Triple Negative Stage IV
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Hello friends, just FYI updated the treatment list on p. 93 (4th post) to add CMF as salvage chemo
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Disappointing update from Lancet Oncology on KEYNOTE 119 for pembriolizumab (Keytruda) for mTNBC as 2nd or 3rd line treatment
https://www.thelancet.com/journals/lanonc/article/...(20)30754-3/fulltext
"Pembrolizumab did not significantly improve overall survival in patients with previously treated metastatic triple-negative breast cancer versus chemotherapy."
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Moth, that is disappointing, and I thought I had read Keytruda had been approved for PDL-1 > 10%?. My doctor has not mentioned this lately, but said Tecentriq is good and can be ongoing even after the need to drop Abraxane (if neuropathy gets too bad). What is the ideal regimen for Tec & Abraxane in terms of time? I think Abraxane is doable, but certainly fatigue and neuropathy are concerns (as well as loss of appetite). Doc said people usually on Abraxane 6-12 months, so he wants to get a good run there, but then I would be nervous about Tecentriq as stand alone therapy, doesn't seem like anyone is on that, they move on to Trodelvy? I thought I had read (maybe on other cancer forums, because Tecentriq is used in bladder cancer) that after awhile of stability, tecentriq would be also discontinued and just be in monitor mode (even for stage 4). My doctor says Tecentriq also has activity in the brain, since I have had brain mets and one that we are monitoring, that is good to know.
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My MO said I will be on Abraxane for 6 months in total. Has anyone here gone longer than 6 months?
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GR4C1E, I was on Taxol for 9 months and on Abraxane now for the 4th month. AFAIK if it's working I'm not coming off unless I develop unbearable side effect toxicities.
That's why for me icing has been so important - neuropathy is the prime reason for taking people off a taxane. Icing and exercise seem to help keep neuropathy somewhat controlled.
Why only 6 months? Then what?
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My MO said that after 6 months the risk of neuropathy is higher and can be irreversible. Right now hair loss and being a little tired the day after treatment are my only side effects and I'm tolerating it well. I'm not sure what happens after 6 months but neither does my MO. No immunotherapy or rads for me. He's looking for an oral chemo, but right now, he said there's nothing definitive after Abraxane. I'll have a CT scan at the midway point, after three cycles but after the last three cycles, I don't know. Since the first two cycles my tumor markers have dropped from 61 to 49, so the chemo is having the desired result and the masses are shrinking. There's just no "after" Abraxane and he said when we stop, the masses will just regenerate and get bigger, so he needs to find something that will stop or slow the progression. That's why I was wondering if anyone has ever just stayed on Abraxane longer than 6 months or if that's even an option.
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see, from my perspective, if the choice is dead or possible irreversible neuropathy. I know which I'm taking, kwim? Neuropathy risk can be managed through icing, exercise, B6, (& possibly l-glutamine if no liver mets present) & if necessary, dose reduction, but at the end of the day, I'll take it, even if it's crippling, if I can buy more time.
(btw, I posted a journal article on the weekly taxol thread recently about evidence for exercise reducing neuropathy in taxane therapy)
I just saw my MO this morning & barring progression, I'm staying on for the foreseeable future so this will be 12 months+ on a taxane.
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Yeah, I'm totally with you, moth. I am an active person and exercise is a big part of my day so I think I stand a good chance at sticking with Abraxane. I want to keep going as long as I can until something better comes along.
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cross posting from breaking news as this is really mTNBC announcement
Heads up triple neg peeps - our drugs might not be all that after all.
FDA to reconsider drugs which were given accelerated approval
atezolizumab (Tecentriq)+ Abraxane
"The agency previously granted the therapies accelerated approval, but confirmatory clinical trials assessing their continued effectiveness have since failed.
As a result, the FDA's Oncologic Drugs Advisory Committee has scheduled a special three-day public hearing from April 27 to April 29 to allow patient testimony and expert commentary about the drugs in question. Once the meeting is completed, the committee will consider whether the approvals of the drugs... should be withdrawn and whether further study is needed." https://www.curetoday.com/view/fda-to-evaluate-sta...
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This is a really interesting study on metastatic triple negative & risk of developing brain mets https://onlinelibrary.wiley.com/doi/full/10.1002/c...
The idea is that if you're at high risk, you should be considering contrast MRI even if asymptomatic to catch early brain mets which can be treated with rads.
"We have developed a robust tool that is able to predict subsequent brain metastasis in mTNBC patients. Our model will allow selection of patients at high risk for brain metastasis who might benefit from routine brain MRI screening."
The tool consider location of mets & gives a score. see Table 3 & Figure 1
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moth, very interesting article. My MO orders brain MRI only if I have any symptoms like headaches, dizziness, etc. I had one brain MRI during mid-2020.
Question to other mTNBC members - Does your MO order routine brain MRI? I was ER/PR+ve and was diagnosed as TNBC only in Oct 2020.
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My provincial cancer agency doesn't do them routinely . I've actually had two brain CT in 2020 because I was entering clinical trials and it was a trial requirement. So as of last Nov I'm clear.
