TRIPLE POSITIVE GROUP

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  • Blownaway
    Blownaway Member Posts: 760
    edited April 2018

    Tresjoli2- Imjust went for an annual mammo (4 years out of dx). Afterwards, was told we are going to do an ultrasound now. Never had that experience other than when cancer was seen and was scared. No explanation, nothing else said. Afterwards, was told that all was fine. When I asked why the ultrasound..."Oh, we always do that here." Aargh

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2018

    Blownaway,

    The same thing happened to me at one of my mammos. The radiologist said he just wanted to make sure that he was 100% sure that he didn't see anything that was problematic. But, yeah, it was funny how quickly it happened! One minute I was sitting in the post-exam waiting room, and the next thing I knew, the tech was squirting me with gel.

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  • Tess111
    Tess111 Member Posts: 58
    edited April 2018

    Tresjoli, sending gentle cyberhugs your way. I totally get your irrational mind second guessing what is going on. That's the sucky thing about Breast Cancer, you can't look at things as simply as you did before BC.

    I had a similar experience recently which I have posted about earlier. In my case, everyone has been reassuring that it is most likely the result of radiation and surgery, but they want me to go back for another mammo and an MRI in six months. So, while I am telling friends and family that all is mostly good, I am still sick about those new calcifications and the six month repeat. As I said earlier, it's like waiting for the results of a biopsy for six months. Ugh, just ugh!

    I don't think tech's always get how much we hang on to their every word, and how disconcerting it is when they deviate from what we have found to be normal procedures. But then, I am preaching to the choir.

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited April 2018

    This may be off topic but I want your opinion.

    DH and I do meals for ill people at our church.

    There a woman with 4 girls and she in back in chemo for brain cancer. The family has requested meals.

    I remember when my SIL passed, I cleaned out my Brother's re'frig. There were HUGE casseroles and dishes that had barely been touched. He said no family can eat one big thing.

    So, I have been making several small main meals, sides, desserts ... 2 - 3 of each instead of one big dish.

    I remember asking DH for Asian food during chemo. DH refers to Asian food as a "logistically intense" meal to prepare because of all the ingredients and chopping. I took one bite and that was it. I could not stomach another. A really close friend made us a gallon chicken stew. I ended up freezing it. I know she meant well but I just could not eat the same thing night after night.

    So do you think doing several small meals and sides is the best way to do this or should I do big casseroles?

    What did people cook for you that worked?

    If this is too off topic and you want to PM me, just do so.

    Vicky

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited April 2018

    first of all..I love everyone of you. I have no one, just no one at all, that even understands what happened to me today in real life. I'm so grateful to each of you. So thank you. You made me feel.so much better!

    Coach I think small meals is the way to go. And packaged so they can be frozen if needed. I think that is a wonderful idea.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2018

    Hi Vicky!

    I had a friend who set up a Lots-a-Helping Hands page on the internet which allowed me to make specific requests. I requested dinners for Wednesday nights, chemo days when my husband would not be home because he was teaching a graduate seminar at night. My daughter would be home, as would my sons (who eat really weird things because they are on the spectrum). So, essentially, people brought me dinners for two. My daughter does not have an adventurous palate, so we requested things she would eat, like chicken, mac and cheese, and Subway turkey sandwiches. Those meal ideas turned out to be a blessing in disguise because I could only really tolerate bland food while on Taxol.

    My thought would be about the ages of the children. Some kids have adventurous palates, but many live on chicken nuggets, mac and cheese, pizza, and other old stand-bys. It's hard to say!

    By the way, I did freeze some of the food I received. I didn't mind thawing it out later and eating it.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2018

    coach - I did meals that I sent with DH when he went up to care for his mom after she was diagnosed with leukemia. I made the dishes in large quantity, but then portioned them into two servings and used these containers. Because he was driving for 6 hours I actually froze them in advance already portioned so he could just load them into the freezer and pull out what they needed for the week. I made a ton of these so that as his siblings rotated through they didn't need to stop at the store for anything other than perishables.

    https://www.costcobusinessdelivery.com/Vital-Packaging-Rectangle-Container-and-Lid%2c-38-oz%2c-150-ct-(MN9638B).product.100317786.html

    They stack well and I labeled them with freezer tape and a sharpie on the side so they could be easily read if stacked in the fridge or freezer. I made hearty stuff like beef stew and also creamy pasta dishes like alfredo with fusilli, chicken and peas, mac n cheese with ham, lasanga, etc.

