Triple Negative Stage IV
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Hello everyone. I'm posting this on moth's recent forums.
Moth announced on Twitter that she posted a detailed update on her Tumblr blog (in her signature). Unlike IG, you don't need an account to read it. Essentially, she's still hoping the treatment will work, but her liver is a big problem.
https://www.tumblr.com/blog/view/nevertellmetheodds2017/690346753584676864?source=share
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I am sorry to let you all know that Moth (Margret) passed away on Friday Aug 12th.
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I am so heartbroken to hear about Moth.
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Hello: I am new to the site. I was diagnosed with MTNBC in December 2021. I've been doing a clinical trial of chemo (gemcitabine and carboplatin) along with immunotherapy (pembrolizumab). My neutrophils didn't recover a couple of cycles ago, so they had to stop the chemo and I'm just doing the pembro alone. I have a CT scan on 10/11; my doctor is fairly certain we'll see progression—I have mets on my lungs.
Her recommendation is the new HER-2 low drug that's just out, Enhertu. Anyone out there on this who can tell me how it is? Lose your hair? Crash on day 3?
Anything you can share is welcome.
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Mk...sorry that you might have progression I am confused...Enhertu is for Low HER2 you are triple neg...did you have a FSH test showing you are low her2? If so what was the %???
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My initial tumor was negative for HER2, but they tested a sample that they took in June and it was +1 for HER2. So yeah! I can get it.
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MK...so when you got diagnosed stage 4 were you Triple Neg? Or were you ER+ HER2- then flipped to Tripl Neg and now had 1+ HER2 ??
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Hi all,
Just wanted to jump onto the forum here to say hi. I was originally diagnosed with ER/PR+/Her2- stage III breast cancer in 2017 and it came back in May with liver mets and flipped to TNBC. I do fall into the Her2-low* category so at least I've got that to hold onto. It took a full three months from initial diagnosis to treatment starting and during that time I also had bone mets pop up. I'm currently enrolled in a clinical trial and getting gem/carbo and first scans are in a month so crossing all my fingers and toes it's doing its thing!
*nicole, to answer your question Her2 low is a totally new category and my oncologist told me that just about everybody falls into it, if their pathologist is willing to look hard enough for those Her2 cells (enzymes?). A lot of people who were diagnosed as Her2- a few years ago and have had subsequent biopsies are now falling into Her2 low. Her2 low means your Her2 numbers come back at 1 or 2, which isn't high enough to be considered positive (that's a score of 3) but it's not a completely negative number. In the past a Her2 score of 1 or 2 would have been considered negative. My understanding is we are still considered TNBC because we aren't positive for Her2 (and therefore can't get all of those wonderful Her2+ drugs) but we do have the additional option of Enhertu and maybe some other stuff down the road.
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Hi skichick86, Sending you positive vibes that gem/carbo will be good to you! Best wishes.
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Hi @cookie54 - thank you! Side effects have been surprisingly minimal with gem/carbo but I have a lot of ribcage pain and tumor markers are up so these may not be the drugs for me unfortunately
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Hello!
I wanted to let anyone interested know that RC Horowitz is looking for Stage IV triple negative participants for a paid survey. I have done surveys with this company since 2020, and I have a great relationship with them. I will place the information below.
They are seeking participants for a 60-minute survey who are on their first or second line who are triple negative. If you're interested, please private message me. This is for those in the United States and who have been diagnosed Stage IV within the last three years. It. pays $175.
Thank you for considering. I will be posting another one tomorrow if you don't fit this criteria.
Kris0 -
Here is the second post I talked about yesterday.
RC Horowitz is looking for Stage IV triple negative participants for a paid survey. Just to reiterate, I have done surveys with this company since 2020, and I have a great relationship with them. I will place the information below. I do not work for them.
This is for those in the United States, diagnosed within the last three years. It will consist of journaling from 1/11 through 1/24 of 2023, and it is a total of a four-hour commitment over those two weeks. It will pay $350.
