Triple Negative Stage IV
Comments
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Article dated May 10th on CancerNetwork:
Datopotamab Deruxtecan Shows Promise in Heavily Pretreated Triple-Negative Breast Cancer
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Thank you JoynerL. Oncologists on twitter who were live tweeting from ESMO were very excited about this one. I will add it to the list of treatments on p. 93 (4th post down)
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JoynerL, thanks for the link. There aren't enough treatments that work for Triple negative patients.
General question - how often do you all get scans (PET, CT or MRI)? I seem to be scheduled for these so often - my previous PET scan was on 30th March and I have been scheduled again tomorrow (?) for a PET scan, prior to my chemo. I thought every 3-4 months was the norm.
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Every 3 months for me. I just had one last week.
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I was q 8 weeks while on clinical trial but now I'm on q 12 weeks. CT & bone scan.
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SK35 - I usually get a CT scan every 3 months and a PET/CT once a year. I am currently on a trial, and they scan me every 2 months for the first 6 months and then every 3 months after that. If I am facing slight progression yet my Onc and I decide to stay on a drug a bit longer, we will often move the scan up to 6 weeks or 2 months to make sure my cancer isn't taking off. I generally push for more scans. I like to catch my progression early, and I get nervous if I go to long without scans. ~Kar
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It looks like I might be going off my 1st line in the next couple months. My liver mets continue to respond to immunotherapy + taxane but latest scans show a. new spot in lung and growth in spot in abdo lymph. I had different spot in lung in Nov 20, and bone met Jan 21 and now more... by RECIST criteria I think I might still be stable but the constant new growths cropping up are worrying the team. Current plan is to rescan at end of June and see what it looks like then.
My next lines are capecitabine or gemcitabine+cisplatin IV. I'm leaning to the latter - has anyone been on this?
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Moth, I've been on Capecitabine for 28 months with success. Main concern is hand and foot sydrome (typically manageable if not pleasant) and fatigue. I'll take it. There's a great string on Capecitabine (Xeloda string).
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Has everyone on this thread seen this? Saw on another thread. Very promising!
https://www.cancernetwork.com/view/datopotamab-deruxtecan-shows-promise-in-heavily-pretreated-triple-negative-breast-cancer
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@moth I’m on that cisplatin now. Low dose. They haven’t added the second drug w it yet my markers went from 500 to 100 and scan results tmrw. So according to markers it’s working but scan tmrw will give better pic. So much anxiety w scans. My MO does every 6 mos for cat scans.
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Lynn, super interesting you've had such a good response. Maybe they'll write you up next - I was just reading a case study of someone with liver mets and a PFS of over 4 yrs on xeloda (but she was ER+). I hope you'll be gracing the journal pages in a few more years!
I thought I had read that xeloda might be better for bone but not as good at visceral mets ... but now I'm wondering if that's true as my quick search last night didn't find evidence. I will keep looking.
I've seen it argued both ways, with assumption that xeloda is a bit 'easier' (which I know it is not for everyone but still): should you give the easier one, see if it works and enjoy QOL for long time? OR should you give more aggressive chemo now, when pt can tolerate it better because as time goes on, the more aggressive chemo might not even be an option anymore. My MOs (I have 2 at the moment because the primary is on sabbatical) seem to think that I would likely go through both of these treatments so it's just a matter of order?
Trodelvy is of course the big thing we're waiting for but it's not approved in Canada yet and if it does get approved, no guarantee it will be funded (my immunotherapy is not gov't funded at all).
dlittkeman, I've forgotten where are your mets? fingers crossed for your scan!
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Wow Lynn, that's a long time on Xeloda. I got 9 months. Moth, it kept my liver clear and my lung nodules reduced in size for the first few months before slowly creeping back up in size. I loved Xeloda. I had so much energy on it. My feet and hands were sensitive but not enough to stop my daily hike or any activities.
Today, I had my first SBRT to my largest lung nodule. They plan to do 5 sessions. ~Kar
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@moth my spine is diffuse w Mets. All through it. So scan came back clear and even showed some healing!!! So for me my TM did tell the story. I am having good luck on cisplatin! Praying it continues and happens for many more on here too.
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Kar, I had SBRT to a periclavicular node. It was a breeze. No side effects, and in and out quickly (once the initial more time-consuming set up appts were completed).
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Joyner. Thanks - that's great to hear.
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One general question to the experts on this team: what does 'atrophy of spinal cord' mean? I have extensive spine mets from Cervical spine to Sacrum (cross posted on Bone Mets thread)
MRI report from yesterday says :
"Spinal cord demonstrates incremental atrophy of the distal thoracic segments."
I am trying to reach the Neurologist about this but till then, if someone knows what this means, please let me know. Thanks in advance.
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dlittkemann that's great news! I am glad it is tolerable for you. This is something on my list too.
I was on CMF and it did help keep bone and liver mets stable, but the side effects were too much for me to tolerate. But then it was a combination of three strong drugs. Hopefully Cisplantin alone would work well too.
