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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited February 2020

    yay!!

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  • Maryjv
    Maryjv Member Posts: 306
    edited February 2020

    awesome!!

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited February 2020

    MM!! that's TERRIFIC!! Yayyyy!

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited February 2020

    I love this site, and so appreciate all of you. You're the best, seriously.

    But I think I need to take a break. I have serious trust issues with my body right now, which I expect is common amongst us. How can I trust that it will keep me safe and healthy? I feel way too vulnerable. This week has completely messed with my mind. I need to get offline and do things, real things, physically and mentally. I need to do more with my quilting. I need to be more physical. I need to not sit in front of the computer.

    So I'm going to log out and try not to check back in for the next several days. Focus on other things.

    Love and good wishes to all of you.

    mm

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  • jrominger
    jrominger Member Posts: 349
    edited February 2020

    MtnMia. Fantabulous!!! Praise God. Now go play, have a blast and forget about things for awhile. We Look forward to hearing from you down the road!!

    Natalie’s ovaries come out on Wednesday due to BRCA2. Then we should be done hopefully forever!!!!

    Blessings to all!!!

    Jay.

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  • notdefined
    notdefined Member Posts: 286
    edited February 2020

    Mountain Mia, I just logged in to read your roller coaster ride this week, and I'm so glad it all turned out great!!!

    I had my 1st mammo since diagnosis, and I got a clean result. But my team of doctors had me scheduled to get an MRI as part of my post care. I went in on Wednesday, and am waiting to hear the results. It is so hard to shake this off and go on living. I am so fixated on Shannon Doherty and her announcement. Whenever I hear or read something like that, it knocks me to my core.

    I hope you are all doing well. I don't check in as often as I used to, but it is nice to catch up when I can.

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  • Mazzanja
    Mazzanja Member Posts: 5
    edited February 2020

    I’m 37 was diagnosed Sept. 2019 with TNBC, stage 2a bc of tumor size (2.3 cm), grade 3 (most TNBC is grade 3 due to no targeted therapies and aggressiveness). Had lumpectomy (clear margins), sentinel lymph node removed (negative), and port placed October 2019. BRCA negative, no lymph node involvement or vascular feeding. My treatment is 20 weeks of chemo having 16 treatments total. The regimen is AC-T but I’ve taken the Taxol first. I start AC tomorrow and I’m nervous about it! Once chemo is complete, I will have 6 weeks of radiation, 5 days a week.

    My TNBC Stats based on universal treatment: TNBC usually responds to chemo really well bc of rapid cell division.16% chance of recurrence 10-15 years out. 19% chance of recurrence 20 years out. TNBC if it comes back generally will within 1.5-2years out. If you make it without recurrence for 5 years, you are considered “cured” of course there are many variables to consider. Tumor size, grade, vascular feeding, lymph node involvement are some of the primaries. Change in diet, life habits, exercise can help prevent recurrence. 

    It’s been terrifying and traumatic.

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  • Mazzanja
    Mazzanja Member Posts: 5
    edited February 2020

    I’m 37 was diagnosed Sept. 2019 with TNBC, stage 2a bc of tumor size (2.3 cm), grade 3 (most TNBC is grade 3 due to no targeted therapies and aggressiveness). Had lumpectomy (clear margins), sentinel lymph node removed (negative), and port placed October 2019. BRCA negative, no lymph node involvement or vascular feeding. My treatment is 20 weeks of chemo having 16 treatments total. The regimen is AC-T but I’ve taken the Taxol first. I start AC tomorrow and I’m super nervous! Once chemo is complete, I will have 6 weeks of radiation, 5 days a week.

    My TNBC Stats based on universal treatment: TNBC usually responds to chemo really well bc of rapid cell division.16% chance of recurrence 10-15 years out. 19% chance of recurrence 20 years out. TNBC if it comes back generally will within 1.5-2years out. If you make it without recurrence for 5 years, you are considered “cured” of course there are many variables to consider. Tumor size, grade, vascular feeding, lymph node involvement are some of the primaries. Change in diet, life habits, exercise can help prevent recurrence. 

    It’s terrifying and traumatic.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited February 2020

    Mazzania,, you have found a good group of fellow TNs to support you. I hope the A/C is tolerable and the remaining treatment goes well. Sound like you caught this early and that's great!

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  • Mazzanja
    Mazzanja Member Posts: 5
    edited February 2020

    I've made it thru my first AC. I have labs tomorrow to check my WBC and hope that all is well. I have 3 AC treatments left over 7 weeks and chemo is done! So far, AC has not been bad for me... no bone pain, no nausea...

    Onto radiation next! Gotta do it-to get thru it!

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited February 2020

    Hello ladies. I had my yearly checkup with my Oncologist today and he said I’m doing great! He said my prognosis is really good. I’m seven years out so still hanging in there!
    (((((HUGS))))) to everyone!

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  • Gamb
    Gamb Member Posts: 599
    edited February 2020

    So great to hear Luvmy.. Here's to many more Years!!!!!

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited February 2020

    Hi Luv! So nice to 'hear' from you and read your update! Sending hugs and wishing you all the best!

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  • BanR
    BanR Member Posts: 289
    edited March 2020

    Anyone out there with RAD gene mutation?

    And does anyone remember me .. I don't see any familiar names :(


    love to all!


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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited March 2020

    I remember your name, BanR.

    Today was Triple Negative Breast Cancer day.

