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  • simplelife4real
    simplelife4real Member Posts: 341
    edited March 2014

    Cat/Tina, I also want to add how heartbroken I was to hear your news.  I can only imagine that you are still reeling from the news and trying to adjust to your new "normal."   I do hope you continue to post here to keep us up on how things are going for you.  We are here to support you.  I also hope that you find lots of support and good information from the gals on the stage IV threads.  

    Bluebird, I'm glad your test went well.  That was a hard one.  I hope you get your results quickly and that everything is okay.

    BanR, I have read about cancer stem cells.  I think they are the root of the problem, particularly for us TNBC gals that have no targeted therapies.  They are bad news.

    For everyone else...I'm wishing each of you the best.  I'm so glad this thread is here so we can support each other.

    Hugs,

    Kay

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited March 2014

    Cat so sorry you got this bad news.   Hoping whichever  trial you go on will work its magic down that bumpy road towards NED.  We all know what its like when we worry about our family and they worry about us. As everyone says please stay with us.  This board would never be the same without you but what ever you decide remember,  always in your pocket.  Love you girl. Sending big warm fuzzy hugs and lots of strength. xx        

    Bluebird so thankful that you got 100%.  Terrific news.  Time for some retail therapy.

    Clyn607 welcome to this thread but sorry you have to be here.  My grandmother also had left BC (same as me) and passed when she was  86.  I'm not sure if they even knew about TN then so not sure what type her cancer was.  Sending hugs to you.  

  • simplelife4real
    simplelife4real Member Posts: 341
    edited March 2014

    Cat/Tina, 

    I had taxol weekly and it wasn't bad.  Maybe it will be easier for you this time around since you will be having it weekly instead of DD.

    Thinking of you.

    Kay

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited March 2014

    Here is an article on the theory of cancer stem cells - I didn't know much about it, but this article was easy to understand and gave me a better understanding of it, it explains the difference in the cells.  One thing that I found interesting was that the article mentioned cells going into hibernation during chemo and therefore chemo bypassing it.  When I went through chemo, my Onc was extremely adamant that I not start eating blueberries, or supplement or juicing or anything that might put a cell dormant.  He said for this very reason mentioned in the article, that we want all cells to be found by chemo, but some supplements and other items can mask them, and he called it similar to turning off the lights.  I waited until chemo was over to start blueberry/kale smoothies.

    http://ludwigcenter.stanford.edu/overview/theory.h...

    Here is another excellent article about breast cancer stem cells in a tumor, first discovered in 2003, (very recent then) and the role and effect they think they have on breast cancer.

    http://www.mcancer.org/research/stem-cells/breast

    **Article also talks about brocolli and curcurmin reducing stem cells in labs! Note, when you read the second link, notice they are talking in reference to advanced breast cancer, so keep that in perspective.

    Also, I just google'd "sulforaphane supplements" and may start thinking of taking some of these.  I have been eating quite a bit of broccoli, but some days it's hard to get it into the daily mix of things to eat.

    Here is an interesting article on the supplement of broccoli - seems it might be hard to get the best form of it that mimics the broccoli the best - so read the article before deciding what product you want to try, if you are going to try any broccoli supplement.  http://www.nutraingredients-usa.com/Research/Broc...

    Article mentions a few top producers in the sulforaphane market ... here is one that supposed to be amazing ... but I'm a little hestitant based on the photos of the office, certainly that is not the lab, right?  It looks a little rinky dink, but supposedly this is one of the best!  http://accunature.com/store/products/broccoplus/ I will research in detail about these supplements and report back when I have more information! 

  • Titan
    Titan Member Posts: 1,313
    edited March 2014
    Sick

    Cat!  you don't need to leave our thread....I'm sure you noticed that we have women/men of all stages...the only "requirement" is being tn...lucky us....

    On another note..I will be 5 years out this month on 3/20 (date of surgery)...had biopsy the saturday before, diagnosed on wed and had lx on Friday...I was told the surgeon NEVER does surgeries on Friday's but he did for me....guess I was special....

