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Stage IV NED crew : lets support each other

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Comments

  • Bliss58
    Bliss58 Member Posts: 938
    edited June 2018

    Cfree123, thank you for the info on the YouTube video. Interesting and I'll take a look.

  • lauriesh
    lauriesh Member Posts: 82
    edited June 2018

    I had seen info about these copper trials years ago and I started taking zinc, which helps rid your body of excess copper. I have taken zinc off and on for the whole time I have been Ned - about 7 1/2 years.


  • heidihill
    heidihill Member Posts: 1,858
    edited June 2018

    Me too. This was on my radar. Thanks for the update. I would definitely consider this with the updated results if I were not already far into NED. The side effects at this point may not be worth it for me. Low red blood cell count is a side effect because copper is necessary to produce red blood cells. Lauriesh's way for getting around this by taking zinc sounds good to me. Cutting back on copper rich foods might be another way. I think copper also comes out with our sweat. I get  my daily sweat exercising and hot flashing.

  • momof3-123
    momof3-123 Member Posts: 13
    edited June 2018

    Great suggestions. Thanks for the responses! Hopefully I’ll join you ladies soon in NED. :

  • Vevs
    Vevs Member Posts: 81
    edited June 2018

    sounds very promising. I will add Zinc to the supplement list. Thank you ladies

  • Almosthere
    Almosthere Member Posts: 177
    edited June 2018

    Laureish I love to hear you are 7.5 years out. I am approaching 3 years. I am NED too with liver mets de novo. I just had dose 51 of Herceptin and Perjeta. I assume you are on q3 weekly Herceptin

  • lauriesh
    lauriesh Member Posts: 82
    edited June 2018

    I stopped h & p due to side effects in Jan, 2015. I have been on no meds since then.



  • daywalker
    daywalker Member Posts: 77
    edited June 2018

    Wow Lauriesh, you probably hear this a lot, but it is truly amazing that you are in remission without treatment. I am so encouraged by your story!

  • Bliss58
    Bliss58 Member Posts: 938
    edited June 2018

    For those of you taking zinc, how much do you take?

  • Vevs
    Vevs Member Posts: 81
    edited July 2018

    Bliss, I don’t know what we should be taking as far as Zinc dosage. The one I ordered has a strange strength, 22mgs. I also noticed that some Zinc supplements actually contain copper when you read the descriptio

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited July 2018

    I am on cycle 21 Ibrance 100mg/ Letrozole. Today's CT and bone scans plus CA15.3 are stable. No progression noted. Still NEAD, but always preparing myself..

    Wouldn't it be great if I get beyond the average time (24 months?) to progression on this combo?

  • LaurenH
    LaurenH Member Posts: 382
    edited July 2018

    hi all - I think? I am NEAD? I had a single met to the bone (rib) dx in Feb 2018, followed by 16 radiation tx and a combo of Faslodex & Ibrance (5 cycles) and Herceptin (6 cycles) . Pet scan today shows no new cancer and rib met is consistent with healing bone, not metastatic cancer. Is this NEAD? Have I arrived?

  • Almosthere
    Almosthere Member Posts: 177
    edited July 2018

    LaurenH Yes I believe you have! Welcome and we hope to see here until you are a real old lady.

    How did you discover the bone met years after original diagnosis you must have been discharged from routine follow-up...

  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited July 2018

    SandiBeach57, great news on "still NEAD"! I hope you'll have many, many months past the avg 24!

    I'm only on cycle 4. First scans since I/L will be next week. TM's have come down, not to good levels yet but I'm glad for improvement.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited July 2018

    It took about 8 months on I/L to get a stable baseline Ca15.3 (40s). My CT and bones scans showed NEAD at 10 months. So it is a slow process. My MO goes by how I feel, quarterly scans and monthly labs and Ca 15.3.

  • LaurenH
    LaurenH Member Posts: 382
    edited July 2018

    Thanks bstein - I'm so glad to be here! So I was still seeing MO annually - he ordered my breast MRI and Mammo (I had lumpectomy only) and he did a physical exam. He would order additional tests if I was having symptoms. In Jan of this year my breast MRI happened to show the spot on my rib, as it is rib 2 anterior and crosses directly over the top of my left breast (BC was on the right). He ordered a pet to see where else it was (no where else) which seemed odd, so he ordered the bone biopsy. It was positive for MBC of the original BC. In a way I got lucky that it was in the window of the breast MRI because I had no pain there at all (still don’t). I know they say early detection in MBC doesn’t matter but I believe it did in my case. I think it would have been harder to get to NEAD if I had progressed a few years further. I guess only time will tell if it stays this way.

