TRIPLE POSITIVE GROUP

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  • camillegal
    camillegal Posts: 15,710

    Ramey I know this one I know this one--Prilosec for heartburn. Finally I knew an answer. I had chemo before and after so I just streamed along.

  • PBrain - ba ha ha ha ha!!!!!!!!!!  So very glad it helped you.  I swear by it!  Have never been more regular in my life, and I know it kept me from having a c-diff recurrence.  That is some powerful probiotic, I tell ya. 

    I would highly recommend anyone starting chemo or anyone going on antibiotics discuss taking Florastor with their onc.  I took a regular probiotic (bacteria) but did not discover Florastor (yeast probiotic) until I got c-diff.   

    So...for my GREAT news...my gyn just called me and the path on my D&C was BENIGN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    She said I had a HUGE endometrial polyp, but it was BENIGN.  That is what was causing my erratic bleeding.  I was so afraid I would have atypical hyperplasia (cancer or precancer) due to the Tamoxifen.  But I didn't! 

    I am going to see if they can retest me to determine if maybe I am postmenopausal by now...would like to switch to an AI.   I think it is risky for me to continue Tamoxifen.  My endometrium obviously does not behave nicely when Tamoxifen is in my body.  And studies show if you have endometrial polyps your risk of developing endometrial cancer while on Tamoxifen is even higher than the average bc patient on Tamox.  I feel like I dodged a bullet. 

  • camillegal
    camillegal Posts: 15,710

    Oh Dance such good news--nice word BEnign, it's a happy word even used in Bingo.

  • ang7894
    ang7894 Posts: 427

    Great news dance.

  • specialk
    specialk Posts: 9,299

    dance - yay!

  • Hi all! I hope everyone survived the hectic holidays! I now try to see how many things I can do that will leave good memories, lol....just in case. It's coming up on three years for me on January 21. At least that is what I use for the date. It was the identifying, removing and clean margin biopsy.

    I got all my nieces, daughter and potentially future DIL a Mariana Guardian Angel necklace for Christmas. Each one is different and the back has an angel in silver. I put a little letter for each one. The necklaces were created by an Israeli jewelry designer. If you have a special person, I highly recommend them. 

    I hope everyone is doing fabulously! Here's to a happy, healthy New Year and decades more to come!

    (Knock on wood, throw salt over my should so I don't curse us.)

  • dance - yay for happy news! 

    My MO is still out if town, so the NP talked to one of the other docs in the practice.  He said to stop the tamoxifen.   So, now I just wait for Thursday to find out how she wants to ablate my ovaries . . . 

  • LindaKR
    LindaKR Posts: 1,304

    lago - here you go - 

    Interview December 26, 2013

    2013 Top Stories in Oncology: This Was the Year for HER2-Positive Breast Cancer

    imageKimberly L Blackwell MD

    PracticeUpdate: In your view, which development that occurred in 2013 in breast cancer research could have the most significant impact on clinical practice?

    Dr. Blackwell: This year was the year for more options in the treatment of HER2-driven breast cancer. In chronologic order, we saw the approval of T-DM1 in the United States in April 2013. We saw its approval throughout Europe in the fall of 2013 for the treatment of taxane/trastuzumab-refractory metastatic breast cancer. We saw a first-ever approval on the basis of neoadjuvant activities for pertuzumab in combination with a taxane in neoadjuvant setting in the fall of 2013. In the summer, at this year’s ASCO meeting, we had a study looking at an older drug, vinorelbine, in combination with trastuzumab and showing that the mTOR inhibitor everolimus improves progression-free survival.1 And, then, we also have the approval of lapatinib and trastuzumab in trastuzumab-refractory metastatic breast cancer throughout Europe. So we had three either drugs or combinations approved. We obtained new data from phase III studies of the use of everolimus in the HER2 setting. All these things combined really made it a breakthrough year for the treatment of HER2-positive breast cancer.

    PracticeUpdate: What specific changes have you observed or do you foresee as a result of these developments?