    I don't think that the 5 years out is the "magical" number but I will take it...they have been a good five years...my daughter graduated from college and got married..(no grandchildren yet)..my son is graduating from college this May (on the 5 year plan)...now I'm more worried about him getting a job!  My husband and I are enjoying our empty nest..sometimes too much..lol....we are never home and are busier than ever......it does get easier for the most part...sometimes I feel a little fear but I quickly squelch that thought.....will worry about it when I have time.

  • navymom
    navymom Member Posts: 842
    edited March 2014


    Congrats, Titan.  I just loved your last line..."will worry about it when I have time" 

    Prayers to all of the gals going through bad times.  I hate cancer.  I hate cancer.  I hate cancer.

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited March 2014

    Titan, congrats on a very special 5 year celebration this Thursday the 20th! Yes, you are special and it looks like your surgeon knew just how much!

    I echo what NavyMom posted - prayers to everyone going through a difficult period right now.  

    Bluebird, hope you are doing well in your recovery at home. 

  • simplelife4real
    simplelife4real Member Posts: 341
    edited March 2014

    Inspired, I've tried juicing broccoli sprouts and might go back to it.  The taste of them is pretty strong even when I add other things to it.  The sprouts are supposed to have many, many more times potency than the grown veggie.  

    Titan, thanks for starting this thread, and CONGRATULATIONS on your five years.  I hope to be where you are five years from now.  In the meantime, I also plan to stay busy doing the things that I love and living as healthy of a life as I can.  

    Bluebird, do you know when you will be getting your results?

    Cat/Tina...I've been thinking of you all weekend and wishing you the best.  I hate what has happened with you.  The reality of this disease is that it sucks.  I'm really hoping the chemo goes much easier for you this time with taxol.    Do they have a specific number of rounds they plan to do, or will they continue with it as long as it is helping?    I did weekly taxol first and I very gradually had hair thinning...never lost it all over 12 weeks of it.  It made me tired toward the end, but neuropathy was mild and no bone or joint pain at all.  The weekly infusions seem to be much easier than the dd infusion of taxol in terms of SE's.  Sending loving thoughts your way....(((hugs))). 

    Kay

  • Luah
    Luah Member Posts: 626
    edited March 2014

    Titan: Captain of this most excellent thread... Congratulations on your 5-year anniversary. You are our inspiration!

    Though I don't post much anymore, I am always so sorry to hear of recurrences among the ladies here... please know you are close to my heart...my best hopes and warm wishes for tolerable treatments, followed by remission, and years of good health.   

      

  • Stupidboob
    Stupidboob Member Posts: 330
    edited March 2014

    Hey Gang,
     Wow am I behind.   I hope to get caught up but please do not beat me with a wet noodle, if I skip over something.   First I want to say I hope all is well and if I missed something extremely important someone will let me know.     Second have any of you heard of H-86 (I am reading on it now) someone Face booked me a message about it. 

    A little catch up and forgive me if I repeat.  My colonoscopy and endoscopy had to be moved because they could not access a vein so I have to go to the hospital to have it done.  I wanted to do both the same day so I have to wait until there is not cramping (due to inflamed colon).  I should have it at the end of this month.  We shall see.    My brother had his surgery on February 14th and he came home for a few days and had a set back and went back in the hospital and then they sent him to a rehab and so he just got home Friday.   Depending on if the medicine can fix things he may or may not have to have a defibrillator put in. 

    I go to see my oncologist the end of the month..............though not sure why............they don't do anything except examine me......

  • journey4life
    journey4life Member Posts: 223
    edited March 2014

    Titan - congratulations! I look forward to saying that one day!

    Cocker - heard anything from our gambling Kathy? I hope everything's okay...

    Cat and Fighter - thinking of you both and sending strength to help you fight. Please visit when you're able to let us know how you are.

    To the newbie(s) - glad you found us. We all need what this group offers - support, compassion and knowledge just to name a few...welcome!

