Triple Negative Stage IV
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tina_marie, We don't know if I express it, I had some testing at Dana Farber and they didn't say I had the pd-l1 expression, they only gave part of the testing to my local MO, what they thought would be 'helpful' (it was not listed in the few that were listed) ..I was not pleased with this. I do know of several others with positive response to immunotherapy that were ER+that changed to TN, I'm not the only one.
I'll have to look for that article about response without expression of pd-l1..
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KPW3 - Yes that would be great. What do you think of Dana Farber? I have also traveled to become a patient there as well.. they just wrote out a plan on a yellow legal pad of paper, then handed it to me and said my MO should be doing this. That was it for my second opinion. If things go bad here, i just may ask for another MO down there. I wasn't crazy about this one.
Has anyone else made it past 3 years with TNBC?
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Tina Marie,I think you will find several have made it past the three year mark. Ask same query on thread for calling all TNs. Think there's also a thread called
: You can survive TNBC.
Put it out there too. I think yiu will get some inspirational replies
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The reason I'm asking it here is because I HAVE heard amazing TNBC stories of people that have kicked it. And a lot of people too...
But very few from people that's stage iv AND triple negative. That's my situation and even though i'm doing well.. I hear we have a poor prognosis.
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tina_marie, I sent you a private message...
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My wife is NED now after 2 PET scans 3 months apart. Her oncologists is giving her a 3 month break from her Halaven (eribulin). Sounds good but the Dr. felt that the cancer will come right back as that was the nature of TNBC. Is this what usually happens or was he being pessamistic?
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Mike3121... that's wonderful about your wife being NED... i'm on taxol now.... i think Halaven is in the list of "what's next" when the cancer outsmarts the taxol... it sounds like people are being successful with it.
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Dear friends,
although I am a member of the list I do not post often. My wife has just exhausted all hormonals and is starting weekly taxol (3 weeks on 1 off) next week. I was wondering if there are any long runs on Taxol.
So far we have been fortunate enough as hormonals kept her NED or stable for 7 and a half years.
Many thanks for yopur consideration.
Grigoris from Greece.
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GIRGORIS:
I exhausted all hormonal as well, my cancer changed pretty quickly Oct17-Feb18... it changed to TN... They tried 2 different oral chemo's and they didn't work on my liver lesions, but stopped the bone mets... In Oct18 I started 3 rounds of AC, then I just had my 8th taxol... i had 1 week off in there... but i am weekly with taxol.
After 3 rounds of AC my tumor markers stopped growing after 10 months and stayed stable.. Then after 3 rounds of taxol.. my tumor markers went from 1288 to 588! CUT MORE THEN HALF...
I'm due for my next scans in Feb... praying things are still REGRESSING!
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Tina_marie many thanks for your reply. My wife has also tried oral navelbine and xeloda in the past with no result. When she was diagnosed back in Aug 2011 she was on Taxol for 6 months with great result. Liver tumor burden was reduced by 80%. So we go back to Taxol again hoping for the best.
Our wishes for more regression back to you!
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Today, the day by when the FDA decision on IMMU-132 which has shown great promise in TNBC treatment was expected, they did make the decision: to deny apparently due to QA controls.
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It's very disappointing!
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very diappointing to hear about IMMU 132. Hope they get it worked out soon.
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This is some great news I just got for this Stage IV, TNBC patient... Ten months I went with my tumor markers growing from 107 in Feb to 1400 in October 2018... THEN.....
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Tina Marie: great news
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mike3121 - Great news about NED and a chemo break! I am so shocked that her oncologist would say that, especially if he's the one giving the break from treatment. Seems counter to the treatment plan. I am also on a chemo break. NED by scan April, July, and October, so I've been on break since the October scan. Tomorrow I go for a liver MRI, which is my first scan since taking a chemo break. Certainly hoping and praying that I still show NED! I hope your wife can enjoy the break from treatment and let her body recover a bit.
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Phenomenal news! Woohoo!!!!
What tests do your MO’s use? Mine is CA-153 and that’s it
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ParryND1: the CA-27.29
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Has anyone had their tumor markers go up on a treatment, but scans show positive results? One month into a new medicine and my CA-153 went up, but I’m not very familiar with how reliable this test is or where my numbers (was 37 now 39) compare.
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Parrynd1 - my oncologist also uses 15-3, though it doesn't seem to be too reliable for me. Mine has always been low (within normal) and jumped around. Whenever I have asked about the jumps, my doctor's office says that a change of a few points doesn't mean anything and to expect it to be a little different each time we test.
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Thanks, that makes me feel a bit better. We haven’t found a good treatment yet and I’m so hoping this one is working
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tina_marie, I'm sorry for the late reply! My mother was diagnosed in 2016 February (at age 57) with stage 4 tnbc grade 3 de novo with tiny lung mets all over both her lungs. Her first chemo FECx6 took her to NED for about 9 months. They came back on the lungs again in April 2017. She started 12 months taxol/Carbo, which took her to NED again in 2018 April (confirmed with a pet-ct).
