Positive chemo first stories?!

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LillieRose
LillieRose Member Posts: 112

I'm having a really hard time doing chemo first... I feel the tumor nonstop to the point where it actually is sore from me touching it.. I'm doing 12 weekly Taxols first and it hasn't shrunk yet at #8. I am freaking out. Do I move on to AC or just have surgery and do chemo later.... ?

When I bounce around to read other peoples stories I feel like a lot if people who did chemo first had Mets years later... I feel like I should get this thing out... Like I should have done when first diagnosed! :(

Comments

  • Amanda10
    Amanda10 Member Posts: 71
    edited June 2015

    Hi lillierose

    I totally understand how you are feeling. I was diagnosed in nov 2014. I had a very large lump and like you was checking it all the time ( to see if I could feel it shrinking) To such an extent my daughter was constantly telling me off.

    Anyway having walked round with the beast for 6 months it did eventually shrink. I had 4x fec then 4 x docetaxol ( im in UK so treatment may vary slightly)

    I've just had mastectomy and delayed reconstruction. I was so happy just to see it gone. I'm having 3 weeks of radiotherapy in a few weeks.

    Hang on in there the time will go really quickly and before you know it it will be gone,

    Sending you a big hug xx

    Amanda xxx

  • LillieRose
    LillieRose Member Posts: 112
    edited June 2015

    thank you Amanda! How long until you saw a difference? It is so hard to have it there... I want it out! :(

  • Amanda10
    Amanda10 Member Posts: 71
    edited June 2015

    I had FEC and then docetaxol. I think that FEC worked best for me. If one isn't working so good I know they often change over to another.
    It was mentally very difficult for me as well at the time but I'm glad now that it was done that way round.
    The time will fly by so hang on in there. Amanda xx
  • Portlandia
    Portlandia Member Posts: 1
    edited June 2015

    Hi, new person here. Diagnosed two months ago (I'm in the U.S.) and will soon have 3rd of 6 chemo sessions. Question: My oncologist told me there would be no MRI monitoring during the chemo, just 6 straight sessions. My SURGEON told me they would not wait that long and will do an MRI soon to see if it's shrinking. Any experience from others? Thanks

  • Amanda10
    Amanda10 Member Posts: 71
    edited June 2015

    Hi portlandia

    I'm from UK so may be a little different from US. I had 8 cycles altogether, I had three MRI scans. One at the beginning one in middle of treatment and one at the end just before surgery. I think that is pretty standard here.

    I'm about to start radiotherapy next week. Done the chemo and surgery.

    Hope your treatment goes well xxx

    Amanda

  • Secondchance15
    Secondchance15 Member Posts: 20
    edited June 2015

    Hi, also new here. I was diagnosed with triple negative IDC with node involvement in February 2015, and started neoadjuvant chemo right away with 6 rounds of TAC with the last one on June 10. I had an MRI pre treatment, but was told by my surgeon that insurance does not pay for mid treatment MRI. Therefore I had an ultrasound and mammogram after my third treatment. The mammogram did not appear helpful as it showed no change due to the density of my breasts, but ultrasound showed the tumor breaking up with ~ 50% shrinkage in tumor size from just over 4 cm to 2 cm and that the node had also become smaller. I just had my post chemo MRI and mammogram earlier this week and am still awaiting the results. Overall I feel that I handled chemo fairly well, with more and more fatigue building each time, but manageable. I definitely feel a difference at the tumor site, but since my third treatment, I have felt my axillary node increase in size a bit and my breast and axillae ache, with the discomfort sometimes radiating down my back. I did not have this during the first half of treatment, and it seems worse after this last treatment; wondering if anyone else has experienced this toward the end of treatment? I've been told it can be fibrosis or necrosis, the cumulative effects of the chemo on the tumor areas, and/or the body is hard at work trying to clear the dead cells out (like little pac mans chomping it up) or any combination of the above. I find it hard to believe that it could signal anything negative after having such a good initial response, but it's hard not to worry.

    Thanks,

  • Amanda10
    Amanda10 Member Posts: 71
    edited June 2015

    hi secondchance15

    Glad to hear you are not getting too many side effects from chemo. You mentioned that you got breast pain and back ache. I had this all through chemo especially in rt shoulder. This continued after surgery it became so painful it woke me up at night.

    Anyway I asked for a bone scan as I was getting worried. The scan came back clear. I started doing the arm excercises after surgery and the pain has now gone. I think like you said it was a result of chemo.

    Wishing you well for rest of treatment

    Amanda xx

  • Secondchance15
    Secondchance15 Member Posts: 20
    edited June 2015

    Thank you for your reply Amanda. Glad to know I'm not alone regarding the pain. It's a little better today, but I'm concerned about the nodes I can feel so well now when they had been shrinking. I'll find out tomorrow what the MRI picked up. Hoping for the best.

  • Fiercer
    Fiercer Member Posts: 45
    edited July 2015

    Hi Lily rose. I had chemo first and don't regret it at all. I'm a very visual person and it helped me to picture the chemo killing the tumor. I felt mine constantly to the point that I irritated my breast. One night while laying on the couch with my boyfriend at the time, now husband, I felt an odd feeling where the tumor was, it felt like a soft touch from a finger, lightly caressing the spot. I woke up and asked Jeff if he was touching it. He said no, but I believe that was the night it died. My lumpectomy and then tests with contrast showed the cancer was dead. My tumor did shrink a little, but not much. I also believed that chemo first would let me know it was really working. How would you know if the Cancer was removed first? I also imagine if there were any small tumors they would have been killed as well.

  • Nikki1986
    Nikki1986 Member Posts: 21
    edited August 2015

    Hi I had chemo first. 4 AC and then 12 Taxol with carbo thrown in every 3rd time. I had an US, mammo, MRI and PET scan all before starting treatment. After the 2nd AC neither my MO or I could feel the tumor anymore. I never had anymore imaging done. Not sure if thats because we could definitely feel that the chemo was working. When I had BMX almost 8 weeks after chemo was done I had NED. So I liked doing chemo 1st because I liked to feel the results and hear the positive news when BMX pathology came back. Good luck to you!

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