TRIPLE POSITIVE GROUP

1…556557559561562…1334

Comments

  • MemaSue56
    MemaSue56 Member Posts: 2,129
    edited May 2013

    Are there any TP Stage IV's on this thread??  I have a question about herceptin.

    · Share on FacebookShare on Twitter
  • TonLee
    TonLee Member Posts: 2,626
    edited May 2013

    Flavia,

    I got second opinions on EVERYTHING...including, Oncology (tx), radiation, plastic surgery, even the actual mx surgery.  I also went to get second opinions on how long I could wait between chemo and rads....

    Also, just to add...fat is not protein, it is stored energy.  If you don't eat enough protein your body will have to take it from your muscle, which of course leads to MORE FAT because less muscle means slower metabolism.

    · Share on FacebookShare on Twitter
  • TonLee
    TonLee Member Posts: 2,626
    edited May 2013

    Sorry I'm not around much right now ladies...I miss you all!

    I accepted a Development Director job with a local nonprofit and we launch on May 6th!  So excited.  But SOOOO busy. 

    · Share on FacebookShare on Twitter
  • camillegal
    camillegal Member Posts: 16,882
    edited May 2013

    Tonlee so happy for u and u do sound so excited. Good Luck and of course everyone will miss u, but when u'r busy with something u like it's a wonderful feeling. U'll do great whatever u want to do. But u'll pop in I know.

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited May 2013

    MemaSue Jacquee just p osted on the "Taxotere, Carboplatin and Herceptin" thread. She now has mets and is doing Herceptin as well as Pejerta, etc.

    Tonlee I hear you. I've been working full-time onsite this week too.

    · Share on FacebookShare on Twitter
  • Pbrain
    Pbrain Member Posts: 863
    edited May 2013

    So all through treatment, I kept counting the days...counting down the weekly chemos, counting down the daily radiation.  Yesterday in radiation they took my stickies off (I opted for no tattoos) and they cheered.  I now only have 5 boost radiation treatments to go and then it will be follow-up.

    And I'm panicking!!  I broke out in hives yesterday, my body's lovely way of showing me I'm stressed.

    I wonder if I've done enough.  I wonder if they will be there for me if it comes back...I'm petrified.

    Now tell me, how weird is that?

    and Lago, just a guess, but I'm betting you graduated from Smith College ;-)  Am I right?

    · Share on FacebookShare on Twitter
  • MemaSue56
    MemaSue56 Member Posts: 2,129
    edited May 2013

    Thank you Kayb!

    TonLee - Congratulations on you Director position...sounds exciting!

    · Share on FacebookShare on Twitter
  • ang7894
    ang7894 Member Posts: 540
    edited May 2013

    Actually Pbrain that is not weird at all I felt the same way, I did everything they said to do.  Your doing great Smile   

    For me i am having trouble moving on I don't know what to do anymore no doctor visits or calls has me going crazy.. Need to do something new I guess in my life.

    · Share on FacebookShare on Twitter
  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2013

    TonLee, I don't know how you can do so much, and hope you give yourself plenty of freedom even from here to handle it without a lot of stress. I'm glad to hear life is bringing you some bright "flowers"!

    A.A.

    · Share on FacebookShare on Twitter
  • ashla
    ashla Member Posts: 1,581
    edited May 2013

    Wow...big news out of the ASBS...breast surgeons... in Chicago. Postmenopausal Older women between the ages 55-74 may not need rads after lumpectomy says an extensive Italian study.

    · Share on FacebookShare on Twitter
  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2013

    ashla,

    Not only are the Italian study results highly remarkable, but even just this part of the report stands out for me as a very rural Alaskan, because this aspect is never acknowledged in regard to the problems faced by patients with cancer in rural areas around the globe:

    "Breast irradiation might be associated with undesirable side effects. Costs are significant not only to the medical system but also to the radiotherapy patient who is unable to return to work or an active  lifestyle as quickly as patients not receiving the treatments," he comments. Furthermore, "Women who receive radiation along with surgical resection may be unable to have satisfactory breast reconstruction if the tumor recurs and they are subsequently treated with mastectomy (complete breast removal). In addition, many patients in rural or other isolated areas where radiotherapy is not available or who are unable to schedule lengthy radiation treatments receive a mastectomy instead of conservative surgery. This is because mastectomy generally is not accompanied by radiation."

