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Response to neoadjuvant chemo?

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Comments

  • Hammie28
    Hammie28 Member Posts: 29
    edited February 2017

    best wishes Reflect! I will tell you that I have been short of breath since treatment. Had a cardio work up and all was well... it's just lack of conditioning. I hoping for good results for you

  • ajbclan
    ajbclan Member Posts: 396
    edited February 2017

    Hi Everyone-

    Trying to catch up - Reflect yes, keep us posted! So interesting Ruby what you said about the Tamoxifen and anxiety...I'm starting it up next week and told my husband- watch out if I get crazy lol. My daughter has been dealing with anxiety issues, headaches, dizziness- I think it's all related- man what our brain can also contribute to our overall health.

    Hammie- wishing you the best next week! Let us know how you're doing when you can.

    I'm still learning to deal with the TE's, have now a lovely seroma near my sentinel node biopsy site. Not draining it yet- I've seen the BS, and we're on the fence so waiting to talk to the PS next week and see his thoughts. I don't need another infection - be my luck lol.

  • mom_of_twins
    mom_of_twins Member Posts: 124
    edited March 2017

    Hammie, just thinking of you. How did your surgery go? Let us know when you can.

    And Meg, how did your ooph and genetic counseling meetings go? Hope it went smoothly and you are recovered by now.

    Reflect, hoping your cough is gone by now and your test results were good.

    ajbclan, did the seroma clear up? I hope so!!

    Everything is good here. Work and my girls are keeping me very busy, but I still have daily dark moments of worry. Still struggling to find peace with just being on an AI; it's just so hard! I'm still in the control arm of the PALLAS trial. Had to go in for blood work and an exam every month for 3 months, and now have to go every 3 months for the remainder of the study (total of 2 years). It's nice to have some space in between appointments. Just walking into that place makes me almost nauseous!! There's an Au Bon Pain in the lobby, and as soon as I walk in the door, there's that familiar smell. Yuck. Anyway, happy I don't have to go back there until the end of May.

    Anyway, was just thinking about everyone and wanted to check in. Please let us know how you're doing!!

  • ajbclan
    ajbclan Member Posts: 396
    edited March 2017

    Hi Ladies- had to look back at what I wrote lol. Glad you are doing well for the most part Mom! Are you having any side effects? I had to remind someone that this always stays with us.....everyone else thinks you're done and fine.

    I ended up with an infection that the BS has drained twice now. Still red and angry looking, so gross. I just put a call into an infectious disease Dr. Oh joy. Just need whatever it is to stay away from the TE's. So that's where I am. I'm moving my arms better, but now fatigued still and it's probably as I've been fighting an infection for about 10 days.

  • reflect
    reflect Member Posts: 280
    edited March 2017

    Hey Mom and everyone! Yes, my echo was fine and that cough cleared up. Very grateful. Now having lymphedema flare up and seeing PT this morning. Must have done too much although I am very careful. But...folding too much laundry? Really? New rules for me and I keep thinking of new things I may not be able to do anymore.

    Sad

    I know what you mean about dark moments Mom. I'm thinking about meditation, Tai Chi, and regular exercise (and where will the time come from? lol) Seriously, I need to get moving.


  • mom_of_twins
    mom_of_twins Member Posts: 124
    edited March 2017

    ajbclan, oh I'm so sorry about your infection! I hope it clears up soon. Try to get some rest if you can!!

    reflect, yay for great news!!!! I'm so happy that the cough resolved and your echo went well. That must have been a relief. Sorry about the lymphedema though...that must be hard. I hope it settles down soon

    I'm happy it's Friday! Feels like it's been a long week, and looking forward to the weekend with my little girls. Happy Friday everyone!!! Hope to hear from others, too. :)

  • ajbclan
    ajbclan Member Posts: 396
    edited March 2017

    Funny I just read about meditation and helping ward off dementia- even 1-2 min a day! Still infection fighting here....can't exercise, no fills.....waiting game :)

  • Hammie28
    Hammie28 Member Posts: 29
    edited March 2017

    Hello. I'm doing ok. Still moving slowly but improving each day. Just checking in here to see if there had been any discussion about the drug that was just approved... Kisqali. I know many of us wanted additional treatment after not so great responses to chemo. Has anyone heard if this is an option for Stage 3

  • mom_of_twins
    mom_of_twins Member Posts: 124
    edited March 2017

    Hi Hammie, glad to hear you're getting better each day. Ironically, I just read an article about that drug, and know that it received FDA approval for stage IV. Don't think it's approved for stage III, or if any oncologists would prescribe it.

