Calling all TNs
Comments
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I had another 6 month checkup with my MO today. I asked her about pCR for the newbies. She said, only 40% of TN patients on ACT get a pCR. There has been a small clinical trial that adds a 4th drug that would bring the pCR rate up to 80%, but we all know it takes a long time for a drug to go through trials to actual use. In my case, they did surgery first because she wasn’t sure my immune system was going to make it through chemo. My immune system couldn’t hack the platinum drugs, so it was ACT and neupogen/neulasta for me.
My half mammogram was done on a new machine that does 2D and 3D at the same time. Goes a lot faster.
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Hello LoveMyVizsla,
I have just read your post with interest as I like to keep up to date with everything. I was interested in what your oncologist said about pCR at 40% with ACT and the addition of a fourth drug bringing it up to 80%.Do you know the name of the drug.I would be concerned about another drug going into the body as three drugs are already a lot to deal with and make some patients very ill.
I shall be thirteen years since diagnosis in June this year. I have had no problems except lymphoedema this year.
Sending you best wishes,
Sylvia. x
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I didn’t ask the name of the 4th drug, Sylvia. ,
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Hi, Jane IDC, TNC dx July 2015, age 55 then. Had the usual chemo, every two weeks for 16 weeks. Finished 11/30/15. Had partial mastectomy 12/28/15. Started radiation on 1/19/16 and finished that 3/6/16. Had the usual follow-ups, all clear. Then in December 2017 I noticed a hard, painful lump where my tumor had been removed in 2015. I called the surgeon, they scheduled the diagnostic mammogram and ultrasound. Radiologist reports that they were clear!! I was elated and didn't give it a second thought until my surgeon was doing her usual exam and that spot was very sensitive to touch, she decided to do a needle biopsy just to put our minds at ease. Said it was probably scar tissue. Two days later she calls me and said their were abnormal cells and we should do an excisional biopsy. This was scheduled for the following Friday, she told my family all looked good. Then the phone call comes, IDC was found growing inside the scar tissue and we didn't have the final path as to whether it was HER2 or TNC. So, after the discussion we decided the next course of action was the bilateral mastectomy which is to be scheduled soon, and I plan on reconstruction with tissue expanders. Today, finally, I rec'd the news that it was once again TNC. I have to wait for the oncologist to call me next week as to the next step. I am sure it will be the dreaded chemo. I am wondering what some of you have done. I have thought about a clinical trial, however, I don't want to be the patient that gets the placebo. What have you done?
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HI Jane, no advice but hugs at finding yourself here again & GOOD for you that you checked & followed up on this.
I thought even if you were in a clinical trial you would get whatever the baseline 'normal' treatment is and then be randomized to get either additional tx or none. In that case you're not really worse off if you're in the placebo - you're getting what you would normally get. And honestly one never knows with the treatment group whether they're getting a real benefit or not, or maybe there is a benefit but it comes with some drawback that they discover later.... They can't tell until the study finishes and they do all the analysis, right? So it's not always a positive to be in the tx group. But research is the only way for us to learn about cancer and develop new treatments so if you're offered a trial that you can feel happy with, then go for it.0 -
Foslerja, I'm sorry that you have such a cascade of news getting worse as it went along. I agree with moth. during a clinical trial you would be getting, at the very least, the current state of art treatment. Being in the placebo group would not mean you're getting nothing. I'm currently in the Tapimmune trial and what I've found is that you get very detailed, individualized, attention. At my site, Dubin in NYC, we get a lot of individualized attention, anyway, but there is even more follow up with a trial.
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Hi ladies! Is anyone here weakly positive? When I was diagnosed I was told my tumor was basal like and 4%er+ and pr and her2 negative. My Dr said that my tumor was pretty much triple negative. I am getting ready to start rads Monday and today my dr mentioned that he was going to keep me on zoladex and add armidex when rads were done. I was on zoladex throughout chemo to protect my ovaries from damage so that I can have kids later.
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hi everyone, came from the surgeon oncologist today and was told a few things that worry me.
Was anyone here stage 3 that did neo adjuvant and was told it was protocol to have more chemo after surgery because of TNBC? i just want to know. i thought i was headed for rads after surgery but was gently told that there is a higher likelihood i go back chemo after surgery.
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Hi mkn86, I'm stage 2b I'm starting Xeloda on Monday. I had AC and then Taxol before surgery. My surgeon got clear margins and my nodes were clean. However when my pathology report came back I still had a tiny piece of tumor left that tested positive. I was so disappointed when my oncologist told me he wanted me to start Xeloda cause I thought I was heading to rads as well. He also told me that he wanted me to take it to reduce my chances of a recurrence. So now I'll be doing Xeloda and then rads. What kind of chemo are they putting you on?
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Hi, mkn86 - like kmajor I did neoadjuvant AC+T. I haven't had my surgery yet, but the plan is to do surgery, rads, then Xeloda. My oncologist really wants to get rid of all the scattered TNBC cells that might be in my body and thinks Xeloda will wipe them out.
