Triple Negative Stage IV
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Who is administering Ivermectin? I am very interested and have been on Fenbendezole and am considering taking Ivermectin. What milligram are you on? Any words of wisdom. I cannot tell my oncologist I am taking Fen. Please email me at oropallo@aol.com if can
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So does anyone know if Gemzar is given for TNBC?? I definitely do NOT think the Trodelvy is working at all (I speak to my MO tomorrow) but its not looking good none of my liver or bone pain is gone...
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Nicole - Yes. Gemzar is a chemo that is given for TNBC. I was on it March 2021-August 2021. It was a combo of pembro/carbo/gem.
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Nicole, here's the list of most common mtnbc treatments.
https://community.breastcancer.org/forum/8/topics/...
I'm sorry that trodelvy might be failing:(
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Well I had meeting with my MO today... she said yes, basically 2 chemos left for me if Trod. fails... Gem/carbo and Abraxane/ or Taxol.... but Moth...I just noticed one on your list I never heard of.. Navelbine (vinorelbine) ? Is that used for TN? I tried to google but it didn't say?
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Yes, there are studies about it for TN. Either alone, metronomic or with a platinum agent
https://scholar.google.ca/scholar?q=vinorelbine+me...
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Nicole have you had Pembro yet? Pembro/gem/carbo would be an option to try?
My blood counts didn’t like Gem or Carbo along with Pembro. So for three months I got Pembro alone but it didn’t do much. Now I have started Halaven . Hoping this will be my miracle drug! I have a lot of fatigue with this, but hopefully my blood count stays high enough to continue with the treatment.
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S. your blood counts should stay good on Halaven low blood count is not one of the high side effects or at least I don't remember it being one. I never had Pemo do you mean keytruda? >. If so...it probably wouldn't do me any good as I am not PDL1 Positive anymore..however the HER2 BATS trial I am looking at UVA combines with Keytruda..and you have ever had immunotherapy then you cannot do that trial...so I think I would go for the trial first... this is the trial
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This thread has gone a bit quiet. How is everyone doing?
My wife's latest PET showed some mild activity in a couple of supraclavicular lymph nodes, but they think it might be due to her latest Covid vaccine. Otherwise she remains NED. Fingers crossed that this lasts. She's getting Carbo every 3 weeks as maintenance.
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ap3, how wonderful that she's ned!
I had progression in December & we applied to switch to trodelvy. Took almost 6 weeks to arrange.
I have finally done 3 cycles of trodelvy & had scan & it is not good. Several new lesions. But lots of stuff small or same too
my team wonders if the new things grew in dec/jan during the treatment break. So I'm doing 2 more cycles & quick rescan in 6 weeks.
Other than that I've been gutted by the deaths recently of several mtnbc women I followed on IG or FB.... they all seemed to run up hard against the 3 yr mark. Panicking me that I only have a year left.
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Im sorry Moth I feel the same way ....in 5 days I hit my 3 year mark...running out of time and treatments. Will you look at a trial?
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Oh Moth, I'm so sorry to hear that Trodelvy might not be working well for you. It's such a horrible disease. Fingers crossed that they find something that will work for you.
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Moth I see I did respond to you here about the possible progression. Hoping that you just need more time on T.
Is anyone doing the Keto diet? I was considering it based on a great informative video about the metobolic side of cancer (I will post a link to video below). but concern is about blocking the fatty acid pathway. I know that if we cut carbs and sugar which is good but it can then make the cancer just pick a different pathway to eat from....
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Well, it looks like my wife is out of this thread, for now at least. Her biopsy came back and she has gone from TN to ER+ 8/8.
It's weird how this disease works. She's being treated as ER+ now, but I will make sure they biopsy *anything* new that turns up. I'm not in any way convinced that the TN cells are done with her yet, but our fingers are crossed.
How often does everyone get biopsies? Is it every new occurance?