    Dr. Blackwell: I personally think that we are going to see a lot less recurrent HER2-driven breast cancer, and that’s because we are now able to use highly effective antibodies, like trastuzumab and pertuzumab, in the curable or earlier-stage setting. We know that pertuzumab improves survival in the metastatic setting, and now that we are able to use it in our earlier settings, based on the neoadjuvant approval, I would hope that we’ll take a generalized cure rate of somewhere about 90% for all women facing HER2-positive breast cancer to an even higher level. These are pretty exciting times! At San Antonio this year, we saw a 97% long-term disease-free survival for small lymph node–negative HER2-driven breast cancers with the combination of paclitaxel and trastuzumab.2 That is among the best cure rates we’ve ever seen in early-stage breast cancer. So, I think that all of these highly effective drugs that have limited toxicity will hopefully cure more women facing HER2-positive breast cancer.

    I really feel that no one needs to be afraid of breast cancer anymore, at least not HER2-positive breast cancer.

    PracticeUpdate: Would you put this development into historical perspective for the practicing physician?

    Dr. Blackwell: In 2005, we saw the first data that trastuzumab improves overall survival for patients in the first-line metastatic setting.3 Very quickly after that, in 2008, we saw that trastuzumab offers women a higher cure rate in early-stage breast cancer, and the pace has really picked up. From 2005 to 2011, we had two drugs—trastuzumab and lapatinib—available for the treatment of this very important driver of growth, this HER2, and then, in a period of 12 months, we’ve seen two new drugs approved, one new combination approved, and one possible new combination for heavily pretreated patients.

    PracticeUpdate: Would you summarize why you picked HER2 as the 2013 top story in breast cancer?

    Dr. Blackwell: This success serves as a really important model that we should now be applying to forms of breast cancer that aren’t as hard to treat, including triple-negative. If we can do this in HER2-positive breast cancer, then nothing should slow us down in trying to figure out the same paradigm for a triple-negative breast cancer.

    References

    1. O'Regan R, Ozguroglu M, Andre F, et al. Phase III, randomized, double-blind, placebo-controlled multicenter trial of daily everolimus plus weekly trastuzumab and vinorelbine in trastuzumab-resistant, advanced breast cancer (BOLERO-3).Paper presented at: ASCO Annual Meeting; May 31–June 4, 2013; Chicago, IL. Abstract 505. J Clin Oncol 31, 2013 (suppl; abstr 505).
    2. Tolaney SM, Barry WT, Dang CT, et al. A phase II study of adjuvant paclitaxel (T) and trastuzumab (H) (APT trial) for node-negative, HER2-positiven breast cancer (BC). Paper presented at: San Antonio Breast Cancer Symposium; December 10–14, 2013; San Antonio, TX. Abstract S1-04.
    3. Marty M, Cognetti F, Maraninchi D, et al. Randomized phase II trial of the efficacy and safety of trastuzumab combined with docetaxel in patients with human epidermal growth factor receptor 2-positive metastatic breast cancer administered as first-line treatment: the M77001 study group. J Clin Oncol. 2005;23(19):4265-4274.

  • LindaKR
    LindaKR Posts: 1,304

    Oops - just saw that someone else had posted the article!

  • moonflwr912
    moonflwr912 Posts: 5,945

    Hello to all. I hope every one had a good holiday. I hate when a topic drops off my favorites. And I hate it more when I don't notice it for more than a week! . I'm caught up now but forgive me for not mentioning names. I saw someone finished H. Congrats. I saw at least 3 newbies. So hello and welcome. And sorry. 

    I am doing well after my exchange surgery. Pain level is pretty low for just two weeks out! Knock on wood. Keeping fingers crossed and hoping it stays good! 

    My 4 kids with various spouses working 3rd shifts and holidays meant we did not have a family Christmas yet. It's scheduled for January 4th. Keeping fingers crossed that the weather will cooperate too! LOL.  

    Ok. I read someone asked why the surgery first or chemo first. That depends on how large the tumor is and your doctor.  Sometimes it seems there is no reason but preference. LOL. 

    Someone else asked about Constipation or the big D. No one knows which one they get. But if you have D get something stronger than immodium. That did not work for me and I ended up hospitalized.  So drink drink drink. I drank ice tea. Weak very weak. But i could stand it. Also some citrus in water was ok. Chemo nurses recommended eat every other hour and drink something every other hour. Alternate them. Just to get yourself through. 

    Much love to all. May the New Year bring better things and New beginings!

