TRIPLE POSITIVE GROUP

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  • lago
    lago Member Posts: 17,186
    edited February 2013

    Rina77 I had the tingling early on then numbness. It would go away but then as I got more chemo it didn't. Only my left heel didn't resolve so I bet you'll be OK.

    As far as the nail thing… it sucks.I had every toe and fingernail lift. It was worse PFC. If your toenail lifts that much making it difficult to walk or get your foot into a shoe you need to see a podiatrist that knows about this condition. I had to have one of my large toenails removed. I should have had my other large toenail removed too. We decided to wait… but what happened is my nail bed is no longer smooth so the nail grew in with a bump. The pain and oozing does eventually stop but you need to be sure that it doesn't get infected. Definitely mention this to your onc.

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  • gratitudeforlife
    gratitudeforlife Member Posts: 150
    edited February 2013

    Welcome, krayzwolf66, to this thread.  Stay positive, do all the treatments recommended by your care team, and share and learn and laugh with all of us. 

    Bren58, it is SO OVERWHELMING to be delivered all the info., that your care team has shared with you recently; however, focus on how blessed you are to be in such capable hands. We are all so lucky to live in countries where treatments are current/best available at this time.  Stay positive!! Many prayers sent your wayKiss.

    Pbrain, CONGRATS on finishing chemo. That is such a significant and MAJOR milestone. As written by other gals, it is totally normal to have a 3-5 week break between your last chemo and first rad session.

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  • ang7894
    ang7894 Member Posts: 540
    edited February 2013

    YAY Congrats to Pbrain Smile

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2013

    krazywolf - you will find some triple positive stage IV posting on the stage IV threads.  If you go to the search box and type in "triple positive stage IV", or "ER+/PR+/Her2+ stage IV" some posts will come up.

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  • TonLee
    TonLee Member Posts: 2,626
    edited February 2013

    Rina,

    I was really craving sugar (fast calories) before diagnosis.  I didn't always give in...and should have known something wasn't right when I did give in and eat a pan of brownies...lol. 

    Before BC, and now after, when I eat sugar, I swell up, (retain fluid) for a good 5 days after.  It's worse than SALT!  During the I have cancer but don't know it phase of life, I never swelled....guess the cancer was gobbling it up too fast.

    I try to limit it too because I am def a sugar addict.  :)  

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited February 2013

    krayzwolf66 - I am stage IV...lung mets that completely resolved after 6 rounds of TCH.  So far, still NED!  YAY!

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  • LeeA
    LeeA Member Posts: 1,660
    edited February 2013

    Kelloggs, congratulations!!  

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  • sherry67
    sherry67 Member Posts: 556
    edited February 2013

    Congrats Kelloggs

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  • Rina77
    Rina77 Member Posts: 12
    edited February 2013

    Thank you, Lago, I told my onc about toenails, she said its because of all my chemo combination and suggested to keep nails as long as possible, no treatment, just wait..

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  • Rina77
    Rina77 Member Posts: 12
    edited February 2013

    May be somebody knows about what machine is better for radiation, Are there two different types: one is with sitting position and on the other one you should lay dawn. Which is safety for the body and heart.

    And also I would be greatfull for any advise what face cream without paraben I can buy for reasonable price.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    Bren, I am in the same trial as SpecialK. It sounds like yours might be different. Ours is an immune system boosting program that addresses a certain peptide chain. I dont think our injection is mixed with any of our own cells.

    We are hoping it works though!

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  • cypher
    cypher Member Posts: 508
    edited February 2013

    Kellogs, krazy, it' sheartening to hear they are getting such great results even with some mets.  I'm glad to hear about your prognoses.  As others have stated, there are some stage IV threads, but you are definitely welcome here.

    Rina, I like st. ives products and they don't have parabens.  The body shop is a bit more but still pretty reasonable. 

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  • shore1
    shore1 Member Posts: 739
    edited February 2013

    Rina, I didn't have nail problems as bad as Lago (I thikn becasue I had Taxol vs. Taxotere which I believe is harder on nails), but I did have a few turn yellowish and lift in the corners. I kept them filed short with polish on. I also soaked them in white vinegar and water (prevents infection) and dabbed a little tea tree oil on them (my MO said that was fine). It took about a year pfc for them to finally look normal again. I don't know about letting them get as long as possible though - I would think they would be more likley to lift and snag that way. I also slept with cotton white manicure gloves that helped keep them moisuturized. What a crappy SE.

    Kellogs, that is very good to hear Smile

    I love Robin Roberts - loved her even before she has had to go through all the cancer crap. Wanted to remind everyone that she is on 20/20 tonight talking with Diane Sawyer. I just saw a preview & will def be watching.


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  • lago
    lago Member Posts: 17,186
    edited February 2013

    Bren I've actually read about that research a while ago and thought it sounded really interesting… and sounded like they were having great results. I wish I could participate.