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Hi mkn86...like these other ladies, I also had neoadjuvant AC+T, then BMX, then rads. I am now on the Xeloda chemo because I had a good - but not complete - response to the chemo. The Xeloda provides some extra assurance against recurrence with TNBC. I'm only two weeks in on the Xeloda, but so far it hasn't been bad.
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Reading the posts regarding additional chemo after starting with chemo. I have 6 rounds of chemo. Just finished round 2 today. I am to have a PET after round 4 and if all is good, Surgery is the next step.
After reading the posts I have more questions I will ask at my next appointment. Thank you all for sharing.
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Has anyone been treated at MD Anderson hospital in Houston or have recommendations of an MO associated with them? I am looking for a second opinion.
Also looking for recs for an MO associated with a teaching hospital in California.
In particular I would like to get into an immunology trial. My current MO is also resistant to giving me Xeloda which worries me since I had no response to chemo.
I appreciate your help and advice.
Rebeka
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SoniaL, I basically had a complete response (Thank God.) They found less than a mm left and it was too small to even test for anything. My drs were all thrilled and are treating it like a cpr. My dr did not suggest xeloda as she thinks it won't really help in my situation. I was wondering about your situation as you said you had a very good response and your doc still thinks it's a good idea to do it. Also, it's positive to hear that you have't found it too difficult so far. I should add that I didn't have any node involvement and they aren't recommending radiation either because I had a BMX. The radiologist said it would do more harm than good. I'm waiting to see if I can be part of a clinical trial and hoping that I can be. If I don't have the marker in my blood, then I can do xeloda although not recommended by doctors, and then I'm done with treatment, which scares the bananas out of me. Thanks for any input!
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Hello again! I think I've caught up on the recent posts. I did AC (ok response) then Taxol plus carboplatin. There are some studies showing really high pcr but verdict still out on long term positive impact. Obviously in general pcr yields more positive prognosis. I had to stop after 9 weeks due to 3 transfusions and other significant side effects. I ended up with very good response but still tiny amount of cell left. If I made it 12 weeks probably would have been pcr. I'm starting radiation Monday. After that's done we'll talk about a clinical trial as insurance. My MO does not recommend more chemo at this point. Even tho there is standard of care, there are a lot of variations in complete treatment due to specific situations, I think. At first I was worried about no xeloda but having good response and dealing with ongoing joint pain & neuropathy from treatment, I'm kind of relieved now.
Rebeka, I'm glad you're getting a second opinion. We're looking for somebody at MD Anderson to discuss their trials. Will let you know if I get a name.
Best to all of you!!
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Flynn- thank you! I hope younfind something. I went on their website and just filled out a form asking for a call back. I don’t know how else to proceed. It sounds like you are in a good place. Best Wishes.
Rebekah
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A4ggy...that's great news on the cpr! I'm glad to hear you will not have to do radiation. I cannot recall how much of my tumor was left after chemo, but it was just a tiny amount, seems like the surgeon said 2 or 3 mm. I did have lymph node involvement (one axillary node which was removed, and one internal mammary node that was suspected cancer - they cannot test or remove internal nodes due to proximity to heart) and that was the reason for my radiation.
My MO first suggested a trial of Keytruda immunotherapy but I was not selected so the Xeloda was her next suggestion. It is based on the CREATE-X trial that was done in Japan which showed much improved disease-free survival rates for triple-negative patients who had residual cancer after chemo. I was resistant to the Xeloda at first, but reading the study convinced me to take it. Even though the chemo significantly shrunk my tumor, it was not considered cpr so I wanted the additional push to help prevent recurrence.
Are you having any reconstruction surgery? I have expanders now and hope to have them exchanged for implants late summer, after I finish the Xeloda. I can see the finish line in the distance! It will be weird to be "done", but so looking forward to that day! I'm happy to answer any questions you might have - wishing you all the best!
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rdeesides-I don't have any experience with MD Anderson, but I have been getting a lot of my care at Stanford University Womens Cancer Center. My MO is there, and I had my surgery there and would recommend them to anyone who is interested. I just wish I lived closer.
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Sammi2006 - May I ask who your MO is? You can PM me is you dont want to say on the board. Where do you live? I was in SF for 13 years but moved to San Diego just before being diagnosed. Wish I was still up there... so many more options.
Rebekah
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SoniaL-thank you so much for your response. I had immediate reconstruction a month ago and am healing well. Waiting to hear about the clinical trial and then will decide if I do xeloda. Glad to hear the end is near for you. It’s such a strange feeling. As I sit here, I wonder “is it really gone?” They said it was but what if’s are scary thoughts!
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Hello
I had a consult for a second opinion at MD Anderson. They agreed that my protocol here in NC was what they would do. Additionally, after viewing my after surgery results( I had AC, T and Carboplatin prior to surgery) they agreed, NO Xeloda, just the rads. They and my Dr's felt it would not add any additional assurances against recurrence.
