairless anymore because it worked. Everyone is diffrent, every cancer is diffrent, but so far I have gotten a good response from chemo. Good luck in making your decision.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    Volleyballmom I am so happy for you and am crossing my fingers for a pCR for you!!! I was in the same position: imaging results perfect, surgery perfect, 4 nodes total. You don't want to count your chickens before theyve hatched of course... but this is sure a great way to head into the waiting days. Let's hope you spiked that Cancer nice and hard.

    thanks to you and cccm2! I feel very very lucky and grateful.

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  • urdrago71
    urdrago71 Member Posts: 559
    edited January 2019

    new posting about TNBC,

    https://www.drugtargetreview.com/news/38580/breast...


    Also found this..

    Phase 3 Trial of Sacituzumab Govitecan Recruiting Triple-negative Breast Cancer Patients

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    Something I have read about with respect to killing TNBC is hyperthermia.

    I do not have the specific article at hand but I took many notes, and something I read early on suggested TNBC was vulnerable to heat. All cancer will give off "heat shock protein" if exposed to high enough heat for long enough... an hour or so.... & this makes the cell identifiable to immune system to attack.

    There are quite a few cancer centers offering hyperthermia these days. MD Anderson, U Maryland, Wash U St Louis, and a few more.

    The great part is that heat does not cause permanent damage to your healthy cells if kept below ~111, but the cancer is weakened or killed at about 107.

    They can apply heat to a tumor with inserted probes, or (if superficial) with external sources of heat, or there can be whole-body hyperthermia, or it can work via heating the chemo and injecting it warm, or heating the patient's blood in a given area of their body. I went low tech: my tumor was superficial as was my node so I used a lot of heat on them w hot water bottle the week before my chemos. I figured it would not hurt and might help.

    Hyperthermia synergizes well with chemo and radiation and is thought to improve the efficacy of both. Heat to the area improves blood flow, to deliver chemo to the area. You normally do 2 or 3 one hour sessions per week during rads or chemo. Something to know about!

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  • MomMom
    MomMom Member Posts: 523
    edited January 2019

    Dear Sisters who have had, or are going through, TN treatment.

    Today is my 5 year anniversary since diagnosis, and my mammogram today is CLEAR!! I am grateful beyond words to this blog and other threads on breastcancer.org that sustained me through chemo, radiation, scares, loss of hair, and more.

    We are stronger than we knew. We have gained more insight into the fear of those who face illness and go through the most challenging times. I know that for me, every day since my diagnosis these are the things I've gained. I appreciate life more, I value my family, my friends, my angels on earth, and most importantly my faith more. I am stronger. My motto is this. Live with faith, not fear, and be strong enough in that faith to handle the uncertainty in life, good or bad. It's all good.

    Two things that helped me so much. First, I went to my first chemo scared of the dreaded "red devil," but happy. I had my husband take a pic of me smiling and clutching a blanket a daughter-in-law had made for me. I texted the photo to our 3 adult children and their spouses, telling them how happy I was to be taking this first important step.

    Second, at an oncologist visit, after a biopsy scare that turned out to be benign, she asked me if I had any fun trips coming up. I told her I felt like my life was on hold which made it dificult to schedule anything too far in advance. She told me to take a trip, plan for the future. Why waste good time worrying about it. And she was right. Once I reached that point, I only sporadically checked into this blog.

    I wish each of you the best possible outcomes. Your strength has inspired me. You are my sisters.

    Love, Paula (Mom Mom)


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  • VLH
    VLH Member Posts: 1,258
    edited January 2019

    Fabulous, Santabarbarian!

    HHopeBry, I'm sorry you find yourself in such a difficult quandary. The challenge is that a specific number of chemo treatments is established during the study phase, but I don't know that statistics are carefully gathered for those who deviate from that initial norm, I.e., completing 3 of 4 recommended AC infusions. I hope you find peace with your decision and that your remaining treatments go more smoothly.

    Lyn

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  • Trishyla
    Trishyla Member Posts: 1,005
    edited January 2019

    Yay Mommom!

    Five years is such a huge milestone for those of us with triple negative. Your reoccurrence risk is basically zero at this point. Congratulations.

    Trish

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  • urdrago71
    urdrago71 Member Posts: 559
    edited January 2019

    Momom, Congrats...

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    mommom, cheering for you!

    VLH: Thank you!

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  • Meow0369
    Meow0369 Member Posts: 156
    edited January 2019

    HopeBry, I don't get to post often but they can lower the dose or give you more time to recover instead of a dense dose they can give smaller a.m. mounts more often. Its usually easier on the body. That's what my 69 year old mother did. Her schedule was M-F 10-2. Or switch to another chemo brand. That was an option I was not given until it was too late to do more chemo. I had to stop at 4 out of 4-6 Cycles. I had severe muscle pain couldn't walk. I sometimes have regret and other days I'm ok w it.

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  • SA8PG
    SA8PG Member Posts: 371
    edited January 2019

    MomMom celebrating with you your 5 year milestone. And you are absolutely correct it’s so important to make plans and go live. I know its catch 22 because so many times we get worried about it returning but we can’t stay in that mindset. Live, laugh and love

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited January 2019

    HopeBry, my MO reduced my AC dosage because of what it did to my already low neutrophils. I can’t remember the percentage she’s lowered it, but I’m sure I wrote it down if you want me to look. Maybe it would be enough to help you with your symptoms.

    MomMom, good for you!!!

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited January 2019

    santabarbarian, - WONDERFUL update!!

    MomMom, - so nice to see you here posting and happy!

    HopeBry, - I am sorry that you've had such an awful time with AC ! I, too, did not handle it well, so my onc divided the A and the C, which made it more tolerable. I had one dose of full AC, then just C then just A, until it equaled the 4 DD amount. Then I started the DD taxol, which was ok. I hope your onc has a good solution for you!!

    As for me and my post a few days ago, my lab results from my reg dr came out ok, (knocking wood here) and I have an appt with an ENT later in the month. I do think it may be a dental issue, so will schedule that, too. Most people wouldnt think 'it may be cancer' , but once we've had our BC diagnosis, it's so hard not to think of it. :(

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    Thank you, AnotherNYCGirl. Crossing fingers for your upcoming appointments!

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  • HopeBry
    HopeBry Member Posts: 88
    edited January 2019

    Thank you everyone. Its really helpful knowing your experiences.

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited January 2019

    thank you santabarb!

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    an article that goes into detail re compounds with activity against TNBC:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5789156/

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  • urdrago71
    urdrago71 Member Posts: 559
    edited January 2019

    Does any take Xeloda and a stage 3b? I was denied today by my RX insurance. MO office will follow up but Im curious.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    urdrago, I hope your MO can bitchslap your insurance

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