    Here where there is no rads treatment facility within hundreds of miles, as is true in most of Alaska, it means spending months somewhere far from one's job and family, and for those who happen to be self-employed (like I was) it can easily mean no job to return to.

    · Share on FacebookShare on Twitter
  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2013

    One additional comment - When one realizes that the vast majority of early stage bc patients fall into this age range, the impact is even greater.

    · Share on FacebookShare on Twitter
  • navymominohio
    navymominohio Member Posts: 24
    edited May 2013

    @Ashla and Alaska Angel:  Wow and thank you, thank you for posting the link to the ASBS.  I fit these criteria and am just scheduling my pre-rads planning session with the RO.  I've faxed the abstract to her.   Very, very interesting.  I wonder if anyone is considering doing a mini-radiation protocol of maybe 10-15 sessions rather than the traditional 30-33.   Kind of a "half-baked" Smile approach.  I am amazed at how knowledgable the various women posting on this site are and how current the info. This abstract -- just released today -- is literally hot off the press. 

    · Share on FacebookShare on Twitter
  • ashla
    ashla Member Posts: 1,581
    edited May 2013

    Navymominohio...



    Do not be suprised to see the winds of change regarding radiation treatments blow very, very slowly. It may take years...if ever....to change the protocols. As AA has said...this is the majority of breast cancer patients.



    But if it becomes the algorithm....it will have a huge economic effect on the cost of medical care!

    This kind of one size does not fit all way of treating women is a refreshing departure it seems.
    They already have mini rads ...incluing intraoperative radiation. Don't know if they ever use it on HER 2 pos ladies tho.

    · Share on FacebookShare on Twitter
  • ashla
    ashla Member Posts: 1,581
    edited May 2013

    Navymininohio,

    Btw, I'm still good with my decision to have rads. No regrets for me so far. My tumor was a little larger than the study anyway but this study about radiation benefit post surgery was released just as I was DX 'd.



    http://www.nytimes.com/2011/10/20/health/research/20cancer.html?_r=0

    · Share on FacebookShare on Twitter
  • navymominohio
    navymominohio Member Posts: 24
    edited May 2013

    @Ashla, I'm absolutely doing the radiation.  But it is fascinating to see significant and competing thoughts as to best practices in post surgical care.  Will be interesting to see how/if the "gold standard" for radiation changes over the next ten years or so.   Perhaps  we will be among the last group of women to have this as part of the mandatory treatment.   

    · Share on FacebookShare on Twitter
  • ashla
    ashla Member Posts: 1,581
    edited May 2013

    Just saw TonLee's post....

    Great news ...break a leg!



    · Share on FacebookShare on Twitter
  • gratitudeforlife
    gratitudeforlife Member Posts: 150
    edited May 2013

    TonLee,

    A HUGE congrats on your new job. With your energy and intellect, you will be an amazing success, of that, I have no doubt whatsoeverSmile.

    · Share on FacebookShare on Twitter
  • ChickaD
    ChickaD Member Posts: 1,025
    edited May 2013

    TonLee....wow how exciting about your new position...CONGRATULATIONS!!!

    · Share on FacebookShare on Twitter
  • Bren58
    Bren58 Member Posts: 1,048
    edited May 2013

    Congrats on your new Job, Tonlee. I am sure your will be a real asset for that non-profit!

    · Share on FacebookShare on Twitter
  • ang7894
    ang7894 Member Posts: 540
    edited May 2013

    Wow this thread is fast sorry I missed TonLee post had to go back.. Great news,  And it does sound interesting. Good luck.

    · Share on FacebookShare on Twitter
  • GrandmaV
    GrandmaV Member Posts: 1,267
    edited May 2013

    Ashla - I appreciate all of the information you give us links for.    Thank you so much.

    · Share on FacebookShare on Twitter
  • cypher
    cypher Member Posts: 508
    edited May 2013

    Tonlee, congratulations!  And congrats to your new employer too, they are lucky to have you.

    Pbrain, congrats to you as well!  But … don’t you still need to go in for your year of herceptin?  I do hear that women have that panicky feeling – I didn’t feel that way but then I’m not really done until late july when I’m done with herceptin.  I’m just done with the super annoying part.

