Calling all TNs

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited March 2017

    So glad to hear Meadow's news and to hear that DiV is doing well, relatively speaking.

    I'm on vacation in Florida and I want to hug every woman is see that has the chemo hair. Too many of us, unfortunately.

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  • Dova
    Dova Member Posts: 16
    edited March 2017

    Today we had some terrible news from our appointment. Pathology reports showed the tumor was 50×80×35 with 10 nodes that had active cancer cells. My heart is breaking and I can't even imagine what my mom feels. Her stage now is IIIC.

    Anyone know people with such a terrible stage and still alive? Also if 4×TC didn't do much for her will Adriamycin work better?

    Thank you all and so sorry for the ones that just got diagnosed. Wish you best of luck and fight hard

    Cristina

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2017

    aterry,

    Thanks for appreciating!


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2017

    Dova,

    It's heartbreaking to hear about your mom's dx. I'm so sorry. Out of curiosity, I tried reading some posts on the Metastatic Cancer thread and it is really scary but i've discovered that there are some admirable ladies that do survive late stages of cancer. There's always hope! I'll offer a prayer for your mom and family as well, as you go thru this difficult time.

    Hugs for you and your mom.

    Gina


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  • SuprSurvivr
    SuprSurvivr Member Posts: 139
    edited March 2017

    So much has happened since I was last on! I'm not much for long posts, but just know you ALLare in my daily prayers. It's so hard to give up "control" of our lives, and this process has certainly taught me how to let go and let God. May He give us all healing and peace.

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  • lovesgreenthings
    lovesgreenthings Member Posts: 107
    edited April 2017

    Dova,

    So sorry that you and your family are so scared right now, this is the toughest time once you get the statistics and try to sort things out. AC is powerful stuff though! Carboplatin is another chemo that some TN's have used. Are you considering a second opinion for your mom? That might help put some perspective around this for all of you. The chemo might also be working better than you think, tumors do not always shrink neo-adjunct but it might have gotten stray cells that left their original location. There is a ton of research on stage 3 survivors and what they did on these boards so please try to find some that may give you ideas on questions to ask her Doctor's. Clinical trials may also be available. There is a lot of progress being made every day, there is a lot of hope. Wish I could hug all of you so you would feel better about this, but know that there are so many of us out here fighting and winning!

    Sending white light and healing to your mom and your family.

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  • Dova
    Dova Member Posts: 16
    edited April 2017

    Thank you all very much, it amazes me every day how strong and encouraging people I have never met can be. It is very scary but I never lost hope for mom. I understand why forums like this are a must. We all need positive words at all times.

    You are all on my mind, :-)

    Cristina

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  • TNpotato
    TNpotato Member Posts: 71
    edited April 2017

    Dova - Don't give up! I was diagnosed at IIIA Triple Neg on Mar 9, 2016 and literally just finished a year of treatment (chemo, surgery, rads+chemo, more chemo) a month ago.

    I had a PET that showed me NED on Wed! :) Have hope!

    I will keep your mom (and you!) in my thoughts and prayers. I know what a strain my illness put on my family. Don't forget to take care of yourself too, ok? {{HUGS}}

    (And I'm popping in now that I'm recovering from the last chemo that knocked me for a loop! Haven't posted since beginning of the year! Big hugs to all of you wonderful people! I'll try to be better about keeping up with y'all!)

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited April 2017

    Dova

    Welcome and don't give up. I too was diagnosed 12/15 stage 3b Tn and IBC. Stage 3 is not metastatic cancer. It is considered metasticized when it spreads to another organ or area outside of the breast and lymph nodes. It's considered locally advanced when lymph nodes are involved. I am almost a year from my last chemo and doing reasonably well. I'm too am NED.

    Meadow so glad your wound was closed and you are progressing. What an awful time for you, yet you find the time to encourage others.

    Val

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  • Dova
    Dova Member Posts: 16
    edited April 2017

    I hope all of you great ladies are doing fine and fighting hard. Wanted to say hi to all and give good vibes. My mom will have another appointment on Thursday to figure out a new treatment plan. Hoping for good news.

