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Response to neoadjuvant chemo?

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  • ssinuk
    ssinuk Member Posts: 63
    edited February 2017
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    Ajbclan few more tips - get an IPAd pillow stand that means it sits stable in bed on your knees whatever. Brilliant thing, a post BC friend gave me and she was dead right! 2. Get people to visit. Everyone whose offered help or interest - ask them to come. Don't lie in bed alone thinking when your body is a bit beat up. 3. Totally with Netflix series - if you haven't seen it The Good Wife will get you all through recovery!!! 4. Juicing makes you feel like you're putting health back in your body and if you do it in something like a nutribullet the roughage helps more than anything with post op constipation. 5. Be prepared for it to suck somewhat - lack of sensation, change in the feeling of your body - it's all difficult stuff. But many have gone before you and live with it fine it will get a whole load better.

    Momy4ever - very good to hear you're having Xeloda that makes sense. You have to heal before rads - but not delay too much for the implants. In the end they may not be your final solution of rads affects them. There are actually a bunch of studies about good results with doing RT with implants deflated, filling them after.

    Houston that sounds horrible. I think what you're using is am the right stuff - just keep it going and give it time. If it's any comfort people with a response line yours seem to heal completely. Oddly I had less soreness but have seemingly permanent darkening of the skin all over the area. The longest effect is likely to be stiffness as it settles - ask for some good Physio as you recover / it really helps say 6 months out.

    Humbling to think that of all women in all human history, we have way better chances than any women who ever lived and suffered this

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited February 2017
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    SSinUK, yes i tell people, "there is never been a better time to have breast cancer."

    Also, among the various cancers, this is a good one because of this site. I have heard of people with other cancers feeling very isolated.

    Best wishes to everyone :)

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited February 2017
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    ajbclan, how are you feeling? Was thinking of you yesterday and hope that everything went smoothly!! Check in with us when you feel up to us. And here's to a speedy recovery!

  • minustwo
    minustwo Member Posts: 13,132
    edited February 2017
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    I know some people really want visitors, but everyone is different. Don't feel obliged to let people come.

    I did not want anyone sitting with me at chemo. I wanted to read & sleep. I did not want anyone visiting me at home for at least two of the weeks between treatments. When I wasn't sleeping I had severe diarrhea and was in the bathroom. It was a time for me to hibernate & heal.


  • Patrickm
    Patrickm Member Posts: 1
    edited February 2017
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    Hi.

    My name is Patrick and my wife was diagnosed with 3a tnbc back in Sept. Just seeing if you heard of any clinical trials and how you responded to chemo?

    Pat

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited February 2017
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    High-five, MinusTwo! I had the same attitude.

    Patrick, triple-negative breast cancer responds the best of all types to chemo. That's about all i know. Best of luck. "Hard times, but there's more love" says a musician i like named Old Man Luedecke. Take care of yourself as well.

  • minustwo
    minustwo Member Posts: 13,132
    edited February 2017
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    Patrick - there are threads for TNBC and for trials. Take a look at "all topics".

  • minustwo
    minustwo Member Posts: 13,132
    edited February 2017
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    Tunegrrl - way to go girl. Nice to know I'm not the lone ranger.

  • ajbclan
    ajbclan Member Posts: 396
    edited February 2017
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    Hi Everyone- finally feel like I can hold the computer today. Had BMX last Tuesday. Went fine, had a sheety night nurse, but once she left things got better. I've been sore and uncomfortable, but pain is manageable. Went to Tylenol and didn't even take anything today. 2 of 4 drains out today- ready for them all to go so I can shower! The TE's are definitely uncomfortable.

    Should have the path report Thursday, but in surgery sentinel node was clear. Will be anxiously waiting for what the results are.

    Agree with the visits lol.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited February 2017
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    ajbclan, so glad you're doing well and sounds like you're definitely turning the corner! Each day will get easier. And awesome news that the nodes appear clear! Praying for the best path report for you.

    Make sure you keep resting, and keep us posted on how you're doing!

  • ajbclan
    ajbclan Member Posts: 396
    edited February 2017
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    Ok Mom of Twins- you are learning this before some family members as this was the main objective of this board. I just left the surgeons office- 1 week out from BMX, skin looks healthy down to 1 drain. A reminder I had 4 tumors, after chemo #3 of 6 I had an ultrasound. 3 of the masses were shrinking- big daddy wasn't budging. So I was not expecting to hear- IT'S ALL GONE.....complete response to the chemo! What?!!! My goal was to kill any swimmers- never ever expected this. Finally something positive....thank you for always encouraging and checking in!!


  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited February 2017
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    Ajbclan, oh my gosh!!!!!!! THAT IS THE BEST NEWS EVER! I'm so excited for you. That is the best possible scenario in this whole BC nightmare, and I'm so thrilled that it happened for you. Here's to an excellent prognosis! Thanks so much for bringing us the good news. Time to celebrate! By the way, how are you feeling physically??

    How's everyone else doing?

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited February 2017
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    Wow!!! Amazing new ajbclan! You are living the dream we all wish for. Congrats!!

  • ajbclan
    ajbclan Member Posts: 396
    edited February 2017
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    Thanks ladies.....I know that others have expected it and been let down. I didn't feel I needed it (because always planned the BMX), just needed to know it was working. I wasn't even registering that I had a 4.5cm "mass" of 4 tumors when all of this started.....so who would have thought right? I guess it gives others hope....and we all need hope with this crap.

