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Calling all TNs

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  • Kayce234
    Kayce234 Member Posts: 87
    edited October 2021
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    8 days out from my surgery and I've been having low grade temps on and off and headaches. Assumed sinus infection and doctor has me on flonase, mucinex and anitibotic but not helping. Hoping it's just the stress or the actual cancer and not something that will delay surgery - already been waiting 6weeks. Anyone have these symptoms?

  • HopeHeal
    HopeHeal Member Posts: 137
    edited October 2021
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    Tumormamedeclyde, I am sorry your markers went up. I hope no large tumors are found and that whatever is is easy to diminish. Sending you healing dust.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited October 2021
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    Interesting vaccine trial - this fax is designed to prevent TNBC recurrences:

    https://gizmodo.com/a-vaccine-trial-for-the-most-aggressive-form-of-breast-1847963499

    Wishing all my TNBC sisters good rest and wellness!


  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited November 2021
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    Kayce, I had nightly fevers during chemo, toward the end of taxol. How did your surgery go?

    I had my final meeting with my MO last week!! I gave her a “card” that had two of my photographs inside(8x10’s). I wrote, “ you were the calm in my cancer storm, thanks for getting me through to the other side”. She choked up, I choked up, my husband choked up. Lol. We hugged. I’m on my own now!

    I came here to post the info about the triple negative vaccine clinical trial at Cleveland Clinic. https://my.clevelandclinic.org/podcasts/cancer-advances/triple-negative-breast-cancer-prevention-vaccine

  • simplelife4real
    simplelife4real Member Posts: 341
    edited November 2021
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    Hi All,

    I just wanted to pop in to say I recently passed my 8 year anniversary from a diagnosis of stage 2b TNBC. I had neoadjuctive chemo, surgery (ALND and lumpectomy) and radiation. I had residual cancer in two lymph nodes after the ALND. I've been NED ever since completing radiation and I rarely even think of breast cancer. I'm here to say that it can become a distant memory with time. I know I appreciated seeing posts from long-term survivors here while going through treatment, so I thought I'd return the favor and post here 8 years later.

    Wishing everyone the best.

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021
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    Simplelife4 - Congratulations! That's wonderful! Thank you for sharing. I love reading these types of posts; it gives me so much hope!

  • TigerGirl72
    TigerGirl72 Member Posts: 8
    edited November 2021
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    simplelife4 - your post made me want to cry. Thank you for the encouragement! This road is hard to walk but grateful to hear good news from those who have already walked it. Blessings!

  • mamacure
    mamacure Member Posts: 256
    edited November 2021
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    Thank you so much SimpleLife!! That really cheered me up. I was so down after positive nodes after my ALND.

  • norcals
    norcals Member Posts: 209
    edited November 2021
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    Simplelife4,

    Thanks for coming back and giving the rest of us encouragement. As someone who also did not get a PCR, it’s really good to hear from those who continue to do well.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited November 2021
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    Simplelife, yes, it is really heartening to hear about your long term wellness. Thank you for checking back in. Cheers!

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited November 2021
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    Simplelife! Cheers! and wishes for many, many more years checking in here with good updates!

  • meadow
    meadow Member Posts: 998
    edited November 2021
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    Hey all, just popping in to say Hi! I have been off the boards for a few years, and I wanted to let my old friends know I'm still kicking! I'm 8 years out from Triple Negative Inflammatory Breast Cancer, and 7 years from end of treatment, NED. This thread and the beautiful ladies were a significant part of my journey, my healing team. To all the newer ladies and gents, who aren't so new but new to me, I hope you are getting a lot of great support and info here. Do not despair, good health can be had again. Hoping everyone celebrating Thanksgiving has a great day. I am recovering from Covid and have lost my sense of smell and taste...why now?! I am vaccinated but had a breakthrough case. Another, Sylvia, Cathytoo, Val and so many more hope you are well!

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021
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    Meadow - Congratulations! Thank you for coming back and sharing. Sorry to hear about you catching covid, but I'm glad that you're recovering. I hope you get your taste back by Thursday, if not, then it's another reason to celebrate Thanksgiving again on another day. Hoping you continue doing well. Happy Thanksgiving!!

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited November 2021
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    Thankful for this forum and the supportive people here. Wishing the best to my TNBC sisters.

  • norcals
    norcals Member Posts: 209
    edited November 2021
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    Santabarbarian and the rest of the TNBC crew:

    Happy thanksgiving! Grateful to have you guys here to help deal with TN

  • martaj
    martaj Member Posts: 307
    edited November 2021
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    Good morning all,

    I hope you could all Thanksgiving with family and friends. My day was filled with sorrow and relief. My mother of 87 years died. I was so sad. She is not suffering anymore. Relief, was my year and half out MRI and Mammo was neg for cancer!!!! Wishing you all a happy healthy holiday season

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021
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    Happy Holidays to you all!

    Marta - I am so sorry for the passing of your mother! Sending you my deepest condolences. May you find peace in knowing that she suffers no more. {Hugs} I am truly happy that you continue cancer free!!

  • norcals
    norcals Member Posts: 209
    edited November 2021
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    Martaj,

    My condolences as well. Hugs

  • Poppy_90
    Poppy_90 Member Posts: 84
    edited November 2021
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    Martaj,

    I am so sorry for you loss. I hope you kind find comfort in your memories.

    Krist

  • Katiha
    Katiha Member Posts: 25
    edited November 2021
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    Just popping in to wish everyone Happy Thanksgiving.

    I am Thankful for all of you helping me during dark times.

