Anyone want to sit and wait with me?

24567…14

Comments

  • ColleenS80
    ColleenS80 Member Posts: 271
    edited July 2018

    So much love to all of you as I read through our lovely waiting room with the hottie pool boy! You are all in my thoughts and have my utmost appreciation as well for taking the time to uplift me and others here.

    I heard from my onc this afternoon. She spoke with Dr. Mayer at Vanderbilt and she suggested starting hormone therapy ASAP. They seem to think that even though I’m her2+, perhaps my particular tumor is more “motivated” by hormones than the her2. I just wish there was something we could do about the fact that I didn’t respond. I’m gonna go out on the boards later and try to find others who have been in similar situations and are doing ok. Always makes me feel better.

    In the meantime, it looks like I’ll be having mastectomy after all. Onc looked back at everything and agreed with surgeon that it was probably safest bet. I’m not even worried about that right now, I just wish I could do something more for this HER2 non-response shit.

    I’m making a stiff drink. Anyone joining me?

    Love to all <3

    · Share on FacebookShare on Twitter
  • oxygen18
    oxygen18 Member Posts: 164
    edited July 2018

    vampeyes! ksusan!

    :)

    Colleen, being hormone positive is such a plus in this situation. I have wondered whether you were given Perjeta with Herceptin, and if not, would it make sense to try the two together. Perjeta is supposed to raise the effectiveness of Herceptin. Long shot but I thought I'd ask. Will they get back to you on how they intend to address the her2 aspect?

    · Share on FacebookShare on Twitter
  • ColleenS80
    ColleenS80 Member Posts: 271
    edited July 2018

    oxygen,

    I have had perjeta with my herceptin. :( I don’t think there is anything else they can do about the HER2 part, other than keep giving me the herceptin /perjeta which she does plan to do. Although I wonder what good it’s going to do. Hopefully it is doing some,and just didn’t do enough to show on my tumor.

    · Share on FacebookShare on Twitter
  • Amica
    Amica Member Posts: 488
    edited July 2018

    ColeenS80,

    There are different therapies available. If one doesn't work they move to another, and now there are the immunotherapies, and even clinical trials. Knowing what your cancer did NOT respond to may actually respond to may help point the way to a therapy that will work.

    You have all my sympathy and support, I know how distressing this all is.

    take care,

    Amica

    · Share on FacebookShare on Twitter
  • vampeyes
    vampeyes Member Posts: 1,227
    edited July 2018

    Colleen, have they done any other tests to see if there is even any cancer that spread? Like MRI, PER, bone scan? There's a good chance there is no other cancer in you.

    · Share on FacebookShare on Twitter
  • oxygen18
    oxygen18 Member Posts: 164
    edited July 2018

    Colleen, a few questions I would ask the drs:

    - How will they monitor tx effectiveness going forward? Would ultrasounds help at all?

    - Might a try of Kadycla make sense?

    - Might there be advantages to doing radiation before mx?

    · Share on FacebookShare on Twitter
  • ColleenS80
    ColleenS80 Member Posts: 271
    edited July 2018

    Thank you Amica. <3

    Vamp, we did a PET/CT at the beginning and thankfully it did not show any areas of concern other than breast and nodes.

    Oxygen, thanks for the suggestions!

    · Share on FacebookShare on Twitter
  • vampeyes
    vampeyes Member Posts: 1,227
    edited July 2018

    Some good news there Colleen! Yay. Let's hope it stays that way!

    · Share on FacebookShare on Twitter
  • MiCyn
    MiCyn Member Posts: 73
    edited July 2018

    Vampeyes ..To answer about OncoDx test, Yes I had it done and it was 37. That's the reason my treatment is now changing. I found out today I will be starting chemo next Tues. Yikes!! I'm not ready. I have to be off Tamoxifen for one week before starting. I go to chemo class this Thursday.

    Colleen...Sooo sorry to hear about all your frustrations. I hear you, and wish I had answers to calm your fears. I think I will join join you for that drink now, Red wine... ( for my heart of course)!

    Hugs, Cyn

    · Share on FacebookShare on Twitter
  • MiCyn
    MiCyn Member Posts: 73
    edited July 2018

    Vampeyes, ksusan...OMG! Tan HOT pool boys making my HOT flashes go bonkers now...Or maybe it's the wine. 😉Cyn

    · Share on FacebookShare on Twitter
  • oxygen18
    oxygen18 Member Posts: 164
    edited July 2018

    It's not the flashes nor the wine, Cyn, I can attest to it. It's the hunks :)

    · Share on FacebookShare on Twitter
  • oxygen18
    oxygen18 Member Posts: 164
    edited July 2018

    Kk2018, how are your 10 & 7 year olds doing, do you have someone who can help look after them while you deal with surgery?