Right now I am on Trodelvy and my MRI report says 'there is improvement in the bone marrow signal and all the bone mets show 'stable' disease'. It is too early to tell but it seems to halt progression, which is a step in the right direction!
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Hello TNBC-ers,
I have lung, lymph and brain mets, originally ER+ but now TNBC. They seem very aggressive - I was only diagnosed mTNBC in November, and already they are throughout my brain and chest. I am having WBRT for the brain now but have been off systemic treatment for the chest for five weeks (while they try to sort the brain).
I started on gem/carbo chemo in January which seemed to work for three cycles, but I've just found out it stopped working. All lung lymph nodes have increased in size (hilar, sub-pleural, etc). I'm scared because I hoped that the gem/carbo had been keeping things stable in the chest at least but it seems it hasn't been doing that for a while. I had a weak response to chemo at my primary diagnosis (when we thought I was strongly ER+ and hormonals would save me - ha. ha. ha.) and now have become resistant to my first line of MBC chemo within about 3 cycles. It doesn't bode well.
I'm in the UK, and my team has ordered a fresh biopsy so we can check receptors etc since progression, and is suggesting I go onto Taxol. I think I'd start this in a week or so to give me time to recover a bit from WBRT.
I just feel that chemotherapy doesn't work for me - I have a very mutant cancer (my Foundation One report confirms this!) that seems able to just find a way around any chemo we throw at it in a short amount of time.
Does anyone have any a) positive words to say about Taxol b) suggestions for things I should ask my oncologist or c) out of the box suggestions? I am scared that this is the beginning of the end - that there will be nothing we can find to slow things down. Trodelvy is not available in the UK yet although we are hoping it may be on a compassionate basis from about July this year. Will I have time for that? I don't have much in the way of symptoms at the moment but I do have an annoying cough and some chest tightness. I'm thinking of asking about palliative rads to the chest lymphs to ease this and maybe buy me some time...
I've not had immunotherapy yet (because of a mixup with my biopsy and PDL1 testing at re-diagnosis) but here it is not funded after first line. I could pay for it privately if I thought it was worth it but it would be £7000 or so a cycle (I can do it but I'd need to think it had a chance of working. Keytruda and Taxol, for eg - would this combo be good?)
Sorry for the length of the post, I just am in one of those mindframes where I think nothing is going to work on this cancer and this is the beginning of the end. I need to pull a treatment out of the box that will resolve things quickly, or at least keep me stable until Trodelvy arrives/I can get on the trial of the new ADC
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You have a lot of options available. Hope the radiation to the brain zaps those lesions dead.
I have had Taxol and my mets were stable for about 6 months. It was the most tolerable of all chemo for me. It is definitely worth a try since you have had the platinum based drugs already. I have diffuse mets to my spine and liver and already had more than 12 lines of treatments! I had either progression with each one or had to stop due to a reaction. But not giving up yet!
Doxil, Halaven, Adriamycin are a few other chemo you could try (if you have not done so already). These have known to work for many. Plus I am sure there are a few more that's not your 'treatments' list.
You could research and check who makes the immunotherapy drug (keytruda, Opdivo, Tecentriq) and reach out to the pharma company's patient assistance program. Each one of these is given along with a chemo.
Please keep us posted.
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hi phet, want to encourage you that taxol is very good & for me was effective - though I'm taking taxanes with the atezolizumab so it's hard to know what's driving the response. It would be great if it works and then you can try trodelvy when it finally arrives (I'm waiting for it in Canada too)
As s3k5 says, there are several more chemos too.
S3k5, it's not even the $,Keytruda is not approved for breast ca in canada and trodelvy not approved for anything yet so we literally cannot get them prescribed even if the pharma co would pay. I ran into that prob with ipatasertib which Roche might have given to me outside of trial but they legally can't
Hang in there phet. I know it's not easy but I'm really hopeful for you still. Something will whack this monster down...just have to keep trying
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I was so discouraged. TNBC, mets to right lung, PDL-1 negative, too many tumors for SBRT. MO said we start with Abraxane and see what happens. I'm into cycle 5 and just had my follow-up CT. MO said that my overall cancer has shrunk by 1/3. My CA27-29 started @ 68 and today it is 26. That pesky lymph node in the middle of my chest that looked like it was up to no good 6 months ago is now described as "grossly normal".
Originally, my MO said the Abraxane would end after 6 months, but now we're talking about staying on for as long as I can tolerate it. Peripheral neuropathy has started to rear it's ugly head but so far I have tingling and numbness in my toes and the balls of my feet. Just feels weird so far, no pain yet, so we push on!
Also, I have learned that I'm awesome at drawing eyebrows where my eyebrows used to be when I still had eyebrows! The other day a coworker said: "well at least you got to keep your eyebrows" (whatever that means) and I stepped closer and showed her my artwork! With practice I've gotten pretty good at drawing individual brow hair detail like a pro! (okay, they make pens now that practically do it for you - but I'm totally taking credit)
I'll be crossing my fingers that the Abraxane train keeps heading in the right direction. I'm going to go home, wash my pretend eyebrows off my face, soak my tired (numb) feet and do a little happy dance.