    Take care

    Cristina

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  • lovesgreenthings
    lovesgreenthings Member Posts: 107
    edited April 2017

    Christina,

    Good to see you back on the boards with an update. I think all of us will agree that once a treatment plan is in place, everything just starts moving along which brings a sense of relief. I am in chemo treatment right now and things are going well for me. Be sure to join the chemo discussion groups for information on managing side effects. There is one for every month that people start chemo and you can follow along with others and share/receive ideas and tips. This is very helpful!! Sending prayers and hugs to you and your family.

    To all the Mighty TN's, wishing you a great week ahead!

    Anne

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  • Meadow
    Meadow Member Posts: 2,007
    edited April 2017

    Thanks lovesgreenthings!

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  • Meadow
    Meadow Member Posts: 2,007
    edited April 2017

    Thanks lovesgreenthings!

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  • Meadow
    Meadow Member Posts: 2,007
    edited April 2017

    image

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  • 6feetover
    6feetover Member Posts: 320
    edited April 2017

    It's finally online: my 15 minutes of fame. Thought you folks might appreciate it...

    Go to https://www.yalemedicine.org/ and scroll a little bit; my story's the one on the top left.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited April 2017

    I like that saying, Meadow!

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited April 2017

    Great story, 6'over!

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited April 2017

    6feetover...Great story. I hope they write another one ten years from now when all this is just a memory.

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  • Jojobird
    Jojobird Member Posts: 203
    edited April 2017

    Dova,

    I'm late to respond but I wanted you to know that I had 21 nodes and a similar sized tumor to your mom. One node was 3.5 cm, packed with cancer cells.

    I had an mx, then chemo (AC/T), then 25 rads. As of December I am Disease free and doing fine.

    I'm running my first 10k in over a year next month. I am sending your mom every ounce of strength and survivorship I can muster. I remember how devastated I felt, and want to offer you, and her, a hand and some hope. Love to you both.

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited April 2017

    Jojobird....good for you, girl‼️ Your post gives us all hope and strength. Thanks for sharing.

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  • ALHusband
    ALHusband Member Posts: 344
    edited April 2017

    Move over ladies, big ol' fat arsed Mike is jumpin in Meadow's pocket with you!

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  • Dova
    Dova Member Posts: 16
    edited April 2017

    Thank you much Anne and Jojobird. It helps a lot to hear good vibes and awesome outcomes. We had our appointment today and my mom will have 4 cycles of Adriamycin by itself in a dose dense every 2 weeks.

    She is very happy she will be done sooner so she can go back to Italy(home) for couple of weeks before her 6 weeks radiation starts (she misses home and I also want her to be mentally ready for the treatment)

    Jojobird good luck on your 10k I love running myself, its very difficult now to do it with a 18 months old, doctors appointments for mom and a job. Hopefully I will be able to start training soon for another half marathon.

    Take care

    Love to all Cristina


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  • petersdraggon
    petersdraggon Member Posts: 9
    edited April 2017

    Dova: My wife was stage 3c out of the box. She did 4 AC dose dense followed by 4 Taxol, dose dense, as I understand the prescribed treatment regimen if the patient can tolerate it. It's hitting the cancer with the strongest drugs right off the bat. She had a good response and went into remission. It's my opinion that your mom should have testing on the tumor sample for PDL-1, PD-1, as well as other tumor markers for down the road just in case. Foundation One does complete genetic testing. If it were to come back and she is in a high-risk group one thing you don't have is the luxury of time that it takes- weeks to do the testing, getting the results back, finding a clinical trial that one is a fit for given previous treatments, etc. Do research and be ready just in case. Unfortunately my wife's TN returned aggressively after 18 months and there was valuable time lost while doing testing, increasing tumor burden which can overwhelm the immune system further. The oncologist administrating the clinical trial told us when asked that due to the secrecy of the trial he was not allowed to reveal the test results the trial paid for the markers/immune checkpoints that would give an indication as to how effective immune checkpoint inhibitor drugs like Keytruda (pembrolizumab) might be. Bottom line was, she entered the trial without us knowing, although there may have not been many other options available. If the insurance company doesn't want to pay for the testing and you can afford it I would suggest it. It's a learning curve and we must share information to help others so they don't have to waste valuable time as we did. My wife's condition was not helped in that she was a diabetic and having excess sugar in your system feeds the cancer many suggest. Bare in mind in regards to the standardized treatments- no two people are alike either, what works for one may not for another, and vise-versa and she may have a complete clinical response. All the best to you and mom.

