TRIPLE POSITIVE GROUP

Just for purposes of clarification regarding the question of 4 or 6 TC - because you see people doing 4 TC or 6 TC here on BCO and it can cause some confusion - it is important to make the distinction between the taxane regimens Taxotere and Carboplatin, Taxotere and Cytoxan, and DD or weekly Taxol, and those who are Her2+ or Her2-.. Currently, NCCN guidelines indicate the approved combinations for Her2+ are 6 TC Taxotere/Carboplatin (with Herceptin and/or Perjeta), 4 DD Adriamycin/Cytoxan plus DD or weekly Taxol (plus Herceptin and/or Perjeta), weekly Taxol/Herceptin for certain situations, and FEC (plus Herceptin and/or Perjeta), which is usually used by those outside of the U.S. NCCN does not indicate the combination of 4 TC, Taxotere and Cytoxan, without Adriamycin, for Her2+, only for those who are Her2-. Of course, there are some who have to curtail chemo and get less than the usual number of infusions.

Standard of care is Taxotere and herceptin for 12 weeks then herceptin every 3 weeks for the rest of the year. Seems like you are being over treated

My oncologist put it to me this way: we're doing TCHP for six rounds, followed by a year of Herceptin, because HER2+ cancer is aggressive and we're going for a cure, so we need to be aggressive. She gave me the option of AC+THP or TCHP, and my research showed that the latter is just as effective with fewer side effects and a shorter overall duration of active chemo treatment.

Going for a cure is the only option, in my book. I'm 36, and I will do everything it takes (including ten years of Tamoxifen, since my tumors were 80% ER+, too) for a long and happy life. Would I be happier if I only had to do a total of four rounds of TC? Absolutely. Is six doable? After two (the third is Thursday), I can say this: I wouldn't have chosen it off of a menu, but it's edible.

I heard someone say recently that doing hard-core chemo like this is akin to killing a housefly with a sledgehammer, and I kind of agree. But, again: curing this thing is possible--even likely. I say blast the hell out of it, pound it to bits with the sledgehammer. Four months, in the scheme of things, is a short time to be "sick."

I'm in the same boat- didn't think I'd have to have chemo until the HER2 positive result. That study is interesting to me because my tumor was small (<1cm). My surgery was Friday so I don't know the margins or final node results yet, but initial tests were negative. I certainly want to be thorough

SpecialK-

You really should be a patient navigator.

My question for you: What has your followup protocol been since treatment? How often do you see your MO, BS,. scans? Do you just see one of the Drs or still see both?

Thanks you so much.

SpecialK, you rock. Thanks, as always, for all the great info.

GretaGirl, I'm with you. I get pissed off, too! Grrrrrrr. . . . for the cure.

I went for cure and am done with my 12 weekly taxol and herceptin treatments. I had only 1.5mm of IDC (plus one focus of microinvasion) but a high FISH ratio of 4.8 and a large amount of comedonecrosis in my dcis. Literature suggests it has great results, though the sample sizes are small. I'd do it again in a heartbeat, side effects and all.

I meant taxol

wabals, that's what Special K said in response to your post above on this page, where you had mistakenly said taxotere and Herceptin for 12 weeks plus Herceptin for the rest of the year.

I meant to write paxlitaxel which is taxol and instead wrote taxotere. Sorry.

SpecialK-

Thank you so much for your detailed response of your follow-up care. In addition to the information, your writing conveyed that you feel comfortable and grateful for the extent of your follow-up care. Certainly your doctors sound attentive and competent.

I'm located 2 hours away from my center. During my weekly taxol I was wholly committed to going to Boston and doing what I needed to do, sometimes twice a week. However, perhaps because I'm 3 years out from dx, and 1.5 since finishing Herceptin, I just want to put the whole thing behind me (head in the sand)- which means having as few Dr.'s appointments as possible.

When I see my amazing MO tomorrow, I will ask her how much she thinks I need to see my BS, or RO, it at all. I'm also curious if she has her patients do PET/CT scans etc. I hate all those scans (like my routine breast MRI tomorrow) because they scare me. But I also believe catching recurrence or mets early would make a difference so it's worth doing even though I hate the whole experience. However, I'm going to try to feel more positive about the follow-up care, the goal of which is to prolong my life; I will try not to not feel too resentful or scared.

momwriter - if I did not have ongoing recon issues I probably would have let go of the appointment with the BS, I didn't have rads so I don't see an RO, but I kind of feel the same about that - past the early window for HEr2+ recurrence I might let that one go too, unless I was having any residual rads issues. As far as scans, I have not had a routine full body one since probably the end of 2012 - so it has been at least a couple of years. My MO does not do ongoing screening scans - only when there is a problem, such as the hip issue. I am fortunate to be very close to my center so doing the every six month appointment with blood work just before is not a travel burden. I actually still have my port but the MO said to have it removed by the plastic surgeon in the next surgery, so I will not have to come in and have it flushed. This weekend marks the five year point from diagnosis - I guess it is time!

kate - there are a number of us that did not have radiation. Tumor position - proximity to chest wall and/or skin, margin size, LVI, nodal status, all play a part in the determination of whether rads is needed. I really didn't want to do rads, which is one of the reasons I elected BMX, along with the fact that I image so poorly, I could not rely on it going forward. I had ALND, with two positive nodes, but both my MO and BS did not recommend rads, based on surgical removal and chemo/targeted therapy. I would be curious whether multi-focal disease is more of an indicator for rads - even if you have good margins around each mass.

Kate, I was also multi focal. Rads was not recommended because of the MX, clear margins, and negative nodes.

Thanks, ladies! I appreciate the info. I'll get my consult once I'm done with chemo and, based on your info and my surgeon/MO, I'll go in hoping for no rads. My surgeon got clear margins on both tumors, both were far enough from my chest wall that my MO hasn't been concerned, and negative nodes--again--continues to be the best news I've heard in a while re: my own DX.

My next TCHP is today, assuming that my labs look good; I'll be halfway done (3/6). Really looking forward to December and Herceptin-only or HP-only infusions. There's something else I never thought I'd say, that I'm looking forward to any kind of infusion. . . .