Please private message me, and I will let you know contact details.
Thank you for considering.
Kris
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Hey all, This research company has an quick online survey for TNBC Stag IV if your interested:https://www.research.net/r/pillarbreastcancer. I don't have any additional info about this company as this was the first survey I completed with them. Figured I would share , take care.
Andrea
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Hi everyone, I am newly DX with bone Mets and always TNBC. I was low before but now expressing zero so further limiting my treatment options. I will be starting keytruda soon with radiation and xeloda. Anyone here doing xeloda every six weeks at a higher dosage versus every three weeks? My doctor gave me the option, but from what I read,side effects are higher at the higher dose. I think I will stick with every three weeks for now. I did OK with it the first time around. Unfortunately my port was taken out recently so I have to get it via the IV. Thanks, everyone.
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Ugh I'm sorry mamacure about the bone mets, just stinks! When I was stage 3 I took xeloda 14 days on 7 off, now at stage 4 I'm 7 on 7 off plus every third week Keytruda. Agree the higher doses can definitely be tough. Was there a study that proved Xeloda worked well high dose every six weeks?
I hope whichever way you wind up taking it that it is good to you. Best of luck to you.
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oh sorry meant every 6 weeks of keytruda. For xeloda I was on 14/7 before but I like the idea of 7/7. I will ask my doc. Thanks.
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Hi just joining here. Newly diagnosed de novo stage 4, tnbc - caught on a pet scan in my bone marrow cavities. Not sure where to start or what to do. I'm 29 and just had my son about 8 months ago. Working on being hopeful and trying to figure this out. I am set to start chemo (taxol / carbo + keytruda) this upcoming wednesday.
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mpan... welcome to the group no one wants to be in... but we are glad you are here with us. I use to be hormone positive breast cancer now TNBC I flipped to TNBC about a year and half ago. I am so sorry to hear of your de novo diagnosis. Give yourself a break and know that its a LOT of info and weight to carry when you first find out so its ok to be upset, cry, angry etc...and feel free to vent here. Sounds like your getting a good combo did they tell you if you are PDL1 positive? If not, ask your oncologist bc PDL1 respond best to Keytruda. It sounds like you do not have any mets in bones or organs yet is that correct?
Are you on facebook? If so do a search for Stage 4 Triple Negative Breast Cancer great group and lots of info.
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Hi mpan211 Glad you found this page also, I saw you and I commented on the other. Just popping on here to say good luck on Wednesday. This is a crazy roller coaster ride for sure. You will feel a little better when things settle and you are in a routine with treatment. Always remain hopeful there are always new drugs in the pipeline.
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Thanks Cookie. I saw that too. I appreciate the warm welcomes. It's a bit of an out of body experience, I'm having a hard time relating to friends lately because I feel as though our problems are so different. It's not their fault and I guess not mine either but it doesn't feel that way haha.
hi Nicole - yes !! I did join the facebook group and have connected with a few people that have been really helpful. I'm still trying to shake out all of the treatment options but am set for chemo to start on Wednesday. I'm getting a second opinion from another hospital tomorrow but otherwise am looking down the pipe at 12 round of carbo / taxol with keytruda. My case is also going to the tumor board tomorrow at that hospital. Never felt like the belle of the ball more haha.
ps sorry for all the random info, lately it just bubbles out. I hope you all have a wonderful sunday.
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Hello ladies!
I am a brand new TN! I was dx stage IV de novo in august 2015. I have been on tamoxifen and then ibrance letrozole. I now have TNBC. It has spread to my abdominal wall and is affecting my kidney function. I am terrified! I read the pathology report this morning. I haven’t spoken to oncologist yet.
I guess I’m looking for a little bit of encouragement on this thread. I have eight years under my belt and am hoping for a few more. I am 54 years old.
many of you have been on TN tx for years! What might I expect my next tx to be? How is it living on tx?
my thoughts and prayers are with all of us!!0 -
@chelleg Sorry to hear you are having progression and now mtnbc. Glad to hear you have been going strong since 2015!