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  • 4everStrong
    4everStrong Member Posts: 118
    edited April 2017

    Hi all.

    I thought I'd share this

    https://breastcancer-news.com/2017/04/07/metastati...

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  • lovesgreenthings
    lovesgreenthings Member Posts: 107
    edited April 2017

    Dova,

    DD AC is great stuff! I am having my 4th treatment next Tuesday. Then Taxol x 12 after that. TN responds very well to chemotherapy and I hope that is the case for all of us TN ladies going through this. I am doing very well on chemo and have few notable side effects. Your mom is not working so that will be helpful. I took disability to manage this better and my MO is calling me Superwoman! Nice to have good feedback from my MO. I follow all of the rules and do everything that they recommend. The chemo boards on this site are VERY helpful! Look at them for advice and help. PM me if you want the short version. :)

    Hugs and white light,

    Anne

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  • DiV
    DiV Member Posts: 231
    edited April 2017

    Hi all, my follow up appointments went well. The Dr's are amazed at my recovery. My orthopedic surgeon can't believe how strong willed i am and my attitude. My medications are being adjusted. Will now be taking 600mg of gabepentine 3x's a day plus gradually stepping down on oxycodone, plus tramadol has been added. Dr and I are bother hoping the phantom pain goes away. I believe it will in time. See orthopedic again in 10 weeks. Saw plastic surgeon too. Got stitches from amputation removed and also had my ball and chain removed ( drain) yahoo. See plastic surgeon again in 4 weeks.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited April 2017

    Sounds like you are doing very well, DiV! I am taking 300mg of gabapentin once a day (in the evening) for my hot flashes. They haven't gone away completely, but it has helped. The other good news about it is that it helps you sleep

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited April 2017

    DIV...So good to hear from you. Happy that you are doing so well. Your positive attitude and inner strength are amazing. ❤️

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  • Dova
    Dova Member Posts: 16
    edited April 2017

    Hi all

    Thank you very much Peter for the info, I will definitely ask her MO to do the testing. He is a person of very few words, when I asked about a trail (Xeloda) he said he doesn't want to give her everything now and not have anything left for it if it comes back. So he didn't want to put her in it. So my guess his answer will be no than i can look into just paying for it.

    DiV glad to here you are doing so good that's amazing. Keep us posted on your recovery, take good care and rest

    Love you all

    Cristina

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  • JLBinPDX
    JLBinPDX Member Posts: 127
    edited April 2017

    Diagnosed less than two weeks ago with triple neg, stage 1, grade 2, 1.9 cm, doesn't appear to be in lymph nodes. I haven't been able to allow myself to add my stats to my signature in this forum yet, but I'm Julie, 57, healthier than probably anyone I know, no smoking, vegetarian, exercise, blah, blah, blah.

    Many, many hours I'm upbeat, positive, and even open to making new, important changes in my life like letting caring people into my life. Then today, it's more of a downer. Whoever wrote "knowledge is power" did not account for the fact that knowledge can also be overwhelming, scary, and burdensome. I'm a college prof and researcher so I know all about the importance of knowledge, but today, it's getting to me. I've now learned that triple neg means so many things that "basic" breast cancer doesn't. So now if I tell someone that I have breast cancer, I want to add, "AND it's triple negative so that's even damn worse!" I've read through many of your posts and they're so helpful--so thank you--but when I looked up the recommended, "Patricia Prijatel's Surviving Triple Negative Breast Cancer," and read Amazon's description, I almost lost it. I hear/read a lot of "and you can survive TN" and "a woman got remarried in her 50s" and "one ran a marathon." I did not think these were exception or big accomplishments, I thought all of these things were the norm. I've been on such a positive path and today is just a downer. I expect to do all three of those things if I choose (not ever getting remarried, though, so that's out). Why does it just seem like some hours only the bad filters in? I think I'll try to just live through those hours and move to the more positive hours. I just didn't realize until the last day that TN is overall more challenging, more risky, less fun, more prone to reoccurrence, ad na bunch of other crappy things we don't want. Sorry, venting today. I'll be fine in an hour, likely. I hope this is the place to add in the bummer posts along side the upbeat ones (my usual are upbeat, I promise).

    Julie

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