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Calling all TNs

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Comments

  • lookingforward66
    lookingforward66 Member Posts: 148
    edited May 2016

    70 in October!!!

  • Valstim52
    Valstim52 Member Posts: 833
    edited May 2016

    Lookingforward, thanks so much for posting. You give us all hope whether we had chemo or not.

  • Ag23
    Ag23 Member Posts: 28
    edited May 2016

    Wow, Marsha. Thank you so very much for sharing your story. I really appreciate it! Everyone that I've come across has been pCR or near pCR, so it's nice to know that there is hope for living recurrence free for those of us who do not respond to chemo. I love your positive attitude! I try so hard to live like that, and am successful most days...and then the fear creeps in. Mostly when I look at my little guys face - he's only 1, and I just get so nervous that I won't be around long enough for him to remember me. I'm planning to collect stories like yours and tuck them in my notebook to read on those days when I begin to worry or question whether this can be beat. Thank you for giving me hope :o)

    Has anyone on this board had genomic testing done on their tumor? My report showed up with mutations of MYC, TP53 and FH duplication. Just curious...

    Have a great day everyone!

  • Valstim52
    Valstim52 Member Posts: 833
    edited May 2016

    BS gave me good news. My path report shows PCR and clear margins, so my chemo did it's work. They took out 17 lymph nodes no traces of cancer. Considering my PET scan in January was lit like a Christmas tree, I'm very pleased.

  • hanley50
    hanley50 Member Posts: 78
    edited May 2016

    Great news Valstim!

    Hug

    Maryann

  • ALHusband
    ALHusband Member Posts: 342
    edited May 2016

    Ks, Simple just gave you some great advice. Dr Ingrid Mayer at Vanderbilt is the one who recommended my wife's course of treatment and Vanderbilt was absolutely excellent! Dr Mayer was not my wife's Onc...but we did see her for a second opinion when there were some complications with my wife's diagnosis. She sent her recommendations to my wife's Onc...who carried out her treatment locally here in Alabama...simply for convenience's sake, rather than the 2 hour treck to Nashville each week. However, had my wife's Onc not agreed to carry out Dr Mayer's recommendations...we definitely would have gone to Vanderbilt each week. Excellent Doc and TNBC expert. But she does NOT sugarcoat things. She will hit you right between the eyes with the facts. I have also heard of Dr Carey in NC and have viewed some of her lectures on TNBC. Either would be great docs to consult.

  • avmom
    avmom Member Posts: 45
    edited May 2016

    Excellent news, Val!

    I just got back from my post op outpatient appointment. Unfortunately, I'll be keeping both drains for now. I was hopeful about losing the left drain, but then it put out 50 ml in just 20 minutes after emptying the drains this morning. On the plus side, I don't have any indication of infection, and my nausea should subside once I'm done with the clindamycin. That can't come too soon

  • Angtee15
    Angtee15 Member Posts: 72
    edited May 2016

    Congrats Valstim!!!

    Ag23--I had my BMX on 5/11. After finding out I did not have a complete response go the chemo I fished around and saw only about 38% of TNBC gals have a PCR to neoadjuvant chemo. So obviously 60%+ of us can't be doomed! I know it's hard because my oncologist was so enthusiastic about how well chemo works on aggressive TNBC cells from the get go. So of course you kind of expect the cancer to be obliterated!


  • Valstim52
    Valstim52 Member Posts: 833
    edited May 2016

    I agree Angtee because I was sure with my dx being IBC and TN that I would be happy if it didn't keep growing and spawn more tumors. PCR I was told is great but if that was all that was needed was chemo you would not have a combination of treatment of chemo, surg and rads.

    So no way are all of us doomed no matter what the pathology and I have come to hate statistics.

  • Valstim52
    Valstim52 Member Posts: 833
    edited May 2016

    Avmom, I still have lots of drainage, and had several clots that the visiting nurses had to get out. So that slows the drainage.

    BS says will take out next week unless i am still draining a lot.