    Rina The reason your onc probably said to let them get as long as possible is because cutting them would put trauma to the nail beds. The less trauma the better…   granted that is difficult to do because with your toes you have to walk and with  your fingers you have to keystroke here.

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited February 2013

    cypher - I do cruise the stage IV boards at times but I have always felt more at home here.  Thanks for the congrats ladies, but I didn't do anything more than what you all have done.  I got lucky.  The only difference for me is that I didn't get to stop the Herceptin at the year end mark, which would have been December.  My MO said as long as it is working and my heart holds up I will stay on it.  Honestly, the Herceptin and Tamoxifen are my security blankets now and I would be afraid to stop them.  I have no real SE's except for the damn hot flashes I can't seem to get rid of even after a year!

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  • ashla
    ashla Member Posts: 1,581
    edited February 2013

    More weapons in the arsenal and hopefully progress in metastatic HER2 pos treatment.

    http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm340704.htm

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  • ashla
    ashla Member Posts: 1,581
    edited February 2013

    Hello & Hallelujah Kellogg's!

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  • Waitingforthenextstep
    Waitingforthenextstep Member Posts: 251
    edited February 2013

    Rina77,

                   I will be having rads in the prone position, which eliminates exposure to heart and lungs, focusing directly to the affected breast.

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited February 2013

    ashla - thanks for the info, I am always glad to hear when they add ammunition to my arsenal!

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  • ashla
    ashla Member Posts: 1,581
    edited February 2013

    Kellogg,

    I felt and probably still feel a little naked without herceptin. Same with not seeing my mds as often.

    I'm in Florida far from all of them and it was anxiety producing at first.

    You and I started this trip together. What amazes me is the change in my outlook on life , the way I spend my time and the people with whom I spend time. Don't know if it's chemo brain but I've had a transplant of some kind! You too?

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited February 2013

    ashla - Absolutely!  I do look at life differently now.  I lost my mom during this journey last year and the combination of facing my own mortality and losing her has changed the way I live.

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  • ashla
    ashla Member Posts: 1,581
    edited February 2013

    Kellogg,

    Sorry to hear about the loss of your mother. That alone is enough sorrow to handle in a year.

    I guess I would say I don't waste alot of time anymore. I try to leave as much time as posible in my days for people and things that fulfill my life. Can't stand small talk. I have all I can do to not walk away . I guess the rough edges of my new outlook will get smoothed out with time.

    I remember the day you told us the good news. Wonderful day. Stay safe and warm !

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited February 2013

    Thanks....you too!

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited February 2013

    Exciting news on the metastatic Her2 front, I see that Ashla shared an article above - here's another one http://www.fortmilltimes.com/2013/02/22/2512840/fda-approves-genentechs-kadcyla.html

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  • ashla
    ashla Member Posts: 1,581
    edited February 2013

    "Beyond terrific" says Marisa Weiss of BCO re the FDA approval of the new treatment for advanced metastatic her2 pos bc.

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  • Rina77
    Rina77 Member Posts: 12
    edited February 2013

    Shore1, thank you, I will follow your advise to soak them before bed and polish, because its hard to putt any shoes on in current condition.

    Lago, thanks you too, doc said to keep them on to avoid infection, but I file them every week.



    Ordered Argan oil to help my hair come back healthy and for my face too, so dry after 16 rounds of chemo.

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  • Lsl327
    Lsl327 Member Posts: 22
    edited February 2013

    I know I am pretty silent on here...but I am always reading. Thank you all for your post. Each one feels so helpful. I just had to share that today I got my path report and I had no node involvement in my final report! I am just so happy about that. Congrats to all of you that are finishing treatment and having such success with treatment. It make things seem so possible for those of us who are just starting our journey!

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  • Soccrmom13
    Soccrmom13 Member Posts: 13
    edited February 2013

    I agree with what Lsl327 said. I also haven't posted much but you all are such an inspiration to me just starting out on this journey. I met with radiologist today and on Tuesday I will meet with MO. I can't wait to get a plan and get started.

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  • LeeA
    LeeA Member Posts: 1,660
    edited February 2013

    Talk about timing.  Just as I clicked on Linda's link I looked up and the same story was being discussed on CNN!  

    Congratulations, lsl327, on the pathology report!!

    And I agree 100% with soccrmom13 and Lsl327 - this thread has been a lifeline in so many ways since the day back in October when I found out I was Triple Positive.  I'm constantly doing searches to reread what someone has said previously on this thread.  

    Many thanks to all!

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  • Lsl327
    Lsl327 Member Posts: 22
    edited February 2013

    Thanks LeeA, you have helped me several times when I was in doubt! Thank you for that. Sweet dreams!

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