Regimens, side effects, and support from others going through chemo.
Posted on: Apr 7, 2021 03:08PM
A little about my situation. 2.6cm breast tumor, positive lymph nodes (largest 2cm). Diagnosed via MRI (breast tumor did not appear on mammo or ultrasound). ER+ (95%) PR+ (19%), Her2 negative (IHC).
Just finished 4 rounds AC chemo (DD 91mg/2weeks) in neoadjuvant setting.
Onc wants me to do the standard 12 Taxol, but I just want to get to surgery and get this cancer out, then move on to rads and done.
Did anyone here just do the AC portion and have a good outcome?
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Apr 7, 2021 03:28PM - edited Apr 7, 2021 03:30PM by 1Greekmomma
No, it is the risk of allergic reactions (possibly fatal, which taxanes are apparently notorious for), as well as research which suggests that taxanes may help facilitate metastasis in the neoadjuvant setting.
I don't want to risk either for an overall benefit of, depending on which study you look at, maybe 1-5%.
Apr 7, 2021 05:22PM Lizard123 wrote:
I was under the impression that taxol does not provide a lot of benefit for hormone receptor positive/her 2 negative breast cancer. I found this article. Not sure if it applies to you. You could ask your oncologist about it.
Apr 7, 2021 06:36PM 1Greekmomma wrote:
Yes, I have seen that study and others which suggest similar things. Of course there are others which say otherwise. It will probably be hard to find someone who just did AC because AC-T or some variation thereof seems to be the standard, and the only times I know where people did not do the taxol/taxane portion is when they had such bad reactions they had to quit for their safety.
Maybe there's a unicorn out there...
Apr 7, 2021 06:47PM MountainMia wrote:
I'm only 2 years since surgery, which was prior to chemo. Also I'm tnbc, so a completely different situation than yours. However, I did 4 dose dense AC and no taxol. My regimen was SUPPOSED to be 4 Taxotere and Cytoxan. However, I reacted to the Taxotere on 2 different days. Yes, it was a little scary. However, I had excellent care. Within a few seconds, and I mean that literally, there were probably 6 nurses attending to me, and more soon after that. I did not feel in danger at all because they knew what they were doing. Whether this reassures you or makes you sure you don't want taxol, I don't know. I do know that the vast majority of patients DON'T react to taxanes.
You are the one who gets to make the decisions. If I were in your situation, I'd discuss more with MO about the options, so I could make the best possible choice. Can you do taxane after surgery? Can you do fewer than the dozen? What are the benefits or pitfalls of doing taxane? What comes after surgery and rads? Hormone blocker?
Good luck making decisions.
Apr 7, 2021 06:59PM 1Greekmomma wrote:
When I mentioned I did not want the taxol but wanted rads, NP (not onc) acted like that was something I would NOT want, which lead me to think that their plan was neoadjuvant chemo, mastectomy, endocrine therapy and that was it, which I found bizarre because lower-stage cancers get rads, even with mastectomy so I was confused.
TNBC, from all the literature I've seen, has a better response with the taxanes, so the fact that you are 2 years out without having finished the course is great!
I guess ultimately there are no guarantees - there are women who are early stage, clean nodes, do everything by the book and still get recurrences or mets, then there are others, like my aunt, who had clean nodes, lumpectomy, rads, and has been 20+ years BC free.
That's life I guess. No guarantees.
Apr 7, 2021 07:01PM ElaineTherese wrote:
What grade are you?
Apr 7, 2021 07:43PM 1Greekmomma wrote:
There is actually no grading on my pathology report. I first felt a lump in my armpit, and that is all they biopsied. It was from the lymph node that I know the hormone status. I don't even know how many lymph nodes, MRI report just says 'multiple lymph node reaction'. No staging either because I went straight into neoadjuvant chemo. Onc says either 2b or 3a, but it could well be 3c depending on lymph nodes.
There is a LOT I don't know, and it definitely contributes to my anxiety. I am going to assume it's a slow grower just because it took six months from feeling the lump in my armpit to getting an actual biopsy done, and my PET/CT and bone scan in January were clear. Started AC in Feb.
No genetic testing, nothing. I'm flying blind.
Apr 7, 2021 08:08PM moth wrote:
Does the path report mention Nottingham at all? Cause nottingham scores give the grade. I would ask your oncologist for the grade if you can't find it anywhere. I can't see how you can make treatment decisions without that piece of info.
Predict might be able to help you a bit because it does discern between 2nd gen & 3rd gen chemos & the 3rd gen regimens are the ones containing a taxane, so you can see the difference in outcomes. You'll have to guess at # of positive lymph nodes. I think if you play around with grade you'll also see how much it changes the outcomes.
unless you're elderly I would not skip the taxane. Throw what you can at it, you only get one shot. IME, they don't recommend chemo lightly. All it takes is 1 cell to have escaped that lymph node. But bottom line is do what you won't regret :)
Apr 9, 2021 09:47AM 1Greekmomma wrote:
Nope. The report I have seen just outlines the ER/PR/Her2 sensitivity. Again, could be because they only core biopsied the lymph node (apparently there are multiple enlarged, but only one had no hilum and that's the one they tested).