    Dr Lisa Carey was my 2nd opinion, I'm in NC.

    She did admit she is a TN expert but my MO had more experience with IBC. I really appreciated her admitting she was not the know all of everything. To me that is an excellent doctor

  • kellychameleon
    kellychameleon Member Posts: 48
    edited May 2016

    Valstim, that is such good news - so happy for you!

    I have my surgery (bilateral mastectomy) tomorrow and hope for the same. I had a sentinel node biopsy last week and found out today that everything came back negative there, so that was a huge relief.

  • Valstim52
    Valstim52 Member Posts: 833
    edited May 2016

    Kelly sending healing hugs your way for your bmx.

  • 4everStrong
    4everStrong Member Posts: 88
    edited May 2016

    congrats val!!! good news.. wishing all the best for all of us.

  • MoreShoes
    MoreShoes Member Posts: 179
    edited May 2016

    Valstim, that's exactly what I've been telling everyone. They were happy with the CT scan results (the chemo worked and the tumor disappeared) but I knew that I still had to do a BMX and rads so it was bittersweet for me (TN IBC)

  • HausFrauMi
    HausFrauMi Member Posts: 113
    edited May 2016

    Hi ladies! Nothing major going on just not feeling too excited about anything! I have 5 more Taxols left. The neuropathy this weekend has been significantly increased compared to previous weeks where I had a smidge or none at all. I stopped in to my Onc/chemo doc this morning when I had my son's Sleep Dr appt across the hall--conveniently. The PA wrote me a script for neurontin? But I asked if I could try glutamine and see if it makes a difference. So will start with the supplement (in addition to my B6, B12 and multivit, vit D, allergra, prevacid cocktail.....) YAY IF it gets worse I can always fill the rx

    Tomorrow will be a lazy napping day after running a lot of errands today. The holiday weekend messes up with my planning and rest days! Glad we didn't travel.

    Val--glad to hear the mx went ok. Best wishes on the recovery. I know someone else just had one too====hope all is well. chemo brain and too many missed posts are affecting my brain.

    Ready for kids to get out of school and have some time to relax. They have day camps several weeks spread out over the school break. That will help keep the house somewhat cleaner and I can nap in quiet Happy




  • scotbird
    scotbird Member Posts: 592
    edited May 2016

    Val that is fabulous news, you must be so pleased. I'm so happy for you. Kelly hope the surgery goes well, thinking of you. Marsha I thinking your user name should be Looking forward and looking great, and your positive attitude is absolutely inspirational.

    The weather in Scotland is gorgeous and sunny at the moment - mini heat wave here - we had a picnic in the park today, that is almost unknown. It really cheered me up. Love to all. X

  • Valstim52
    Valstim52 Member Posts: 833
    edited June 2016

    Hi Everyone

    thanks for the well wishes.You all know we take the good news while and when we can, and rejoice with others, cry with others. I love these boards

    Kelly in your pocket.

    It's getting hot here already, almost 90.

  • BanR
    BanR Member Posts: 238
    edited June 2016

    Ag... I meet a lady in 2013 here in this thread...I posted the same query " what if tumor is chemo resistant, since 7 percent tnbc tumors are, is what i read". She replied back that hers was a chemo resistant one and she had to stop chemo and that was some 3 years ago. I will try to recollect her name and try get you connected with her.

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited June 2016

    ks, - i am so sorry that you are dealing with more issues now. The oncs have new and better meds all the time. Tell them you want their BEST stuff!!

    kelly.- i hope that your surgery goes smoothly and that you have a quick and easy recovery!!

    Val, - happy to read your update!!

    avmom, - we all hated those drains, - hang in there, - they'll be out soon!

    Hope all here have a good start to June and feel better and better as the month goes along!

    Hugs from NYC

  • Triplegirl
    Triplegirl Member Posts: 27
    edited June 2016

    I am sooooo impressed.  Looking good!