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited March 2014

    Journey no nothing from that gal who has gone AWOL.  She will probably tiptoe back in here shortly with all of her news and hopefully news of her casino wins. 

    Titan - great news.  I have been waiting for March to come around cause I knew it was five years.  Now you are over the hill {{{just sayin}}} and can put this dreaded cancer further back in your mind.

    Cat how are things going with you.  I'm sure the next lot of treatment will kick this to the kerb once and for all.  Big hugs.

    Stupidboob good to see you posting.  Glad your brother is doing ok now.   You say you now have to have your gastro/colon in the hospital now.  Do you mean you wasn't going to have it in the hospital all along, surely not the doctors surgery.  Where else could you have it done. We always do ours in the hospital here.   

    Have a good day ladies. Thinking of you all, going through treatment or not. Big hugs.

  • LPBoston
    LPBoston Member Posts: 73
    edited March 2014

    Cat - lots of hugs and prayers coming your way. 

  • LPBoston
    LPBoston Member Posts: 73
    edited March 2014

    Has anyone heard from Curlylocks?  I know she was starting treatment in February.  I haven't seen her post in a while and am worried about her.  Thinking of you Curlylocks if you are out there!

  • Titan
    Titan Member Posts: 1,313
    edited March 2014

    thanks everyone for the good wishes..glad to be over the hill...just want to take a minute to remember some old friends on here..Jenn, Blonde Lawyer, Suze, Laura, Mary and Just Payton and many others...I miss you guys soo much....you were always, always there no matter how badly you were feeling...will never, ever forget you.

  • Stupidboob
    Stupidboob Member Posts: 330
    edited March 2014

    thanks Cocker.............the gastro we use have their own center where they perform them.   A lot of the bigger places here are building their own centers.  

    when I went to the ER a few weeks ago, they could not get a vein either, and so they sent in the artery specialist and she could not get it from an artery either, they could not get my port to work.  I think that was part to having it flushed and for some reason that time it swelled up some, I really think that the girl did not hit it correctly.  So, they kept at it until they got just enough to blood to run test (I mean a very little amount) and one shot of pain meds via IV and then they could not get it again.  Since, chemo I have gotten so much harder to access.  I told them at both places to take it from the feet, but for some reason no one likes to do that and most the time if it is done the doctors do it.  

  • TifJ
    TifJ Member Posts: 804
    edited March 2014

    Can't forget Karen (OBXK).

  • FierceBluebird
    FierceBluebird Member Posts: 463
    edited March 2014

    STILL READING AND THANK ALL OF YOU. BRAIN NOT WORKING QUITE WELL YET, BUT USING ALL CAPS HELPS IF YOU DON' T MIND ME SHOUTING AT YOU. IT JUST TAKES SO LONG TO FIND THE KEYS OR PUNCTUATE SO THIS HELPS ME POST FASTER. GETTING STRONGER EVERYDAY AND WILL UPDATE YOU ALL AGAIN SOON. HUGS TO EVERYONE AND THANKS FOR ALL THE POSITIVE MESSAGES. LOVE AND HUGS TO THOSE WHO NEED EXTRA. AND HAVE THEIR OWN BATTLES RIGHT NOW.  WILL SEE DR ON WED AND HOPEFULLY HAVE A PLAN. GOT ALL THE TUMOR AND ALL SCANS CLEAR. HOORAY!

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited March 2014

    REPOST FROM INSOMNIA THREAD :) HI FOLKS DOING THIS FOR BLUEBIRD IT WILL REALLY HELP HER. SASSY

    BLUEBIRD.........IT LOOKS LIKE YOUR SIGHT IS GOOD.....WHEN YOU SAY IT IS AND YOU DON'T HAVE TO WEAR GLASSES TO SEE... WE WILL GO BACK TO NORMAL

    IF YOU HAVE TO WEAR GLASSES TO READ ......YOU SHOULDN'T HAVE THE GLASS ARMS ANYWHERE NEAR YOUR INCISION........ CAN BE CAUSE FOR INFECTION

    LARGE PRINT WILL HELP YOU BE ABLE TO READ WITHOUT GLASSES.

