Triple Negative Stage IV

hartrish

hronguist22: sorry to hear about your mom. I have been on the same drugs for 16 months so have not experienced that to offer you. I would think the previous drug would work since she came off of it for a trial and not because she was resistance to the drug.

Prayers and hugs to you and your mom.

Tricia

thrivingmama

Curious if anyone is familiar with any of the CAR T trials going on for TNBC. For example, the CAR T ROR1 study out of Fred Hutch https://clinicaltrials.gov/ct2/show/NCT02706392?term=ror1&rank=1

hartrish

thriving: i watch these trials all the time hoping for great success. I have not had genomic testing yet so don't know what mutations/amplications I have that might match one of the trials. I really would like one that targets several mutations instead of one with addition of immunotherapy and maybe a dendritic vaccine. So a combination of several approaches.

Tricia

thrivingmama

Tricia - makes total sense. Genomic testing to consider: Caris, FoundationOne, Tempus. Guardant360 is a blood test vs. tissue. Omniseq has an Immune Report Card to look at possible options for immunotherapy. The trial I am looking at is PREDICT out of UCSD. They essentially match FDA approved drugs (on or off label) to your tumor's genomic profile

Kcan

just a quick update, mom had another scan in Jan that revealed no change in tumor size, hoping chemo is still working. Her first scan in November noted a reduction in tumour size. Still considering the foundation1 blood biopsy as a next step although I know our oncologist is not a huge supporter of this.

Thriving, the Predict trial sounds great. I will look for something similar in Canada.

Cronguist, sorry to read about your mom, that is such crappy news. I agree with Hartrish, sounds like a good option. Sending you positive vibes.

Katherine

hartrish

some good news. Had my MRI ABD and CT SCAN CHEST today.

From ONC

MRI and CT SCAN results: Once again your scans look wonderful - nothing in lungs, stable small things in liver. I'm so pleased!

Staying on carbo and Gemzar.

Tricia

thrivingmama

hooray Tricia! Great news! If you don't mind me asking, what gemcarbo schedule are you on? Have they kept the dosing constant or changed it over time?

Yay for your good news!!!

Kcan

fantastic news Tricia!! So glad to read This!

Has anyone been sick with a cold that resulted in cancelled chemo? My mom has been sick on and off with a nasty cold for a month. She's been on an antibiotic twice. Her lungs have been clear but it seems to come back. She has missed chemo twice now and of course i worry that this will result in progression. She is in the atezolizumab/taxol trial. Thank you in advance.

Katherine

TNBC74

Yay! That’s awesome news Tricia!

hartrish

thriving: I am on a 3 week cycle. First week carbo/gem, second week gem only, third week is my rest week.

We did decrease the AUC of my carbo dosefrom 4 to 3.5 because of ringing in my ears and numbness in hands and feet. That was about 6 months ago. I usually get between 340 to 370 mg of carbo each treatment and my Gemzar dose is about 1460 to 1470 mg.

WinningSoFar

I am stage IV and have triple negative bc, but it turns out my bone mets (or at least the one biopsied) are strongly E+ and P+. Ive been on Xeloda for about 4 years thinking my bone mets were TNBC, so now the MO is putting me on Femara/Verzenio. I'm hoping for good results.

Someone wanted to know if there are any survivors past 3 years who are stage iv triple negative. In a wonky way perhaps I meet that test since I've been plugging along for over 7 years.

AllyBee

I'm glad you posted this winningsofar, my MO said it is very uncommon for cancers to change from triple negative. My brain met was still triple negative but I'll make sure I insist on biopsies on any future mets after reading that 😊 glad you are doing well

AllyBee

I'm glad you posted this winningsofar, my MO said it is very uncommon for cancers to change from triple negative. My brain met was still triple negative but I'll make sure I insist on biopsies on any future mets after reading that 😊 glad you are doing well

AllyBee

I'm glad you posted this winningsofar, my MO said it is very uncommon for cancers to change from triple negative. My brain met was still triple negative but I'll make sure I insist on biopsies on any future mets after reading that 😊 glad you are doing well

WinningSoFar

Dear Allybee--I don't think my triple negative changed to E+. I think these mets are from my E+ cancer diagnosed in 1999. Or who really knows. I never thought cancer would be such a guessing game.

