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Calling all TNs

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  • Poppy_90
    Poppy_90 Member Posts: 84
    edited December 2021
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    Merry Christmas to you too, Martaj and all!

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited December 2021
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    Wishing the best to all my TNBC sisters!

  • norcals
    norcals Member Posts: 208
    edited December 2021
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    Same to you Santabarbarian. I hope 2022 is a good year for all

  • FrackingHateCancerMPBC
    FrackingHateCancerMPBC Member Posts: 33
    edited December 2021
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    Hi Guys!

    Did someone say statins? I was looking at a September post I think. My heart has been racy the past month or two. I will intake with the new ONCO tomorrow. My Medical ONCO retired, is that a MONCO? No, it's an MO, right? Well, I do intake there, and I changed locations a bit too because well I'm in school now. A different school than before. Bigger School. Uc Berkeley. Go Bears! My stats are below and have not changed as they are DX stats. No new DX. Any advice on the RACY RACY heart? Did the red devil do me in after just one dance? Is that even possible? I mean, anythings possible I know. Certainly made me unable to walk for about a week, so ya know.


    Anyway, happy holidays to all! My Fat Graft is working out fine thank you very much. Someone PMed me about that but I never get those notices in time. I mean, fat necrosis, pain, lumps, numbness, lymphodema, etc. But that's everyone, right? And I do arm curls with little 5 pound weights. Those help a ton. Pain and discomfort are old friends at this point. Sleep is...well fleeting. That's par for the course too.

    I mean I'm staying alive and doing 3-D mamos now. If I live long enough maybe we can get some virtual reality mammos! 3-d mammos disappointingly have the same squeeze factor. That was my first question! But I mean, things are good, I am staying alive, we all are, that's what I've got and I've got it good! (I am stealing song lyrics). Anyway.

    What was all that I read about STATINS and TNBC? Anyone? I am in school most of the year, and CHEMO brain means I cant multitask like I use to be able to, maybe it'll come back but for now I can only really check-in during school breaks. Thanks again!

    Frackin out!

  • FrackingHateCancerMPBC
    FrackingHateCancerMPBC Member Posts: 33
    edited December 2021
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    OK so I am replying to my own reply...but...this is tai chi for insomnia related to breast cancer survivors. UCLA. so ya know, REAL. I don't know if I can post links, I'm trying:

    -------------------------

    https://www.youtube.com/watch?v=G-nNPJb73P0

    Tai chi helps breast cancer survivors with insomnia | UCLA Health Newsroom

    UCLA Health429K subscribers

    SUBSCRIBE

    A low-cost, widely available forming of movement meditation – tai chi – helps relieve insomnia symptoms in breast cancer survivors. A study led by Dr. Michael Irwin, a professor of psychiatry and director of the Cousins Center for Psychoneuroimmunology at UCLA's Semel Institute, found tai chi works better than medication and just as well as talk therapy, the "gold standard" treatment for insomnia.

    ---------

    So, this is youtube. I am totally going to start doing this. Like I said before, I do arm curls already and that does help too with the lymphedema. Also, the nerve damage pain, what's that one called again? Neuropathy? That seems helped by exercise and stretches as well. Not completely and it comes and goes, but the more active I am the better it is. That's my update! I've had a great semester of pain reduction with m,y new Kaiser Physical Therapist so I would recommend just getting one if you can through your health provider. For me, they're like personal trainers but ya know, doctor-like as well. Anyway, I may be spouting stuff everyone already knows, but just in case everyone doesn't and this helps someone. SLEEP try tai chi. I'm going to try it. My mom loves tai chi. She used it after back surgery to get back in shape. I was DX in Feb 2019 so I'm almost 3 years out.

    Thanks, guys! I keep meeting TNs everywhere, Seems I don't know anyone with positive receptors. OK my sample size is 2 right now on campus,. I am not counting breast cancer support groups where everyone is everything. Good night! Happy Holidays!

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited December 2021
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    I am catching up on reading, but happy to see posts from old friends - Meadow, Val, Sylia, Mountain, and more. You are among those who helped me stay afloat. <3

    I send welcomes, support and hugs to the new posters here.