    MAY TAKE A FEW DAYS FOR EYES TO FOCUS RIGHT

    ZIGGY AIN'T WHISTLING DIXIE......YOU SHOULD HAVE SEEN MY TYPING AFTER BRAIN SX IN 2012......TOTALLY NEEDED THIS.......

    SPELLING.......OMG.........NOT EVEN CLOSE.........BUT EVERYONE HAD A GOOD TIME TRYING TO FIGURE OUT WHAT I WAS TYPING

  • journey4life
    journey4life Member Posts: 223
    edited March 2014

    remembering Dawn (Inmate) also...

  • TifJ
    TifJ Member Posts: 804
    edited March 2014

    Thanks for the reminder Journey- we will never forget Dawn. What a shame it is there are so many, we have trouble remembering names sometimes! Let's blame it on chemo brain.

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited March 2014

    Hi All,

    Hopping in as I knew our loyal leader Titan has hit the 5 year mark. Congratulations are in order. 

    I also have been thinking of Suze, Dawn, MJ, Love Irving,  Laura and now Karen and  everyone else that Titan mentioned. We all   know what a tough battle this is.

    I will be 3 years in October and so am not on here often but this site was my life-life in 2011. I want to thank you all for that.

    Love to all.

  • journey4life
    journey4life Member Posts: 223
    edited March 2014

    Wow, how unreal...after Titan's remembrance, I started to think about the ladies who've been on the thread around the 2012-13 mark...

    Painting, you were one of the first ladies I thought of! And now you've posted! I'm thrilled to know you're doing well and glad you checked in. 

    I hope some other "oldies" will also check in...it'll be like a family reunion!

    I'm with you, Tif - chemo brain at its best.

  • christina1961
    christina1961 Member Posts: 450
    edited March 2014

    Cat, I really hate hearing this news.  I was so hopeful that it would not be a recurrence.  There is a mets thread on the triple negative foundation.org website tnbcfoundation- dot - org. They discuss specific chemos and I think there is one woman on there who may have been on that same trial.  

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited March 2014

    Hi Everyone!  I often visit the Calling All Triple Negative Breast Cancer Survivors in the UK forum, to see what additional information I can read about nutrition and health.  I came across an excellent post from Sylvia in Sept, and so I'm attaching several of the links and I've listed them with the title of the page it takes you to, so that you can decide which links are of interest to you. Lots of information, so I haven't read through it all, but looks to be a little something for everyone. If you don't know Sylviaexmouthuk ... she is an 8 year survivor of a very large TNBC tumor!  

    I'm also starting the post with one of my very favorite reference links in lifestyle management.

    "Practical Principles of Some Lifestyle-oriented Breast Cancer Risk Reduction"

    1. It is you and your body that beat cancer

    "Living Proof You Can Beat Cancer" - Link to Book Titled: "Everything You Need to Know to Help You Beat Cancer"

    2.  You have the potential to increase your own survival

    "American Cancer Society and Complementary Therapies"

    "Light Daily Exercise Prevents Cancer and Increases Cancer Survival"

    "‘Bioactive’ Foods Tackle Cancer Stem Cells"

    "Is Curcurmin a Natural Cancer Treatment"

    3. Ignore your friendly gut bacteria at your peril

    "The Microbiome"

    4. To survive cancer longer, cut your glucose and carb consumption

    "Starving Cancer Cells with a Ketogenic Diet"

    "Hyperbaric Oxygen in Cancer Treatment"

    "Research shows Ketogenic Diet and Hyperbaric Oxygen Therapy in combination prolong survival"

    5. Stop the spread of cancer

    "Resveratrol - Many Actions Against Cancer"

    "Sodium Bicarbonate Increases Tumour pH and Suppresses Spontaneous Metastases"

