Triple Negative Stage IV
Comments
-
Thank you Rosieo! Hope you are doing well
0 -
Texas...beautiful ladies! And three cakes I presume??
0 -
Hey Blessedwith6....THANK YOU! No actually just one cake and you know who gets that cake and party
. To celebrate mine and my daughters birthday, I am taking her to New York for a Mother/Daughter get-away. Looking so forward to that!!! We can have our cake there 
.0 -
New York City?? That's one of my top bucket list places! I've wanted to go since I was a little girl watching I Love Lucy. I wanted to do so many things she did....plant tulips, live in Connecticutt, go on a Hollywood bus tour....crazy huh?
Have a marvelous time! I'm sure you will.0 -
Ok, a short update on Mary, my bff. She had a lung biopsy scheduled for today. She cancelled it because she thinks the risks outweigh the benefits and heard that they can diagnose cancer via a sputum test. Now, she's already postponed the biopsy twice and I was pretty straightforward with her and told her it seemed like she was procrastinating on these important appointments. She denied it. So she has an appt with her onc next Friday to schedule chemo and that she will talk to him about the sputum test.
My concern is the progression of her cancers. Her initial dx was ...gosh, I think January. It is now April. And she has had no treatment yet. I know she's very much against conventional tx and says if it weren't for her family, she'd seek alternative methods. And I know she is seeing a holistic dr as well. She's distancing herself from me too, not divulging a lot and changing subjects when I talk tx with her.
I know there have been delays in getting tests and reports in and she's been calling the doctors often for follow ups, etc. At least that's what she tells me. My hands are tied really and I fear she will just get sicker with the passing of time.
Her way of thinking is so different than most of you ladies here on the board. Most of you are eager and can't wait to get tx started, get the cancer out of your body and getting it all done. With her, she's so afraid, so leery, so distrustful of all Drs and txs. And I know she has friends who back her up on this.
Well, it was longer update than I thought! Thanks for letting me vent...0 -
Hello, Ladies! It's been a while since I've posted here but I've been reading. So wonderful to see that pic of your family, Texas.
I'm having scans again on Thursday. Having gone through reductions and delays now with gem/carbo I'm really hoping for the positive news that tumors are still stable or better yet shrinking, shrinking. I feel fine. Sometimes I invent problems like excessive bloating or loss of appetite but then I'm fine so I continue to try to ignore these little moments of doubt. If something's wrong, I'll know it, right? Or, maybe I won't and scans will tell their tale. Either way what worry does is absolutely NOTHING!
I love these forums but I do find it kind of hard to keep track of everyone, where they are on the journey and how they're doing. So, here's an all call for an quick update. I know we'd all love to know how you are doing, who's out there reading regularly, etc.
0 -
Hey Kaayborg...best of luck and prayers for a good scan!!
I am still on CMF and will have my next PET scan on 5/4. TM's are still staying where they should....no SE's to speak of. Current mets are to (3) lungs and 1 node and sternum. If progression from this chemo we will move on to Halavan. I try and get on here daily....but sometimes my weekends are so busy In don't get a chance. Working during the week (4/10's) and living life on the weekends!
0 -
Hey Kaaborg, Good luck with your scans tomorrow! Praying you have good news!
Julie
0 -
Thanks, Julie! I'll get result Tuesday and can't wait!
0 -
Kaayborg...too bad you have to wait until Tuesday for those results. I am very lucky, my ONC always schedules an appointment the next day for my results. In fact one time she was going to be out the next day and she scheduled me for that afternoon following my PET early that morning. The waiting is the hardest part!!!!!! Keep busy this weekend. Should be pretty easy with those 3 beautiful girls.
Julie
0 -
well I'm back. My last ct scan sucked. I have 3 small liver lesion, a spinal lesion at L4 and lymph nodes near my neck. NOT happy. I start on xeloda as soon as all the paperwork goes through.
Better news is that my brain MRI was good.
0 -
Welcome back Lauralind! Sorry about the CT results. Crossing fingers and toes for you with Xeloda! Very good news on your brain MRI! Hang in there! Again....Welcome Back!
Julie
0 -
Weird but I was having trouble accessing this thread. Getting error messages when I tried last night but now back in business. Scans were good. Still shrinking though only by mm's. Brain MRI good too. Feeling like I'm in a steady place and hope to stay with this schedule for a while. Cancer stay dumb! My onc will call with the results sooner but I prefer to see her in person and next day appt. never works. She only sees patients T and Th and does research the rest of the time.
Laralind, sorry about your CT. That sucks but keep tracking on. Xeloda, do your thang! And, I'm so happy to have you as a good brain buddy!
0 -
Hey Kaayborg....shrinking my mm is better than no shrinking at all! I would take that anyday! So good news!!! I have a scan first week in May so will see how I am doing.
Are you still on the Carbo/Gemzar chemo?
Julie
0 -
Yup, still cruisin' with Gem and Carbo, though a little less Gem and we take two week breaks now instead of just the one.
0 -
Kayborg, shrinking is shrinking! Glad to hear good the good news.
I haven't posted here before now, but am adding this thread to my favorites!
0 -
Kaayborg,
So glad you are still doing good! I se only the Gem/Carbo listed in your profile. Is Gem/Carbo your first line?