    Hope everyone is doing well and that you have a great weekend!!

  • Atha85
    Atha85 Member Posts: 6
    edited March 2017

    Hi everyone,

    I am in similar situation.I had 4.4 cm tumor at diagnosis and NAchemo showed full response. There was no palpable tumor or anything on the MRI.

    However, post surgery i found that there was 1.2 cm tumor still left inside plus 4/6 nodes positive

    I am just hoping the hormonal theraphy works for me. My docs have prescribed Zoladex and AI for a decade.

    I read in some of the posts and I'm curious to know, what are surgical margins??

    Also, how do I get my signature like most of you have about diagnosis and treatments. I have already updated my profile.

    Thanks

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited March 2017

    Hi Atha85, do you mind telling me what your ER/PR percentage is?

  • Atha85
    Atha85 Member Posts: 6
    edited March 2017

    hi Stephilopsy,

    ER is 100% +

    PR i guess is 38% + , I dont remember clearly. Will have to check.

    Thanks

    Akshada

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited March 2017

    I am pretty sure hormonal therapy will work very well for you!!

  • Atha85
    Atha85 Member Posts: 6
    edited March 2017

    thanks stephilosphy!!

    All the best everyone with your treatments. I hope all of us are out of this soon!

  • Atha85
    Atha85 Member Posts: 6
    edited March 2017

    hi momoftwins, just going through some of your posts.

    I have been taking Zoladex shot once in 3 months instead of every month for ovarian supression.

    You might want to check the possibilty with your doc, this would reduce your shots to 4 a year

  • meg2016
    meg2016 Member Posts: 188
    edited March 2017

    hi everyone!

    Ooph went well. Having some hot flashes and I really wasn't before ooph, which makes me wonder how well the lupron was working? In any case I'm glad to have the oophorectomy done!

    I have my last herceptin this week, then port removal soon. I can't believe I'm really at the end of a year of this! I still worry about recurrence a lot, but staying busy helps. I'm doing a pilates reformer class, which seems to help a lot with my tightness post surgery and radiation. I also start a mindfulness meditation class next week. Hoping these also help with the worry!

    Hope everyone else is doing well!

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited April 2017

    Hi guys! I just had a post-chemo ultrasound today. After neo-adjuvant chemo, the lump has shrunk from around 2.8 cm to 1.8 cm, and the involved lymph node looks as normal as others. I'm glad chemo does do its job to shrink the lump and clear the node, but I'm still worried there actually might be some "micromets" in more than one nodes. I will see the breast surgeon next week, let's hope for the best.

  • SkiChick86
    SkiChick86 Member Posts: 16
    edited April 2017

    Hi ladies - I am so thankful to have found this thread! I had 4 rounds of AC chemo for ER+/PR+/HER2- IDC. Initial imaging made it look like I had one, maybe two nodes positive. I had my mastectomy on Thursday and while there was a good response to chemo within the breast, they found cancer in 4 out of the 8 nodes they took, including extranodal extension. One sentinel node had 9 mm of cancer and one other node had 8 mm, the other two had scattered cancer cells. I'm pretty disappointed to be bumped into the Stage III category and having a hard time with the fact that the AC didn't take care of it all (I know it's not likely in HR+ cancer, but I was still hopeful).

    I am so thankful to hear about all of you who are doing well, and also to learn about potential trials and other options. I'm currently pregnant and will be having my baby in about a month. Then I'll be doing more chemo (Taxol) followed by radiation so I know I have some fighting still to do. But its terrifying to think that most major treatment will be done in a few months and then its just hormone therapy. Like many of you, that doesn't seem like enough given how extensive my cancer was and the fact that it was still there after AC.

    Thank you for all of the information and I look forward to following this thread!

  • mom_of_twins
    mom_of_twins Member Posts: 124
    edited April 2017

    SkiChick, so glad you found this thread, too! I'm sorry your pathology was disappointing; we know that feeling all too well. It's so hard to feel secure in just the antihormonals, but they should be effective for us. And I'm also so sorry you're going through this while you're pregnant. That's so hard. Will be thinking of you and wishing you the best.

    Please keep us posted on how you're doing. And I hope the delivery goes well!

    Stephphilosphy--great news that your tumor shrunk! Do you have more results yet or have you had surgery? Hope all is well.