Both my MO and MD Anderson said that the additional toxic chemicals and side effects, would outweigh a low percentage of assurance. It was a personal decision for me (based on my research and the professional advice) to not have additional chemo. Now 2 1/2 years out from dx, I still am comfortable with my decision. I did have what is considered a PCR.
I feel that is the key, to be sure of your decisions about treatment.
Val
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Hello everyone, sorry that I have been away for a long time. Life goes on and is very busy. I have always wanting to come back and encourage others.
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I was told by my MO that having had carboplatin in my neoadjuvant treatment regimen, outweighed the benefit of Xeloda as an adjuvant chemotherapy treatment.
I felt and still feel good about this decision.
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SoniaL, What made them suspect your internal mammary node? I had one on my initial MRI show 5 mm. My understand it that is the high end of normal but also something I don't want ignored. MO has not talked about it. I am meeting with RO and that is a question of mine.
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Hi, Jennifer -
My MO never mentioned internal mammary nodes either. I met with my RO last week (even though I'm a few months away from rads) and she said she'd be radiating those nodes, especially since part of my original tumor crossed over into the inside half of my breast.
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Jennifer522, they noted in my initial MRI and CT Scan (shortly after my diagnosis) that it was enlarged. After my AC+T chemo, it had shrunk from 1.6cm to .6cm so they feel it is indeed cancerous based on its response to chemo. They included it in my full breast radiation and then also did 5 boosts to that area. I think at some point I will have another scan to see what it has done. Sounds like yours is about the size of mine now, after the chemo treatment but I agree - you don't want it ignored, especially with the triple-negative BC being more aggressive. Your RO probably will want to do the boost treatments to that area.
For some reason, none of my care team had mentioned the internal node - not the MO, the BS, or the PS even after my surgery. My RO was the one who told me about it when I went for my radiation planning...talk about a shock! Here I was thinking I was cancer free after my BMX and lymph node removal. I'm thankful that the RO did the extra radiation and praying that has taken care of it.
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Hi there everyone,
This is my first post. I am (obviously
) also triple negative and am so grateful for this forum! I wanted to follow up the thread with regards to Xeloda. I am from the US, but am now living in Vienna, Austria. It is not yet standard here to treat patients adjuvantly with Xeloda (It is only used for metastasis).I had good response to AC + T, but not complete. I guess the right way to call the response is: ypT1c, with 0/17 nodes (At biopsy, 2 nodes tested positive). I completed chemotherapy in March 2017, then surgery in April and completed radiation in July 2017.
I have just now learned about the study from Japan that was published last summer and am really excited to try Xeloda, despite some of the side effects. But I am "outside" the parameters of the study, since I completed radiation 6 months ago.
I have 2 questions: 1) Is it standard treatment to take Xeloda after surgery/radiation if you are triple negative and did not have a pCR?
2) Is it standard - or does anyone have experience - with taking Xeloda this much after treatment has ended (6 months)?I wish I had know about Xeloda earlier! Thank you from Vienna.
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"Living in Vienna, Austria." Oh man am I jealous. I'll trade, my wife and I live in Vancouver, Wa. Hey, we can see an inactive (for now) volcano out our front door.
Wife's TNBC almost all eliminated after 9 months while on Xeloda and Zometa. PET scan due soon. All fingers and toes crossed.
Complex case. She started out Stage 4 ER/PR+ HER2- 100% estrogen, grade 1. Inside that tumor was an ER/PR+ 30% estrogen, grade 3. In 9 lymph nodes was Metaplastic TNBC. Lifetime AC and Rads took it all out. ER+ came back, grade 1 numerous spots to spine. They flipped to TNBC (regular not Metaplastic).
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AlabamaAustria,
I don't know if it is "standard" treatment to give Xeloda adjuvantly if no PCR, but it does seem awfully common. My MO is resistant to giving it to me and I didn't have PCR, but I'm going to get a 2nd opinion.
Not sure about the "outside the window" question. That's a good one and I haven't heard it asked before.
Rebekah
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It seems like Xeloda is a very "hot topic." I am curious about it too. I was diagnosed with stage 2A TNBC in September. Started 4 DD AC then 4 DD taxol. I had a BMX. My path showed I had no lymph node involvement and I had less than a mm left of cancer. It was too small to even retest. My docs said I had one of the most thorough pathologists and she just kept looking. They are considering this a complete response. Radiation was not suggested as it would do more harm than good. My doc does not suggest xeloda but says it’s ultimately up to me because of that tiny speck left. She said for people with my path it is not suggested. Her concern is that the study done in Japan was done on people with much more residual cancer and of all the patients she has prescribed xeloda for, every one of them has needed to lower their dose because of side effects. There are no clear studies stating it would help in my situation. I’m scared to be done treatment and don’t want to regret anything. Looking for advice!
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