    · Share on FacebookShare on Twitter
  • Pbrain
    Pbrain Member Posts: 863
    edited May 2013

    Ashla, I was a candidate for intraoperative radiation all the way up to when my Her2 status came off of the fax machine, and then *poof*, it was gone, no more.  I was also no longer a candidate for internal radiation which only takes a week, 2 Xs a day.  But I have a coworker who is early 40's who had a bilateral breast cancer diagnoses, and because she was Her2 negative, she had the internal radiation.  I don't know more about her receptor status, but she is young and her Mom died of breast cancer when my friend was a young girl, so I do wonder if she was negative for ER/PR...she's private and doesn't talk about it even to people like me.

    · Share on FacebookShare on Twitter
  • Pbrain
    Pbrain Member Posts: 863
    edited May 2013

    And Cypher, yeap, I need to go back for Herceptin until mid-November.  I just guess I will miss that place once I'm done, even though they made me sick.  They weren't doing it to me, they were doing it for me.  And thanks for understanding Ang, I feel like a loon.  I so wanted to be done, and now that I am...it's weird.

    I said to my Mom, it will be like I'm alone, in a room, with my two boobs wondering if they are trying to kill me.

    Congrats TonLee! You will do amazing, just like Lago, because of all that you have been through.  I didn't see your post either.  I got too involved with reading about fasting during chemo this morning...

    · Share on FacebookShare on Twitter
  • TonLee
    TonLee Member Posts: 2,626
    edited May 2013

    Thanks everyone.  My nonprofit (NP) is not about breast cancer.

    Our mission is to abolish and prevent sex trafficking in the Miami Valley (area of Ohio) with outreach, education programs for kids and adults, and aftercare. 

    Trafficking is defined as anyone under the age of 18, and anyone over the age of 18 in the sex industry under coercion. 

    This area has the 5th highest sex trafficking problem in the nation!  We lose 1,058 children to sex trafficking every single year in this state and the average age is 12-13!  That's OUTRAGEOUS.  At least to me.

    We raise awareness by talking with businesses, schools (age appropriate!), etc etc.  Anyone who wants it, from Wal-Mart employees, lol, to law firms...everyone can be an abolitionist!...we go to them and teach them how to not fall into trafficking (if a child) and how to watch for red flags when traveling, or in the neighborhood, or at major events (sports and other large events are a big draw to sex traffickers in every state), the numbers to call to report any activity they suspect might be trafficking.  The Polaris Project starts a file on every single call...

    We also go directly into hotels, motels, strip clubs, bars in the adult entertainment area and distribute mints and soap (for motel bathrooms) with a sticker on them that says, if you are being forced to do something you don't want to do, call this # type message.

    Tons of other stuff too, but to much to write here.

    I'm honored to be part of the group.  It's important work.  And I love when a child is rescued from a trafficker!  LOVE IT!

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited May 2013

    Pbrain Eventually the fear goes away. For some it's sooner than others.To be honest, by the time Herceptin was done I was happy it was over. Remember we're still on hormone therapy. We triple Ps have lots of guns.

    I could only afford to go to one of the 5 colleges… UMass. I only went for 2 years then transferred in my jr year to The School of The Art Institute of Chicago. UMass was my bac-up school but they offered me so much money, and my sister was in her senior year of college there was no way I could turn that down. I considered Mass Art but then I would have to live at home because at that time they didn't have dorms. Wouldn't have worked.

    Tonlee what an awesome cause. Must be a great job to wake up to! Congratulations.

    · Share on FacebookShare on Twitter
  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited May 2013

    Tonlee, congrats. it sounds like that is something you can be proud of. Pbrain, yes, its weird feeling when they toss you out! I got a full dose because I had to quit Herceptin early! LOL I actually felt relieved that I needed magnesium infusions so often, it made me get to go back! LOL talk about bring strange. But exit stategies seem to be lacking in many practices! Much love to all.

    · Share on FacebookShare on Twitter
  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2013

    Tonlee, you will be awesome in your new job!  Congratulations.

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2013

    tonlee - sounds like you need to be a combination of a caring individual and a total badass to do this new job - I think it seems perfect for you!  Congrats!

    · Share on FacebookShare on Twitter

Categories