She is now using oral endoxan (Cyclophosphamide) 30mg daily as maintenance therapy. She just had her second pet-ct yesterday and we got the NED news again today. It will be 3 years since her first diagnosis next February. Except from a little fatigue, her quality of life is pretty good (except for the dreaded scan weeks of course) and still working full time.(She is BRCA negative, although her mother died of BC at a very early age so there may be some sort of genetic factor here that we don't know of?)
There is a lot of research going on for tnbc right now. Not just with new drugs and immunotherapy but with existing drugs and the way we use them. Dose reductions, changing drug combinations etc. Just need to find the right dose with the right drug, and it is very possible to live much more than 3 years. Many ladies on this board gave us lots of hope during our difficult times.
Parrynd1, none of my mother's tumor marker tests have ever been reliable. They were always in normal range even when she had visible mets. The only time they jumped a little high was right after a small surgery she had.
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parrynd1: my MO says that TMs can vary a little from one test to the next. My CA 27.29 variesfrom 41 to 58 and my scans show stable disease. My TMs have been very accurate with my disease course so far. I know in other people their TMs have not been relaiable. I would think your 2 point increase is just a variation in lab testing. Keep us posted.
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parrynd1: Based on tracking the CEA, CA 27.29, CA 15-3 for over a year every 3 weeks or so here’s the observations as pertain to me (ie May not apply to others)
1. What’s “normal” for one person may not be for another. While the published values - representing in general 95% of healthy individuals - are a good reference point, we should rely on our baseline as what is normal. For example, someone’s normal may be 2. So it going to 10 is worse than someone’s whose normal is 30 to begin with
2. The CA 27.29 is more sensitive (moves up and down more) than the CA 15.3. The CEA is the least sensitive. So I prefer the CA 27.29 (along with LDH to track)
3. A new treatment may cause an increase in CA numbers but if it’s shrinkikg tumors it goes down after a couple of cycles. I haven’t been able to find a paper explaining the reason - and the oncologists seem to care less and are hardly curious as to why that is - but I think it could be due to the attack on tumor cells that causes them to shed more MUC proteins (the one that CA 27.29 and CA 15-3 tests pick up - they attach to different sites on the same protein)
4. I think that the CA 27.29 levels don’t correlate with tumor size per se, but tumor activity. So technically one can have a large tumor in a senescent state or a small tumor in a highly proliferative state and the latter would show greater CA 27.29. (Note: this is just my theory and I haven’t been able to find a paper to actually explain rises and falls.)
5. Small variation of tumor markers and indeed most enzymatic tests can be due to lab variations (how the blood is; reagents used etc) as well as natural non-cancer variations. The overall tend is more indicative.
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TNBC thank you that was well put together and I appreciate your insight!!! It does make me feel less freaked out
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QUESTION:
Can anybody tell me, or direct me to the top research out there for Triple Negative Breast Cancer? What's coming down soon?I have a google alert that i get everyday, but I'm struggling to put it all together... and sometimes understand what i'm reading. I think in spreadsheets (accounting background) and I want to start organizing what is out there.
This is important to me, as i am sure it is to all of you, as I keep being told that my MO goal is to keep me going as long as possible to then take advantage of new treatments as they become avail. I am going to be 2 years this summer, I'm doing well and my cancer is somewhat regressing.
I would love to hear any of your thoughts on this, thank you!
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Tina Marie
Here are three sites I bookmark to find out new clinical trial results.
Cancernetwork
https://www.cancernetwork.com/search/solr/Triple%20negative
Artemis newsletter from John Hopkins: they have a monthly newsletter. You can go back and see the archive newsletter from each month. They post about all breast cancers so you have to pick the ones related to tnbc.
http://www.hopkinsbreastcenter.org/artemis/
TNBC Foundation: this is the page where they give an overview of the major conferences and what was said about tnbc.
https://tnbcfoundation.org/research/medical-conference-updates
Let me know if you find any other sites. I keep up with them as well.
I know PARPs are showing promise as well as IMMU 132 and Abraxane with Tecentriq
Tricia
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For AR+ TNBC they are using Xtandi, which is a prostate cancer drug.
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I haven’t posted in a really long time but we just came from my mother’s scan results appointment and the chemo isn’t working. New spots have appeared on her lungs and liver and some preexisting spots have grown. They are going to go back to the first ever chemo she had, which shrunk the tumors, Lipodox. Have any of you had a chemo that’s worked then taken off it to start a trial and then went back on it and had the same results?
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Breast cancer cells shifted into HER2 positive status with bold new strategy
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