Triple Negative Stage IV

moth, I didn’t find anyone else here who has done single agent gemzar. I looked for articles/research that did this and what I found was they add in the carboplatin when there is a BRCA mutation which I don’t have. My TNBC is a mutation of my original ER+ diagnosis so I don’t have many of the mutations that come with it. I have an appointment for a second opinion in two weeks so I’ll have more answers then, I hope!

moth, I swear the more I find the more I realize we don’t know about this disease! I have an appointment in two weeks with an oncologist /researcher who specializes in TNBC at UCSD. She’s great, very smart/quick to make connections and put things in their place. I just wish she wasn’t so far away! She wants to see me in person, didn’t want to do a telemed appointment. I will have to ask her about retesting.

Moth,

Something for your list- this was a phase 2 trial of an immunotherapy combination for TNBC, heavily treated patients- it was not remarkable except for a terrific response from those patients who were ER-positive but converted later on to ER-negative. Both Barbara Bigelow and Judy Perkins, who are presumed cured from immunotherapy trials (one a CAR-T the other an immuno-chemo combo) were in this category of patients whose cancers switched subtypes. Bigelow said her Dana-Farber MO said the best responses they get in immunotherapy are those with that particular switch.

Here are the conclusions and a link to the trial summary is provided below.

This trial combined Pembrolizumab with another immunotherapy (Imprime IGG). "Researchers observed a particularly pronounced clinical benefit in a subgroup of patients who initially were diagnosed with ER-positive/PR-positive disease but progressed on endocrine therapy and — prior to treatment in this study — had biopsies that confirmed conversion to triple-negative breast cancer."

For Keytruda as monotherapy, the response of all TNBC patients was:

...a 5.3% overall response rate, a 7.6% disease control rate at 24 weeks, median PFS of 2 months, and median OS of 9 months.

Adding the Imprime IGG lead to an ORR of 15.9% (95% CI, 7.9-29.4). More than one-third (38.6%; 95% CI, 25.7-53.4) of patients achieved stable disease and 40.9% (95% CI, 27.7-55.6) had progressive disease.

But a subgroup of 12 patients originally diagnosed with ER-positive/PR-positive disease who underwent prior treatment with endocrine therapy and later converted to triple-negative disease did much better.

These patients had all received prior treatment with tamoxifen, aromatase inhibitors or CDK 4/6 inhibitors, and all had received at least one line of chemotherapy after development of metastatic disease.

In this group, six (50%) achieved response to the combination, four (33%) achieved stable disease and six (50%) achieved disease control for 6 months. Median OS in this group was 17.1 months.

https://www.healio.com/news/hematology-oncology/20...

The upshot is that everyone who has a ER-positive to ER-negative conversion should seek out some kind of immunotherapy combo

hi everyone,

I have been doing the Abraxane for last two months.Next week i have PETSCAN and hoping the cancer should be wiped away.I have a question to all ladies, what if the Abraxane is not working?? Is there anyone to whom the Abraxane did not work and has tried some other drugs. To me, I was not eligible for Immuneotherapy so i am doing Abraxane and according to my doctor they will use the Abraxane until it stops working.

Can anyone of you please share.

Thank you

melmcbee, I'm in a trial and getting taxol and Tecentriq since March 19. Scans at end of August but given lack of liver symptoms I think it's still working. So ~ 5 months so far.

Where are the mets that are troubling you most?

melmcbee, well I'm still on taxol not abraxane (hoping to switch to abraxane but it's a long story with my clinical trial being cancelled) & I'm icing. Some people roll their eyes a bit in the chemo room but whatever 😉

I believe abraxane can also cause neuropathy.

Thing is with our treatments we might be on them much longer than a normal course in early stage. So I iced from the beginning to give myself the best chance go stay on a taxane long term. MO told me that most people who come off taxol do it due to neuropathy getting unbearable. I wouldn't want to have to do that if it was still working, kwim? So I'm doing my best to prevent it. I've had 13 taxols so far and neuropathy is very mild right now - more of a sensitivity to cold. Have to wear socks all the time, even in hot weather ... hands are ok, just sore feeling nails & a teeny area on the tips where they feel a bit numb.

I got mouth sores after 11th infusion. The magic mouthwash solution from a compounding pharmacy keeps it in check.

I bring food but taxol is a longer infusion + needs premeds which abraxane doesn't. The first time I had Tecentriq it ran for 60 min. If you don't have allergy rxn they run it for 30 min after that. I think abraxane is also 30 min. So you won't be there a huge long time except maybe the first few times...

I'm getting a port at the end of the month. Veins are getting harder to access each week.

Moth,

I iced my hands and feet for my Taxol infusions as well. I think it helped me because I did not develop neuropathy. It was no picnic during the infusions, but I think it was worth it. The nurses in the infusion clinic were very understanding and allowed me to bring a large ice chest full of ice packs to ice. At my infusion clinic in Northern California, there were other patients icing as well. I think it’s becoming more common

hi Naesha , not seeing your stats. Maybe check under settings on the left side - that's where you decide what to make public or keep private

I'm on taxol and atezolizumab as part of a clinical trial since March as first line. It's shrunk my mets on my 16 week scans. Haven't tried abraxane yet. Research last week says abraxane + atezo more effective than taxol + atezo but not sure I can get that combo here in Cda. I can get abraxane alone but I think I want the immunotherapy.. will be talking about it with my team tomorrow.

Hi Barbara, sorry to hear about the adrenal and balance issues. Balanace esp sounds like it could really affect qol.

I just realized from another thread that you're this Barbara and you're NEAD! Wow

https://www.cancernetwork.com/view/barbara-bigelow...

Hi, Naesha,

I lost a large portion of my hair on abraxane. I shaved it off and started over. It has remained thinner but I think it’s from treatments I’ve had since then.

Naesha, abraxane didn’t work for me as a single agent or with tecentriq. My hair thinned but i kept it shaved until I started the next treatment. I wasn’t on abraxane for long, 5 months? I hope you have great success with it. I know some people feel very strongly about their hair but once it started falling out and I shaved it off I got past it, too many other things to deal with. I did wear a wig for a few months but it was winter so not as annoying as summertime. I made a few turbans to wear at home and I was good until I started letting my hair grow. It’s not near as thick as before and much more gray than before. Good luck!

@moth cannot thank you enough for that list!!!!! I didn’t know us TNBC gals had even this many options. Thanks so much sending hugs

dlittkeman - you're welcome! i just added another thing yesterday. I just need to figure out how to make a link directly to that post so I don't lose it 😀

A couple of these are experimental and not avail in all places but we can at least ask or try for trials. And the list isn't as short as I'd thought it would be.

Hope you're well 😊 hugs

@moth that list made my day. We are so similar so let’s stay in touch as much as we can during this. It’s lonely being TNBC. Your posts help me a lot. I just finished my ct scan. So worried. Praying for stable. Any prayers I will take them xoxo.

I hope you don't have to wait long for the scan results, dlittkeman! Hang in there.

I have a port placement on the 24th and CT on the 31st.