    · Share on FacebookShare on Twitter
  • 7of9
    7of9 Member Posts: 833
    edited July 2018

    dropping by your waiting room, well on my way to my own. Diagnosed 6 1/2 yrs ago...one recurrence squashed but man, the scar tissue, radiation, anxiety....working in the yard and watching my son play baseball this summer has helped. My next co up is in 2 days and I'll probably push for another scan. No pain but so tight and full under arm 2 yes after surgery and rads.

    My son was 2 when diagnosed, he turned 9 a few weeks ago. Focus on those kiddos and every success story you can get your eyes on.

    Hugs

    · Share on FacebookShare on Twitter
  • ColleenS80
    ColleenS80 Member Posts: 271
    edited July 2018

    hugs to you 7of9. This disease just flat-out sucks.

    · Share on FacebookShare on Twitter
  • KK2018
    KK2018 Member Posts: 65
    edited July 2018

    Oxygen18 - yes, thankfully I have a very supportive (though shell-shocked) husband and I live in my hometown so I have lots of friends and my parents and my brother and his wife. My girls will be well taken care of! All that being said, I'm kind of an introvert so I'm not good at reaching out and asking for help - I didn't do it when the kids were babies which is the last time I remember feeling close to this overwhelmed. This is a whole new ball game.

    There is so much positivity in this group - and so many "success" stories and it really does help. Every 5-10-15-20 year survivor gives me so much hope. And I'm not sure what the correlation is between cancer and a good sense of humor but there must be one because so many women here make me laugh! Hugs to all of you waiting and worrying.....

    · Share on FacebookShare on Twitter
  • ksusan
    ksusan Member Posts: 4,505
    edited July 2018

    Laughing is correlated with better overall health.

    · Share on FacebookShare on Twitter
  • ColleenS80
    ColleenS80 Member Posts: 271
    edited July 2018

    KK, do please ask for help! I’m the same way, but people really do want to find a way to do something for you. It makes them feel better, too.

    So glad we can get a laugh here or there. I agree the ladies I’ve met here have wonderful senses of humor.

    Saw my surgeon today (had to drain a seroma-gross) and she is back to leaning away from mastectomy. The more she thought about it she didn’t want to rush into anything.I’m not deciding anything till she and onc meet and talk together.

    · Share on FacebookShare on Twitter
  • vampeyes
    vampeyes Member Posts: 1,227
    edited July 2018

    Colleen for the seroma - if it's like mine was it will fill up again, there is this stuff called peri spray, it was the only thing that finally got rid of the seroma from the lymph nodes being removed. It was such an awful pain and the smell after it was drained - ewww. Talk to a woman on Facebook that owns Happy Nut Natural, she may give you the recipe seeing as your are too far away to sell a bottle to. :)

    · Share on FacebookShare on Twitter
  • ColleenS80
    ColleenS80 Member Posts: 271
    edited July 2018

    Thanks vamp!

    · Share on FacebookShare on Twitter
  • Amica
    Amica Member Posts: 488
    edited July 2018

    ColleenS80

    I still remember my first chemo, and I was seated next to an older lady. And she and I were chatting and laughing. And she said, "people ask me how I can laugh?" and she said to me, "well, what's the alternative, sitting around crying?"

    I do a lot of both, with the emphasis on crying at this time, but if I can't find enough laughs in my real life, I'll try to watch funny shows, like old Seinfeld re-runs or there is this show from New Zealand that I fell in love with called "The Flight of the Conchords" that I can watch over and over and laugh every time. Highly recommend it :)

    · Share on FacebookShare on Twitter
  • ColleenS80
    ColleenS80 Member Posts: 271
    edited July 2018

    amica, it’s hard for me not to cry a lot at this point too. I love those moments when you can connect with someone at an appointment or in a waiting room and get some good laughs in and just feel normal for a minute. I watch a lot of The Office! :)


    · Share on FacebookShare on Twitter
  • moth
    moth Member Posts: 4,800
    edited July 2018

    If I had known this is where the cabana boys hang out I would have been here earlier!!!!

    Colleen - one thing that's occurred to me is perhaps your tumor is not homogenous, or perhaps the biopsy path is just wrong. After surgery when they redo all the hormone testing, maybe they'll have more answers for you. I've had several pathologists looking at my samples and giving slightly different answers about hormone status. It turns out there's a bit of a judgement call with some of the techniques but tumor heterogeneity was also mentioned as a possible cause of my discordant results.

