Residual disease following neoadjuvant chemo

Hi Everyone,

Diane,

I agree with Mainy.  I'd get a second or even a 3rd opinion about getting more chemo after you're done with radiation.  You're still at a point where you can ask these questions and get additional treatment if necessary.  I'd consider the size of the tumor and 2 positive nodes as a reason to consider additional treatment.  As we've learned TNBC can be a tricky beast and doesn't play by the rules. 

Donna

Diane - I completely agree with Mainy that I don't understand an oncologist saying there was nothing else chemo could offer after seeing tumor growth on ACT.  I too would urge additional opinions about adjuvant chemo. 

Denise,

Do you know if there are any studies out there supporting doing additional chemo if you are NED?  Even though I'm currently NED and just finished radiation, I've asked 2 oncs about doing additional chemo to help prevent a recurrence.  Both of them said there is no justification for giving additional chemo if you are NED.  I just worry about any isolated or circulating cells.

Donna

Thanks everyone for your responses.  It has been so helpful.  I am investigating the clinical trial that was mentioned here--it is labeled "NCT01074970, BRE09-146, PARP Inhibition for Triple Negative Breast Cancer (ER-/PR-/HER2-)With BRCA1/2 Mutations" on the clincialtrials.gov website.  It appears as though I qualify and it might be a good way to get another round of more chemo.   I am about 1.5 hours from South Bend, Indiana, one of the treatment locations. I haven't pursued a second opinion yet.  And, I might not if I decide to do this trial.  Although, I did post the question on the John Hopkins website.  They have a forum where you can ask their oncologists their opinions.  They stated that since I'm in the "curative paradigm" that there are no studies that show I would benefit from adding additional platinum drugs.  Of course, they have not examined my chart, but it is another opinion.

So, I'll keep you posted.  If I do decide to do this trial, I can't start until at least 2 weeks after I'm done with radiation.  My last radiation treatment is scheduled for August 12.

Exactly right, Tania.  It's frustruating that they don't seem to know what to do with people like me (and others like me).  So, I think that the best bet might be the trial.  I have an appointment to talk to my oncologist about all of this on the 17th.  Will keep you posted on any new info.

Hello all,

I also participated in the PARP inhibitor/cisplatin/Gemzar Phase 11 trial recently at Stanford and asked to stop one cycle early because my nodes were not shrinking at all. I am still angry that the doctor would have had me continue when clearly there was no indication of response. The reports I read about PARP inhibitors is that they failed to meet expectations in the phase 111 trials.

I am BRACA neg. I had double mastectomy two days ago ( removing the healthy breast was my choice)  came home yesterday. Feel good and can walk both arms above my shoulder but of course it hurts some. The surgeon said to start immediately to keep muscles loose and before discharging me he gently raised my left arm above my head and said I could not injure the surgical site by raising the arm that high.  The left arm has the positive nodes, and I will get the path report tomorrow, perhaps, when I get the dressings changed.  The surgeon originally told me he would just remove "level 2" nodes, but said after looking at my hard axillary nodes in the OR he went to level 3- took a supraclavicular node. He said I have a "bad cancer" and will have a long road ahead of me of radiation and more chemo, although my onc. said maybe I was just resistant to chemo and there is no research supporting giving more chemo after neoadjuvant chemo, surgery and radiation . She will see me again when the path report comes in and I am afraid she will say there is nothing more she can do after radiation. She is Stanford trained and has been practicing a few years, so of course I feel she has reasons backing this statement about no research, but i see that many of you have had chemo twice. Has anyone had cisplatin/gemzar first and different chemo when that did not work? What was the chemo?

Also- has anyone out there had one or more positive supraclavular nodes? I am assuming that indicates some metastasis. What chemo were you given?  I think it is time for a second opinion at UCSF. Thank you all for being there. No one in my family knows just how serious things are for me ( mother is 90 and kids are teens)  and I appreciate being able to be totally honest here and in my support groups.

Thanks, Karen

Thanks D,
I am certainly open to more chemo-anything! I have my wig at the ready.  Would the standard of care chemo start now or after radiation ?

Good question - I don't know whether it's better to have chemo before or after radiation.  My inclination would probably be to have the chemo first, then irradiate later.  That way, your treatment would be more like what most people get, just with an extra dollop of chemo in the very beginning before surgery.  Donna's advice on radiation is good.  I'd probably do the T/AC and then follow that with the radiation protocol she had.   It's a long haul, but worth it if it is just one crummy year out of a long beautiful life.

Good night everyone,

d

Hi Karen - I participted in and know quite a number of women from the Stanford trial.  Any adjuvant chemo has always been recommended before radiation. I am surprised that any of the docs there would have kept you on the protocol if there was no indication it was working.