Triple Negative Stage IV
Comments
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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!
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fwiw, I don't have brca mutation either. And I was weakly er+ at biopsy but oncotype and final pathology came triple neg so either hetergenous tumor or rapid mutation? This did remind me of a member here who has had many progressions and recommends vigilant testing and retesting as her experience is that hers keep changing which opens up more treatment options. She's survived many years with organ mets doing this; I'm keeping that in mind for myself.
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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.
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I wanted to make a list of the lines of treatment for metastatic tnbc. Pls let me know what I've missed and I will add it
From 2021 SABCS & Dr Hope Rugo, a roadmap for treating mTNBC and suggested treatment order
https://twitter.com/tmprowell/status/1468234606860...
Also be sure to check out the NCCN guidelines for latest evidence based recommendations.
CHEMO
Taxol (paclitaxel)
Abraxane (nab-paclitaxel)
Gemzar (gemcitabine)
Adriamycin (doxorubicin) - lifetime dose limits due to cardiac toxicity
Doxil (liposomal doxorubicin) - lifetime dose limits due to cardiac toxicity
cisplatin 2020 cochrane review of benefit of platins in mTNBC
carboplatin (see above cochrane review of platinum chemo)
5-FU + cisplatin or carboplatin (2012 study; salvage chemo regimen; esp eff for liver mets)
Xeloda (capecitabine)
Taxotere (docetaxel)
Halaven (erubilin)
Navelbine (vinorelbine)
Ixempra (ixabepilone)
CMF (Cyclophosphamide, Methotrexate and Fluorouracil) (2017 study; salvage chemo for heavily pretreated. Well tolerated, median OS 9 mos)
IMMUNOTHERAPY
Tecentriq (atezolizumab) ***** AUG 27, 2021 - Roche/Genentech withdraws Tecentriq from FDA accelerated approval. Pts currently on treatment who are PD-L1 positive and responding should discuss with oncologist but can stay on treatment. mTNBC experts on social media are reporting new pts should start with Pembrolizumab. ASCO and NCCN guidelines to be updated shortly. Genentech press release https://www.gene.com/media/press-releases/14927/20...
Keytruda (pembrolizumab)* see post immed below for reference to study
CAR-T Chimeric antigen receptor T cells
ANTIBODY DRUG CONJUGATES (ADCs)
Trodelvy (chemical name: sacituzumab govitecan-hziy) https://community.breastcancer.org/forum/8/topics/...
Datopotamab Deruxtecan in early clinical trial as of spring 2021 but showing great promise https://www.cancernetwork.com/view/datopotamab-der...
ADJUNCT
Here is a post listing some evidence based adjunct treatments which may convey benefit to mTNBC pts
please copy & paste this link and open in a new tab. Every time I try to make it linkable it just loops back to this post
https://community.breastcancer.org/forum/8/topics/799766?page=99#post_5697140
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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
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Hello ladies. Im getting a port tomorrow and starting Abraxane and Tecentriq next wednesday. How long did this treatment work for you? Praying everyone here is doing well.
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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
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Naesha, I have posted above on Aug 8 a list of the common triple neg chemos. My MO said if mg current treatment didn't work we'd move to xeloda, or gemzar+cisplatin.
Fwiw, at my 8 week scans I showed 'stable' - some of my mets had shrunk, some grew but added all up tumor burden was same. At 16 weeks I had regression with overall reduction in tumor burden.
It would help if you filled out your profle so your treatments and dx show in your sigline 😊
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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?
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Moth my bone mets are stable but my colon and mets around ureter grew on Xeloda. I start abraxane and tecentriq next week. Nervous. I did chemo 8 years ago and wonder what I need to get. Do I need ice gloves and socks? Was neuropathy an issue with abraxane? I use to chew on popsickles and ice during infusions. I had bad mouth sores and neuropathy. Did you do that or is it not an issue. Thanks for any insight or tips. Do i need to bring crackers to eat? Sorry for all the questions
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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.
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melmcbee, I hope you have a great response to the tecentriq/abraxane! I iced my hands and feet for the neuropathy when I had abraxane alone. I didn’t have any mouth sores, diarrhea, eyptc, only fatigue and neuropathy. The infusion doesn’t take that long.
Neither abraxane or the immunotherapy worked for me. I have a low pd l-1 mutation percentage. It killed my thyroid and I had side effects from that. Currently on Xeloda but it’s not working either. Hoping the next thing works for a while.
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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
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Hi Moth,
I filled some information regarding my diagnosis :-). I was on AC/Taxol in 2018 , then did Xeloda in 2019 but did not work. So now I am doing Abraxane. So are you currently on Abraxane or did Abraxane before and did not work.
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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.
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I had cancer mets in my liver, peritoneum, rib, and lymph nodes in my spine.
Pembrolizumab caused permanent adrenal damage and balance issues. I am steroid dependent.
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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...
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hi ladies,
Anyone who were in Abraxane, did you guys lose the hair or some ?? I am using the cold cap to prevent the hair loss and its not been much help.
Moth, i think now my profile is update :-). Thank you for the tips.
-Take care
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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.
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Hi Wanderingneedle,
Are you still in Abraxane? or your hair regrow after you were done with Abraxane or during the Abraxane?
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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!
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Moth, I dont know how you tolerate getting infusions without a port. My veins are shot. Lol. Wanderingneedle, my pd-l1 is also low at %. On my Foundation 1 report Abraxane and tecentriq was the only suggestion for chemo. I didnt have any genes that was helpful. Naesha, good luck on icing your head. I shaved my head the first time I did chemo. I just didnt have energy to fight it. Healing hugs to everyone
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@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
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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
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poor miceys in the labs
never been convinced that animal models have been that helpful honestly. I have had rodents as pets for years. They're very social and you can teach them to do tricks. Rats esp get mammary tumors a lot - we've had tons of surgeries on our ratties removing mammary tumors. Sigh. They're super prone to them. 0 -
@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.
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I want to know more about Barbara’s story! Gives such hope.
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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.
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I have had most of those therapies listed. ☹️ I have an appointment for a second opinion and will ask if anything can be taken again since some of them were for ER+ before it mutated. I really look forward to more answers as they do more research.
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