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That is the first I have ever heard of someone going from TN to ER+
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ap3, very interesting that your wife went from TN to ER+. I recently flipped from ER+ to TN after liver progression and biopsy. Or so we thought. One small lesion (sub-centimeter) on my spine went crazy the following month and we eventually found out it had stayed ER+. Just another example of the unexpected. Good luck to yourwife
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I found a study that says 25% of TNBC can become ER+: https://pubmed.ncbi.nlm.nih.gov/25454687/ (albeit after NCT)
I think it's definitely worth getting any new lesions biopsied if at all possible!
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Hi all! Exciting news out of ASCO we thought you might be interested in:
A New Standard of Care? Enhertu Improves Survival in People With Metastatic HER2-Low Breast Cancer
June 6, 2022
Compared with doctors' choice of chemotherapy, Enhertu (chemical name: fam-trastuzumab-deruxtecan-nxki) improved both progression-free survival and overall survival in people diagnosed with previously treated metastatic HER2-low breast cancer. Read more...0 -
Sorry mods..but i am confused why this is posted here...Her2low is not HER2- 0%..which is what most if not all TNBC are...
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From the article: "About 15% to 20% of breast cancers are HER2-positive. Still, research shows that more than 60% of breast cancers considered HER2-negative have some HER2 proteins on the surface of its cells. There just aren't enough HER2 proteins for the cancer to be considered HER2-positive. Doctors now call these cancers HER2-low."
So, some members here may be treated or think they are HER2-negative but may actually be HER2-low, in which case this study could be beneficial to them.Hope this helsp!
The Mods
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ok..thanks Mods I understand. What about those that their FSH was 0% for HER2?? Could they still be low?
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So I now joined the Stage IV TNBC group officially dx with lung mets. Not much to say because it just stinks!!!!Question, has anyone ever been told their cancer seems slow growing? My MO today stated this due to the fact these lung mets have been slow growing for 6 months now. Largest was 6.1 mm and other two are 4mm maybe doubling in size over 3 months. Going to get some new scans and plan is to go back on Xeloda being she said it works well with metastatic disease. She feels as of right now it's a slow grower and she would like to try this to give me more freedom. Feels like we should refrain from rolling through the list of chemo as of now. So anyone out there who has heard this ?
Thanks!
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Hi. I am not TNBC but I wanted to pop in with some news of which you may or may not be aware. Last night as I was watching the news, the banner below scrolled that a lab grown molecule has been developed that appears to attack and kill hard to treat cancer cells like Triple Negative BC, Pancreatic and Ovarian cancers. I hope we hear more of that!! It could be TNBC answer to HER2+ 's Herceptin. HOPE
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Elderberry thanks for the the ray of hope! Everyone can always use it!
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Just wanted to add a link to a post re the molecule elderberry mentioned. It looks really promising!
https://www.sciencedaily.com/releases/2022/06/220609173629.htm
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Wow, thanks for attaching the article. Very interesting as it even shows potential with glioblastoma's which is a very aggressive cancer. Keeping the faith that one of these days research will break this hard to crack nut open!!
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my platelets ranked really low after gemcitabine + cisplatin day 1 on June 23. No chemo for me tomorrow, cancelled for 2 weeks.
Does anyone have tips to raise the platelet?? I've read that many don't really raise them 😦😟☹ am very worried
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Moth, I was on Gem with Carboplatin recently and ran into the low platelet problem. I had to wait a week and they did come back up after an extra week off. Wishing you the best.
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rosie I'm super happy to hear that yours responded that quickly! I'd heard from some who said it took a long time to get back & that was depressing but yours is excellent! so I'm now I'm really cheering about your story and hoping that is a better interpretation of how things go 😊
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Moth,
A friend of mine with pancreatic cancer had good success in raising his platelets by eating poppy seeds. He discovered this in a fluke when his wife brought back poppy seed pastries from NYC. Solo has canned poppy seed filling if you want to try it.
Best wishes.
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