How are people with liver mets doing?
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Yes, they did, but they only indicated that it was approved for trip negative, I think -- I wrote to the mods and said they should check bc of the TMB High and micro satellite approvals for all solid cancers (which would include breast cancer.)
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Stillhaveho....I think you might be misunderstanding..(as I also did about Keytruda)...you cannot get it unless you have mutations that warrant it...you are Triple negative...or have failed many..like 5 or more treatments and you have a Trip Neg mutation that would warrant you getting it. Or at least thats what I have been told.
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For Keytruda there are two indications for non TNBC tumors
It's in the FDA document pp 1-2 https://www.accessdata.fda.gov/drugsatfda_docs/lab...
They both require you to have essentially exhausted other treatments.
high tumor mutational burden
"Tumor Mutational Burden-High (TMB-H) Cancer • for the treatment of adult and pediatric patients with unresectable or metastatic tumor mutational burden-high (TMB-H) [≥10 mutations/megabase (mut/Mb)] solid tumors, as determined by an FDA-approved test, that have progressed following prior treatment and who have no satisfactory alternative treatment options."
microsatellite instability
"Microsatellite Instability-High or Mismatch Repair Deficient Cancer • for the treatment of adult and pediatric patients with unresectable or metastatic, microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR) o solid tumors that have progressed following prior treatment and who have no satisfactory alternative treatment options"
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Thank you Moth..that is the correct way of wording what my MO said
lolLadies... I made a thread https://community.breastcancer.org/forum/8/topics/878401?page=1#post_5619556
and I was hoping you all might give me some input...thanks...
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Moth,
I've discussed this with my MO, and she said that they can give me keytruda under the FDA approval. I am NOT TNBC, but I do have tumor mutational burden high. I am only on second line -- first line was letrozole alone from 2006-2019 (I assume they count this as first line) and now I'm on Ibrance/faslodex (so that would be my second line). The molecular tumor board at my institution has also put this into my bucket for future treatments -- they suggested piqray next (I have a PiK3CA mutation) and then keytruda (based upon my tumor mutation burden high status) and then neratinib/nerlynx (I have 2 ERBB2 mutations).
I guess the "no satisfactory treatment options" determination is in the eye of the beholder? But my institution seems to feel that it would be okay for me. Maybe that's a bold move, I don't know, but there you have it. And maybe different institutions are viewing this differently, just as some MOs would use some drug combos that may be off label or a little bit unconventional. I don't know.
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BevJen
My grade 1 highly er/pr+ “lazy” cancer as my Mo put it, came back triple negative after almost 6 years. I currently have stable Malignant ascites and stable pleural effusion in right lung. I currently don’t have solid tumors to biopsy but they tested the fluid. I’m on abraxane and trcentriq. I asked my Mo if I could switch to Keytruda and she said it wasn’t approved and it was only first line use. So that’s what was confusing to me. I thought I would be able to use Keytruda if present line fails
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Still...how did they know you are triple negative now if you said you don't have a tumor that can be biopsied?
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I had both ascites and pleural cavity drained initially, they tested the cancer cells in both and said they were triple negative, my last scan showed I still have some malignant ascites but no malignant pleural effusion. I also had nodules too small to test in omentum but those are gone. My Mo is going off those tests to say I am triple negative. In my tag line I can't find away to get rid of the first line of initial dia where it says"metastasized". I have looked and can't find anyone with similar diagnosis, so I asked you guys because you seem the most knowledgeable and up to date on these things. I hope no one minds
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Still,
I think the bigger issue is if atezo fails, then it may not be feasible to use keytruda. Maybe that's what she means by "first line." I know that the immunotherapies each operate a little bit differently, but I would suppose that it's not the type of therapy that you could keep trying different lines of immunotherapy to see if another would work. Just my reasoning?
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sTill....are you stage 4? Do you have mets in bone or organ?
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yes I am stage IV no organ or bone involved just nodules on omentum that were too small to biopsy an that are currently gone at last scan. Still have malignant ascites (ascites with cancer cells circulating )
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Still...i am confused if the nodules were too small to biopsy how can they say you have Stage 4 cancer?
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Nicole
I guess because they could see on scans the nodules and the uptake of contrast plus the malignant ascites and malignant pleural effusion. I don't think you need a biopsy to know that your stage IV. My Dr is at Loyola and is well known in Chicago I guess I could ask her how she knows I'm stage IV? I'm pretty sure I wouldn't be on this Chemo if I wasn't at least I hope not! I see that this is not a normal case believe me I was shocked at the diagnosis but I trust my MO
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Now I have lots of questions for Mo. I’m wondering why just fluid was tested, could they take a sample of omentum see if there were cancer cells? I’m very confused and so tired of this crappy disease
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Still,
If the mets in your omentum were very small, it's possible that they couldn't have gotten a sample -- I recently had a biopsy of a lesion on my liver, but the doc told me -- I will biopsy IF I can see it with imaging, and I'm not sure that I can. That was a 1.2 cm lesion. I think with pleural effusions, they can just test the fluid, but your could nose around on the lung mets threads and see what you can find.
And yes, we're all tired of this crappy disease. All in the club we don't want to be in, unfortunately.
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Thinking of you, Bev, as you go back for the ablation on Friday. May it be as smooth and easy as possible.
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Thanks, SP. I'll update all of you.
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Yes, BevJen, in your pocket for "take two". They need to get it right this time.
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good luck tomorrow Bev!
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Dee, I’m with you and your onc. Go for the neuroendocrine if you can.
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bevgen
May your procedure go well, be effective and no side effects.
Dee
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BevJen
Thank you for taking your time to explain some things! You have no idea how much it means to me! Most the time I feel so frustrated and alone in this stupid thing! I hope your procedure tomorrow goes smoothly and your recovery goes well too
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Has anyone had gum grafts (for gum recession) while on chemo? And if so, I need advice on what to expect with healing with low wbcs and platelets.
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In your pocket Bev! Its all gonna be good.
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Pocket duty today for BevJen.
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Just a quick check in, folks -- my re-ablation seems to have gone smoothly this morning. I was in the procedure room for only about 45 minutes, and then in recovery for a bit over 2 hours. All seemed to go well. I've been sleeping most of the day from the sedation, but otherwise not in any pain. Have a repeat MRI to look at the ablation site in 4 weeks. But feeling okay!
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yay, thanks for checking in Bev!
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Thanks for letting us know BevJen, get some good rest and heal up.
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BevGen
Great news! Also good you get quick feedback - just 4 weeks. Y-90 is longer 8 weeks.
Dee
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Yay, Bev! I was hoping for your note.
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