PCR and NED people: how did you know it was working?

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Mamiya
Mamiya Member Posts: 432
edited January 2016 in IBC (Inflammatory Breast Cancer)

When you were going through neo adjuvant chemo did you know it was working or were you unsure and pleasantly surprised at surgery or maybe it didn't work, did you feel that??? My scans at half way showed a lot of improvement. Then we switched to the second drug combo and now I am freaked out that it isn't working (but I am probably wrong since my MO keeps telling me that it IS working and he can tell). I get all kinds of weird pains and stiffness and just weird feelings from clavicle to rib cage to armpit to sternum, I don't know what they mean (could be signs that the cancer is being killed, could be signs that the cancer is getting stronger, arrrrrgh, who knows??!!)

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  • cassylou
    cassylou Member Posts: 52
    edited December 2015

    hi not done yet,

    I hope you've had a fab Christmas. I have but I very much feel like I've been burning the candle at both ends.

    I completed AC and Taxol/Carbo earlier this year (October 15th) and had a double mastectomy on the 13th of November. I had 2 tumours in my left breast. On and off throughout the chemo I felt pain. Stabbing pain in my breast and rib/ shoulder pain. My tumours couldn't be felt due to their location so I had 3 progress ultrasounds throughout.

    The first on AC showed shrinkage. The second on Taxol/Carbo showed minimal shrinkage I was sure this meant that the taxol/Carbo combo wasn't effective for me), then the last showed that one was no longer visible on the ultrasound but the second had remained the same size.

    Throughout I mentioned the breast pain to my onc but she suggested that it was the chemo doing its work. I didn't fully believe her but I tried :) I also had some swelling of the breast but she wasn't concerned about this.

    When the pathology came back after my mastectomy, there was no sign of any residual cancer so I guess my onc was right after all!

    Take care and feel free to message me if you have any questions at all. Cass X

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  • Mamiya
    Mamiya Member Posts: 432
    edited December 2015

    Cass,

    Thank you. I have all kinds of weird stabbing and burning pains that make me worry that the FEC isn't working. For some reason I felt like the carbo/taxol was working but when I switched I lost confidence. Maybe because the obvious outward signs are much less dramatic now (during carbo/taxol the sheeting/mass shrunk in half and now I can't really tell what is going on). I am a bit freaked out this week because I have a small area of rash on the IBC breast that hasn't been there at all since the first carbo/taxol. I go tomorrow to see my oncologist and get treatment so I will see what he says.

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  • bride
    bride Member Posts: 382
    edited December 2015

    Hi notdoneyet,

    After my first infusion I felt like WWIII was going on in my breast. It felt like there were explosions, weird bolts of something (non-painful) and other oddities. By the time of my second infusion, my nipple wasn't inverted and the soft mass which an old scar made palpable was gone. And I never felt anything more in my breast. Still, by the time I started on FEC, my US showed some masses, though they were much smaller than originally. My post-MX showed NED. I'm guessing the FEC silently wiped out the remaining bits of cancer.

    If it weren't for the side effects, after my first infusion I wouldn't have known my BC was even being treated. In my case, FEC did its job.

    Wishing you the best,

    bride

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  • Mamiya
    Mamiya Member Posts: 432
    edited December 2015

    thanks Bride, I appreciate that. I am trying to believe that the FEC is working. The palpable mass that started at 10cm is now 2cm and not getting any larger (not noticeably smaller either though). I have a rash that is scaring the hell out of me right now but saw onc today and he thinks it is a reaction to the antibiotics I had last week, watching it for a week and if it stays or gets worse will biopsy. Ugh, I just want to be one of the lucky ones

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  • bride
    bride Member Posts: 382
    edited January 2016

    Notdoneyet,

    I was badly allergic to Taxotere and, 2 years later am still dealing with its side effects. Taxotere gave me 6 months of chronic diarrheal illness, a complicated sinus infection that I'm still being treated for, two hospitalizations, transfusions and more. It was a rough road.

    But I'm one of the lucky ones. I'm not who I was but I'm 15+ months NED. Don't give up hope or your faith that you are stronger than IBC. Your hope and faith really can help you battle IBC.

    May your New Year be all you wish for!

    bride

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  • Brightsideplease
    Brightsideplease Member Posts: 34
    edited January 2016

    Hi Notdoneyet,

    I was just very hopeful, it felt like it was getting smaller but I wasn't sure if it was wishful thinking ora reality. It turns out it was reality. Mine started at 6+ centimeters and after A/C&T and BMX(which I still did as I'm BRCA1 also) I found out 12/24 I'm PCR....my tumor made my whole body warmer, I'm usually very cold. As it shrank the heat did also...HAPPY New year to you, and all here, I wish you health and happiness!!! :

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    Bride and Brightsideplease, thank you for your words. I am dealing with a mysterious rash on the IBC side that I am at once convinced is skin mets that means that the chemo isn't working but at the same time I want to believe it's "just a rash" (onc saw it Monday and watching for a week then will biopsy).

    The tumor has shrunk significantly since the beginning of treatment so that gives me some comfort :)

    Happy New Year to all, may 2016 bring us all good!

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  • Sherlocked
    Sherlocked Member Posts: 46
    edited January 2016

    Hi, NotDoneYet. I could tell my chemo was working very quickly, I could see the tumor retreating. But of course, had no idea if it had gotten rid of all of it until mastectomy (it had). But I did want to tell you that I experienced various pains in chest, breast, and armpit after chemo started. Whether they were related to tumor death, sudden tissue changes (big tumor retreating), or various other possibilities related to chemo, I couldn't say.But, it was a bit painful, and the chemo did work, I can say that.

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