Residual cancer after neoadjuvant chemo

TulipsAndDaffodils

Hi everyone, I am new to this board, thanks to everyone for posting--there is so much helpful information.

I was diagnosed in April with Stage 2 TNBC (2.2 cm, no nodes apparently involved). I was in a clinical trial where I had Taxol weekly for 12 weeks, followed by 4 AC treatments every other week. During the Taxol phase, I also had Carboplatin every 3 weeks (even though it was blind/randomized, we could tell I was in the Carbo arm because of my blood counts), and I took a daily pill that may or may not have been Veliparib.

Anyway, at the end of the Taxol/Carbo/Veliparib phase, I had an MRI, and it looked wonderful! It said that it appeared there was no mass left, just a minimal amount of non-mass enhancement (i.e. scar tissue). I was thrilled, and went ahead with the AC, expecting to find out that I had a pCR when surgery came around. Well, I had my surgery 2 weeks ago, and found out last week that there was still 8 mm residual cancer. Nodes are still clean--I had a sentinel node biopsy and she only removed one and it was clean. But needless to say, I was REALLY disappointed, because I was expecting a pCR and no-such-luck.

I meet with my oncologist on Wednesday. I'm wondering what he's going to suggest. I was supposed to start radiation mid-December. Do you think he'll propose more chemo first instead? Or a clinical trial? I feel like (as much as I didn't enjoy chemo) I'd like to do more...I'm not crazy about the odds that people have who are non-pCR. Anyway, I'm just wondering what other people think or have heard of in these situations. Thanks for any input!!

Blessedmommaof3

Hello,

Unfortunately, I can't comment as to what your doctor will recommend but I can understand your desire for more chemo considering the statistics. I'm also triple negative and on the same trial right now! I just completed round 5 of taxol. I'm also praying for clear results at surgery. My doctors also feel I'm getting the carbo and valiprarib. How did you do on the ac? Was it harder then your carbo weeks? I'm a little worried about the ac portion of chemo. Please keep me posted about your doctor appointment and I'll be praying for you to have peace and clear direction and comfort in that direction for your future treatment.

sbelizabeth

I was ER+ but had multiple positive nodes, and was not PCR on my mastectomy report. There was still tumor emboli in the dermal lymphatics of the breast skin.

I had to talk my onc into more chemo, quoting a study that had recently been presented. Toward the end of rads, I started six "rounds" of navelbine and xeloda. I don't know if these drugs helped or not, but I felt better about slamming any remaining lurking cells, and that was in 2012...and I'm still here, so that's something!

If I can dig up the name of the study I'll post again. It's remarkable to me that it doesn't just roll off the top of my brain today, but it's a testament to the ability of the "elephant in the room" to shrink into a tiny mouse that squeaks only occasionally.

TulipsAndDaffodils

Thanks for responding, ladies!

BlessedMomma, good luck with your treatment; I hope you get a pCR. I was nervous for AC also, but it wasn't so bad. The first weekend I had my first and only bout of nausea from my whole chemo regimen. Just 2 days, and not bad, no vomiting. But I had to lie low that weekend. I did have anemia throughout all of the treatment, which annoyed me. Overall, AC was worse than Taxol/C/V, but not much. Except, after my 4th and final dose, I did feel very anemic and faint--just when I was thinking it was all over. But really not bad.

SBElizabeth, thanks also for responding. I'd truly love to hear more about that study, if you can find any info on it. I met with my oncologist, and he is not suggesting any more chemo at this point. I don't feel safe just waiting. I want more. Truthfully, even if it did nothing for my cancer, I think it would do a lot for my mental state to know we are throwing something else at it. There aren't any appropriate clinical trials right now for me (only ones are for adding Carboplatin, which I already had so am not eligible for). Maybe with that study I can help convince him to consider Xeloda and Navelbine, or something. Who knew I'd be begging for more chemo??? But I also learned now that I had lymphovascular invasion present. So although all my lymph nodes were clean, I've read that LVI can affect survival comparable to 1-2 nodes with cancer, and to a higher tumor stage (i.e. my residual tumor is 8 mm or T1, well if you have LVI, that's comparable to a T2 residual tumor). I am RCB2 (residual cancer burden 2). I understand RCB0= pCR, but that RCB1 is also good, near-pCR. RCB2 has a pretty bad prognosis. I love my oncologist, and he's very upbeat, and he is able to explain all sorts of reasons why my case is better than the cases I read about, implying my chances of survival are better than what I read, but I am still quite worried and would rather do what I can now.

Thanks again, and if anyone else is reading this and has input on residual cancer after neoadjuvant chemo, I'd really appreciate hearing about it!!!!

sbelizabeth

Tulips, it was the GeparTrio Study, and my own case didn't fit neatly into the study criteria, but with the help of my cousin who is a big-shot breast cancer researcher (but not local...!) I talked my onc into it. And I know exactly what you mean--it's weird to think about pushing for more chemo. There's a lot to be said about trusting your onc, but another opinion, perhaps?

