Calling all TNs

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  • adagio
    adagio Member Posts: 982
    edited November 2014

    inspired - how lovely to hear from you - we have missed you. Great to hear that you are feeling well, but sorry that you lost your pet - that leaves a big hole in the heart for sure. Saddened to hear about the loss of your sister in law - 42 is way too young to die. Look forward to hearing from you again soon

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  • Luah
    Luah Member Posts: 1,541
    edited November 2014

    math666: Thanks for posting all that - it reminds me of the soy controversy... and I believe the current thinking around that is that soy may be beneficial (not harmful) if taken moderately through diet, which I do. In any case, it sounds like your onc forgot () your wife is TN which makes all of this a bit moot anyways. Our cancers don't feed on circulating estrogen. Of course, TNs can always grow another, ER+ cancer but that's the case with every woman out there. Would he advise no flaxseed for everyone? I'd be inclined to take in my research on the next visit and challenge him on it, politely of course :)

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  • Radical2Squared
    Radical2Squared Member Posts: 460
    edited November 2014

    Inspired,

    Happy Thanksgiving! I can't wait for "life to happen" to all of us! Happy for you!

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  • BanR
    BanR Member Posts: 289
    edited November 2014

    Great to hear from you Inspired!! I love the way you so beautifully put it.."Life happened"!!

    Math: let me paste a link here

    http://scienceblog.cancerresearchuk.org/2014/03/24...

    I would recommend everybody to have a look at this. It is a logical article and covers most of the myths/fears/ doubts associated with cancer.

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  • Gramof2boys
    Gramof2boys Member Posts: 194
    edited November 2014

    Inspired, glad to hear from you! I wondered where you've been!! Life does go on, eventually. I just made my 1 year mark!! I had a CT scan last week and all is well! NED!! I'm trying to get back to normal. We just came back from Disney World with my kids and grandkids. It was a great trip and beautiful to see decorated for Christmas! Next week I will have stage 2 of my reconstruction surgery so I'm trying to get my shopping done. Hope everyone had a great Thanksgiving!!

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  • lilyrose53
    lilyrose53 Member Posts: 216
    edited November 2014

    Hi Inspired! Nice to hear from you again! So sorry to hear about your SIL. But I'm glad you are doing well.

    Hope you had a great Thanksgiving! Hugs, lilyros

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  • slv58
    slv58 Member Posts: 1,216
    edited November 2014

    Debra, we have all missed you but glad you are getting on with life! This is something we all aspire to and I find I am achieving this one step at a time. It's hard to believe that one day you realize that cancer has not been on your mind constantly. Hope you and everyone had a nice thanksgiving!

    I'm sorry about your SIL, this is such a cruel disease. Stay strong

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited November 2014

    Glad all is well Inspired! I too am sorry about your SIL and dog. One of our dobermans is a little over 9 and is slowing down a bit and her arthritis is catching up. She's okay but it's hard seeing her slow down so much. Anyway so glad you're doing well. Thanks for checking in!

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  • Radical2Squared
    Radical2Squared Member Posts: 460
    edited November 2014

    BanR,

    Thanks for the article! Very well written with some great links. I'm getting a little tired of being told I should try cannabis oil by one friend while simultaneously being admonished for eating a Snickers by another friend! Lol

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  • Tobycc
    Tobycc Member Posts: 789
    edited November 2014

    anyone been on the CMF regimen? Saw MO this morning for 4th scheduled taxol. Said no way no how due to same darn reaction as I had with taxotere.....hand foot syndrome, rash all over, can't walk well

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited November 2014

    Toby, - I was on cmf in 2000. It was fine. I didn't lose my hair, continued to work, and most people never knew I was undergoing treatment. My infusions were on Thursdays, and I was able to work on Friday, and then had the weekend to rest up.

    Hope you find it that way, too!

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  • MomMom
    MomMom Member Posts: 523
    edited November 2014


    What's CMF, and under what circumstances is it given to triple negs?  Thanks!

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  • Tobycc
    Tobycc Member Posts: 789
    edited November 2014

    it is Cytoxen, methotrexate, and Flourouracil. I can't do adriamyacin due to heart issues, and my allergic reaction to the taxol family isn't healthy or tolerable.

    My doc consulted some "experts" from around the country to determine this course .

    AnotherNYCity....that is GREAT news!!!!!!!

