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"resistant to chemo" (tumor grew during TC)

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elise24601
elise24601 Member Posts: 47
edited January 2017 in Stage III Breast Cancer

My oncologist believes that my cancer is not responsive to chemo (based on the fact that I had lots of residual cancer left in breast and nodes after 6 rounds of TC. In fact, it appears my largest tumor grew a full centimeter on chemo, from 3 to 4cm). I am confused because as grade 3, we all thought chemo would be very effective.

I am concerned now because if I progress (likely in my case of 3c), I will only have hormone therapy options, not chemo, as a weapon to fight with. That won't buy me very many years, let's face it.

Does anyone have insight into why a rapidly dividing cancer would not shrink using a well proven chemotherapy regimen? I didn't expect a complete response since I am hormone positive. but I also didn't expect to hear "chemo resistant" from my surgeon and rad onc. Have others been told anything similar with a more complete explanation of the whys and hows?

It bothers me because chemo was so awful for me - I felt like I died 6 times - and now it appears I did it for nothing.

I wonder if it has something to do with my cancer cells ability to "repair" damage?

Comments

  • kicks
    kicks Member Posts: 319
    edited December 2016
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    Why isn't your Chemo Dr doing adjuvant Chemo? It sounds (from what you wrote) like you only did one Chemo neoadjuvant (TC) so you should be able to do a different type of Chemo adjuvant. Many who do neoadjuvant Chemo will do 2 separate ones hopefully getting a complete response but not all do that regimen - some of will do neoadjuvant and adjuvant - me for one.

    As I was told by my Chemo Dr - not all cancers will respond (or not respond) the same in all people, so if not getting positive results - change to a different Chemo. The plan for me had always been to do 4 DD A/C neoadjuvant to get it form a 'lump' (IBC corms as a 'nest' or 'bands' without clear margins), get good margins and shrink so Surgeon had a chance of getting 'it out and then 'hitting' it again with a different adjuvant Chemo (12 weekly Taxol in my case). It worked as wanted - did form into a lump with good margins and shrank at least some so Surgeon was able to get it out with good margins and then was hit with adjuvant Taxol to hit any cell that might have hidden away 'somewhere' then on to rads and Femara. That was 7 years ago and still NED - so a very good plan that 'came together'.

    It is not at all unusual for size to be different from DX sizing to post op pathology. DX sizing is based on 'pictures' - post op is the actual 'thing'.

  • outfield
    outfield Member Posts: 235
    edited December 2016
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    Tumors, just like bacteria, figure out ways to resist poison. They start making proteins that chemically cut up the drug before it causes any damage, they stop transporting it into the cell, they start producing pumps that send the drug right back out of the cell, they start producing a substitute for the drug target that the drug doesn't bind to. Things like that. Chemotherapy is basically an intense evolutionary pressure on the tumor, and any advantageous mutation will quickly become prominent in the population of tumor cells.

    It just sucks, but Kicks has a lot of truth to say. Just like with antibiotics for bacteria, chemo regimens have been (and continue to be) developed that hit the cells in new ways that their old resistance mechanisms can't protect them from.

    Also, I believe this is true in many, many situations: if you aren't confident in what your oncologist is saying, get a second opinion. Even if you love your oncologist, just get one. If you're not going to an academic medical center, I recommend checking one out even if it ends up only being for peace of mind that you're doing all you can do.



  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited December 2016
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    I think you should look into Foundation One, Caris or Guardant genomic testing. This stuff is in it's infancy and you'll likely have to pay out of pocket, but you could get some interesting information as to what mutations you may have that can confer treatment resistance. And then you can look into targeting those mutations, instead of just trying random drugs. Is your onc an out of the box thinking type or a play by the rules type? Foundation One is tumor tissue but Guardant I believe is a blood test.

    I don't know if it'll make you feel better or worse, but I had a pretty dramatic response to chemo and ended up with mets anyway. So response isn't everything

  • KBeee
    KBeee Member Posts: 695
    edited December 2016
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    I was going to suggest what Badatusernames suggested. Get one of those tests. Just because your tumor did not respond to one chemo does not mean it's resistant to all. My local friend was stage 3c and had growth during AC; Taxol had her NED by the end of 12, and she still is today. There are tons of different classes of chemo drugs which all target the tumors in different ways

  • TectonicShift
    TectonicShift Member Posts: 102
    edited July 2020
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    .