  • Vevs
    Vevs Member Posts: 81
    edited July 2018

    Great news Lauren, so happy for you. I’m also staying with you all for a few more months, blood tests are all fine and TM’s stable. My Ca15-3 has never been raised only Ca125. Thankfully it has settled and I’m feeling well and back to normal life...fatter but happy

    Ele

  • tina2
    tina2 Member Posts: 758
    edited July 2018

    Lauren, yes--you have arrived. Brava!

    Tina

  • LaurenH
    LaurenH Member Posts: 382
    edited July 2018

    Thanks Vevs and Tina! Happy to be in such good company!

  • Bliss58
    Bliss58 Member Posts: 938
    edited July 2018

    Welcome Lauren! You're at the right place.

    Great news SandiBeach, and I'm trusting you'll have many, many months beyond 24!

    Hooray on your news, too, Vevs! I see in my calcium + D that I'm taking zinc and copper, so I guess I need more zinc to counteract that copper. Probably should go back to just calcium + D. Thanks for the info on what you're taking. The PA I see, who is a PhD, seems very "up" on these things, so I'm going to ask her to see what she knows next time I see her.

    MuddlingThrough, fingers crossed for good news on your scans. Please let us know.

  • heidihill
    heidihill Member Posts: 1,858
    edited July 2018

    Big welcome, Lauren! Great news, Vevs and Sandibeach, on still NEDing. 

    I take Zinc together with Vitamin C to shore up  my immune system when some bug is going around or I've been hit with one. It's a chewable with 5 mg Zinc and 500 mg Vitamin C. I take two or three if needed. The upper limit for zinc seems to be 40 mg. It can interfere with certain antibiotics though.


  • jackboo09
    jackboo09 Member Posts: 780
    edited July 2018

    Hi all

    I am in a panic. I was NED in early April with an excellence response to THP.

    I have noticed that my breast on the non surgery side feels odd. No lumps, redness or discharge. However it feels bigger and I have had some pain. The veins are also more prominent.

    What would this mean for me as stage 4. More chemo, an operation?

    I am so scared.

    😑

  • chrissyb
    chrissyb Member Posts: 11,438
    edited July 2018

    Hi Jackboo09, deep breath there lovely, as you are already stage IV and if it turns out to be progression or even a new primary, your treatment would definitely be a change while still receiving your herceptin or perjeta but not necessarily involve surgery.

    Your first step is to find out exactly what it is and that means an appointment with your doctor asap.........not because it's urgent but just because you are so very worried at this point. Peace of mind is everything and answers will go a long way to helping you with that.

    Keeping everything crossed that it's just an infection.

    Love n hugs. Chrissy


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2018

    Or hormones.

  • Vevs
    Vevs Member Posts: 81
    edited July 2018

    It could be heat related or an infection perhaps? We all just assume cancer and I know how dreadfully scared you must be so get it checked out. Lots of love and hope and hugs x

  • heidihill
    heidihill Member Posts: 1,858
    edited July 2018

    Best to see the doctor right away in case it is an infection. Sending hugs and calm thoughts.

  • jackboo09
    jackboo09 Member Posts: 780
    edited July 2018

    Thanks everyone,

    I now have an appointment at 10 am on Monday.

    I’ll post after that.

    Liz x

  • chrissyb
    chrissyb Member Posts: 11,438
    edited July 2018

    Good luck, Liz.❤

  • LaurenH
    LaurenH Member Posts: 382
    edited July 2018

    Good luck Monday, Jackboo.... someone said maybe hormones - which is also possible. Sending hugs and prayers. Keep us posted

  • jackboo09
    jackboo09 Member Posts: 780
    edited July 2018

    Hi guys,

    I have decided to wait until my next tx before having an examination. Not like me but I am sufficiently unconcerned as to postpone this check.

    Will keep you informed though.


    Thanks for caring.

    Liz

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