    How is everyone else doing? It's been quiet around here. I've been super busy just living life working and taking care of my 4 girls. Still worry every, single day about recurrence, and my positive lymph nodes after chemo haunt me. Just taking oneday at a time. Please let us know how you're doing--would love to hear from everyone! xoxo

  • Houston2016
    Houston2016 Member Posts: 248
    edited April 2017

    Hello everyone, I was super busy after finished rads 01/31. My daughter recently adopted two stray cats and one was pregnant. So I ended up taking care two cats and three kittens. It was fun and enjoyable and I was feeling fine. I take vitamins and stay away from meat and such. The only thing is I noticed I didn't have enough sleep and feel kinda exhausted some days due to run in and out with the cats from the garage.

    Then I started to acquire medical issue. Started to have low grade fever with mild body aches like a week ago, last Saturday, then following Tuesday, went to see OC, RO and PS for follow up and PS said I have mild cellulitis, where the incision of my mastectomy but it shows slight red, I remember take good care of my skin, the nurse said could cause by radiation. Then PS asked if I want treated with IV antibiotic or oral antibiotic, I chose oral take them at home. It has been 6 days on antibiotic and ibuprofen and still have low grade fever. I also have pains on legs, upper part of my abdomen, and tension headache. I don't vomit and still eating OK.

    Then I started to research on my symptoms because I had fever before but never headaches. I found that I may have Lyme disease, bacteria infection from ticks bite. My cats do have lots of fleas, I also have 3 round circular rashes on my inner thigh between March to April, thought it is ringworm so didn't do much. Now Lyme disease I read has similar rash. Could I been misdiagnosed ? And taken the wrong antibiotic?any inputs or experience you may have? Thanks.

  • Houston2016
    Houston2016 Member Posts: 248
    edited April 2017

    I also want to ask if anyone still have low white blood cells after rads? It's been three months and mine is 3.1 I believe that's the reason I'm subject to all kinds of infection. The crazy thing is during chemo or rads it was still low but not bad and I never had any bout with infection. Is there any suggestions for raising wbc, besides sleeping and eating nutrition. Thanks everyone.

  • ajbclan
    ajbclan Member Posts: 396
    edited April 2017

    Hi Houston-

    Wanted to pop in and comment for you. I highly recommend you go to your primary care dr. I had cellulitis and a blood clot at New Years. It took weeks for me to kick it. It was super confusing because we have all these Drs, and you don't know who to go to. I was even in the hospital over night because my arm was swelling from the clot, so then I had that Dr's input. Until I went to my PC dr the following week did things start getting back on track. I was on a variety of antibiotics. I could be really wrong, but your low count might be due to the infection. After my BMX in January, I ended up with another infection at the lymph node site, and was again on a variety of meds to clear that up which took over a month. Hang in there, but you've gotta get 1 Dr to guide you through whatever is going on, and I'm guessing at this point it should be your primary care.

  • GrendelDog
    GrendelDog Member Posts: 7
    edited May 2017

    Hi everyone -

    Quick note for Houston - definitely ask for a Lyme test. It's easy and if you have it, the earlier they start treating it the better. If it isn't Lyme, no harm done.

    Anyway, I just found this thread (better late than never :) A lot of us seem to have the same story! I started out with a Stage IIa diagnosis with 1.8cm tumor plus a lymph node (from core biopsy). Due to the location of the tumor, we decided to do neoadjuvent chemo to try to shrink it to improve the odds of a good cosmetic result with lumpectomy. The tumor was right near the nipple/areola complex.

    Did 4 rounds of AC plus 12 of Taxol. The lump felt much smaller and ultrasound seemed to indicate that it was shrinking, too. Unfortunately, surgery had a different answer. I had 3cm of tumor plus 4/18 lymph nodes (all gross cancer). Fortunately, no extra-nodal extension. Phew! The pathologist said "no definitive response" to neoadjuvant chemo and provided a Miller-Payne response grade of 1 (out of 5). Plus, I've had 3 surgeries so far, and I'm waiting on the latest pathology report to see if I am finally looking at clean margins. I hate the waiting!

    So, yeah, went from IIa to IIIa and wasn't very happy. It wouldn't have been such a shock if everything hadn't given the appearance of responding. I knew going in that Grade 2 ER+ isn't usually a full-response cancer, but it was looking good. It was quite a blow to get that path report.