As I understand things now I'd need symptoms to get one outside of a trial. 🤔
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My oncologist does not order screening brain MRIs which stresses me out. I am looking into paying privately to have them done every three months (I’m in the UK) as with brain mets it really *does* matter to catch them early.
Moth - I’ve seen that about Abraxane and atezo being reconsidered by the FDA along with other immunotherapy early approvals. I’m confused why though - I thought the trial data was pretty clear. They say it’s among a group that failed confirmatory trials re overall survival. But the Impassion130 trial was clear that overall survival was improved in the PDL-1 positive population in a statistically significant way (and even in the general population though the difference was not statistically significant). See https://oncology.medicinematters.com/esmo-2020/breast-cancer/impassion130-atezolizumab-tnbc/18397546
Hopefully when they reassess it this will be clear to them and it will remain improved.0 -
Remain *approved*!
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I've not had a brain MRI. I have CT scan coming up in 2 weeks, I think I'm going to ask my MO.
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gr4c1e - I'm not triple neg, but in answer to your question: I've been on Abraxane for 16 months. My MO did have me stop chemo for two weeks at 11 months due to worsening neuropathy and referred me to a neurologist who okayed me to return to treatment. Interestingly during that short time off, I experienced definite improvement in my neuropathy. So I'm optimistic that I could have some improvement after leaving Abraxane. Neuropathy continued toworsen once I returned to treatment. But definitely manageable, so I want to stay on as long as possible since it worked well for me.
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Thanks, Moissy. I feel encouraged that staying on Abraxane is doable. I am definitely tolerating it well, plus it's helping shrink the masses in my lung. That's a win win in my book. I think I need to ask my MO why he's so adamant that I stop after 6 months, especially since he doesn't have another course of treatment lined up. This cancer thing is hard. I'm still working fulltime so most people think it's not that big a deal, but it's really stressful. My colleagues think it's just wearing a hat and leaving a half hour early one day a week (chemo). Easy peasy, right?
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I have a thing happening I've never seen until now. Has anyone had a bruise form around their port? I have a green and yellow halo circling my port since the last time I had chemo. It started out purple the day after treatment last week and there is still one small area that is dark purple, but it's fading. I didn't bump or injure it and it doesn't hurt. I also don't take any NSAIDs or aspirin that might cause bleeding. It's just weird, because I went through months of chemo in 2011/12 and never had this happen.
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GR4C1E sorry for the delay in response. Yes, I have had bruising around the port off and on, depending on which nurse accesses it. I guess if they are gentle, there is no bruise but sometimes there are some nurses who are in a hurry and cause this bruise. Hopefully yours has resolved by now.
I don't really know why your MO wants to stop Abraxane after 6 months. I thought they continue it till it stops working or becomes intolerable.
Moissy, sorry to read about your neuropathy. I had Taxol twice and the first time (in 2008), I did not know about icing my feet and hands and consequently ended up with severe neuropathy in my feet. In 2019, during the second round of Taxol, my oncology nurse made sure I iced my hands and feet and neuropathy was definitely less. I was also prescribed lyrica by the pain specialist, which helped. I purchased icing socks with gel inserts from Amazon, which really helped.
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Hello. I hardly ever post but just thought I would check in. I pray for ya'll daily.
Just thought I would share my story. I found out I had TNBC that metalized to my liver in June 2020. I started chemo in July 2020. I started out with Taxol and Carbo.
After 3 treatments, my 3 cm lump and swollen lymph node was totally gone. My liver lesions went with having multiple lesions to either a lot smaller or gone. I also had an allergic reaction to taxol so I then had to switch to Abraxane. All my 3 month cat scans till January 2021, came back great.. My doctor said in January 2021 we will start doing Abraxane only. My latest cat scan was April and while it still showed the original lump gone and liver lesions still with regression it showed I had 2 new breast nodules and a swollen lymph node in the same cancer breast. I had to have a mammo and ultrasound and then a bioposy. I am still waiting for the results. I have no idea what that will mean. I am sure it is breast recurrence. I think my doctor was totally shocked by these new findings. She just did a breast exam so it must have popped up quickly.
Just a little scary to think of what it all means. I have gone to work everyday and have hardly any side effects from chemo. i am also PDL1 Negative. ugh.
I am just ready to find out for sure and get on a plan.
Thanks for listening!
Kim
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Hello,
I was wondering if the genomic test showed any BRCA1 or 2 related genes.
Only the right doctor. can get the right treatment. Most of the time just figuring out the right drug is a challenge in TNBC.
Thanks,
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Hi. I will be joining this thread. Sorry for just jumping in. I will be reading all the past posts over the next few days. Today my cancer changed from estrogen positive to triple negative or one area is still estrogen positive and the other which had never been biopsied is now or was always triple negative. Most likely, my liver remans estrogen positive and my lungs are triple negative. My liver has responded for the past 3 years to hormonal treatment and is tumor free. My lung nodules had been too small to biopsy until recently but have slowly grown over the past 3 years. ~Kar
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KarPC, I answered to your other post on the genomic testing but also wanted to let you know that I'm triple neg & responding to immunotherapy in the liver & then grew a faintly ER+ tumor in the lung (which won me the daily letrozole pill as a prize). Seems having individual tumors which are doing their own thing wrt markers is not unusual.