    Karhryn

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited November 2014

    Hi Everyone,

    I wanted to post a quick update. My Sister-in-law did not pass away from breast cancer, she's never had that. 2 years ago she had a double brain aneurysm. She was not expected to make it through that original night - yet she persevered and survived. She had a series of brain surgeries and had made remarkable progress. Learned to walk and talk again, had very little memory loss. Had improved significantly and started using a cane and walker. She went into the hospital for a surgery to correct something and help ease the headaches she had been having. The surgery was expected to be a typical surgery for her, not any higher risk than the previous ones. This last surgery (last week), during surgery a blood vessel popped and she passed away during surgery. It was a shock to everyone. I just wanted to post this update as I wanted to make sure everyone know it was not from breast cancer.

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited November 2014

    Inspired....I'm so happy to see you back here again. I'm sorry to hear about your SIL and your pet. I'm glad things are going good for you. I had been thinking about you. Hugs.

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  • jenjenl
    jenjenl Member Posts: 948
    edited November 2014

    I am really curious about my genealogy, no particular reason. Has anyone used ancestry.com?

    The pain under my right breast is concerning me but i will have answers soon enough - scan on Wednesday. I keep telling my self that I had a mx, radiation, diep recon and that generates a lot of scar tissue which can hurt. It's not actually a lump i have but pain right at the bottom on my breast where it connects with the ribs. Doesn't hurt all the time but isn't getting better and maybe a little worse...so on and off. I have a dinner planned with a friend that night so it will be a good distraction. My mom and dad come down the next day for a long weekend for an early xmas. A clean scan would be the best gift I could get.

    Off to go roller skating with my daughter...go go go!

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  • JJ62
    JJ62 Member Posts: 65
    edited November 2014

    Ancestry is great, and a bit addictive. I have supplemented that with google searches- for lost cousins of my parents who's obituaries are available on line, more recent info that ancestry doesn't have. It allowed me to connect with long lost second cousins, who it turns out are also BRCA 1 positive. I am glad to be able to explore and share my findings. It turns out they already knew about the mutation.

    I hope scan is clean! Happy roller skating!

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  • Teka
    Teka Member Posts: 10,052
    edited January 2015

    Good Evening, Oldies and Newbies!!

    I last post in March and April on behalf of FierceBluebird, who passed away in July.

    I always find myself during Thanksgiving weekend remembering the members that passed away.


    image


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  • Radical2Squared
    Radical2Squared Member Posts: 460
    edited December 2014

    Jenjen, like jj I am an ancestry addict. I've been tracing my tree since I was 12 and even had Italian cousins from Australia come stay with me when I was 15. At this point I have over 4000 family members in my tree and have traced some ancestors back to the 1500's in Germany.

    When I found out I had the BRCA mutation, I easily contacted anyone else from the lineage I traced the gene down from and they could choose to be tested or not. Only one other (4th cousin) already knew about and has our 2000 year old mutation... I don't know if any others have since been tested.

    A warning about ancestry.com... I find I sometimes prefer the stories of my dead relatives to the current stories of my living family!

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  • jenjenl
    jenjenl Member Posts: 948
    edited December 2014

    Wow Radical, if it's addictive I should probably stay away!

    I'm starting to worry about the upcoming scan. I'm going through the process of preparing myself for bad news and then I start thinking STOP IT. Ugh this is complete mental torture. I won't stick my head in the sand but I so want to! Thank goodness for sleeping pills.

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  • eileenpg
    eileenpg Member Posts: 467
    edited December 2014

    Jenjenl F=False

    E =Evidence

    A=Appearing

    R=real

    You know nothing until it happens. Stay in today

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  • Radical2Squared
    Radical2Squared Member Posts: 460
    edited December 2014

    ooooooo! Nice Eileen! That must be hung on my wall!

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  • Saile
    Saile Member Posts: 5
    edited December 2014

    Hi All,

    My mother was diagnosed with Triple Negative Breast Cancer in 2008, she had lumpectomy, six chemos and radiation. Since then she was doing well until this January when she was diagnosed with lung mets. She had 8 rounds of taxol and carboplatin chemotherapy. The chemos got over in June end and the scan showed improvement. Suddenly on 1st November she had a seizure which made me took her to the neuro and he asked for immediate MRI, which showed brain mets. The doctors had started decmax (steroid) and whole brain radiation(WBRT), with 37.5 cGY in 15 fractions. Currently she has undergone 14 fractions with manageable side effects and tomorrow will be her last radiation.

    Doctor's told me even after radiation the chances of her survival are dim. She has very less time in her hands. It feels like end of the world when you hear those comments from doctors and in a era when science has improved so much. But since she is TN, the options are less and cancer is more turbulent.