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  • astyanax66
    astyanax66 Member Posts: 288
    edited April 2018

    CoachVicky, definitely agree with the smaller portioned meals suggestions. I’d love to get SpecialK’s yummy catering—it sounded awesome! What we’ve received thus far that’s worked best is a meal with enough for 4–and my DH and DS have half for dinner and the rest for lunch or dinner the next day. Perfect. They included Mac and cheese for picky teen. My bff also made several frozen “bases”—like plain diced chicken and rice—and froze them. Thaw and make something different with each, very easily. Add taco seasoning and salsa for Tex-Mex. Add cheese and cream soup for casserole. Add some Asian seasoning and veggies for stir fry. Those have been a winner, yet it was very easy for her to set up for us. Even my 2 non-cooks can manage. Me, I’m on a steady diet of pudding, rice, cheese, yogurt, and peanut butter...thank goodness for protein powder and Boost.

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  • astyanax66
    astyanax66 Member Posts: 288
    edited April 2018

    TresJoli, glad we could give some cheer. Goodness knows there are overwhelming days!

    Dee

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited April 2018

    Thank you all for the feedback on the meals.

    Love those stackable containers, SpecialK!

    I am off for my Prolia shot today. My new MO said 5 years is my goal on Arimidex and he would not, at this point, keep me on it longer. He also did a blood estrogen test! He didn't give me the "oh you have estrogen everywhere and we can't measure it line" like I have heard before.

    Vicky


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  • Suburbs
    Suburbs Member Posts: 429
    edited April 2018

    Tresjoli2, I can only imagine that after beating back the BC beast and getting your fabulous head of hair back (very important!), that just knowing you had an appointment for imaging would be traumatic. To have it be a rotten experience would be harrowing. I now get why Coachvicky describes why a PTSD diagnosis can be more appropriate than depression. Hearing about your experience highlights this point.

    From the medical community, we hear keep stress at a minimum and stay positive, yet ironically sometimes a bad actor can makes things really rotten. I hope you can wake up today and feel better. Hang in there and be well. All the best

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  • shelabela
    shelabela Member Posts: 584
    edited April 2018

    vicky, the meal thing you are doing is awesome. The stackable containers are great. I have tons of them.

    When i had back surgery the bar i work at brought over 2 boxes of pre-made meals. From casseroles in tin foil pans, to easy to heat meals in containers. They also had "crockpot bags" those were super easy and good. That might be an idea you could do also. Each one had the instructions wrote on the bag.


    Today i meet with my PS to talk about my next stage of reconstruction. Ready to keep this moving.

    Have a great day ladies

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  • deni1661
    deni1661 Member Posts: 463
    edited April 2018

    Tres, praying these calcifications are nothing to worry about. I think it's great the technician was observant and took lots of images. Better to be hyper-vigilant than to dismiss any changes, even the smallest. Her comments though were very insensitive for a breast cancer patient and she needs to think a little more before speaking. Additional sensitivity training is in order. Sorry you had to go through all that an

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  • deni1661
    deni1661 Member Posts: 463
    edited April 2018
    Coach, specialk and others, great ideas on the meals! I have a friend going through cancer that needs help and I like the small meals in stackable containers. That would be perfect for her and hubby.

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  • meg2016
    meg2016 Member Posts: 287
    edited April 2018

    coachvicky- one of my favorite meals to do for people is a larger piece of meat (pork roast or beef roast, usually in the slow cooker) and then bring three different sets of "sides" that make it three meals, i.e. first night salad and some twice bakes potatoes, second night taco fixings, third night bbq sandwich buns and sauce and cole slaw, etc. That way it hopefully doesn't end up in the freezer or the trash and they can get a few meals from it. And always take dessert! :) My kids' experience with me having cancer I think was significnatly lessened by the fact that we ALWAYS had dessert in our fridge. ;)

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited April 2018

    Thanks again everyone for such creative ideas for meals.

    I have lots of planning to do!

    Vicky

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited April 2018

    Thanks ladies. I saw my MO today, and I was reminded of why I love her so much. She pulled up all the images, showed me the area that the Radiologist imaged, talked me through why she thought the radiologist had focused on it and asked for so many pics. Reviewed everything herself. Bottom line, there are a few new calcs deep in my breast. However, the pattern is not at all indicative of cancer, and as my MO pointed out other similar areas to me, highlighted that this was nothing, a bit of an over reaction on the radiologists part, but assured me I have the all clear Yay!

    In other interesting news - she retested my FSH, LH and Estradiol levels. She is completely fascinated by the fact that I have normal FSH and LH levels, but no estradiol at all (and no period for three years). She will call me back on Monday with her thoughts, but she thinks perhaps it is the tamoxifen causing the confusing results which would make me menopausal after all. Stay tuned!