    Marta, - my sympathy on the loss of your Mom. My own mom is gone 15 years, but she is in my heart forever. Her name was also Marta!

    Wishing all here a happy and HEALTHY new year!

  • martaj
    martaj Member Posts: 307
    edited January 2022
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    Happy New Year everyone. I hope it is a healthy one

  • Kayce234
    Kayce234 Member Posts: 87
    edited January 2022
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    Happy New Year to all! May 2022 be an amazing year for all of us :)

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited January 2022
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    Hello TNBC Sisters and Happy New Year!

    I see some familiar names on here posting some good updates, and I see new names.  I'm sending much love and prayers to all, and to the newcomers, I'm sorry you have to be here, and I'm glad you found a way to these boards, and the collective sharing of information, love, and friendship that transpires.

    I'm celebrating my 10-year healthy victory this week!  I guess I should really say I'm announcing it, because literally every day is a gift, not just the milestones.

    When I was on these boards, the women were amazing, and I looked forward to seeing updates from other Survivors who were years out from my diagnosis. So this is me doing that!  And in particular, I came across a SylviaExMouthUK on the UK Threads, and she is many many more years out from me. As well as someone by the name of Noni Jones, who sometimes posts on these TNBC boards, and Titan, the OG of the TNBC Forum, who kicked it off, and showed us how it's done!  I hope you can find continued encouragement from seeing annual posts from Survivors.

    I pray in 2022 we can all live a little easier, dream a little bigger, and love a little stronger.

    Love, Debra  💗

    image

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited January 2022
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    Wonderful Debra! Thank you for posting your milestone!

  • Kayce234
    Kayce234 Member Posts: 87
    edited January 2022
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    Ugh! Just tested positive for Covid. Supposed to have 2nd chemo on Tuesday. Anyone have to postpone once they started? Will I have to do extra, will it mess things up?

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    Kayce234 - So sorry you tested positive! How are you feeling? What, if any, are your symptoms? My fear is catching covid while in treatment.

  • Kayce234
    Kayce234 Member Posts: 87
    edited January 2022
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    serendipity. Everyone in the house has had same symptoms starts with sore throat then feels like a bad cold with lot of fatigue. Sleep seems to be the only thing that helps. Im pretty sure I'm moving to the upside and should be fine in another day or so

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    Kayce234 - hope you feel better soon!!

  • ckelly05
    ckelly05 Member Posts: 6
    edited February 2022
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    Hi All, I am a new member to the site, but have been reading posts and articles for the last 6 months since I was dx with TNBC stage 2 in August, 2.3 cm tumor with no lymph nodes involved. I wasn't ready to post anything, but reading others stories have been beyond reassuring and very helpful. I finish my last weekly Taxol tomorrow. I have had 4 bi weekly AC cycles followed by Taxol/Carbo weekly for a total of 11 treatments. I did have skip one weekly treatment and my DR decided not to make this up. I also receive Keytruda every 6 weeks and will continue this for 6 more months. I have personally found the chemo mentally and physically exhausting. I had a pretty hard time with both drugs, lots of fatigue and body aches. My DR also decided to 1/2 my dose for my last 3 weekly treatments. I have such anxiety about my dose being cut and skipping a treatment. I worry that this is going to effect my chances for a PCR and I know that is so important with TNBC. My Dr has assured me that I have received plenty of chemo. I hope this is true! Anyone else have to skip a dose or reduce your dose? I have my MRI next week and appointment with my surgeon to schedule my lumpectomy. Then at some point I will start radiation, don't know much about that yet. I know it will be much more tolerable than chemo, I sure hope so anyway. Well, I wish everyone well! Sending encouragement & support to all! Staying hopeful that my MRI shows my tumor has melted completely away. I want to watch my 3 kiddos grow up for many years to come. Take care.

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2022
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    Hi CKelly. I'm glad you've been around reading and found the site helpful. AND I'm glad you're almost done with the chemo part! WHOOHOOO! Celebrate that!