  • Hi everyone!  I haven't been on here in a long while but it's good to be back!  I feel like I need to talk to people who really understand what's going on in my world!...  If one more person tells me that I look so much better with the short hair and that my long hair didn't really suit me at my age, I'm going to come unglued!  LOL  So, since short hair isn't my choosing or my thing, I am letting it grow as long as I possibly can! (which isn't going to be very long since it's only like 2-3 inches and growing at a snails pace!)....  I've been oscillating between looking like a Chia pet and Don King so NO, this frizzy, curly, dry, short hair does not make me happy!  (thanks for letting me vent!) lol

    Also, I just read that great article above and it made me feel optimistic and happy...  an uplifting article about cancer... well what do you know! 

    I'm hoping to re-acquaint myself with you ladies and hopefully help out those of you who are just beginning to go through this process. 

    I'm finally getting my "exchange" surgery Feb. 2014, which I thought would never happen... my PS had originally wanted to do the LAT FLAP surgery, no implants because of the radiation, BUT after he saw how well my skin held up, he changed his mind... I'm so thrilled... I just wasn't up for another big surgery.  I think he's going to go with the Gummy Bears.  So looking forward to getting to know you all!  :o)

  • Yay, dance! Welcome back Monica! Also, good to see Special K again! I hadn't seen you here in a while and was hoping you were just away for the holidays.

    Leigh: great news from your PS! I am hoping and praying for same outcome. Could you share how you cared for your skin during rads?

    On Monday I will have modified radical mx. Honestly, I have been scared to death, but starting to feel a sense of peace. Reminding myself of all you strong ladies that have already been there. Any tips to help me prepare? Mom insisted on coming to stay and "help" me for 3 weeks. Love her, but she drives us all crazy in 1 week! 

  • lago
    lago Posts: 11,653

    My onc said the reason to do chemo first is too see the response to chemo. It can also be done to shrink larger tumors to make the surgery easier. I had a big tumor (6.5cm in total) but the said I should do surgery first. I know another gal, same size tumor, same team but she was hormone negative and lymph node positive had chemo first. Go figure.


  • Hi Leigh22..welcome back!!  so good to know that you healed well after rads and will be having an exchange surgery soon.  I just met with a PS who agree with TE's for me before rads and said we would only go the Latissimus Dorsi route if all else failed.  I am glad he is willing to give implants a shot because I am!!  I am meeting with my RO for the first time tomorrow and so hope to get my plan better in place.  Hoping for a surgery date soon too......I feel like I am hanging in limbo now that I am nearly 3 weeks post final chemo (PFC)!

  • Pbrain
    Pbrain Posts: 773

    Leigh, you crack me up!  I was just looking at my hair last night thinking I had an odd resemblance to Don King...I hadn't thought of the chia pet though.  HaR!

    Lago, I've read that with triple negative cancers, the best approach is to do neoadjuvant chemo so you can see if the tumor responds.  The MOs feel they don't have much else to throw at it after surgery, so they want to see how well they are doing.  I made friends with a woman during rads who had her appointment before mine.  She was triple negative, so she'd had chemo first.  After that they did the lumpectomy, but saw that her tumor was still pretty large.   They got clear margins and sent her to rads, but she was lined up for a whole nother course of chemo after that.  I felt so sad for her because she said she was finally feeling better and she had a little peach fuzz going on her head.

    Leanne, I'll let others weigh in on the mastectomy advice since I did not have one, but I hear from many it isn't that awful.  I also hear you have trouble sitting up from bed, so you might want to scout out a recliner for sleeping?

    Congrats on the good news Dance!  And Ashla, I agree a good yoga class beats doing it at home, but I like your suggestion about taking favorite moves from different instructors.  Right now I'm not so sure I can get up off of the floor without aid.  I'm seriously crippled.  So I might start with chair yoga to get more flexible?

    Dr. Blackwell's article is very uplifting!  I saw a lot of my cousins this Christmas and they were all asking about breast cancer.  I said the same thing she is saying--you can survive it, so if you feel something, or something isn't right, get it taken care of right away and be brave.  It really isn't something to fear, but more like something to just smile and face.

    Happy New Years everyone!  You've all made my 2013 so very much easier and I can never thank you enough for listening to me wail about the big D, sore joints, achey boobs, and abject confusion! ThumbsUp

  • moonflwr912
    moonflwr912 Posts: 5,945

    Girl strong I hope it goes as well as you need it too! 

    Leigh I'm happy for you. Visit the Exchange City Board for all of the wonderful women who have been through it for support. It's a great group! 

