Triple Negative Stage IV
Comments
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Does the Trodelvey (sp?) cause your hair to fall out? It says it's a possible side effect but say if the percent of people effected by that.
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Hi Deanders,
I’ve been on trodelvy since June and my hair fell out shortly after 1st cycle, eyebrows & eyelashes too. My other side effects are fatigue, diarrhea & mouth sores. My Mets have all responded well to this new drug. There is a wonderful Facebook group for people on trodelvy that is very active.
https://www.facebook.com/groups/548907892701469/?ref=share0 -
moth, how is the tecentriq working for you? where you PD-LI positive?
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Has anyone with an activating PIK3CA mutation tried Copanlisib (trade name Aliqopa)? How about a VEGF inhibitor for TNMBC? Interested to hear of anyone's experience with either drug. I'm looking at two different trials...one with copanlisib and Opdivo and the other with a VEGF called fruquintinib.
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Hi fcb222, yes I'm PD-L1 positive. Tecentriq was working super well till now. I'm starting cycle 9 tomorrow. I have both lung & liver mets. Originally my lung met, while large, was considered necrotic and it was just slowly shrivelling up. My liver mets responded well. But on latest scan lung met has come back to life and grown again. So not sure what is happening there & why. Right now I'm staying on treatment but might have changes to treatment &/or rads in the future.
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https://www.fda.gov/drugs/drug-approvals-and-datab...
Effective Nov 13 FDA grants accelerated approval to pembrolizumab for locally recurrent unresectable or metastatic triple negative breast cancer
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Moth, have you changed your treatment or are you still on Tecentriq/Abraxane? It is so disappointing to hear about progression but I guess that has been part of our journey. Hopefully your MO will switch you to other options that will work. Last week my NP who works closely with my MO, read out a list of future options for me, even though I have gone through 11 lines of treatments so far. That was encouraging.
I will be starting Tecentriq/Abraxane next week. I am planning to ice my scalp, feet and hands. Hopefully this will help retain some of my hair and ward off neuropathy. Has anyone tried scalp cooling with this combo?
Is there a thread for Tecentriq/Araxane ? A search didn't come up with anything. I am really nervous about the SEs.
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I was on Tecentriq + Taxol, supposed to be switching to Tecentriq + Abraxane tomorrow. There is a thread for it here - not hugely active but if you ask questions I'm sure we'll all chime in. https://community.breastcancer.org/forum/162/topic...
I'm getting localized treatment to the re-awakened lung met but staying on this until liver mets stop responding.
Can you share your list? Is it different than my list? It's on p. 93 I think.... For me it's not that long. If you stop responding to taxanes, that takes off 3. If you stop responding to platins, that removes 2. Gemzar is usually given with a platin so it's really 1 tx not 3. For immunotherapy, in Canada we essentially have nothing. I was getting tecentriq through a clinical trial and then when it got shut down, had to fight tooth & nail to get it privately from the manufacturer. I would be surprised if Keytruda made it through approval here anytime soon, never mind Trodelvy. I think I will run out road before these become avail
CHEMO
Taxol (paclitaxel)
Abraxane (nab-paclitaxel)
Gemzar (gemcitabine)
cisplatin
carboplatin
Xeloda (capecitabine)
Taxotere (docetaxel)
Halaven (erubilin)
Navelbine (vinorelbine)
Ixempra (ixabepilone)
IMMUNOTHERAPY
Tecentriq (atezolizumab)
Keytruda (pembrolizumab)* see post immed below for reference to study
Trodelvy (chemical name: sacituzumab govitecan-hziy)
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Check out our new content on recently-approved Keytruda (chemical name: pembrolizumab). Keytruda is used in combination with chemotherapy to treat unresectable locally advanced or metastatic triple-negative, PD-L1-positive breast cancer.
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Posting here too: Check out our new content on recently-approved Keytruda (chemical name: pembrolizumab). Keytruda is used in combination with chemotherapy to treat unresectable locally advanced or metastatic triple-negative, PD-L1-positive breast cancer.
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moth , I am going to start Doxorubicin Liposomal (Doxil®) from next week, which belongs to an anthracycline-type drug. I didn't see this on your list. My MO said that even if I have failed a single chemo drug, sometimes the same drug will actually work when given in combination with another chemo drug (I think she was giving me some hope!)
According to the list you have above, I am running out of options - I have only two more regimens to try: Halaven and immunotherapy with off-label chemo combination since I have already progressed on Gemzar and Taxanes, Tecentriq with Abraxane is ruled out since I had progressed on Taxol.
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s3k5, I will.add it to the list when I'm on the laptop (on phone now) . I wonder if doxil is to adriamycin what abraxane is to taxol - same drug, slight change in delivery packet?
