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Response to neoadjuvant chemo?

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  • Momy4ever
    Momy4ever Member Posts: 21
    edited July 2017
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    Hi Mom of twins, I just finished yesterday my 6th and last Xeloda cycle. Will have pet scan in 2 weeks... so scared but hopefull.

  • Momine
    Momine Member Posts: 2,845
    edited July 2017
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    I had neo-adjuvant FEC, with a lobular stage 3 DX. The tumor shrank rapidly during the FEC. After 2 treatments it was halved, and after 4, we couldn't find it. However, on path, they still found active tumor, 18X2 millimeters, so basically a sheet of cancer. There were also 7 positive nodes. I then had 4 treatments with taxotere, followed by heavy radiation. For what it is worth, that was 6 years ago.

  • meg2016
    meg2016 Member Posts: 188
    edited July 2017
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    Thank you Momine, that's so great to hear!

    Doing well here, I pushed my exchange surgery to fall to travel and spend more time with kids this summer, also to try to get stronger to hopefully make recovery easier this time. Having surgery after chemo was a slow recovery... I couldn't believe how weak I had gotten. Getting core strength so I can sit up after surgery without help, lol.

  • Momine
    Momine Member Posts: 2,845
    edited July 2017
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    Meg, yes, I did not have recon. Initially because my doctor asked me to delay all together. His concern was that if I got an infection, for example, it could delay or interrupt chemo. Also, he was concerned about the beating I would take, and as you have discovered, he had a point. Anyway, it ain't fun, but you will get through it.

  • ajbclan
    ajbclan Member Posts: 396
    edited August 2017
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    Hi! Well it's my "cancerversary" today.....1 year since diagnosis. So thankful for this site that helped me get through all the crap we deal with. Will celebrate with a blood draw for my MO appt next week lol.

    All is going....Tamoxifen seems to be ok for me, but we will see what she says at the 1 year marker (she talked about changing it). I'll have my "exchange" surgery in Sept so 1 more thing to do.

    I had that variance on the PALB2 gene, and no word on that yet either.

    I guess quiet is good right now! Wishing you all well...

  • kicks
    kicks Member Posts: 319
    edited August 2017
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    Congratulations on a year! Yestsrday (Aug 8) was 8 yrs for me so I wish you as many more years (and then many more) as I have had and still NED.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited August 2017
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    Hi guys! I was on vacation, so trying to catch up on posts!!

    Momy4Ever, did you have your PET scan yet? If so, how did it go?? Thinking very positive thoughts for you. So happy you finished Xeloda; I hope it went smoothly for you.

    Momine and Kicks, thank you for sharing! Your stories are so inspiring and give us so much hope. Kicks, have you been on hormonal therapy this whole time? If so, which regimen?

    Meg, so glad to hear you're doing well! I don't blame you--there's too much fun stuff going on during summer to plan a surgery! Do you have a date scheduled yet for the fall?

    Ajbclan, congrats on one year! Here's to many, many more!!

    Hope everyone else is doing well! I've been super busy--went on a few fun trips this summer and now it's just non-stop at work. Despite being busy, I still think and worry about BC every day. Still can't shake that feeling of being doomed for a recurrence and the positive nodes still haunt me. Pretty much why I started this thread in the first place! Hope it gets easier with time. I catch myself getting really nervous to make long-term plans. Hate that. Just trying to take it one day at a time.



  • kicks
    kicks Member Posts: 319
    edited August 2017
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    I started Femara 2 weeks after last Taxol (a week after starting rads). At that time Femara was only available as Femara (brand name). When it became available in generic form, letrozole. Since then have been on generic letrozole.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited August 2017
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    Thanks, Kicks! Do you have any knowledge regarding the efficacy of the different AIs? My MO said it doesn't really matter, and she preferred I start with Anastrazole. Wondering if I should push to be switched to Letrozole? I've read some studies that it's marginally more effective. I just want to do everything I can.

    Also Kicks, I see you are PR-. Prior to chemo I was weakly PR+ and after chemo I was PR-. Any information regarding what that means? I've read that it might mean I might be resistant to antihormonals. Your story certainly gives me tons of hope. Thank you!!

  • traveltext
    traveltext Member Posts: 1,053
    edited August 2017
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    Congrats Kicks 08/08 and 8 years NED. The Chinese love a row of eights and would go out and buy a lottery ticket. I'm now 3 years NED post treatment.

    Momine, I had the same treatment as you and after a couple of FECs the tumor was "gone". But no, it was still here at post op path. Hoping the rads zapped the remnants.