Purpleminio.....Welcome to our discussion board! Glad to have you
Julie
0 -
It is my first line, I am happy to say, which puts me in a good place to try an immunotherapy next. I was reading last night about how they are finding that platins are particularly effective on non-BRCA, triple negatives. Made me kinda of wish my initial dx's therapy had been carboplatin instead of taxol and a/c. Maybe I wouldn't be stage fourin' it now. But we can only go on what we know at the time and I always have to be grateful we're here in 2016 and not 20 some years ago. I take it CMF is still treating you well?
On another interesting note, I also read a new term...Quadruple Neg. BC or QNBC, which is used if you are also androgen receptor negative. Lucky me! I'm that, too. Just call me Qbert!
Purpleminion, love the avatar! Welcome! When were you dx? What are your mets? Your current tx? If you don't mind answering that is.
0 -
Kaayborg,
You never know: I had carboplatin and taxol first and still went on to develop mets so, you never know.
I was diagnosed 3B June 2015, mets to skin December 2015, lungs March 2016.
I am on an immunotherapy trial now, but don't know if it is doing anything yet. CT scan Wednesday will show what lung nodules are doing over last 4 weeks.
0 -
Hey Kaay....I know what you mean on the Qbert! I wanted to do the PDL-1 trial and found out I don't have the PDL-1 mutation....so I am negative to that. I told my family I wish once I was positive to something other than just BC!! I am not sure about the androgen receptor...I actually asked my ONC to check on that one for me last time I saw her. So maybe that will be positive (haha).
PurpleMinion...I second that on your avatar. Very cute! Which immunotherapy trial are you on?
Julie
0 -
My immunotherapy is a combination anti-PD-L1 antibody and an anti-CTLA-4 antibody.
0 -
Hey everybody
Just curious Texas .. I did not think that they are routinely testing for the PDL receptor
Is everybody on a clinical trial when they are getting immunotherapy ?
These PDL as far as I know are not approved except in a trial
It's so frustration seeing all the immunotherapy approved for melanoma . Lung cancer , bladder etc and not Breast!
I hope soon they find something wih or hopefully without chemo that gets fast tracked and approved
Because even if you qualify , the paperwork and studies take a long time before they can even start the treatment
So frustrating
0 -
Hey Homehelp.....I had mentioned to my ONC that I wanted to do the PDL-1 trial when the current chemo stops working. So she started the process and had me tested for the PDL receptor and I am negative. She did say there is a trial for positive PDL and a trial for negative PDL. As far as I know immunotherapy is only done for Breast Cancer as a clinical trial.
I agree with you.....so frustrating!
0 -
Texas, I am also negative for the PDL1 (and PDL, too I'm guessing) and asked my doctor if that meant immunotherapies would not work and she said that they are still a very promising option for me and she wants me to do one as my 2nd line. I am wondering if it is more a matter of what type of patient a particular trial is looking for.
Homehelp, she also told me last Tuesday that these drugs are very close to market for breast cancer. I didn't ask how close but I inferred from the context of the conversation that if I can truly get a lot more mileage out of this chemo, I might not even have to do a trial. This may be pipe dream wishing but it's always nice to have something to hope for.
Speaking of mileage, however, I flunked chemo today. Whites were too low. Now my schedule will be Day 1 chemo, Days 2-4 Neupogen, Day 8 chemo, Day 9 Neulasta, two weeks recovery, repeat. Hopefully Neupogen can do its thang! There is no predicting anything with this disease. My counts should have been fine based on patterns of the past. Oh, well!
0 -
Hey Kaay....don't fret over the low WBC. Mine did that back in February, they had always been perfect since May 2015...in fact my DH and I were heading to Las Vegas the next week with a group of friends. Not the place to be with low WBC. So my ONC wanted to check prior to our departure and if they were still low she was going to give me a Neulasta shot. But when she checked them prior to our departure they were back where they needed to be and no shot needed. And then again this past Friday....my ANC was 1.1. I believe they won't let you do chemo if it is below 1. So I came close again, but they let me go ahead . But between those dates February to April....my ANC was where it needed to me.
0 -
Kaay....remind me again...where your met/mets.
0 -
The two drugs I am on, in a trial, have been very successful in melanoma and lung cancer so now they are being tested in other cancers, including breast cancer. This is huge because, especially for triple negatives there aren't so many treatment options. I still can't say if it's working for me but here's hoping!
0 -
Holy liver mets here! They measure my two largest which started at about 10 cm each. We're down to 2-4 cm now. I have been on Neulasta since November, maybe. This chemo is hard on your counts. Hopefully the addition of Neupogen will keep me going a good deal longer. Platelets are also getting close again but there is still room to reduce doses, too.
Here's a link to the immunotherapy with Abraxane my onc wants me to try:
0 -
Kaay
My wife is on that trial
Other than fatigue , no major side affects with excellent response
Is that a trial Kaay or does everyone get the pdl1?
Lots of new drugs awaiting approval so be ready to fight do what we need ,as many insurance companies will delay or deny initial requests
0 -
Way to go Kaay!!! That is awesome news! Praying you get to say on your current chemo and they continue to shrink til you are NED!!
Julie
0