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GR4C1E, glad that Abraxane is working for you. When I was on Taxol (same class of drug), I used to ice my hands and feet which prevented neuropathy. Currently I am on Trodelvy and having neuropathy though I ice my feet - so don't know if icing works for everything and everybody. It might be worth a try.
I am curious to know which pen you use for your eyebrows? I have tried all kinds of pens/mascara to draw the eyebrows. No success (I am not a good artist!).
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I use Mabelline TattooStudio. I also found a tutorial on YouTube on how to find the exact starting point, high point and taper point on your own face! So I start with those three landmarks and draw a connecting line, then draw hair sweeping from the center out to the final landmark point. I get real fancy with it! I've been experimenting with different colors and types. Mabelline has jar of pomade with a brush and also a pen with 4 points. I use both. Maybe I should make a video!
I've heard that ice is good for the neuropathy. I haven't tried it yet, but definitely will. I have some awesome CBD infused Epsom salts that I like to soak my feet in. I don't think it does anything special but it feels good and smell like roses!
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hi candy, yes as Nicole said I meant hormone markers er/pr/her2. We tend to lose those so it's not unusual to become triple neg but rare to start TN and pick up markers. Otoh, BCO mods just recently posted a study where people did gain her2. I would like that for myself as it would open more treatment.
The genetic mutations that show up on genomic tests of your tumor might change though as tumors continue to mutate but again there are few actionable mutations. Your BRCA is good. P13k is the only other big one to hope for imo tho piqray seems hit & miss
Btw, I know someone else with mbc and an immune disorder and she too was told that they can't use immunotherapy.
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Thank you everyone for your reassuring comments
I think it just all got too much for me last week - dealing with the whole brain radiation, the side effects and the psychological side of that, and then getting this news about progression in the chest lymphs. You are all right that there is no particular reason Taxol shouldn't work just because Gem/Carbo didn't 
I had Docetaxel as part of my treatment for my primary (which was ER+) - three cycles, which I think had some effect (though I had a sense the breast tumor was growing again at the end of the three). I just hate ticking off one option on the not-particularly-long list we have from TNBC. I will definitely look into contacting the pharma companies re immunotherapy although for some reason my oncologist (the TNBC immunotherapy guru in the UK) doesn't think I'll have much luck getting them to cover it. And I'll hope that whatever happens, I'm stable-ish until I can get Trodelvy! I was also hoping to be a candidate for the Daichii ADC trial that is opening soon in London and showed such good early results recently. But I'm not sure how they'll cope with the brain mets issue....
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Just an FYI, I got Kaytruda approved with the help of my Onc. through Merck's compassionate use program, which was free. You might as your Onc. about this.
I was on Keytruda for 9 mos. and was stable, but then had progression so I stopped. Trying tot decide whether to try Trodevly for my TNBC.
All the best to you.
Lynn
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New study on the horizon for mTNBC. I don't see details of location yet. Phase 1 study to investigate agents which might boost Trodelvy activity. Appears geared for pre-treated pts so worth keeping an eye out for this.
"Open-label Phase 1b/2 study will evaluate the safety and preliminary efficacy of Anktiva (N-803) and PD-L1 t-haNK in combination with antibody-drug conjugate Trodelvy and low-dose chemotherapy in subjects with advanced triple-negative breast cancer (TNBC) after prior therapy"
https://www.bloomberg.com/press-releases/2021-06-1...
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Targeted Oncology put up a series of videos of up to date (now, May/June 2021) approaches to TNBC, including in the metastatic setting - a sort of virtual tumor board.
videos and transcripts - this is episode 1 https://www.targetedonc.com/view/case-1-53-year-ol...
Dr Elizabeth Mittendorf, Dr Ruta Rao, Dr. David G Hicks
They do talk a bit about early stage treatment too so you have to jump a few episodes if you want just mTNBC but it's all very good. Nothing really new - nothing that a person who has been reading these threads here wouldn't know about but it's good to see it all in one place and verified as current best practice.
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Hi. Does anyone have the PIK3A mutation and tried Piqray (alpelisib)? I recently tested positive for it the same time as flipping from ER+ to triple negative. It's not an approved drug for triple negative, yet my onc thinks I will be approved for Piqray based on having the mutation. I think I have a mixture of ER+ and triple negative tumors. I fear it could work on ER+ tumors but not the others. Thanks ~Kar
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Sorry all for intrusion into stage 4 thread-- I follow this due to TNBC.
KaPC - Two chemo drugs I was treated with for TNBC are Carboplatin & Taxotere. They are also used with Her2+ tumors of any ER status (in TCHP). Those two do not appear to have been used in your history so might be worth asking about.
Carboplatin considered esp good for high grade/high Nottingham basal or basal-like TNBC.
Best wishes to all.
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