    Leeanne, you don't have to dance in the OR before your sx, but do go in with a smile! LOL You are one step closer to getting to the end of your tx. And yep your Mom can drive you crazy. But she will be able to DRIVE and you wont! That's a big help. And it means she can take the kidlets away with her so you can get some rest, from HER and the kids.... so think of something for her to get you that will take a while and send her for it when you can't take her help any more. Like send her to get a pizza and have her call you with the options so she has to wait for it.... that guarantees you at least an hour.... LOL.  Ask me how I know this! LOL. Also here's the best advice I got: TAKE THE DARN PAIN PILLS!!!!! No need to be a martyr!  Stay ahead of the pain. Some women don't have a lot. I had plenty. Three weeks worth of hydrocodone type pain. But it is doable. After that I was able to wean myself off in less than a week.  So take it. Let the span go to 5 instead of six hours after the first week. If you feel a lot of pain try it again the second week. If you can go 6 hrs try another less strong pain pill. If that works then wean yourself tgen. But take them for at least a couple of days. The exchange was my 9th surgery not counting port placement. So trust me you won't become hooked! MUCH LOVE AND LUCK! 

  • lago
    lago Posts: 11,653

    Pbrain She is HER2+

  • Leanne ~ I had a lot of the same feelings as you prior to my surgery, then I wrote a super depressing angry blog about it and somehow the next day I just felt better. I went out, and gathered materials and food to occupy the people who would be waiting for me {which they didn't use! haha!} and it made me feel like I was DOING something to help while I would just be "sleeping" for 8 hours. As far as the surgery, I woke up and I felt fine, I mean it was painful, but overall it was fine and the most painful part {sitting up from lying down} was only an issue for a couple of days. The pain leaves as quickly as it comes and all of the sudden you are surprised at how "normal" you feel and kind of forget how much it hurt at first to so certain things. I actually stopped the narcotics {except valium} and just took tylenol because I don't like how the narcs make me feel after a couple of days - I know everyone will tell you to just take the meds, but really sometimes you just don't need them. I was allowed to drive {if I wanted to} as soon as I was off the drugs, but I waited almost a couple of weeks.

    As far as some tips about what to bring with you, chapstick - it's dry in the hospital, face-wash clothes to wipe off made me feel a lot better, hand lotion - again with the dry, throat lozenges - because of the breathing tube, clorox wipes to wipe everything down once I got to my room, b/c, you know, germs, hand sanitizer, and a compressionn type garment top if you don't already have a post surgery camisole. I only wore my post surgery cami for two days, then I found these AWESOME compression sports bras from target that unclipped in the back so I could step in and someone could buckle them, I am still wearing them even though I don't "need" a bra - I then pinned the drains to the bottom of the bra. I also went and bought a few zip up hoodies in larger than my normal size with inside pockets, those were AMAZING for holding drains and making me look "normal", I'm wearing one right now b/c it's cute and I just like it. There were a TON of other things I read that I would need, but those are the only things that I really used. Make sure you have a good sleep set up at home, I slept in bed with this huge wrap around maternity type pillow, but it was HUGE and now is just a waste of space. I could have set up the same situation with a just a ton of pillows. I didn't want to sleep in the recliner b/c I spent so much time in it during the day I just wanted a change of scenery, haha!

    Good luck! Soon YOU will be the one handing out the surgery prep/ recovery advice!

  • camillegal
    camillegal Posts: 15,710

    Trying to catch up. Of course not to much advice to give but I do know if u don't like to drink a lot of plain water (like me) there are vitamin waters that are good--I'm hooked on Propel, lemon, berry and peach, my favs. And as far as surgery for deboobing it was the easiest prt, but I did sleep in a recliner but surprise no pain, which I expected. Even thos u feel good after surgery just allow u'rself to heal and don't over do--No one has made u superwoman--yet. Tell all u'r surgery people u want all of their full names, so if anything goes wrong they will be mentioned in full in the paper or obits--they'll take really good care of u then. And whatever u do don't tell u'r surgeon if u were younger he's leave his wife for u-How did I know he was getting a divorce? And whatever u do when his partner comes in don't tell him how absolutely gorgeous he is and not say that to u'r surgeon first, they are very sensitive about their looks. And I don't think u should mention if anything hurts u'r hand can easily reach his privates easily---well I said the actual words, they actually cringe So I have a lot of don'ts, but it does make u'r relationship with u'r surgeon a bit different (if he is a he)

    Hair hahaha we're all stuck with that first comback and it's usually different, but let it grow, let it grow let it grow..)u can sing that)

    Moon u look good, that is a different pic right?