    Yes, pretty much everything about it makes one wonder, is it enough? But I think I would trust your doctor on it. My tumor was 1.5 cm and I had chemo after surgery. This was only 2019, not that long ago, but the standard of care has changed since then. I was supposed to have 4 taxotere/cytoxan cycles -- that was the only thing planned. I reacted to taxotere on 3 tries, so my MO switched me to AC x 4, dose dense. Unlike most people, he didn't follow that up with 12 taxol, and I didn't have Ketruda or carboplatin at all.

    So my stats, not much different from yours on the surface (I was 58, and it sounds like you are much younger, and that makes a difference.) But my MO at a large research hospital and well-respected cancer clinic treated me with much less than you got. Was I undertreated? I hope not, but it makes me think you were probably not undertreated.

    Good luck with the MRI. Please come back through and let us know what you find out.

  • ckelly05
    ckelly05 Member Posts: 6
    edited February 2022
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    Mountain Mia, thank you so much for sharing your story. I am 38, but otherwise sounds like our stats are similar. This makes me hopeful & positive that I have received plenty treatment. I am sure this is a concern of many of us on this journey. Everyone around me always tells me to stay positive & not worry. Don’t think the worst. Some days that is easier said then done. Some days it’s hard not to be fearful that one day this will come back & worse. You are right though, I will trust my Dr. I know that I don’t want to live always thinking eventually the other shoe will drop. Just going to try to take it day by day & continue living my life. Definitely celebrating my last chemo tomorrow! It‘s been a long road. I will check back in after the MRI. Thanks again for the support!

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2022
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    CKelly, I'm coming up on 3 years since diagnosis. As you probably know, for tnbc the first 3 years especially, and out to 5, is considered the danger zone -- most likely time of recurrence of that cancer. And after 5 years the probability drops sharply. I'm not a huge worrier usually and I don't have anxiety as an ongoing problem. But yes, I still wonder if that shoe will drop. I'm logical, practical, capable in math, not terrible at reading research... I tell myself I want to know all the possibilities because of that practicality. But really it's just my version of anxiety about the cancer. It's the *way* I fret. :)

    So I think your fears are really normal. And I also think the people who tell you to stay positive and not worry should shut up. It is THEIR way of coping with it, trying to shut you down so they don't have to think about it. Now, I'm just telling stories. I don't actually know what's happening. But if that is true, if they don't want to hear about it, remember that WE are here to support you. And if it's the case that WE can't help you, then someone will probably gently suggest you talk to your doctors about some medical anxiety help, with a therapist and/or with medication.

    Your day-by-day plan is a great one. That's as far as you can see, anyway. Tomorrow is a big day, so enjoy to the extent possible. See if you can plan some special treat to celebrate. You deserve it.

  • norcals
    norcals Member Posts: 208
    edited February 2022
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    CKelly05,

    The current standard of care for TNBC is so intense and so much more chemo than when I was treated (mid 2019), that you and all those receiving the current treatment, should be applauded for handling the current treatment. In fact, the one year between Mountainmia and my treatment, they added Xeloda as adjuvant for those that do not achieve PCR. I have read many other TNBC members who did not have the Xeloda kicker who are doing really well. In fact, when I got Xeloda, I was really upset that I did not qualify for the keytruda adjuvant trial, but so far (knock on wood, cross fingers and toes) I’m past the 2.5 years from dx and doing relatively well. I think all of us with TNBC hold our breaths until the 5 year mark.

    Celebrate finishing chemo. You deserve it

  • ckelly05
    ckelly05 Member Posts: 6
    edited February 2022
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    Thank you MountainMia and NorCalS and it's definitely very encouraging to see you both some years out of treatment & doing well. It is interesting how much the standard of care has changed even so recently. MO does think eventually with Keytruda that there will be less chemo given, that's her opinion anyway. I guess they just do the very best they know at the time & it also seems like many women have had successful treatment for many years. I always thought in my mind, man this is soooo much chemo. There were definitely days I just wanted to give up, I wanted to feel like myself again & not so crappy & drained. Some how I made it to this last day. I do sometimes feel mad & frustrated with people telling me to not worry & stay positive when they just can't possibly understand how this feels to go through. I have always been an anxious person that can over worry at times. So this DX has been scary at many times for me. I think hopefully as time goes on & I get more through the rest of my treatment, I will get continue to get stronger & more positive. I think reaching this milestone ending chemo brought my brain to, ok we are at the end, did this work? My MO has not felt my tumor in a couple months so I keep holding onto that for now. I will know for sure soon enough. I should have posted on here sooner! It feels good to hear from people who truly understand how this all feels. Off to my last chemo! A really good feeling. Hope you all have a good day. We can do it! ❤️