I don't see why you couldn't try tecentriq + abraxane. It's the immunotherapy doing the heavy lifting in that combo, the chemo is backup. Do you know if you're PD-L1 positive? If yes, it's more likely to work
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You are right - Doxil is a slightly different formulation of Adriamycin.
"Doxil is a new preparation of doxorubicin, liposomal doxorubicin. In an appropriate dose, it is supposedly equivalent to Adriamycin in effectiveness, but delivers much less toxicity to the normal tissues of the rest of the body".
Yes, I am PDL-1 positive, so immunotherapy is on the list but not with Abraxane. Since Keytruda is approved with a few other combinations of chemo drugs, my MO wants to use something that I didn't have before. Right now, I am hoping Doxil does something to keep the liver mets stable or shrink.
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Hello all - I am a formerly ER+ primary tumour person recently diagnosed with suspected TNBC mets (so mutated on progression). I seem to remember seeing someone post about how ER+ cancer that has become ER- has specific treatment options - perhaps that immunotherapy is particularly recommended for that? Does anyone know about this or have a link? Many thanks!
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I"m so sorry I'm just now seeing this. I didn't get notified someone replied to me! Anyway, Keytruda worked for a while, but I've recently had progression and will begin Abraxane and Carboplatin soon. Waiting for insurance approval.
How are you doing?
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Hi all - my TNBC status seems to have been all but confirmed. I have mets in mediastinal nodes and two nodules on lungs. I am keen to start on a clinical trial, with the hope of getting access to the newest drugs and 'saving' others for when needed. My original tumour was ER+/PR+ 8/8. Is anyone on a tiral now they could recommend? I'm in the UK but if the trial is not available here can also go to Italy (where my husband is from) or Australia (where I am from) for a trial. So hoping with that triangulation most 'types' of drugs might become options....
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hi ladies.
Freaking out. My mom is almost 2 years out from diagnosis and the other day she found what looks like a bug bite on her breast tissue
No lump and not hard but I'm still freaking out to the point where i can't eat or sleep. She just saw her breast surgeon for a clinical breast exam that she gets done every 4 months.
I'm making an appt for her to see her breast surgeon but i can't stop thinking it might be stage iv
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hi, ladies!
how did you know you had or suspected mets? feeling vulnerable amd sad0 -
ucfknights, deep breaths! I'll answer you in the not dx with stage 4 but have questions thread
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I need to know what questions to ask. I met with my MO last week and I'm still a little bit stumped/floored/confused about our conversation. He basically said that he received my foundation testing results. The last time I was/still am TNBC. There was a HER2+ marker identified this time but unfortunately there was no "expression" so it didn't change anything. Then he stated that I do not qualify for immunotherapy and we're going to stick with Abraxane as long I can tolerate the treatment. I'm new to the mets game here and I have no idea what that means, if anything. I feel like he told me I don't have any other options. My head is still spinning.
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GR4C1E - I started with chemo for my MBC in December 2018. I was on Abraxane with no immunotherapy as my PDL1 gene was less than 1% out of whack. The cancer had metastasized to my lungs. There were several ‘sparkles’, but only one tumor large enough to biopsy. I see you have already had mastectomies so a lumpectomy is no use. I also had SBRT (Stereotactic Body Radiation)to my lung. These two localized treatments have kept me cancer free since almost the beginning. I have not had any chemo since January 2020. My MO won’t say NED, but he is willing to let me go without treatment until when/if a scan sees something else. I know we are not exactly the same, but Abraxane was very doable. I do have some neuropathy in my feet that can be bothersome. I will take that for the cancer to disappear! Good luck and let us here how treatment goes.
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Thank you, JCSLibrarian. I've read a lot about SBRT here. I think I need to learn more about it and ask my MO if it is something to keep in my arsenal. Right now the Abraxane is helping. I have three large nodules in my right lung and a pleural effusion so breathing up to now was rough and I had a chronic cough which has since gone away completely. The largest nodule (there are three) is fairly large so the thoracic surgeon was able to get a good sample. I'm not certain, but I feel like the pleural effusion sort of comes and goes. I have really good days and tiny set-backs that make me think it's fluid building up again and then it seems to resolve itself a few days later. My last visit my breathing had improved significantly and my MO said he could hear breath sounds in my lower right where he couldn't before because of the masses and the fluid so I'm definitely heading in the right direction.
I agree that Abraxane is doable. I'm not really having any difficult side effects. I have treatment on Thursdays and I usually start to feel fatigued every Friday at 10 am on the dot! So pretty manageable. I treat it with a big bowl of macaroni and cheese and a nap. Works every time!