    Well I truly hope bringing in 2014 will be a joy for all and a soothing part of our lives.

  • For me, surgeries, were the easiest part of the past 18 months. I had a pain ball with each, narcotics for break through pain, and the old faithful lorazapam. The pain balls lasted 6 or 7 days. I drove after those were out. For the 1st I had a drain for 30 days, the 2nd 2 drains for 10 days. Drains were annoying-as what to do with them-but not an issue. One of my side winding paths was day 30 after my first surgery my incision line opened-2.5-3". No bacterial growth. Just opened. That side looks like Edward Scissorhands needed to sharpen his knives. A bit ragged in spots. 

    P-love the hat.

    My wish to each of you is every day gets better. May you find something positive even on the crappiest of days. Or something less crappy. I don't post as often, but i read almost every day and look for each of you to laugh and cry with. 

    My NYE will be spent on the couch with my overgrown dogs, popcorn (real NOT microwave), maybe a beer, and a movie. Asleep prior to midnight. Never been a big fan if NYE. When my children were young my house was always open for the kids friends. 

    Love to each.

  • moonflwr912
    moonflwr912 Posts: 5,945

    Thanks Cami it's pretty new. I thought I was a fairly prolific poster, Cami you have me beat! In 2 months less! I was trying to get up to 4000 posts before the end of the year. Oops. Not quite! But you have over 10,000!! LOL  just kidfing. Everyone likes to hear from you. Happy New Year! 

  • ang7894
    ang7894 Posts: 427

    Happy new year everyone 

  • camillegal
    camillegal Posts: 15,710

    image

  • lago
    lago Posts: 11,653

    Leanne I was very scared of surgery. Other than teeth extractions I never had any surgery. I don't have kids either. It wasn't even 1/2 as bad as I thought. I hope your like me. They ended up taking the pain pump away because I didn't use it. Never used any of the pain pills either. Not even a Tylenol when I got home. I was sore but not in pain. I had a BMX with 10 nodes one one side and 4 on the other. The nodes were the most sore. I really hope your lucky like me and fine the "pain" not so bad but if not they have awesome drugs to take care of that.

  • Wow! Thanks for posting this! Great note of positivity to start 2014!! I have my first Perjeta & Herceptin without chemo drug tomorrow. Feeling a little anxious and hoping it goes well and SE are minimal, like a itch or something minor...haha

    Wishing everyone a happy & healthy New Year, moving towards health, regaining health, wherever you are on this journey, positive, warm thoughts surround you!

  • specialk
    specialk Posts: 9,299

    camillegal - cracking me up as usual with the obit stuff!

    Leanne - I have a newly diagnosed friend, who is single and 35 with TN, and I have been going with her to all appointments, so I have been off the radar a bit.  I also had to go up to Washington, D.C. for my vaccine trial booster so I was totally behind on holiday stuff.  But I am back now!

  • LeanneF
    LeanneF Posts: 32

    Sorry to hear about your friend Special K. 

    Thanks to everyone for the advice. I am going to spend a little time today getting my things ready. Cami and Monica your advice cracked me up. :)  

    Here's to a Happy, healthy and prosperous New Year to us all! 

  • SpecialK - next time you're up here - let me know!   I could take you somewhere fabulous for lunch!   :)

    Happy New Year, everyone! 

  • specialk
    specialk Posts: 9,299

    mckatherine - I am a former NOVA girl - I lived in Springfield for 9 years when my DH was stationed at the Pentagon.  That is why I selected Washington, D.C. for the trial location.  I am coming up on Monday for my blood work, where will you be?  Lol! I will just be there for the day but do have a gap after the labs before I need to be back at the airport. I will be back in July for the next booster, and that is a 3-day stay.

    Leanne - my friend will most likely pursuing treatment at Moffitt because they have a TN specialist onc.

  • LeeA
    LeeA Posts: 1,092

    Happy New Year everyone! 

    Congratulations on the test results, Dance!  

    PBrain, I cannot recommend the Curcumin/Bioperine enough (as you all well know!).  I walked 4.25 miles yesterday and I feel kind of tired but no joint pain (I've been on Arimidex since early October).  

    Re: surgery anxiety - I really had it bad but in retrospect, it was the anticipation that made it so overwhelming.  I didn't have much pain at all afterwards.