    I would appreciate if any one can help me with some suggestions, I have heard miR-708 work for people with TN. Anyone having any idea would be appreciated.

    Thanks

    Saile

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited December 2014

    Saile, I'm sorry about your mother. Sorry I can't be much help but wanted you to know I'm thinking of you.

    Jenjen, hoping and praying your scans turn out ok today. Update when you can please.

    I was in the ER last night from 7:00-3:00. I've had lower left abdominal pain for several days and started vomiting last night. So I panicked and went in. They think it's gastroenteritis because all blood work was good except a very slight elevated white cell count. The ER doc mentioned diverticulitis but didn't think my symptoms and lack of fever warranted a CT scan. I had a colonoscopy a year ago and it showed no abnormalities. But if I get worse she said to come back in. I hate that! But I'm no doctor. I should've listened to my hubby instead of exposing myself to God knows what in a packed ER waiting room BUT I was already panicked thinking some sort of mets. So I didn't listen to him and went in. Ugh! I hate how cancer robs us of our security. Now I just pray I don't end up with something worse than what I went in for. Anyway hoping we all have a good day today! Thanks for reading.

    Love you ladies and guys too!!! XO!!

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  • Wrenwood47
    Wrenwood47 Member Posts: 73
    edited December 2014

    Metformin inhibits metastasis of triple negative breast cancer cells

    Posted: November 9, 2014

    News type:
    Breast cancer study
    Conference:
    Proceedings of the 2014 AACR Annual Meeting
    Study name:
    Metformin inhibits angiogenesis, local and metastatic growth of triple-negative breast cancer by targeting two classes of adipose tissue progenitors

    Metformin is a drug used to treat type 2 diabetes and metabolic syndrome, conditions that increases breast cancer risk. Diabetic women taking metformin have been shown to have lower breast cancer risk and better response to chemotherapy than diabetic women not so treated. Metformin appears to reduce risk of breast cancer by lowering circulating insulin levels and reducing cell proliferation.

    In established tumors, metformin promotes apoptosis (programmed cell death) and inhibits angiogenesis of breast cancer cells. Studies have reported anticancer effects of metformin in all breast cancer subtypes, including in chemotherapy-resistant cells. Patients using metformin for type II diabetes or metabolic syndrome have improved breast cancer survival. However, metformin appears to be particularly active against triple negative (ER-/PR-/HER2-) breast cancer. Now a new study presented at the 2014 American Association for Cancer Research (AACR) Annual Meeting has described how metformin reduces triple negative breast cancer angiogenesis, growth and metastasis.

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  • Radical2Squared
    Radical2Squared Member Posts: 460
    edited December 2014

    Sailes,

    I am so sorry.... once you get to the point where your mother is, 1st ask her if she wants to try anything possible (it's hard to hear but sometimes your wishes might not be hers.) If she's game... get on the Internet and search out every cancer center studying triple negative breast cancer. Start local and get more broad and get on the phone to ask about clinical trials.

    Example: 3 years ago Sloan did one where you had to be triple negative stage 4 with bone Mets. I know of a girl who was in the trial and though her bones are still riddled with tumors, they have all shrunk and continue to do so....

    Another: Abrahmson Cancer Center in Philly (where I go) was looking for stage 4 triple negatives this summer. I'm not stage 4 and don't know if they are still looking or how far you are...

    These studies are going on all the time and they are not a guarantee but if you're out of options, doing the legwork to find one is your best bet.

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  • Teka
    Teka Member Posts: 10,052
    edited January 2015

    Wren,

    Thank You for the information!

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  • BanR
    BanR Member Posts: 289
    edited December 2014

    hi Saile

    sharing a very recent news article. it talks about a vaccine which slows down metastatic tumor growth in bc patients.

    do have a look and discuss with your doctor..

    http://www.shape.com/lifestyle/mind-and-body/new-b...


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  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2014

    Hi Teka! Happy belated Thanksgiving. I don't post too much anymore other than when I have something of real substance to say (which is rarely, lol!), but wanted to send out a hello to you!

    Linda

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  • lilyrose53
    lilyrose53 Member Posts: 216
    edited December 2014

    Saile - So sorry to hear your mother has brain mets. This disease sucks! Try going to the tnbcfoundation website. They have quite a few people on there with mets and lots of helpful information about ongoing studies. Good luck to you and your mom. Hang in there.

    Hugs, lilyrose

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