  • gocancergone
    gocancergone Member Posts: 2
    edited August 2017
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    Mom of twins, I had quite a bit left over. I was clinical 3C with rotter and intramamary node involement along with multiple matted axillary. They thought I was multicentric as well. Turns out my cancer looked like a big cauliflower or broccoli head and the chemo plus keytruda ( I was on a trial) knocked off the heads but not the base. I was left with a 10.3 cm mass and 3 positive nodes. Rotters was not visible on last MRI and my surgeon did not want to take it, and they leave your intramammary alone. Last PET back in November gave me the all clear. I found a calculater by MD Anderson of great help for us neoadjuvant group with residual cancer. Can't post it here though. Oh and my pr status was a 90% prior to chemo and 2% after. My MO said it just happens and is not something they worry about. Im at UCSF in the SF bay area so I feel a fairly good hospital.


  • ajbclan
    ajbclan Member Posts: 396
    edited August 2017
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    Hi All-

    I have an appt for Thurs for regular follow up with MO, but the blood work came through this am. White Cell, Platlet and one other low. Of course I google and now worry. I've messaged my dr - geez I just want to move forward.


  • Roisin
    Roisin Member Posts: 2
    edited September 2017
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    Hi Mom of twins...our story appears similar. I am stage 2b grade 3 with 2 positive nodes, ER+ and PR+. I did chemo first - 4 AC and 4 Taxol. Then i had a lumpectomy and got clear margins. Once we seen the pathology report it appeared that the tumor actually only had a tiny response to chemo. The tumor was initially 3.3cm and after chemo it was 3cm but the nodes showed good response.

    I am on tamoxifen and zodalex and about to start rads.

    I am so scared this has made my prognosis worse than i imagined.

    Have you any information or advice from your experience ?

  • lily2
    lily2 Member Posts: 10
    edited September 2017
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    Hello everyone, although I am not er+ I had a complete responce to neoadjuvant chemotherapy .I was told that I had axillary and internal mammory nodes involved from petscan but none were ever biopsied. They did however show up clear on the breast mri I had after my 5th treatment.it also showed residual cancer in my breast but final pathology showed no cancer just benign calcifications and inflammation with a big scar from the initial biopsy 5 months prior.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited September 2017
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    Roisin, yes, we definitely were in a similar boat. It's just so disappointing when you think you had a great response, to only find out that chemo didn't do as much as we'd hope. Obviously, it wouldve been better prognostically if we had a complete response; but from what I'm told, that's fairly uncommon for strongly ER+ patients. I've been told by several, reputable MOs that hormonal therapy is our best defense.

    Lily2, congrats on a complete response. Amazing news!!

    Ajbclan, sorry I missed your post somehow! I'm sorry to hear about blood work. What did your doctor say? My levels have been low since chemo, too. Starting to think it's just my new normal.

    Gocancergo, thanks for sharing! Interesting that your PR level was lower after chemo, too!

  • lily2
    lily2 Member Posts: 10
    edited September 2017
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    Thanks mom of twins!! I can tell you I really wasn't expecting a pcr.I don't think my MO expected a pcr due to the extent of cancer in my breast and lymph nodes,my original plan was a radical mastectomy with full axillary removal, but ended up having a quadrantectomy with 2 sentinal nodes removed.I'm still in disbelief and think they missed something on pathology but I need to get over it and think positive with having such good results.lol

  • meg2016
    meg2016 Member Posts: 188
    edited October 2017
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    I have been doing some reading lately on PCR as a predictor of recurrence, it seems that particularly in triple positive and also in high ER/PR cases it isn't quite as good an indicator. I suppose that makes me feel a little better. I'm headed into my exchange surgery next week so I have things I worry about other than that for the immediate future. Then I can go back to worrying about recurrence. :) Hope everyone is doing well!

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited October 2017
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    Thanks for sharing that, Meg!! Good luck with your exchange surgery...let us know how it goes!

    I've been especially worried about recurrence lately. Ugh.

    How's everyone else?

  • reflect
    reflect Member Posts: 280
    edited October 2017
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    Hi Meg and Mom, I sometimes go down that dark road wondering about recurrence, mets, but I have a full and busy life going on here and it's a great distraction. I am also planning regular family happenings to build good memories, and that has been fun and feels like a positive thing I can do for the future. My perspective has certainly shifted.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited October 2017
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    reflect, I feel the exact same way. Thankfully, life is so full and busy that I’m forced to focus on other things. So glad to hear you’re doing well

  • meg2016
    meg2016 Member Posts: 188
    edited October 2017
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    Had my exchange yesterday. So far not much pain despite quite a bit of work on my radiation side. Can't really tell cosmetic result yet, but they feel a lot better than the expanders! Also seeing my MO this week, will ask as always about any new drug options  for recurrence/side effects, we talked a little about Prolia last time. If I hear anything I'll report back.

