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Partial response to chemotherapy

nume
nume Member Posts: 81

Hi all,

I had my first ECO few days ago half through the chemo(almost done first cycle, 10 infusions out of 12). In spite of a rather aggressive approach: 12weeks of Paclitaxel & Carbo, with Keytruda every 3 weeks (will be followed of Adriamicin & ...I keep on forgetting the second and Keytruda) I have only 60% shrinkage (from 30mm/15mm to 12mm/6mm). Of course I was hoping for pCR... Is it too late for pCR?(I keep on reading that pCR basically happens at the beginning of the treatment during first 2 months)

Just wanted to hear what is the average response and how are things going for us girls with partial response...

Thanks a lot

XXX



Comments

  • dnazyme
    dnazyme Member Posts: 16

    While my tumor appeared to change shape from round to oval, when it was removed surgically (after finishing dose dense TAC) it was exactly the same size (18 mm) as when measured on scans before I began chemo. I knew a partial response was possible, but had no idea that triple negative tumors could be chemo resistant right from the start. Especially after all the platitudes about how aggressive TNBC is, but also how well it responds to chemo. I was livid no one told me/prepared me, although in retrospect it seems obvious this could happen. Some shrink, some grow, some oscillate in size...or if it's mine it just sits there placidly.

    That said, AC is supposed to be the more aggressive of the two phases of the chemo, and you have the addition of Keytruda! While complaining online elsewhere, I found some people's tumors didn't appear to shrink entirely on scans...but inside the cancer cells were dead and what was left was scar tissue. You won't know for sure until it is removed. Don't get too worried yet. Easier said than done, but worth trying. Further, if you don't get pCR, I think you may be able to stay on Keytruda after surgery as a preventative measure. But I'd double check that with your MO.

  • nume
    nume Member Posts: 81

    Thank you so much, dnazyme!

    I can imagine how disappointed you were finding out there was no significant response but it`s so good you found the tumor soon, under 2 cm. Yes, very hard trying to ignore the studies, the statistics, to deal with less than expected/anticipated... And, the first thing I`ve been told as well was that TNBC responds to chemo from the very beginning.( I have such an oscillating tumor that keeps me guessing is it something I`m doing/eating wrong is it changing shape and consistency. This was the main reason I had the ECO done after 10 weeks.)

    There are days when I forget about it but some new vlog or medical update dated few years ago pops up on my youtube and I begin obsessing again. I hope my liver values will allow me to complete the chemo as planned and stay on Keytruda for another 9 infusions after the surgery. I don`t know does it depend on pCR or not.

    How come you decided for oophrectomy?


  • dnazyme
    dnazyme Member Posts: 16

    I did that because I am BRCA1 positive. My grandmother had ovarian cancer. I got the gene from my father, but he doesn't have any symptoms (thank goodness).

    I wasn't planning on children, so it's ok. My nieces are like my babies, only sometimes they go home at night. And one of the very very few good things about TNBC is, because our tumors don't feed off estrogen or progesterone, I can have low dose hormone replacement therapy. I wasn't in menopause before this, and didn't appreciate having thatdumped on top of a cancer diagnosis.

    I hope hope hope you get that pCR (and AC is supposed to be tougher, so you may) but if you don't, it's not the end of the world. Especially now with preventative things like lynparza and keytuda and xeloda.

  • dnazyme
    dnazyme Member Posts: 16

    and please don’t let yourself think you’ve done something to make your tumor act this way. TNBC genomes are simply scrambled. The cells don’t listen to external input, which is part of what makes thisso hard to treat. It’s it’s own stubborn little non-listener.

  • nume
    nume Member Posts: 81

    dnazymeHug,

    don`t be concerned about the menopause. I entered early menopause myself few years ago at 43. Didn`t pay too much attention to it and maybe I was lucky, nothing changed...No health problems, no discomfort, not even weight fluctuations.

    I don`t have children either. I don`t know was it me or was it my husband, didn`t try to find out...

    It`s great you discovered the BRCA mutation. Last week I read about the TNBC vaccine coming out, trial completed in September this year, for women who have been previously treated/had surgery and have the BRCA gene. I tested negative for 123 gene mutations but I surely do have a mutation they didn`t discover yet. Most research on TNBC was for BRCA positive.

    I don`t know why I am so keen on the pCR, probably because of the size, 3cm. Somehow my conclusion after reading many posts on many forums is big rapidly growing tumors have a better pCR rate.

    I`ve been watching these vlogs...One of them of a woman diagnosed TNBC stage IV with liver and lung mets who`s cured and NED for 6 years now through diet and supplements she took during the time of the conventional treatment. I`m thinking should I begin taking supplements, changing the way I eat? I`m already juicing like crazy :) Couldn`t find scientific evidence this is the way to go... Also ordered the book ``How to starve cancer`` that has great reviews... Do you think this approach may help? Did you look into it?

  • nume
    nume Member Posts: 81

    What about fasting?