  • jackster51
    jackster51 Member Posts: 139
    edited December 2016
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    I agree with the above. A friend of mine had one of these tests run on her tumor, and it listed chemos that would be most to least beneficial. Unfortunately she started with Taxotere, before this test, and it did not do anything for her either. Some of the chemos shown beneficial to her specific tumor are not at all on our radar as treatments. I would definately look into it.

  • minustwo
    minustwo Member Posts: 13,116
    edited December 2016
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    I did not have pCR with neoadjuvant TCHP, so the doc followed up with AC chemo after surgery. PET scans show that I'm still NED 3 years down the road.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited December 2016
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    Hi everyone,

    This thread caught my eye, as I too, didn't have a complete response to chemo and had residual disease. As a result, I'm currently being screened for the PALLAS (Palobociclib) trial. I wanted more adjuvant chemo, but I didn't find one oncologist that would even consider it. I consulted with five -- yes 5! different oncologists at top facilities in the US (Northwestern, U of C, Rush, Sloan Kettering, and Mayo) and all said they wouldn't consider more chemo because I was ER+.

    As Bad said, do any of you have "out of the box thinking" oncologists? I have yet to find one! It seems they all "play by the rules," and seems near impossible to veer from standard of care outside a clinical trial. Would love your thoughts. I specifically wanted Xeloda based on the Create-X study, but none of them even budged or would consider it.

    Oh and edited to add: I also asked about the genomic testing with all 5 oncologists (I actually have a family member who has very close professional connections with both Caris and FoundationOne--they offered to test my tumor for free!)...but the problem is, every oncologist said there wasn't anything "actionable" they could do with the information. Meaning that even if it showed that my tumor was susceptible to a certain drug, they wouldn't be willing to prescribe "off-label" because it isn't standard of care. My thought is that if it wasn't "actionable" it would only create mental stress and angst to know that a drug might help me that I had no way of getting. It's frustrating!


  • MmeJ
    MmeJ Member Posts: 22
    edited December 2016
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    I'm confused. Why did you have neoadjuvant chemo if your tumor was "only" 3cm and estrogen positive? What is your lymph node status? How many positive nodes did you end up with?

    Maybe a second opinion on your pathology is in order.

  • kicks
    kicks Member Posts: 319
    edited December 2016
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    Mom of Twins - To a degree, my Dr 'thought out of the box'. The SOP for IBC was to do 2 different chemos both neoadjuvant, surgery and then rads. I didn't. I did 4 DD A/C neoadjuvant, surgery, 12 weekly Taxol adjuvant and then rads. So, yes, that was a bit 'out of the box'. At the time I was DXd and posted what my TX plan was - many told me on Forums that I would not be doing it as "that's not what is done with IBC". Wrong - that is what I did and from all I've read that TX plan is still not the 'norm' for IBC TX. It worked for me - am still here 7 yrs later and still NED. In those years, neoadjuvant Chemo has become more 'common' for other types of BC though.

    To my 'ole befuddle brain', it makes a lot more sense to get the cancer 'under control' with one type of Chemo so that a good surgical outcome can be expected. Get it OUT - surgically removed. Then hit it again with a different Chemo to attack any possible cell(s) that were not gotten during surgery - even a radical mastectomy does not get every breast tissue cell out.

  • gracie22
    gracie22 Member Posts: 19
    edited December 2016
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    A few posters on other threads have mentioned Dr. Nagourney of Rational Therapeutics. He a an onc/researcher attached to UC Irvine, and has done some TED talks. He focuses on chemo-sensitivity testing using live tumor tissue to help determine what drugs will work on the tumor. According to his site, patients who have had testing are twice as likely to have effective treatment. However, his lab requires fresh tumor tissue to test (does not grow cells as most labs do). That requirement is a non-starter for most patients unless they see someone like him early in the process.

    https://www.rational-t.com/what-we-do/functional-p...



  • elise24601
    elise24601 Member Posts: 47
    edited December 2016
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    mmej - My tumor showed up as 3cm on my diagnostic ultrasound, but was 4cm at final pathology. I got neoadjuvent chemo because there was evidence of multifocal and aggressive (grade 3) disease plus suspected node involvement.