    I've looked at some of the studies, and I'd love to try PALLAS or PENELOPEB, but unfortunately, I had Thyroid cancer 4 years ago, and that's within the exclusion window. Crap! So, onward to rads and hormone therapy...

  • SkiChick86
    SkiChick86 Member Posts: 16
    edited May 2017

    Hi ladies,

    I'm continuing to get results from my pathology report and was wondering if anyone had any thoughts on the following. When initially biopsied, the tumor was 20% ER+ and 20% PR+ with a KI-67 of 80%. They also sampled some of the extensive DCIS around the tumor and found that it was 95% ER+ and 95%PR+. I asked them to re-test the hormone receptor status and the original tumor is now 15% ER+ and 40% PR+. The KI-67 dropped to 65%. I know a drop in KI-67 is a good thing, but I'm wondering if anyone has any idea what it means that my ER receptors stayed the same but my PR receptor increased. My thought is that it's good - I know hormone positive cancer is less likely to be killed by chemo so I'm thinking that the chemo killed more of the non-hormone-positive (i.e. more aggressive) cells - but I have no idea.

    I would love any thoughts or experiences you might have!

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited May 2017

    Just got my final pathology report back! The tumor now is 1.8cm and before chemo it was almost 3cm. They only found cancer in one of the three nodes they removed. ER and PR now are both100%, Her 2 still negative and Ki 67 is still 7.5%. No LVI found post chemo. Interestingly they also found DCIS inside the tumor and somewhere far away from the tumor which were missed by MRI.

  • mom_of_twins
    mom_of_twins Member Posts: 124
    edited May 2017

    Hi Steph! Sounds like you had a good response considering being so strongly hormone positive!! The antihormonals should be very effective for you. How do you feel?

    How is everyone else? I've been so busy with my little girls that I haven't checked in for awhile. Think about everyone often; please post how you're doing!

    Skichick, it's definitely good that your ki67 decreased and you were hormone positive. Did you have a follow up with your MO? If so, how did it go?

    Hope all is well and hope to hear from everyone soon

  • Kidmanliang
    Kidmanliang Member Posts: 72
    edited May 2017

    Hi Stephilosphy00!

    It said I've reached the limit of PM today. I will reply to your message tomorrow!

  • meg2016
    meg2016 Member Posts: 188
    edited May 2017

    Great news, Steph! I think it's a good sign when everyone is busy... Means we are not too focused on recurrence? Things are going well here, looking forward to my TE for implant exchange surgery which will be in July. (Never thought I'd say I am looking forward to surgery, but I'm ready to get these expanders out!)

  • Houston2016
    Houston2016 Member Posts: 248
    edited May 2017

    Hi everyone, just checking back let you know my fever went away like few days after antibiotic. The PS said it must be radiation of some sort. By May 5 or 6 I was feeling normal. My rash it turns out, I stopped wearing pantyhose, stocking and they just cleared up by itself. What I'm worry about is my low WBC count (3.3) last one done in April 25 and my last rads was Jan.31. Does it take this long for WBC back to normal? Also, my MO saw me once on April 25 didn't say or do anything about my cancer.. only oh, I'm supposed to have all this aches from hormone pills, and tells me to see PCP about my rash. She didn't mention about any kind of scan, nothing, not that I want it but she doesn't seem to be on top of preventive measures. I'm thinking of switching MO doesn't seem to have my best interests at heart. It seemed like once you're done with chemo and they made money, you're no longer on their radar. BTW, talking about neoadjuvant chemo I had them in April 2016 and by 09/01/16, it didn't reduce much and I also had calcification in the initial biopsied. My tumor was initially 3.3 so given that lumpectomy would not an option, so this MO told me to do chemo first so it can reduce the tumor and that it's a trend now to "save the breast". If you already know my breast cannot be saved then why need to do chemo first? I regretted that I allowed it to happen cause I didn't know better. I believed having neoadjuvant chemo may cause me to have LVI when they did the mastectomy in 10/5/16 which I think may not be there to begin with. I wish surgery would be done first then I wouldn't have that LVI issue. Now it leads me to think about recurrence. How many of you have scanning after your treatment? How long apart? Thanks and have a good day.


  • mom_of_twins
    mom_of_twins Member Posts: 124
    edited July 2017

    Hi everyone! It's been a few months! I hope that means that everyone is doing well. All okay here. Just on my AI and still enrolled in PALLAS (Palbociclib) trial in the control arm. I've been very busy this summer with vacations, work, and the kids!

    Would love to hear how you're doing. Update us when you can!!

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