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first line treatment for mTNBC is atezolizumab + abraxane according to the latest guidelines . I don't understand why your MO would say you don't qualify for it. I can probably find you the guidelines if you want a screenshot to take to him.
For immunotherapy such as atezolizumab, it works best if your tumor expressed PD-L1. Have you had that testing? It's a specific test, separate from Foundation One. Even if your PD-L1 is low or negative, the immunotherapy is still recommended for mTNBC
Also, do you have copies of your Foundation One report? I just got my copy recently and I don't have much that's actionable there either. But you should get a copy so that you know what is there & keep an eye on any clinical trials that might be avail for your mutation.
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OMG, moth!!!!!!!!!!! I just read your post and got pinged from my PC doctors website. They just uploaded another report from the biopsy: "PD-L1 22C3 FDA (Keytruda) for TNBC combined positive score." So yes, it appears I've had that testing!
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awesome! then you definitely should be getting immunotherapy. Tecentriq (atezolizumab) was approved a while ago, Keytruda just in Fall 2020. Hope your MO follows up and either gets you started on immunotherapy or gives you a rationale for holding off....
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Okay, just got off the phone with my MO. He did request the PD-L1 but the combined positive score was less than 1% so he doesn't believe there is any benefit to adding Keytruda to my chemo regimen. So that explains why he said no immunotherapy, just Abraxane for now. Pretty much the same result that JCSLibrarian had. We're the "less than 1%, girls!"
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just received the pathology report that TNBC has spread to my lung. Meet with the MO Friday to go over the plan for treatment. Anything I should ask or discuss? I am only 2.5 years out since last treatment and just in shock
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alas, it's pretty common presentation for tnbc. I recurred at just past 2 yrs.
Key things to ask is: any other signs of mets? (have you have a bone scan, head + chest/abdo CT or MRI?)
PD-L1 testing. Critica to know this info as over 1% positive means you can try immunotherapy (atezolizumab aka Tecentriq) + chemo
Any chance of local treatment - ie radiation to the area? Depends on how diffuse or concentrated the lesions are. I had a lung met radiated in December 2020.
Did you have genetic testing at your inital dx? If not, do it now to see about BRCA etc because BRCA positive gets PARP inhibitors
I'll post more if I think of something else
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Hi, I'm also MTNBC and doing Abraxane, that's great you tolerable Abraxane so well for good period of time and able to get off now! I'm currently on this chemo but the neuropathy numbness and waking up at night sometimes can be difficult and am only 4 months taking it. I'm doing some PT now and going to try some supplements.
Question on the radiation to the lung--was this something the MO suggested or the RO? I think for now they want to see if Abraxane will make it go away, but it sounded like you felt that was an integral part of the treatment. I also have pleural effusion that has been drained but seems to accumulate still--does radiation work on that or is that solely chemo or continuous drainage?
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Elligtr -
just fyi, I'm also on immunotherapy since last March. Hard to know whether the chemo or the immunotherapy are providing the benefit.
I was just posting on twitter to my cancer friends there that I managed to beat back neuropathy. I had a dose reduction on both Taxol but when we switched to Abraxane I had full dose for first treatment and ended up with Grade 2 neuropathy. I've had a dose reduction since and my neuropathy has retreated to stage 0-1! I do use icing very thoroughly during treatments (I wonder whether my first full dose abraxane I was too sloppy with the icing). I also do aerobic exercise and massage to increase blood flow to all affected areas so the areas are getting nutrition (except during the actual infusion plus 5 min prior/after). B6 100 mg daily. Nerves do regrow but very slowly... I had Grade 2 neuropathy in my toes, fingers and around my mouth/chin. Felt like I had dentist freezing wearing off. It's almost all gone - just a bit of numbness on a few fingers and toes. (L-glutamine is the other supplement that some drs say is ok & mine did approve it but it can do weird things to liver values and because I have liver mets, we weren't sure what was causing what. So I dropped that. I used it in 2018 when doing 12 taxols though)
For my lung radiation - when I was first diagnosed in Feb 2020, I had a very very large lung met, taking up almost the entire central lobe in my R lung. BUT when we tried to biopsy it, the whole thing was necrotic. It was a fast growing tumor that was stupid enough to outgrow its blood supply. So we just watched it and concentrated on getting my liver under control. Then in November, suddenly the lung met 'woke' up, and again started growing quickly amidst the scar tissue. I was referred to an RO to see if we could treat it as an oligoprogression & that's when I had my rads.
I'm not sure about the pleural effusion but I know that there are several people on this board who had bad pleural effusion which stopped when the cancer became under control. So have hope that this is the case for you and it will stop soon!
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