    "Aspirin, Eicosanoids and Cancer"

    "Vitamin D 'Enormous Potential to be Cancer' "

    6. Stress management helps you survive 'significantly' longer

    "Stress, Mental State and Cancer"

  • gillyone
    gillyone Member Posts: 495
    edited March 2014

    I have just looked at the first article and am not impressed at all. Even the site it is from does not instill me with confidence - junk science indeed. I found the article very condescending, sarcastic and "fluff". Not a science article at all, and in my opinion, not worth reading. All the other articles are from canceractive which was mentioned in the first piece. I have to also say that I used to visit Sylvia's thread, as I am a Brit living in the US and left as I found myself questioning some of the information there, which was not appreciated. Sylvia is a very nice lady with excellent intentions, but, for me, the thread was a bit too alternative. But if that's what you like - it's a great place to visit.

    Inspired - thanks for caring about us to share the information.

  • gillyone
    gillyone Member Posts: 495
    edited March 2014

    Titan - great to see your recent posts. Navymom and I will be right behind you. It is sad to see names of those who are no longer with us, but I'm glad you did. We don't forget, but we don't talk about them openly very much. Navymom and I knew Jenn very well as she was the "leader" of our chemo thread. Others I met here. I remember how sad it was for Blondelawyer. She was young, her husband had died recently (then) and she was all alone with her stage IV dx.

    I hope newbies don't get freaked out, as most of us do survive. But this is the reality too.

  • allydp
    allydp Member Posts: 361
    edited March 2014

    Hi everyone, I just love this thread! 

    I'm 33 years old and was also diagnosed at the age of 33. Triple negative, IDC, 2.4 cm, stage IIa, grade 3, node negative. I found a hardening 3 months prior, but thought I'd keep an eye on it as I've always had fibrous breasts. Even had a clear mammogram in 2012 after finding a suspicious lump. Thanksgiving, Christmas and New Years all passed and time slipped away from me. By the time I felt it again in January, there was a definite lump and it felt very different from anything I'd had in the past…deep, against the chest wall, firm, immovable, etc. 

    Hubby and I had done two IVF's in 2013 in hopes of conceiving our first baby, so I was sure it was ER+ or PR+, but low and behold, it came back triple negative and had nothing to do with any of the fertility drugs I took. (Although I can't shake the feeling there's still a connection!) 

    My onc originally suggested neo adjuvant TC for chemo, but after much research and several opinions from onc's at Sloan Kettering, I decided to go with the big guns and do ACT - ACx4, Tx12. I'm an all or nothing person, so this route made the most sense to me. Still went the neo adjuvant route since I could start chemo sooner than surgery. I just couldn't sit around doing nothing any longer! I'm a week into round 2 and despite a few symptoms creeping up, I feel good. I've decided to go with a BMX with expander/implant reconstruction, which is happening in August. I'd love to do the DIEP, but I'm intent on carrying a child after I beat this thing and was also told I was too thin…although after this chemo, that might change. Grr. 

    I'm waiting on results of genetic testing, but the counselor gave me a 66% chance of carrying the BRCA gene. My paternal aunt was diagnosed triple negative in her early 40's, after having 3 children. She had a recurrence in her 50's, but is now a long-term survivor at the age of 71! She and I are the only females on my father's side, so 2 out of 2, BRCA would make sense. But there goes my theory on the fertility drugs! 

    Just this week I mustered up the courage to feel my tumor again and I'm ecstatic to say it's definitely smaller! Such a huge relief to know the chemo's working! 

    Wishing you all the very best. 

  • allydp
    allydp Member Posts: 361
    edited March 2014

    Sorry, ladies. I just realized there's 800 pages to this thread! I only noticed the first few with the introductions. Apologies for my lengthy intro post!

  • tekwriter
    tekwriter Member Posts: 74
    edited March 2014

    Allydp I am following the same routine as you.  My tumor has disappeared and prior to starting taxol. Best of luck to you also.

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