    I hope you all keep doing well


    Kate

  • Valstim52
    Valstim52 Member Posts: 833
    edited November 2021
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    Dear Meadow so nice to see you. YOu really encouraged me when I first started on this journey. I just reached 6 years NED. I had the kitchen sink, I never thought I would get to the time where I rarely think of BC.

    To all, I give a virtual hug.

    Val

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,932
    edited November 2021
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    Hello Val,

    I was just looking at the TNS and saw your familiar name.

    I was so glad to read that you have now reached six years with NED. Congratulations.

    I am now over sixteen years since diagnosis, lead a normal life, but never take anything for granted.

    Take care and keep safe.

    Love and best wishes.

    Sylvia xxxx

  • DigMyPast
    DigMyPast Member Posts: 1
    edited November 2021
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    I am a co-caregiver of my best friend. We have been close for over 35 years. She has one child, a daughter. My friend lost her husband a year ago Nov 6th after an almost 10 year struggle with lung cancer that went to the brain and then palate of mouth. The daughter is a PHD who is a breast cancer researcher. My friend had put off medical care for 10 years to be with her husband. We finally got her going on doing her med catch up. Thus the mammogram…

    She was diagnosed about 45 days ago. It was a small contained tumor which the surgeon said he got it all. Not to worry. Stage 4 Metastatic Triple negative breat cancer. We tried to have them do a PET SCAN but was told it was not necessary AS IT WAS CONTAINED. About two weeks ago her hip broke for no known reason. Ortho-surgeon put rods in and sent sample of fragments to lab…two days later found out it was breast cancer in hip bone. Took another week but we got a PET SCAN. Maybe we didn't want to know but breast cancer in the bones. Radiation is over and doctors not recommending chemo. My friend is 75 years old. My question is:

    IS THERE A SUPPORT GROUP FOR TNBC with active cancer and their caregivers? My friend is great with me but screaming hateful things at her dear daughter…a day or two later she apologizes. Could this be dementia/Alzheimer’s? We are waiting for the 90 day waiting period for her long term insurance to kick in so her daughter can have more hours of help.

    Due to COVID the daughter has been able to work remotely. Her hubby is fending for himself and she and the granddaughter are living with my friend. I have been at all her radiation treatments and doctor visits. She asks me why her other friends are not visiting or helping. I told her that I would always be there for her way back when hubby got sick and I meant it. I cannot say why others are not but many are afraid of the big C and afraid of our pandemic…maybe that istheir reasons.

  • mountainmia
    mountainmia Member Posts: 857
    edited November 2021
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    DigMyPast, I'm very sorry for your friend and all who love her. It must be quite a blow to come from nursing her husband for several years, to finding out about her own diagnosis. As to having the PET scan sooner or later, it's not at all typical to be scanned or tested for metastases without symptoms of it. So the doctors who refused to do it prior to her hip break were following the standard of care. Also it's important to know that having the scan sooner would probably not have changed anything in her treatment.

    Your friend's anger and lashing out at her daughter could be dementia, or it could be pure anger at the "unfairness" of her situation. Who better to release it on than someone who will love her no matter what? If you're attending her appointments, you could ask her oncologist or the nurse if there are counseling services available. Also check to see if she qualifies for palliative care. This isn't the same as hospice. Here's a definition I found: "Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness." They can help her with arranging her LIFE support systems, regardless of how long she lives. Hospice is intended for people who are dying.

    Also here there is this comment thread, which you're welcome to use. THere's also a thread for Stage 4 TNBC patients, and there are threads for caregivers, too. If you need help finding these, please ask.

  • HopeHeal
    HopeHeal Member Posts: 137
    edited December 2021
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    MountainMia, I am glad you brought up the scanning. I was wondering why a scan wouldn't be necessary, wouldn't they show a met early? There are other MOs who don't believe in periodic total body scans either.

  • piperkay
    piperkay Member Posts: 132
    edited December 2021
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    I'm 3 years out from surgery, 2.5 years out from the end of treatment, and at this past Thursday's mammogram, the radiologist informed me that although I'll be back on an annual mammogram schedule for both breasts, they want me to start an annual MRI betweem mammos mostly due to having dense breasts and my history of BC. This is the first time I've heard of an annual MRI from any of my care team. Not quite sure why they want to start now. Any ideas?

  • cookie54
    cookie54 Member Posts: 750
    edited December 2021
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    PiperKay, Not sure as to why they are starting this now, but it's a good idea! With dense breasts it's it can be difficult to see abnormalities on mammo alone. Having mri being it's a cross-sectional image is definitely beneficial. On my first diagnosis I had a mammo in May and a couple months later mri which my mass was seen I also had dense breast tissue, so it's certainly worth it. Best wishes.

  • HopeHeal
    HopeHeal Member Posts: 137
    edited December 2021
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    Hi PiperKay, my team always makes me take an MRI when they do a periodic diagnostic mammo as it gives them extra info they can't seen on the mammo. My diagnosed mass was not seen until I had my first MRI, the dense tissue hid it on the mammo.

  • piperkay
    piperkay Member Posts: 132
    edited December 2021
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    Thanks, everyone. I pretty much knew that the MRI is better for dense breasts although my 8mm tumor did show up on my annual 3D mammo three years ago. Maybe the change is at least in part because I'm going back to annual mammos. Either way, I'm certainly fine with the added look since I'm also down to annual visits to the surgeon and semi-annual visits to the MO and all they do is poke and prod. LOL!

  • martaj
    martaj Member Posts: 307
    edited December 2021
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    Merry Christmas everyone. Have a great day, Keep on fighting