  • Triplegirl
    Triplegirl Member Posts: 27
    edited June 2016

    I'm almost identical and have the same question.  Can you gals who didn't have a complete PCR, say what the amount was from original size to the amount they removed at surgery?  I have heard that the residual needs to be quite small.  I guess this is for ladies that had neoadjunct.  Also has anyone had part of their chest wall removed during surgery?  My surgery is scheduled for July 11th and my surgeon is looking to do this as my tumor which is barely shrinking is sitting on my chest wall.

    Thanks everyone,  I do read when I can and so appreciate all of you TNBC gals. 

    Much love to all and many hugs, Janice


  • meadow
    meadow Member Posts: 998
    edited June 2016

    Hugs to kelly, hoping surgery was smooth, recovery the same.

  • simplelife4real
    simplelife4real Member Posts: 341
    edited June 2016

    Triplegirl, I did not have a pCR. At surgery, there was no cancer in the breast (originally 2cm), but there was residual cancer in two lymph nodes. The largest cancer was 2.5mm and the other was a "micromet". In 60 days, I will be three years out. My "residual cancer burden" is considered to be very small, but it would have been better for it to be in the breast rather than the lymph nodes. Dr. Mayer at Vanderbilt told me my chance of a local recurrence was 5% and a distal recurrence was 15% with that amount of residual cancer. So far, everything has been good. I've needed two biopsies on two different lumps in my breasts, but both were deeemed to be fat necrosis. Hope that helps some.

  • Triplegirl
    Triplegirl Member Posts: 27
    edited June 2016

    Thanks Simplelife!

    It is encouraging to hear positive stories for sure.  I really appreciate all of the information that everyone posts as it helps to not feel alone with the TNBC diagnosis.  I have 2 sisters that had breast cancer and one is still alive but was estrogen positive.  My other sister passed from breast cancer.

    The hospital called yesterday to schedule me for another ultrasound on Monday. My oncology surgeon requested it although originally they were going to wait until the 14th.  I still have 4 more Taxol treatments left out of my 12 weekly.  I am a bit nervous as the last ultrasound after A/C hadn't shrunk that much 3cm down to 2.2cm.  The tumor also sits on my chest wall and barely moved away in the last ultrasound.  Surgery is still scheduled for July 11th for a double mastectomy unless something makes them change things. 

    I of course am hoping this ultrasound shows shrinkage in a big way and especially away from my chest.  My surgeon was thinking she may have to cut out part of my chest wall and I haven't seen anyone post about having that done.  I know it's not common so again hoping that can be avoided.

    Thanks again to all of my TNBC sisters:) 

    Keeping my fingers crossed,  Janice


  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited June 2016

    I'm praying for you Janice! Hang in there and please update us after you hear the results of the ultrasound. (((((HUGS))))

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited June 2016

    A question came up on another thread about post treatment scans. What is the standard for TN? I know my MO says I will have a mammo every 6 months for 3 years, but since my lumps weren't detected by mammo, I will have a yearly MRI too. Is it protocol to get pet scans too

  • greenae
    greenae Member Posts: 246
    edited June 2016

    hi!

    My NYU protocol is a mammo and US every year. No scans unless I have a complaint of 2 weeks. 1.5 years out, so far , so good. Feel fine, and trying to Live Everyday! Hugs to All!

    Arlene

  • greenae
    greenae Member Posts: 246
    edited June 2016

    It seems, with TN, that if you luck out, and it never returns...you are good to go! If it shows up elsewhere (mets), there is not much that can Give you more than a year, or two. That is the big Sucky part of being TN. I know there is major reasearch going on. I hope and pray the big guns will figure it out. Until then, we have no choice but to live and love everyday. I hope and pray we will all beat this beast!

  • Triplegirl
    Triplegirl Member Posts: 27
    edited June 2016

    Thanks Luvmydobies:)  I will post after I know the results.  I hope sooo much that it's shrinking.....

    Janice

  • Cathytoo
    Cathytoo Member Posts: 394
    edited June 2016

    greenae...I'm confused. You wrote that with TN and mets they can only give you one to two years. But, I read about women living many years with mets. What makes the difference

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