Unless there's things they're not telling me, I don't really have much info. I asked about genetic testing and all that, and the onc was like "Oh yeah, later on we'll do that". I was basically just told THIS is what we're doing. No actual options or discussions. The breast tumor is 26mm by 16mm, not small but not huge either (and did not appear on mammo or US, which leads me to think it might be lobular, and lobular from all I have read doesn't really respond that well to chemo anyway, especially ER+). MRI report says abuts the chest wall and skin (not invaded), but the decision for chemo was made well before that. Before chemo induced weight loss I was a 32DD, so not like I had small breasts, but I'd be happy to do a mastectomy if it meant getting rid of this thing. Again, no one asked me what I wanted to do, and now onc makes mention of bi-lateral mastectomy, which if that is the case, WHY did we not do that to begin with and do "clean up" chemo after?
Oh well, had another MRI yesterday. Will see onc next week. I am 41, and onc says the same about throwing everything at it, but with reports I have read of taxanes actually facilitating metastasis on the neoadjuvant setting, as well as another report which has raised the question about increased brain mets with taxanes, I just am not feeling comfortable about any of it. I am ER+ so I do have hormone therapy as a backup. I do have an aunt who survived (20+ years).
Sorry, just ranting now. I just read other posts and it seems like everyone else went into this so much more informed than I have been. Probably doesn't help that I am just seeing a regular onc and not a breast specialist.
Apr 9, 2021 10:07AM Aram wrote:
Hi 1Greekmomma, have you had a chance to get a second opinion? It seems you don't fully trust your medical team decisions and they are not very clear about their reasoning. It might put your mind more at ease if you can get a second opinion from some place you trust.
Apr 9, 2021 10:40AM 1Greekmomma wrote:
I did call another hospital and spoke to a NP, but she was of the same opinion. I needed all the chemo, end of story. I live in a small town so options are somewhat limited.
It's really weird because AC is a heavy hitter (I'm done with that portion, thank the Lord!), but again, just researching the taxanes makes me very uncomfortable. Of course, no one has a view into the future. There are women who do everything to a T and still get recurrences or mets. I guess it is one of those things where you just roll with it, because that's cancer for ya!
I think I may have convinced my onc that surgery needs to be next. I wish I had the cancer just cut out first. That seems to be the protocol in many other countries, as well as chemically shutting down the ovaries in ER+ cancers (I wish I had that done, I have not skipped a beat with my menstrual cycle and that worries me seeing as my cancer is ER+ 95%. So many women go into chemopause, but not me!).
It just is interesting to read the many different protocols and wondering why *none* of them were offered to me. It took 6 months from feeling the lump to getting a biopsy done, and by the grace of God the cancer stayed confined to my lymph nodes only.
Anyway, I have been doing some reading on other forums, and there were women who did well on protocols like CMF or AC only (these women had BC in the 80s and 90s), so I guess it's not all bad news.
Apr 9, 2021 10:48AM ElaineTherese wrote:
Honestly, you should insist that your doctors tell you the grade of your cancer!!!! Why don't you have this crucial piece of information? Chemo works well on quickly dividing cells. If you are Grade 3, I'd definitely do the Taxol which is much gentler than AC.
Neoadjuvant chemo can tell you how well chemo worked for you. I did neoadjuvant AC + Taxol, and, after surgery, there was no active cancer left in my breast and my compromised lymph node, which is called a PCR (pathological complete response). Some research suggests that breast cancer patients who achieve a PCR have a better outcome than those who don't.
If you go with surgery now, you'll see how well your cancer responded to AC. If you have residual cancer, your doctors might request further treatment. (That's more likely if you're triple positive, however.) Good luck, whatever you decide.
Apr 9, 2021 11:44AM 1Greekmomma wrote:
Hello Elaine Therese,
Yes, I don't know why the grade is not in the report either, or why it wasn't even asked for. I thought it was because of the lymph node, not the breast tumor being tested, I don't know.
Either way, seeing the onc next week. I just want all this to be over with. I want the surgery, rads, and on with my life. Taxol or not, there's no guarantee. If I get recurrence or mets without taxanes, I'll blame myself for not doing it, but if I DO get the taxanes and still have mets or recurrence I'll always think that it was the taxane that facilitated the spread and blame myself FOR doing it. No win situation mentally (why yes, I do overthink things LOL). I had DD AC which according to the Predict calculator is just as effective as taxane therapy, so there's that. Plus, If I am one of the ones with severe allergic reaction, they'll just stop it where it is (I have seen several women who could not continue with taxane therapy because of severe reactions).
Cancer is awful!
Apr 9, 2021 03:32PM Redkitty815 wrote:
You have to make the choices that make the most sense for you. I chose to throw everything in the kitchen sink at my cancer, because I didn’t want to feel like I hadn’t done everything possible if this thing does recur and metastasize.
One thing I think is important to point out is that the studies that you cite regarding the risks of Taxol in the neoadjuvant setting were done on mice and even the researchers said that their findings should not preclude people from using Taxol because the benefits outweigh the risks and animal studies are not the same as human trials. I asked my doctor about it too because I read the same thing.
I completely understand feeling exhausted and done with chemo and you should talk with your medical team about the tradeoffs of stopping now or switch medical teams if you don’t feel you are being heard because regardless of what you decide now, you are in a long term partnership with your oncologist and you have to trust and listen to each other.
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