  • serendipity09
    serendipity09 Member Posts: 769
    edited February 2022
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    CKelly05 - I had the same treatment as you with the exception of Keytruda as that was approved for TNBC after I finished my initial treatment. I had three sessions left when neuropathy and vertigo-like symptoms started. MO had me skip two treatments and I only made up one of those. I thought the same, did I get enough chemo? In the end I had to trust her and go along with it. All of it takes its toll emotionally and physically.

    Congrats on the last chemo! It truly is a great feeling! Wishing you nothing but the best!!

  • Poppy_90
    Poppy_90 Member Posts: 84
    edited February 2022
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    CKelly: congratulations on your last chemo! Keep us updated—we are here for you.

  • ckelly05
    ckelly05 Member Posts: 6
    edited February 2022
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    Thank you Serendipity for sharing your story and words of encouragement. I am going to keep the faith that I have received enough treatment & try my best to keep positive. Thank you Poppy for your kind & supportive words!

    I rang that bell yesterday!!! My amazing nurses gave a few little speeches, brought me to tears! I wasn't expecting all of that to happen. It was emotional & wonderful moment. It was a very good day!

    Wishing everyone well! ❤️

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited February 2022
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    CKelly, glad you have finished chemo! That's a good feeling and you are right, rads is no biggie compared to chemo.

    If your tumor shrank to imperceptibility that's an excellent sign!!

    I am 3.5 years out w/ no issues. I continue to observe practices for maintaining overall health. I eat well (pescatarian), take D and a few supplements, exercise 4-5 x week, do intermittent fasting, and also the fasting mimicking diet every few months, so my immune system is ready for action if needed. The health practices have me about 15 lbs thinner, and feeling very good.

    Your worries are normal. But so is surviving and thriving after TNBC. Nerdy Glad you've introduced yourself!

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited February 2022
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    I realized I have good news to share.


    My daughter (actually my step daughter-- but I raised her and I claim her!) gave birth to twin girls this week. I am a grandmother!! One of the things I reallllly wanted to live for! I will go in 10 days to the NYC where she lives-- I'm doing a house swap for 3 months with a friend seeking sunny weather-- to be of help to her.

    One of my oldest and closest friends, who had NSCLC and lived in stage IV for an incredibly long time, told me when I started treatment, "keep your mind on your purpose for being alive." My purpose was "being a grandmother" and here I am!

  • ckelly05
    ckelly05 Member Posts: 6
    edited February 2022
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    Santabarbarian, Congratulations on the birth of your new grand babies!!! Twin girls! That is very happy news! Thank you for sharing your story. 3.5 years out, I can’t wait to get to that point. I am too going to try my best to eat healthy, take supplements, & exercise regularly. My kids are still young, I am normally working full time, & just so busy. I didn’t prioritize my health, but I know it’s so important & I have to find the time for me. I know I will still worry at times, but I definitely want to survive & thrive too! Thank you for the encouragement. Enjoy your time with the new babies!

    Getting through my last few post chemo achy days & I know it will slowly but surely get better from here. Can’t wait to feel more like myself again! Have a nice weekend all!

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2022
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    Congratulations, Grandma santabarbarian! Indeed she is your daughter, and they are your righteous grandbabies. And what a blessing for you all that you'll get to spend time with them at this tender moment. Best wishes for the whole family.

  • Poppy_90
    Poppy_90 Member Posts: 84
    edited February 2022
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    That is fantastic news, SantaBarbarian. Congratulations! Thanks so much for sharing and love the heck out of those baby girls. Hugs

  • maryjv
    maryjv Member Posts: 269
    edited February 2022
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    congrats!!! Such wonderful news, and your are right! We have so much to live for!!!

  • Kayce234
    Kayce234 Member Posts: 87
    edited February 2022
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    Congratulations! I have twin boys - they are the best! Bonus - two babies means no waiting to hold one ;)