    · Share on FacebookShare on Twitter
  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited July 2018

    Hi, ladies! I seem to be in a perpetual waiting state ever since I was diagnosed. Biopsies, US, MRI, bone scan, cat scan, surgery, pathology, grrrrr! Now I am waiting for the chemo to end. Sorry, can’t partake of coffee, cookies or cabana boys yet, but will enjoy all of it from the sidelines. I hate Dr. Google. He seems to know all the bad things right away, and good things you have to hunt for. I Don’t read it anymore since I almost drove myself mad for a couple of months after my diagnosis. I still have weepy days, though. Yesterday was one of those. Today I feel better for some reason.

    Stay strong, Coleen! Have a glass of wine, if you can and try to relax. We can’t outsmart our fate. What has to happen will happen anyway, so there is no reason to drive yourself crazy. Smile and make One step at a time

    · Share on FacebookShare on Twitter
  • ColleenS80
    ColleenS80 Member Posts: 271
    edited July 2018

    moth I have wondered if my tumor is not homogeneous as well and have that on my list of questions for next apt.!

    Inna, you are right. I’ve got to put my phone down and quit reading so much. I want to self-advocate but it’s also really bad for me emotionally to keep reading.

    A glass of wine sounds lovely...think I’ll go see what we have. :)

    · Share on FacebookShare on Twitter
  • Becca953
    Becca953 Member Posts: 99
    edited July 2018

    Colleen - I can relate. I am HER2+++ and it is frightening every step of the way from test to test, each scan and every ache and pain.

    I saw you are Grade 1? This may be an indicator for the lack of response to chemo, because the faster growing Grade 3 tumors typically respond better to chemo.

    Recent research seems to be indicating that Neratinib is beneficial for the hormone driven HER2+ and Perjeta better for hormone negative. This is some newer data that has been coming in but not a final study. Also, some of the CDK 4/6 inhibitors for ER+ have been working well on the HER2 tumors.

    Also, there are some really promising drugs on the horizon with Tucatinib (ONT380) and Margetuximab and DS-8201. They also have some newer Herception combo drugs similar to TDM-1, so clinical trials are another option.

    Lastly, I have heard quite a few respond to TDM-1 (Kadcyla) but not regular Herceptin.

    · Share on FacebookShare on Twitter
  • MiCyn
    MiCyn Member Posts: 73
    edited July 2018

    Hello ladies...I gotta say, as I sit here waiting to start Chemo next week, I really enjoy reading all your posts. Even during these tense, frustrating moments I can 'feel' the love & support that we all need so much !

    Amica.. love the story about the lovely older lady laughing. Although I lost my mom 2 yrs ago, that is exactly something she would say. She used to tell me, sometimes walking past a mirror she would scare herself, and then realize, " OH! that old woman is me"! Then would say, "well I may be wrinkled, but it's better then the alternative". She laughed more then anybody I know.

    Time for me to head on over to my fav spot in the lounge. It has THE best view of the cabana boys, not too far from restroom (very important you know). I may have 2 lattes instead of one !😂KEEP LAUGHING! Cyn

    · Share on FacebookShare on Twitter
  • Amica
    Amica Member Posts: 488
    edited July 2018

    InnaB2018

    Wise words. I can drive myself crazy reading all the scary stuff on Google although occasionally I'll run across a research finding that gives me some hope.

    You are so right. Take it day by day. For me it is the fear of all that awaits me in the future and especially the UNKNOWN, since I have very few results yet, just a preliminary Pathology report. It's so easy to start catastrophizing the worst case scenarios. But then I need to realize even if the the worst case scenario arises that too will have to be faced and accepted. What other choice does one have?

    Hey I think someone is hogging the pool boys because I haven't seen one yet lol......

    I do feel inspired to buy myself a blender and start making healthy smoothies, for real.

    love to you all :)

    Amica


    · Share on FacebookShare on Twitter
  • vampeyes
    vampeyes Member Posts: 1,227
    edited July 2018

    image

    He's not smiling here, but I love this mans smile... one of my favourite actors and now hes a cabana boy! Yummy!

    · Share on FacebookShare on Twitter
  • ksusan
    ksusan Member Posts: 4,505
    edited July 2018

    Vampeyes, I almost posted that photo! I'm not straight, but my wife has given me permission to pursue him if I get the chance.

    Here are a few pool girls for those who swing that way.

    Image result for grace jones swim

    Image result for angelina jolie swimsuit


    · Share on FacebookShare on Twitter
  • ColleenS80
    ColleenS80 Member Posts: 271
    edited July 2018

    Hey All :)

    Becca I have also wondered if my low tumor grade caused the poor response. It’s on my list to ask at my next apt.

    I have had herceptin and perjeta, but to my knowledge none of the other drugs are yet available to early stagers, is that correct? I really wish there was something else she could give me that would combat the HER2, since the herceptin/perjeta didn’t seem to do anything.

    Love the pool “people” ladies! Keep on adding the eye candy! :D


    · Share on FacebookShare on Twitter

Categories