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Thanks Moth! I read your other response on the Genomic testing thread. I see that we both have tumors that are not in sync - crazy.
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Hello all, so sorry for being late with a check in but I’ve been trying to avoid cancerland and have been in so many hospital appointments I needed some time away
as promised I'm back with my scan results (they are from March so a little delayed and a big update.
So I spent March to April having lots of scans a CT, brain MRI, breast MRI and an abdomen scan as my LFT's went slightly off key. The brilliant news was none of the big C had decided to lay roots in anywhere else so given all clears woo!! I have gallstones but apparently alit if people do and they are asymptomatic like me. A hillarious point was when the rather plump nurse (I wouldn't usualy say this but it's part of the story) gave me who is perfect BMI (because cancer made me thinner) diet advice and told me to cut down on my fat. When I asked her whether she wanted me to remove avocados or the teaspoon of olive oil she had nothing to say. Her colleagues found it pretty funny. My surgeon didn't as he said there are athletes and incredibly healthy people who have them and that cancer treatment can also cause them which obviously I won't be stopping!
My professor thought I had a complete response to treatment so decided to take a huge gamble in terms of stage 4 and TNBC and put me in for a mastectomy. My BC was deeeeep!!! After taking all the effected skin. I had both my Covid vaccines but was still nervous about staying in hospital. I got a private room and the surgery went beautifully. Aside from the drain rubbing on my ribs and them having to canuler in my foot as I have no veins left!
Anyway fast forward a very anxious wait for all the biopsy results and I was told yesterday I had a complete response to treatment. I sat there shaking with no top on in my Disney princess mask trying not to cry looking like a small one breasted child and thanking Jesus and the medical team. They agreed this is a rare response but are incredibly happy. I'm back on my treatment from June to give my body a chance a chance to heal then continue with my immuno and chemo To make sure none of those cheeky little C cells that hide are shook up and taken out!
I can't explain his relived I am obviously I'm still tentative about what lays ahead as they haven't operated in this situation before but the little shard of hope is shining through! 🙏🏻
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Oh, Lulabelle....brilliant news! Tough getting there, for sure, but BRILLIANT! Hooray!
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Thank you JoynerL 😊 it has been tough but so far manageable. I’m on my first line treatment abraxane and tecentriq. So lots of psoriasis, my thyroid went crazy hypo so I’m on 125mg of thyroid meds which seems to be controlling it. I got mild neuropathy which reversed when I went on my Thyroid medication but in my mind these are mild.
My professor initially said she would take me off chemo but due to recent findings she is going to keep me on both I think. The thinking is that taking away the chemo stops the immuno working two people on this regimen have been told this by different professors. She said that she’s pretty sure the immuno is having a response but as the chemo isn’t effecting my QoL aside from being abit less hairy there’s no reason to stop it. Also some women are on just abraxane for years as if it works it works sometimes. She’s very much about not rocking the boat until it’s needed which drive me crazy at the beginning however 11mnths in and at least six of those NED/complete response I’m starting to think she’s right. She seems to have made each decision at the right time so far and did the mastectomy to take the skin, tissue and effected muscle so it doesn’t spring back to life.I’m just taking it all one step at a time BUT TODAY I’m celebrating 🥳I think it so important to share the ups and downs of our journeys as I know when I was first diagnosed I frantically searched the forums for hope, reassurance and an idea of what’s ahead!
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Lulabelle - that is great news. Where are you treated in the UK?
KarPC - I'm a Flipper from ER to TNBC too. In my case I was ER/PR 8/8 at primary, and then when they biopsied at secondary I was TNBC. I have mediastinal nodes and lung nodules and there is a suspicion the lung nodules could still be ER based on the genetic profile we got from a liquid biopsy. My team is hoping to biopsy the lung soon.
It's really rubbish to flip like this - you learn everything you can about one type and now you're another. An oncologist I was speaking to recently said they don't yet know if cancer actually changes or if those of us with heterogenous mets had heterogenous primary tumors that seeded different 'clones' as metastases. Whichever it is, I just want them to work out how to cure it!
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I am treated in the U.K. in Leicester it’s been a long road to trust my professor and I don’t see her often mostly locums but she has the final say and headed the Impassion trials. It was approved about a week before my diagnosis so very fortunate in that way!
I can’t imagine how you guys must feel flipping to TNBC it’s a head spin at prior. I just keep in my mind that each persons cancer is different just as each individual’s cancer reacts differently to treatment and each persons oncologist will have a different approach. I’m aware my professor took a huge gamble giving me surgery now I’m just praying it keeps paying off0 -
Phet - So, we are both flippers! My doctor thinks I still have estrogen receptors in my liver tumors since they respond so well to estrogen therapy. My lung nodules apparently wanted to follow a different path much to my displeasure.
Lulabelle - Fantastic news!
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