  • Hammie28
    Hammie28 Member Posts: 29
    edited October 2017
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    Hello everyone... I haven't posted in a while because I was out and about enjoying life and trying not to obsess. It looks like I may get Ibrance after all. I had a MRI of my back to investigate lower back pain last week and there was a suspicous finding that needs to be biopsied. My doctor suspects that it is mets. I'm devastated. It sounds like I'll be given Ibrance once we know something for sure. For those of you who did the PALLAS study, I'd really like to hear how you're doing. There is a whole thread dedicated to Ibrance on the stage IV forum but it is just too serious for me right now. Thank you all and best wishes.

  • meg2016
    meg2016 Member Posts: 188
    edited October 2017
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    Hammie28- I just wanted to tell you how sorry I am to hear that. I will be thinking about you and hoping the biopsy turns out to be nothing. We are here for you, let us know how we can help and keep us posted on how you are doing. I didn't do PALLAS, so I'm sorry I can't help there.

    I did ask my MO about Neratinib, she indicated the side effects aren't worth it for most people and it isn't something she would use for ER/PR+ since AI is an option.

  • legomaster225
    legomaster225 Member Posts: 356
    edited October 2017
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    Sorry to hear your news Hammie. Praying for the best outcome and the best response to any needed treatment. I did not do the PALLAS study either. Just wanted to wish you well.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited October 2017
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    Hi Hammie, I’m sosorry to hear you’re going through this. I know it must be terrifying, but holding onto hope that it’s benign. Please keep us posted and let us know if there’s anything we can do. I’ll be thinking of you.

    I’m enrolled in PALLAS, but am in the control arm so can’t help either.

    Big hugs to you and we’re here for you!

  • Hammie28
    Hammie28 Member Posts: 29
    edited October 2017
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    Thank you all. I know this thread began with some of us who were not satisfied with our response to chemo and hoping for additional treatments. I had a lot of tumor left and positive nodes after chemo. My tumor did show some response but not what we had hoped for. Everything that ever showed up on a scan was removed with my surgery... but it just seemed improbable to me that there were no stray cells.... somewhere; waiting to pop up. I'm still praying that this "concerning" lesion is something other than cancer but that seems improbable as well. I hope that one day drugs that are reserved for MBC can be considered for women like us. (I looked into PALLAS, but learned about it too long after my diagnosis date). Its strange in some ways I already thought of myself as StageIV... because I was so certain that the cancer was still there somewhere and as soon as treatment ended it would show up again. I had hoped to have a bit more time before dealing with cancer again. Its been only two years since my diagnosis. First year was spent in treatment. Second year has been spent on reconstruction. I have (had?) one final revision surgery scheduled in two weeks that would have been my FINAL surgery and I was so looking forward to being DONE with all of this.

  • ajbclan
    ajbclan Member Posts: 396
    edited October 2017
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    Hammie- this just seems never ending doesn't it? I am praying this is not what you're expecting. I had a friend recently get diagnosed with a tumor in her brain...she originally was diagnosed with BC only 2 weeks before me. Its ridiculous. Even though we may have had "you're cancer free", obviously with her it didn't friggin matter. So how are we not suppose to be fearful constantly. Ok I vented lol.

    I'm recovering from the exchange surgery in sept. It's funny- still don't feel normal. I think everyone still thinks it's a boob job and those women just move on with life. Um no. Also my PS said we can possibly do some additional items next year after we see how they settle in, even to the point of changing them out again. I guess my body shape is odd, and so it's affecting this process. whatever.

    Hope everyone is having a good weekend!! Happy Halloween :)

  • SimplySammi11
    SimplySammi11 Member Posts: 9
    edited November 2017
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    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2782490/

    Has anyone here tried this. I hear it really helps especially chemo reisistant chemo patients.

    Just thought I’d share this with you gals because I ran across it in a FB group and so many people swear it works wonders!image

  • emily_mh
    emily_mh Member Posts: 53
    edited November 2017
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    hi everyone, I hope people are still posting on this thread. I finished chemo last wed and had my follow up mammo and ultrasound today. My tumor was 4cm and it looks like there is 1.4 cm left. I'm triple positive so I guess that's not surprising, just disappointing. Surgery is at the end of the month and I'm still deciding what to do. Triple positive is aggressive, I'm grade 3, dense breast s I thrilled mastectomy but my MO say she would do lumpectom. Anyone else have or had this choice?

  • reflect
    reflect Member Posts: 280
    edited November 2017
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    Hi emily, I'm glad you are done with chemo. I only had a partial response also. The surgery decision is hard, and very personal I think. I went around and around, realized there are no "good" options and finally landed on lumpectomy. (after starting with bilateral mastectomy!) My understanding was (in my case) statistically my outcomes were the same, and I could remove my breast later if necessary. I just wanted to do the minimum., with the maximum protection. Whatever you decide on, move ahead with confidence and don't look back! Wishing you the best.