    My treatment is at UCLA, and my team seems to have the exact attitude that Mom of Twins mentions - that the various tests would not ultimately help matters because I will not be put on any more chemo (besides Xeloda) with my highly ER positive cancer. My oncologist is eager to get me started on hormone therapy without delay, and the idea is that the menopause plus rads and chemo side effects all at the same time will be too hard on my body. Mom of Twins - I was thinking of doing consults at Sloan Kettering and MD Anderson, but the energy and expense required for traveling makes me wary if they will all say the same thing. Interesting to hear your experience.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited December 2016
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    Elise, I totally get it. I was so tired of going for more opinions and feared they'd all say the same thing. Which they did. But they will put you on Xeloda? That's what I asked for and they still wouldn't do it because I was ER+.

  • elise24601
    elise24601 Member Posts: 47
    edited December 2016
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    MOT - My oncologist is going to give me just 4 rounds of Xeloda that I can do concurrent with rads - the thinking is that it won't delay the hormone therapy much, so I might as well try it since it tends to be a well tolerated drug. I am hopeful but I don't expect a miracle with it. You are at a lower grade and stage than me so I'm thinking your doctors felt you may not need it! Did they explain to you why you had residual cancer, and did they give you a prognosis?


  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited December 2016
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    Hi Elise, that makes sense. I'm glad you're getting Xeloda; I would've gladly taken if it was offered. They said I had residual cancer because I was strongly ER+, and I was told that it's very rare for strongly hormone positive and HER2- patients to have a complete pathological response. Also, the residual cancer had a Ki67 level of <5%, down from the original Ki67 of 30. They said the chemo killed the rapidly proliferating cells, and the low proliferating cancer remained. I suppose that's a good thing?? Or at least hoping it is!! From what they've told me, PCR's are more common for triple negative and/or HER2+. I was told I have a "good prognosis," and have been given the range of up to 20% chance of distant recurrence (basically, between the 5 oncologists, I was told as low as 10% risk to as high as 20%). Who really knows though.... Although I could be in a much worse situation, those are still very uncomfortable odds and I want to do all I can to be a part of the 80%. How about you? Stage? Prognosis?

  • elise24601
    elise24601 Member Posts: 47
    edited December 2016
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    MOT - those odds sound very good, as does the information about the ki67 level. I wouldn't feel too worried if I were in your position. I'm in much worse shape - stage 3c/grade 3, BRCA1 positive, at age 31. Was not given percentages, although my oncologist still believes I am potentially "curable," the numbers I see online are very grim.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited December 2016
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    Hi Elise, I'm considered young by breast cancer standards (I'm 44 now). I'm just so sorry you're dealing with this at such a young age. I know the statistics online can be very discouraging, but try to remember those statistics stem from old data, and there's no doubt that those numbers are likely higher now. And you are potentially "curable"--sounds like you're doing everything you can. It's just so hard emotionally, and I just try to take it one day at a time. That's all we can do.

    I know it's so hard as I struggle myself daily, but I try to force myself to hang onto hope. There are a lot of stage 3C women on these boards that are still alive and well years later. There's always hope even though it doesn't feel like it sometimes. Hang in there!


  • xxyzed
    xxyzed Member Posts: 39
    edited December 2016
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    I'm a 3c as well but had adjuvant therapy so don't know if chemo was effective or not. My oncologist hasn't given me probabilities either likely because they're not very good. I ignore the online info because I don't like what it says and being her2 positive figure it's not very accurate anyway. I do know that a lot of people with my stats get through just fine but equally no-one would be surprised if it recurred. Either way I'm over worrying about it. I figure if it recurs I'll worry about it then. Of course if I have anything I'm concerned about I'll get it checked out quick smart. My father and husband died from cancer last year and I know in both their cases the recurrence was obvious so I don't think I need to look for anything subtle. I'm just crossing my fingers and hoping for the best while not doing anything stupid along the way.
  • naps
    naps Member Posts: 27
    edited January 2017
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    Hi everybody,

    Just going to add my 2 cents...I had a partial response to 6 cycles neoadjuvant TCHP and got put on adjuvant AC. I went to MD Anderson to get a third opinion about what to do after surgery, and fwiw during my consultation with the med onc there, she said the lab tests that purport to show which chemotherapeutic agents a given cancer will be sensitive to are not (yet?) reliable and would not be of use. She said people "bring them in all the time," but she strongly discouraged us from going down that path. It is a great idea, perhaps just still in its infancy..?

    Best to all. Keep on truckin'! :)





  • minustwo
    minustwo Member Posts: 13,116
    edited January 2017
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    Thanks for the post Naps. I too had 6 cycles of neo-adjuvant TCHP and no complete response. After surgery I had AC before Rads, and then the rest of the year on Herceptin.