Calling all TNs

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  • Curlyq1974
    Curlyq1974 Member Posts: 144
    edited March 2014

    Welcome clynn!  This is a great group. 

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  • christina1961
    christina1961 Member Posts: 736
    edited March 2014

    Thinking of you, Cat.

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  • journey4life
    journey4life Member Posts: 517
    edited March 2014

    positive vibes being sent to you, cat

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  • ALHusband
    ALHusband Member Posts: 344
    edited March 2014

    Strangely enough...my wife had the opposite. She had gone into menopause. No periods for like 6 months prior to chemo. After her 2nd chemo treatment...she had her period.

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

    Cat, giving big positive hugs!

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  • TifJ
    TifJ Member Posts: 1,568
    edited March 2014

    I got my last period the day I started chemo- Oct. 2010. Haven't had one since, oh but the hot flashes and night sweats never let me forget I am a woman!

    (((Cat)))

    Welcome clynn.

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  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited March 2014

    The horrible news I feared has been confirmed.  TN mets to lungs, mediastinum, supraclavicle.   I haven't gotten the HER2 test back yet but they expect it to be neg as the original tumor.   I spent a lot of time talking to my MO, who I love, but he ran out of time since I was "squeezed into" his schedule.  I will meet again with him next Wed.   What we did decide is to go ahead with a trial.   I am not crazy about the trial because the main chemo is Taxol and that was very hard on me last time but it is given weekly, plus a new drug (BKM120) or placebo.  I want to get something going right away, so I signed up but I can always quit at any point.  I have about 30 pages to read over and they said it will take a few weeks to get treatment started as there are a lot of tests/paperwork.   There is another trial (CDX-011) I might be eligible for but it requires that you have a taxane drug in the last 12 months, so by doing the first trial, will make me eligible for the second if I have the right protein expression.  Both trials look at certain expression of proteins so my tissue will be sent off for testing.   I will have another CT scan and bone scan next week and find out results of the HER2 and proteins.   MO also talked about Foundation One testing cancer mutations and I may be able to get my tissue tested for all mutations and see what chemos might best suit me.

    I am really stressed out thinking the whole rest of my life is going to consist of chemos and tests.  It is also so hard seeing what it is doing to my husband and family.   I guess I need to change to mets forums.

    Thank you everyone for your hugs and kind words. -Tina

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  • TifJ
    TifJ Member Posts: 1,568
    edited March 2014

    Oh Cat I am so, so sorry this is happening to you. I hope whatever trial or plain chemo you do knocks it down. Yes, visit the stage IV forums, but please don't leave us. You are in my thoughts and prayers.

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  • placid44
    placid44 Member Posts: 497
    edited March 2014

    Cat,

    I am so sorry! I also hope you will stay here and any of the other forums where you feel comfortable.  Thinking of you as you get started with the trial. 

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  • JAN69
    JAN69 Member Posts: 947
    edited March 2014

    Cat,  I'm heartbroken for you and your family.  You've been through way too much to have to face this.  Please remember that your sisters on this thread are always here to help you with all those treatments.  Special hugs to your husband and the rest of your family.  All the best to you.  Jan

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  • mags20487
    mags20487 Member Posts: 1,591
    edited March 2014

    Cat....I have no words except that I am so sorry for your news.  Strength hugs and love to you

    Mags

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  • tekwriter
    tekwriter Member Posts: 216
    edited March 2014

    So sorry for this bad news. Will continue to pray.

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  • lizlori
    lizlori Member Posts: 148
    edited March 2014

    Cat- I too am sorry you have this to deal with....so gad you like your MO.

    My hope is that you do whatever it takes, to help you get through this hard time in your life. Stay strong but don't be afraid to cry or scream yell...venting is good...........  Sending you a great big hug.  Please know that you are cared about....

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  • Jianchi
    Jianchi Member Posts: 352
    edited March 2014

    Hello everybody!  Just logged in to say hi.  Sorry that I haven't been back for awhile.  I haven't had time to review all the post yet, so forgive me if missed any big news.  BanR, are you still having SEs from Taxol?  Any meds can help? TifJ, thank you for thinking about me.  I am doing fine generally.  Still waiting for my genetic result which will not be out until the second week of April!  I am trying to eat healthy and exercise daily.  Life is busy again with family.  Hope I do not need to have more surgery, just radiation. Fingers crossed!  Wish everybody all the best!!  Loves to you all.