mike3121

At one time my wife had 3 cancers: A large tumor in her right breast that was ER/PR+, 100% estrogen, grade 1, Inside that, at the core was an ER/PR+, 30%, grade 3 tumor. In 9 of 19 lymph nodes removed was triple negative metaplastic cancer. Now she has good old fashioned triple negative, well I take that back. Halaven (eribulen) wiped out all her extensive spine and hip metasticis. Last 2 PET scans show no cancer. The Halven worked fast, about the third cycle and it was all gone.

hartrish

mike3121: congratulations. Wish we could wipe out this cancer for all

WinningSoFar

Guess I spoke too soon. My Medicare Part D (I think) denied the drug. Or maybe it was Medicare Part B. All I know is that Verzenio was denied. Anyone else have this happen?

klmpk

Medicare paid for my Verzenio last summer when I was on it. I had Tricare as secondary. Maybe it has to do with how your Dr. submits. I'm at Mayo Clinic. Good luck

Karen

thrivingmama

Cross-posted, not sure where the "right" place to put this questions is.

I'm wondering if anyone has experience with PD1/PDL1 drugs with EGFR or MDM2 mutations?

Both EGFR and (particularly) MDM2 mutations are linked to PD1/PDL1 failure and hyper progression. I found an article that has more details: http://clincancerres.aacrjournals.org/content/23/1...

I'm curious if anyone has any experience with immunotherapy and these mutations? thanks!

WinningSoFar

Regarding my Verzenio--it's now approved. Don't know exactly what happened but I suspect my doc resubmitted it. It's so good to have my community (you guys) who will listen to my kevetching.

Parrynd1

Insurance can be frustrating. Right now we are battling them about pain meds. They denied the long acting one my MO prescribed and said they want her to give me morphine pills instead....bc they are now also my doctor? And even then because it’s a controlled substance they won’t let my husband pick it up. We are our best advocates

hartrish

thriving: I have no experience. Sorry

hartrish

FDA approves atezolizumab for PD-L1 positive unresectable locally advanced or metastatic triple-negative breast cancer

https://www.fda.gov/Drugs/InformationOnDrugs/ApprovedDrugs/ucm633065.htm

Ag23

This is great news. Im anxious to learn if the mutations present in my initial diagnosis (myc, tp53) are the only on s present with the mets. would love if pdl1 popped up because it seems like there are more options. anyone have changes from initial diagnosis to mets??

Parrynd1

My first genetic tests didn’t show the PDL1 or 4 mutation for me. Biopsy is scheduled next week to do another molecular profiling to see if anything has changed and we are specifically looking to the PDL’s. I’ll update here if anything changed

Ag23

Thank you all for your support. Surgery to remove the brain lesion was saturday and went very well. Seemed easy compared to mastectomy and diep🤪

For the lung nodule, they are leaning towards a resectioning/surgically removing the lung nodule but is waiting for the foundation one report from the brain tissue. Their concern is that if it doesn't come back pdl1 positive (initial tumor 3 years ago was not) there wont be an effective chemo or immunotherapy options because my initial tumor didn't respond to systemic treatment

dr juric called me tonight

hes leaning towards a resectioning/surgically removing the lung nodule but is waiting for the foundation of ne report. his concern is that if it doesn't come back pdl1 positive like last time, there wont be an effective chemo or immunotherapy options.

hes a bit stumped because the blood biopsy showed next to nothing for a tumor burden- the cancer cells dont seem to be shedding which is odd. he said in most chemo non-responsive tnbc cases it comes back fast (within a year) and all over. mine was almost 3 years out and only appears to be these two spots. thats not something he typically sees

go figure im stumping the team

but he also said perhaps the vaccine tpiv-200 trial i was in - until this progression- is/was slowing progression

his main point was that i really need the pdl1 to come back postitive to have effective systemic options

im nervous its going to come back negative agai

chronquist22

I am just so sad right now....so sad. My mom's latest chemo hasn't been working and they've tried multiple chemo's prior to that. I just lost my father to ALS in December and now today, my mom's oncologist just told us that if this last go at a chemo does't work, she has about three months. He then told us that if the chemo does work, she'll still only have about eight months since the cancer will become resistant to the chemo. MY. HEART. IS. BROKEN!!!!!!!!!!!!!!!!!!!!! Please hug all your loved ones soooo incredibly tight tonight and every single day! Here's to love, peace, healing, and finding a damn cure!!!!!!!!!

hartrish

chronquist2: so sorry to hear about your mom? Has she had genomic testing to look for mutations/amplifications so they might look for targeted therapies

Joslyntriplenegative

is anyone with stage four triple negative taking RSO oil and did it work?