It's so hard to project what your next tx will be. What I can tell you from when I was diagnosed Stage 1 til now there has been manty new tx's added for TN. Some of the common TN tx's are ACT, Gemzar, Carbo, Keytruda, Trodelvy , Xeloda to name a few. You know they all come with their lovely side effects lol. Some more tolerable than others. Many of these drugs have the ability to control progression depending on the situation. You just never know, it may hold you steady for quite a bit. Fingers crossed…..
No two cancers are alike and no two MTNBC's are alike. We all just take it day by day, treatment by treatment and hope for the best. I'm sure your MO will be ready to go with your next treatment to start squashing this progression.
We're here for ya, sending positive vibes and hugs.
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Sorry to hear you flipped..I did too… I didn't get any of the years like you have when I was ER+…. unfortunately once I became TNBC my cancer got very aggressive….different from when it was ER+… I wish you all the best.
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Thank you for all the information! I have high hopes that chemotherapy will stabilize and possibly shrink the cancer. I will be doing taxatore and Gemzar.
cookie54, I think that we are the same age. Born in 1969.I feel like I just reached the age that is fun! Less stressful. Then this! The worst part about all of this,is the affect it has on my family. I feel guilty for breaking their hearts. I have three daughters and a wonderful husband. They are all distraught about this progression. I wish I could comfort them and say that I will be fine. But I can’t.
Sending love and positive vibes all around
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Hey Just checking in to see how my Stage IV MTNBC 's are doing?? This thread has been so quit.
@chelleg How is your treatment going? Hope your kicking butt! I was 57 in January so your the baby lol.
I'm doing ok Xeloda still keeping me stable for a year now. Just had SBRT to lung met.
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Hi All,
Chiming in here ….
Gilead Sciences, Inc. is developing a new patient education initiative and is seeking individuals who are currently being treated with TRODELVY, and may be interested in sharing their experiences with other individuals.
Here is their desired criteria:
- Diagnosed with metastatic triple-negative breast cancer or HR+/HER2- metastatic breast cancer
- You are currently taking TRODELVY
- Your interested in sharing your story about living with metastatic triple-negative breast cancer or HR+/HER2- mBC and experience taking TRODELVY
- You speak English or are multilingual
If you fit the criteria, you can call Gilead or email them using the below information.
Thanks, on their behalf!
Call: 888-237-9758
Email: Elizabeth@mypatientstory.com
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Hey Just popping in again to see if there are any MTNBC friends out there?? If so how are you doing? I'm still holding stable on Keytruda and Xeloda, fingers crossed.
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Hi all,
I am mTNBC and just started Xeloda. I am also HER2 low as well. My Xeloda dose is 3000 7 days on 7 days off. I was on Enhurtu and it was working but 8 months in I developed pnuemenitis so I can no longer be on any chemo drug with lung side effects. Enhurtu was difficult to be on, side effects were exhaution for several days and some nausea. I did not lose my hair though and it actually started to grow back some! Before Enhurtu, I was on Trodelvy which shrunk my tumors enough to have surgery. I have many bone mets mostly in my spine.
Glad I found this group!
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We're glad you found this forum too, @edtmjones! We also have free weekly Zoom meet-ups if you'd be interested in trying them out. We have the days/times and registration information available here:
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@edtmjones I'm sorry you find yourself here but glad to see a fellow MTNBC thriving. Sorry you had some bumps in the road with Enhertu and Trodelvy. I hope Xeloda holds you stable for a long time and the side effects are minimal. I have been on Xeloda 7/7 with Keytruda every third week for almost 2 years. Just this week I had a CT and there may now be a bone met which is new for me. Scheduling a PET to confirm the lesion on my spine.
Many women have had a long run with Xeloda and I hope you do also. Stay in touch.
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