    Mazzanja, those are not the stats that my doctor gave me. We have the same stats and she told me my chance of recurrence is 8-10%.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited March 2020

    I’m 3 1/2 years out from treatment and see my MO next week. I can’t think of any questions to ask her. Anyone have any ideas

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  • moth
    moth Member Posts: 4,800
    edited March 2020

    LoveMyVizsla - don't want to be a downer but 20/20 hindsight, when I got discharged from my MO less than a year ago, I wish I had asked for a complete blood test - incl liver, tumor markers & a chest xray. I think they don't want to do them tho so it's likely she wouldn't have done it but I have heard some people in Cda get them so not sure how the MO makes that decision. Make sure she palpates your abdomen & all your lymph nodes thoroughly. If you've had sore joints, pain anywhere, any new weird ache or new symptom even if you're sure it's not related, mention it.

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  • SJSmith52
    SJSmith52 Member Posts: 10
    edited March 2020

    I was diagnosed almost 3 years ago with invasive TN breast cancer - no lymph node involvement. Very small tumor. My doctor did not advise chemo only 15 days of radiation. Next month I will have a reck with oncology dr and mammogram. From what I see most people do receive chemo. Every reck. produces extreme anxiety prior to the dr visit - more so as time goes by rather than lessening. I am wondering if anyone has any ideas on how to lessen the fear of recurrence when your checkup is on the horizon.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2020

    SJ -- I try to focus on the actual reality: the longer you go without TNBC recurrence, the less likely recurrence becomes. You are basically right at the edge of the prime window of recurrence (3 years). At 5 years post diagnosis, the rate of recurrence of TNBC drops to almost zero.

    I'm not sure how to avoid pre-scan anxiety, as of course you want the scan to be clean and the possibility it won't be is hovering. I think being very busy that week is a pretty good distraction to get through the wait part.

    Last I remind myself that if something IS happening, I want to know it. asap.

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  • BanR
    BanR Member Posts: 289
    edited March 2020

    Luvmy...your name sounds familiar too! we were so many then, most gone ahead with their lives.. few no more unfortunately.


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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited March 2020

    Hi BanR I remember your name, too! Always nice to 'see a familiar face' here ! =)



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  • PeggySull
    PeggySull Member Posts: 686
    edited March 2020

    I am just checking in after a long time. I want to add my voice to those of other TNs that remission is possible. I am 5 1/2 years out NED. When I first received my diagnosis I was sure I would die of this type of cancer. But I didn't ! Hang in there! PS If there is one piece of advice I would give is that if your oncologist wants you to have dose dense taxane chemo every two weeks, inisist on the once a week regimen. Studies have shown it is just as effective and reduces taxane-induced neuropathy A LOT. I had dose dense and now I struggle with neuropathy in both my feet and the top parts of my fingers. Both of these affect my life and work. But back to the positive--after 5 plus years I am alive and well and living in Wilmington NC. Any Wilmington ladies out there?

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  • VLH
    VLH Member Posts: 1,258
    edited March 2020

    Mazzanja, fingers crossed, May will mark four years since diagnosis without a recurrence for me. Our stats are nearly identical. I hope all goes well with your remaining treatment.

    Great news, Peggy!

    Lyn

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited March 2020

    Morh, why a chest X-ray? A blood test is always the first stop when visiting my cancer Center.

    Saw this today.

    https://www.healio.com/hematology-oncology/breast-cancer/news/online/%7B3d90669f-97a3-4929-8010-a98b02803c3d%7D/eight-important-updates-for-triple-negative-breast-cancer-awareness-day

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  • adagio
    adagio Member Posts: 982
    edited March 2020

    I remember you Peggy Sull - we went through chemo about the same time - I completed all of my treatments including radiation at the end of April, 2013 - so that means I am coming up to 7 years - unbelievable! Ladies - there is hope - I have had some scary moments, but I have thoroughly enjoyed LIVING my life - none of us knows what lies ahead - so my motto - is "embrace each day and live it as best I can".

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  • VL22
    VL22 Member Posts: 851
    edited March 2020

    adagio - I came here today looking for some positivity and saw your post - fantastic

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  • BanR
    BanR Member Posts: 289
    edited March 2020

    hey!!

    AnotherNYCG and Adagio!! Familiar faces .. 😊😊

    How have you been ladies.

    How are our other friends. Everyone has moved on thankfully. It's so nice to stop by and see old cancer companions here


    love!

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  • Mazzanja
    Mazzanja Member Posts: 5
    edited March 2020

    I definitely like 8-10% better than 16%. My oncologist pulled up the universal site they use and put in my details... based on that he gave me the stats and showed me the site. I’m hoping based on my specific details it’s surely lower than 16%. I NEVER want this to return as I’m sure No one does. My last chemo is this coming Monday and I’m so ready!!! My hair will start to grow back, I can start rebuilding my immune system, and move onto radiation which will start 2 weeks after the completion of chemo! I’m only having to do 4 weeks of radiation instead of 6 weeks which was a pleasant surprise. How much radiation did you do or will you do?

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  • miss302
    miss302 Member Posts: 34
    edited March 2020

    hi

    I got neuropathy on weekly dose dense taxol. But I am about to celebrate 13 years and am NED.

    I struggle with radiation because I had 31 doses and was diagnosed at the Mayo Clinic with RIBP radiation induced brachial plexopathy. Scary as hell diagnosis. My hand and arm and shoulder are withering away or sinking in. I am losing functions of my hand and arm. Plus it causes me pain. It's a 0.5% chance to got it!! Not so lucky me. I just turned 40 so this radiation fibrosis that is slowly taking my entire left arm usage has a lot more years to continue. Radiation is the gift that keeps on giving. But I wonder if I would have turned it down would I be alive with 2 children AFTER cancer????? Rant over.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2020

    Can pentoxifylline help at all at this point?

    I am so sorry you are suffering this SE. I have a friend with the same thing and it's awful. I am glad you and your children are here!!

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