TulipsAndDaffodils

SBElizabeth,

Thank you so much! What an interesting study, and it really speaks to the benefits of neoadjuvant chemo if they can alter the choices of chemo based on early responses. I can see why you were able to convince your MO to try navelbine/xeloda after surgery based on that. And I agree, the extra chemo may or may not be the reason you are doing so well, but it must have given you some peace of mind to know you did more.

Unfortunately, the study showed no benefit for the Triple Negative group, but I am so curious why not. It seems so logical that if one type of chemo didn't finish the job, it would be beneficial to try more. I know that Xeloda is used for metastatic Triple Negatives, so I would think it should show some benefit. I'm curious how many of the study participants were Triple Negative, maybe it was a very small group. But anyway, thank you so much for looking into this for me. Maybe there really is nothing for us Triple Negatives who have residual disease. But the prognosis is really not good and I want to do more now. Chemo was very tolerable for me, and I'd much rather do more than find myself metastatic in a short time.

I am thinking I'll go for a 2nd opinion, but from what I read, I don't see TNBC non-pCR people getting "bonus" chemo after surgery, so I'm not sure there are any MOs out there that would do something different from my MO. So if anyone has heard of cases that are applicable, I'd love to hear about it!

TulipsAndDaffodils

SBElizabeth,

I just want you to know that I've been reading your blog and I LOVE IT. You are a fabulous person. And a truly gifted writer. I am so sorry for all you have gone through, but I am inspired again to look for the humor in all of this nonsense that is breast cancer. I am thrilled that you are doing so well, and I really appreciate your responses to my questions!

Tulips

sbelizabeth

Tulips, thank you so much for reading, and I'm thrilled you have enjoyed my scribbling. The blog was my daughter's idea, to provide a creative outlet for all the thoughts and emotions and experiences that are breast cancer treatment. You've made my day.

Katzie

Hello Tulipsanddaffodils. I was diagnosed withTNBC in March 2014, a large tumour, nearly 5cm withLVI, was treated with neo-adjuvant chemo and then surgery (and radiotherapy). Tumour had shrunk to 2.3cm, so not pCR. I have panicked over the last 18 months about what this means regarding my prognosis. But I am not a statistic . I have read accounts of people with pCR who go on to have recurences as well as those without pCR who do not. We are all different and from what i have read TNBC behaves in many different ways, TNBC comes in many forms only united by all being receptor and HER2 negative. So it is likely that response are going to be different. I wish you well with all your treatment xxx  

TulipsAndDaffodils

Katzie,

Thanks for your upbeat response! I am normally a pathologically cheerful person, but I admit my body's response to the chemo left me a little disappointed. I am coming around to my more optimistic self, and messages like yours help. I'm so happy you are doing well! I'm guessing you haven't done any additional adjuvant chemo, either. I'm not sure why I'm hung up on wanting more. I know that there will be a presentation at the San Antonio Breast Cancer Symposium this week, regarding a study of using Xeloda in cases of residual disease after neoadjuvant chemo in HER2 negative patients. Very curious to see if it looks like the Xeloda makes a difference. I'll post here if I hear anything.

Thanks again,

Tulips

SCVA

I am stage IIIc and wrapped up radiation on August 4 2015....diagnosed 11/7/2014 started chemo 11/10/2014....4 AC 1 dose dense taxol...then 10 weekly taxol and carboplatin....4/20/2015 BMX with 12 lymph nodes and two sub pectoral nodes removed...microscopic cancer in one pectoral node and some in breast tumor bed....considered a near pcr with residual cancer burden of 1.... I was devastated at first by not getting a PCR....but i figure the radiation would bat cleanup and take care of lingering cells....at least I hope...stay hopeful....lots of positive survivor stories out there....as a wife and mom to a almost. 6 year old I try to not let thoughts of cancer rob me of memories with my family

BetterDay

Hi, Tulips. I was diagnosed with TNBC in August 2013. I'm not sure how big my tumor was originally as imaging was all over the place (probably somewhere between 2-3.5cm). After chemo (12 taxol followed by 4 ACs -- last chemo Jan. 20, 2014), I had another MRI before surgery that seemed to show a fair bit of residual cancer. At that point my MO and I discussed potential adjuvant chemo, which would have been carbo/gemzar. After BMX, my path report showed 8mm of DCIS (that I didn't know I had) and less than 1mm left of IDC. The three removed nodes did not have any evidence of cancer. Based on the path report, my MO was against any further chemo treatment. Have you made any decision yet?

TulipsAndDaffodils

Hi, sorry BetterDay and SCVA, I never saw these posts until now. I ended up going on Xeloda after radiation. I'll be finishing up in late August. It has been an easy chemo for me, so I haven't minded. But will still be happy to finish! I hope I'll end up feeling relatively relaxed when I'm all done--fingers crossed! I assume you didn't do further adjuvant chemo, but would love to hear how you are doing. Lots of best wishes going your way!

Happy summer!

Tulips