    I surely plan on trying after the chemo. I can`t right now.( I get steroids weekly, before each infusion and many prescribed vitamins&minerals daily, to cope with neuropathy I guess) For the time being I gained 4 kg in 2 months and am constantly thinking about food... Like never before :) I know it`s important to keep a healthy BMI and I was lucky to be in the healthy range before this started.

  • meghann422
    meghann422 Member Posts: 3

    I had pCR on this regimen. My tumor did shrink consistently with each treatment, and by treatment 4 of my taxol/carbo/keytruda I couldn't feel any palpable lump. I had a few ultrasounds along the way with my BS who confirmed it was disappearing. Then, right before surgery, I had an MRI done that showed a 2cm mass (my original was 3.5cm) and I panicked. However, my final pathology report confirmed what dnazyme described - dead tumor bed and scar tissue, but no live cells.

    That to say, I wouldn't put too much weight into what the pre-surgery scans show. Different imaging methods could show different things, and you truly won't know the results until they get in there and cut it out. And dnazyme is correct - AC is known to be the more aggressive chemo. All the drugs you're receiving are designed to attack different parts of the cell cycle - so some may be more effective than others against your specific tumor type.

    And dnazyme is correct again (smart cookie!) that pCR is what we all hope for, but not getting it is not the end of the world. There are other things you can do! FWIW, I got pCR but am still getting the 9 additional infusions of Keytruda, so I think it is likely you can continue to get those regardless of your outcome.

    I've read some compelling research that fasting during chemotherapy may make chemo more effective (there are articles shared elsewhere on this forum, though I can't remember exactly where) but I found it was too hard for me to do with the other medications and side effects (the only time I ever felt "good" was when I was eating... go figure lol). However, my doctors were pretty adamant with me that I should NOT be changing my diet, taking supplements, or eating large quantities of superfoods during active treatment, which really surprised me. When I asked why, they alluded to the fact that the protective properties in those supplements that protect the good cells ALSO can protect the cancer, and they want your cells as exposed as possible to the chemotherapy/radiation. Please do your own research and consult with your doctors though, I am by no means a medical professional lol.

    dnazyme do you mind me asking what other forums you've found helpful? I've gotten lots of wonderful info here, but always looking to expand my community. And I love what you said about being an Aunt - I don't plan to have children either, but being with my nephews fills my cup like they were my own children. <3



  • dnazyme
    dnazyme Member Posts: 16

    I'm not a gung-ho redditor (mostly because I can see me becoming so absorbed it becomes a time sink) but have friends that use it. And the triple negative forum here seemed quiet. So I started with Reddit. Here is a Reddit link about fasting. I'm deoxyribozyme on Reddit.

    ugh. I guess I'm too new to post links. Google Reddit r/breastcancer . The post is “adding to chemo" from 4 days ago.

    I don't love Instagram, but that's where lots of people above TikTok age are…so I have to be there to find out what photogenic friends are doing. Anyway, I liked a doctor interview I found on this page. And I don't think the woman running it had pCR.

    Sameproblem with giving alink—I'm sorry but this forum's site is buggy and slow.. I guess they are trying to fix it— Google Instagram talkischeapxo

    it's normal to want pCR! The statistics are better without residual cancer burden (don't Google that phrase btw) before surgery. But as they keep (accurately) reminding us: those numbers are old! Keytruda for you (I have rheumatoid arthritis, and even though well controlled my doc did not want me on Keytruda for such a small tumor) and Lynparza for me, and xeloda for us all, changes the numbers.

    5 years ago you only got a parp inhibitor or Keytruda if you were metastatic AND in a trial. 10 years ago I don't think anyone got them. That isn't true anymore. I'm a natural pessimist (I try not to be, but was born a grumpy old man in an adorable babygirl body) and even I agree this is true. The numbers now are better than even what 2022 studies can say.

  • tagety
    tagety Member Posts: 15

    Hi Nume,

    I want to get more information on these vaccine trials. Is there any link that can help with more information?

  • nume
    nume Member Posts: 81

    meghann422, thank you so much for the reassurance and congrats on the pCR, I am so happy for you!

    During the first cycle of chemo(PT&K), were your liver values good? (My AST and ALT are running pretty high more than double the normal values actually). Did you find anything helpful?

    XO

  • nume
    nume Member Posts: 81

    Hi Tagety!

    here is a link:

    First Vaccine for Triple-Negative Breast Cancer - Healthline

    and Oncology Times:

    The FDA approved the vaccine as an investigational new drug in December 2020, clearing the way for Tuohy and G. Thomas Budd, MD, at the Cleveland Clinic Taussig Cancer Center and the study's principal investigator, to begin vaccinating the first few women in the trial. All of the women have completed treatment for early-stage triple-negative breast cancer and are currently free of disease.

    but you can find many articles by searching Triple Negative Breast Cancer Vaccine

    Few days ago I read the trial ended in September 2022

    XO

  • nume
    nume Member Posts: 81

    dnazyme,

    I found the instagram link. Thank you! I`m now watching all the interviews one by one. It`s very informative and reassuring.

    (I couldn`t find the one about the cosmetic procedures though, on botox to be more specific. Do you know anything about it?)

    If you find any other articles, interviews etc please give me the links

    XO