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  • BanR
    BanR Member Posts: 289
    edited March 2014

    Cat:Tina, I am shocked to get this news. You did the best you could with your initial diagnosis in 2011. You can reach out to me whenever you want to. I am visiting my MO day after.. let me discuss your case with him and will ask him what are the best options in such a scenario. 

    Bak: I took Gabapentin along with Pregabalin ( Lyrica ), that is 2 tablets of Lyrica 75mg each and 100 Gebapentin. I talked to a neurologist and she said that if Gebentin helps then increase its dosage and gradually titrate Lyrica down. Basically both are neurosedatives. Having 100 Gabentin along with 75mg Lyrica a night made me a little drowsy at night which was good in a way for me. You can consult a neurologist for this. 

    Jianchi: Hope your Rads have begun. SEs from Taxol are much less now..I guess I completed 3 weeks post my last taxol hence the SEs went away. 

    Inspired, Cocker, TifJ, titan, mags, Fighter, Simple and all of you... warm hugs and love from my side.

    I feel so helpless when I read posts of metastasis, specially in cases like Tina ( Cat), where inspite of having no spread and then going to a treatment as aggressive as possible ...from somewhere one cell escapes. Have any of you heard about Cancer Stem Cells. These are the cells which escape chemo. They do something like going to a hibernation or rest phase for a long time and the chemo bypasses it. Chemo has been around for so many years and cancer cells have learnt how to escape it. 

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  • LanaM
    LanaM Member Posts: 142
    edited March 2014

    Cat/Tina - so sorry about the results. I hope and pray everything works out. As others have said, I hope you keep I touch with this board as well as joining other boards you find helpful. Remember that through anything you will always have the support of this great group of ladies! "You never know how strong you are until being strong is the only choice you have". Stay strong! 

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  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited March 2014

    Just a quick update to let you know I'm home and to thank each and every one of you for your positive thoughts and prayers. I'll know more once they biopsy the tumor, but dang this was fast. So unxpected even when you know there's a possibility. 

    Love to all. Havign some vision and headache issues from surgery but outcome was excellent! Inspired, thank you for your message which I luckily saw as I was gettig wheeled into surgery. #1 neuroscience hospital and #2 neuro doc in country! Am I lucky or what!

    love to you all! Love the bluebird avatars and pics! 

    Kristine

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  • Leealice
    Leealice Member Posts: 87
    edited March 2014

    Tina- I am so sorry for your news. I will continue to pray for you and your family. I hope the trial gives you great results and is easy on the side effects

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  • journey4life
    journey4life Member Posts: 517
    edited March 2014

    Oh Tina, I am so sorry this is happening to you (and your loved ones). I am also very angry that FC has come back into your life...and everything it brings with it. 

    There's been ENOUGH ABOUT AWARENESS! IT'S TIME FOR A CURE!

    Love, hugs, strength and courage to you, Cat.

    I HATE FU€K1N' CANCER

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

    Oh Cat - Tina, I'm heartbroken to hear of your updated news.  I can't imagine what you and your family are going through.  I am so glad to see you are able to get into 1 or even 2 trials and hope that they can get the tests administered quickly to start getting you into remission.  Please feel that you can continue to post here, in addition to the other forums.  You've been a great source of information, support and comfort to all of us, and we'd like to be there for you as well.  Much love and prayers to you --- will be thinking of you often.

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

    Bluebird - I must say it gave me a funny image to envision you being wheeled down the hall and still reading from your ipad or cell phone.  :)  That just shows how much us girls reach out to each other on here for support. Thrilled to hear about your excellent results and will be looking forward to the additional updates.  Please return when you can.  

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  • simplelife4real
    simplelife4real Member Posts: 563
    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

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    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.  

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  • simplelife4real
    simplelife4real Member Posts: 563
    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

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    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! 

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  • Titan
    Titan Member Posts: 2,956
    edited March 2014

    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.

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  • NavyMom
    NavyMom Member Posts: 1,099
    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.

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    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. 

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  • simplelife4real
    simplelife4real Member Posts: 563
    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

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  • Luah
    Luah Member Posts: 1,541
    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.   

      

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