    I am now back to my happy, unstressed self. Love to all of you for helping me through it.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2018

    Good news, Tresjoli! How awesome that you have such a caring MO. I should get my FSH, LH, and estradiol levels checked, too. Alas, it has been a crazy semester (teachers' walk-out just ended), so it will have to wait until summer break.

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited April 2018

    Tresjoli2

    Glad you got happy results with your MO!

    As long as your asking her ... this is what I don't get. If we are triple positive (estrogen, progesterone, and HER2) and when estrogen in blocked (i.e. Arimidex or Tamoxifen) there is nothing to tell the pituitary gland to stop producing FSH and make more LH. A rise in estrogen tells the pituitary gland to stop producing FHS and make more LH.

    Do I have this system correct? What say you SpecialK?

    So why do we have any FSH or LH? Or in your caseTresjoli2, results in a normal range?

    Dang ... I wish I had paid attention in biology.

    Vicky


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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited April 2018

    Coach I shouldn't. My FSH and LH should be menopausal if my estradiol is basically zero. Mine were 100% normal for a woman my age. Believe me, my MO will figure it out. She's a research oncologist always publishing papers and I apparently gave her a riddle to solve. She said tamoxifen's effect on fsh and lh hasn't been well studied but was going to look for a study she had read. I'll let everyone know what she says. Its important because it will determine what I have to do birth control wise. I do not want to get pregnant on tamoxifen and basically no one can tell me right now if I am or am not menopausal.

    Happy weekend!

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited April 2018

    by the way...has anyone talked to cherry? She hasn't been around and I hope shes ok?

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  • deni1661
    deni1661 Member Posts: 463
    edited April 2018
    Good news Tres! Sounds like you have a sharp MO.

    Coach - good question on the FSH and LH. That stuff confuses me - I’m interested in special’s input!


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  • CENOK2017
    CENOK2017 Member Posts: 80
    edited April 2018

    My first biopsy indicated ER- PR- HER2+ so that is the sight I originally went on. However, my second biopsy at the cancer center showed ER+20%, PR+around 9% I believe, and HER2+. So, I really feel like I should be in this group. Due to my MO being out on maternity leave, I haven't been able to ask all the questions I want answered yet. Very frustrating. It seems you all have larger percentages of ER and PR than me. Also, is there anyone on here? I only see posts from 2011!

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  • CENOK2017
    CENOK2017 Member Posts: 80
    edited April 2018

    Elaine,

    I live in OK too and go to Stephenson Cancer Center for treatment. Just wanted to say hi.


    Carol

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  • Gudrun
    Gudrun Member Posts: 140
    edited April 2018

    so happy for you, Trèsjoli, and thx for your input about hormone levels. G

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  • Suburbs
    Suburbs Member Posts: 429
    edited April 2018

    CENOK2017, welcome to the group and sorry you have to be here. I hope you find this board to be the life line for you that it is for me. Being triple positive means that there are multiple therapies and the road to recovery may be longer.

    Tresjoli2, good news. You just made a very good point and demonstrated why it is very important to have the right MO and surgeons. It's a long term relationship. There is a commercial running on TV here where a cancer patient says "They took me seriously." That line always struck me as odd. I thought that of course they took you seriously, you have cancer. Now I get it.

    I've been fighting a post surgery infection on and off for months. It looks like things are now getting better with significantly less output from the wound site. I'm tolerating the antibiotic regimen which is good since I will be taking them for some months to be determined. My infectious disease doctor is brilliant and communicates with me often. I'm having weekly blood work and get a call or message within 24 hours with the results and interpretation. I am being taken seriously.

    I'm with everyone else. This estradiol/FSH/LH discussion is new to me. I look forward to learning more.

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  • shelabela
    shelabela Member Posts: 584
    edited April 2018

    welcome Cenok, this thread is very active! You will learn a lot here. Sorry you have to join us.

    My exchange date is set! July 19th. 1 year ago to the day i had my BMX.

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited April 2018

    yay Shela you must be so excited!

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited April 2018

    Shelabela

    What a great anchor to have your exchange on your anniversary date! What did you decide to get?

    Cenok

    Welcome and letus know how we can suppport you.

    Vicky



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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2018

    Hi CenOK!

    I live in Norman and go to the Norman Regional Hospital Oncology Clinic (used to be Mercy Oncology -- long story). Today is going to be a heavy traffic day in town -- Red-White Game with a Trace Adkins concert beforehand.

    Shelabela,

    Congrats on having an exchange date! One more step toward finishing the triple positive marathon.

    Suburbs,

    Glad to hear that your infection seems to be slowly clearing up. You're so lucky to have a doctor that stays in touch.

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