    Side note- I had done the genetic testing and had a variance on the PALB2 gene. A 2nd cousin had BC 9 years ago (at 47) and back then the testing wasn't as extensive. We weren't too sure her dr's would approve or push for her to get tested again, but I sent off my packet of results to her. They have approved to re-test her....should be interesting! Our mom's are cousins, and both of them had BC but at an much older age. Everyone has come back negative for the big 1 & 2, so this is the first hint of something running in the family. Should be interesting.

  • meg2016
    meg2016 Member Posts: 188
    edited February 2017
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    ajbclan- great news on the complete response!!

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited February 2017
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    I am also doing chemo first. I have finished 12 rounds Taxol and started DD A/C last Friday. My tumor (2.5cm) has shrunk a lot but I can still feel it. I am afraid I won't get PCR in the end which actually is normal for my low ki67 and high er/pr I think.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited February 2017
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    steph, it's great you're feeling it shrinking! And yes, most strongly ER+ cancers don't get a PCR...but good you're seeing some response. And particularly with your low proliferation rate. But those are great prognostic factors to have, and you should really respond well to hormonal therapy!!

    Good luck! You never know; will still hope for a PCR for you...but even if not, you have a lot to be optimistic about!!

    Keep us posted!!

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited February 2017
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    Hi everyone!! Just checking in to see how everyone is doing. We had an unexpected and beautiful weekend here in Chicago (in the 70's in February...crazy!). Anyway, just getting back to things and thinking about everyone. Hope all is well. Check in when you can

  • meg2016
    meg2016 Member Posts: 188
    edited February 2017
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    It was a beautiful weekend! Oopherectomy is next week for me. Ready to get that done. I also have some appointments with genetic counselor and Dr- I did a full gene panel test (not just BRCA) due to some family history. I had an unknown mutation on Chek2 gene. Some of the known mutations on this gene have indications for other types of cancer as well as high breast cancer risk. I am just meeting with them to see what new information may be available since my testing was almost a year ago (its a rapidly developing area right now.) I might start having some additional tests if it is recommended. Next week marks 1-year from my original diagnosis- crazy how long this year has been!!

    Mom_of_twins - how are you doing? How is the trial going?

    Would love to hear how everyone else is doing!

  • Hammie28
    Hammie28 Member Posts: 29
    edited February 2017
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    Hi there. Im still around. Scheduled for DIEP surgery next week. There's a stomach bug making the rounds at my child's school and I'm just praying it doesn't strike our family! If I had to cancel, I'm not sure I could deal with all this anticipation a second time

  • Tunegrrl
    Tunegrrl Member Posts: 151
    edited February 2017
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    Good luck, Hammie!!

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited February 2017
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    Hi Meg! I'm doing good; the trial is fine. Just go in for bloodwork once/month...after this next one it goes to once every 3 months. It's a bummer to be in the control arm because I still want to do more!! Are you guys also still struggling with feeling like you want to do more to prevent recurrrence?

    Meg, good luck with the ooph! Will be nice to have that behind you. It's good to explore the genetic link; I think there's so much more to learn regarding genetics and BC.

    Hammie, praying you stay clear of the stomach bug and have a smooth surgery! Keep us posted with how you're doing.

    Hope everyone else checks in, too!!

  • reflect
    reflect Member Posts: 280
    edited February 2017
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    Wishing you great outcomes, meg and hammie. I'm having shortness of breath and dry persistent cough. I did have a chest cold 2 weeks ago but this feels different, and ...just not right. Called MO today and she wants CT but insurance won't pay so she's ordered blood work and they are setting up an echo for me. WAAAAAAAH. Wish me luck, could be any number of things including nothing I suppose.

  • meg2016
    meg2016 Member Posts: 188
    edited February 2017
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    reflect- here's hoping it's nothing! Crazy that insurance won't pay!

    Hammie-good luck!

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited February 2017
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    reflect, praying it's nothing and just your residual cold. Will be thinking of you and please keep us posted!! Hang in there. Could be anything

  • reflect
    reflect Member Posts: 280
    edited February 2017
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    Thanks, I am avoiding advance panic!

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited February 2017
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    Reflect, I can imagine!! I try hard not to worry about things that haven't happened yet, but it's hard. Take it one day at a time. Do you know when your testing is

  • RubySlips
    RubySlips Member Posts: 21
    edited February 2017
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    Reflect, if it makes you feel any better I was just suffering from shortness of breath a couple weeks ago for about 4-5 days, pretty constant. And I hadn't had a cold even. My doctor ordered a chest X-ray, then I had my echo (which was scheduled due to herceptin anyway) then a CT on my abdomen and chest. All came back negative! (I told them they should change that word for those of us that aren't in the medical field and are hoping for "positive" results.)

    At the end of the day we think the changes in hormones (tamoxafin) might have wreaked havoc on my body causing a feeling of shortness of breath and at some point I just got inside my own head and it probably became anxiety related. Just thought I'd share since it was so terrifying but in the end, all was well and my breathing is back to normal. Hoping for the same relief for you!

  • reflect
    reflect Member Posts: 280
    edited February 2017
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    Thanks Rubyslips and Mom. I am hoping it's related to the previous cold. I'm waiting for a call for the echo --OMG JUST got the call--1:00 today. Need to get bloodwork done too, I asked and she said just CBC so not sure what they are looking for there. Will let you all know when I know something.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited February 2017
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    reflect--good luck on echo! Let us know how it goes. My I guess is they're trying to rule out heart issues from the Adriamycin as a rare complication of it is cardiotoxicity? How are you feeling otherwise?