Triple Negative Stage IV
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Okay, so I see my last post kind of cut-off weirdly. I had to get going somewhere and now need to finish my thoughts to you, Kaylynne (had meant to delete and start all over). Was going to say the eribulin took 3 cm off largest tumors very quickly but that 3 cm quickly grew right back. We had just added pembro at the time of the progression scan so kept on with the eribulin/pembro combination to see if with pembro, eribulin still had something to offer. I think it may have but only managed to keep me stable and stable wasn't feeling so comfortable, plus we weren't completely sure about the stable deal since my scans have been so hard to read and we didn't want to risk a sudden progression because it just might be too much. As for Xeloda, we were again in an edge of crisis place, and after a week and a half on it, I only felt worse, not any better so we moved on. Sometimes I wonder if we moved on too soon but I do totally trust my doctor. She said it should have had some effect by that time and I believe her 100%. So many have valid complaints about their care but I'm living in a practically perfect world here. My doctor is working hard for me and is there for me 24/7. She's incredibly well-respected, knowledge, and her level of empathy and concern for me is out of this world. I share thoughts with her, we weigh options, I ask for her best opinion and do what she says. Have you gotten your Xeloda yet? I don't want you waiting for long.
As for F1 and Caris, I've only had F1 and we have done it twice, both at my onc's suggestion and with her help. It turned back very little the first time and absolutely nothing the second. I'm not of the understanding that what it may turn back is necessarily the best option for us. It's just an option. One on my first report was a drug approved only for hormone positive bc. My onc said it may be possible to get approved off-label but really it wasn't a tx she was that excited about. We don't know any data on its effectiveness like we do for other drugs, and just because something about my tumor indicates it may work, doesn't mean it will. Being PD-L1 positive might improve my chance of immunotherapy working but it doesn't mean anything for certain either. It is such a guessing game. Will your onc explain why she isn't interested in F1 if you ask? All onc's should take the time to explain the reasoning behind their decisions.
Hartrish, glad to hear you are staying the course and that se's are manageable.
As for my dear friend Julie (Texasrose), I have learned that she passed away a few days ago. She is a beautiful soul. I know she lives on. I hate cancer.
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Kayboorg all the best for your treatments.I am sad sbout the passing of texarose.She was a vibrant lady here.I have been reading her posts from almost 2 years.She was a kind of inspiration for us.
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sorry to hear about Texasrose. So sad to hear this news.
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kaayborg, Thanks so much for explaining your treatment changes. It's wonderful that you have an oncologist that goes the extra mile and truly listens to you and answers your questions. Sometimes I feel like mine just sees and expiration date on my forehead. As far as I can gather, she is old school. Her nurses do all the legwork and she doesn't even look at my chart or test results until she sits down in the room with me. But honestly, I don't know if it would be any different anywhere else. I started Xeloda yesterday. I have about a year's worth of hand and foot cream so this stuff better work! I am hoping and praying that gem/cis reduces those bad boys and keeps you stable.
hartish: I am praying your treatments kicks into overdrive and you see tumor reduction and not just stabilization. April isn't too far off but I know the waiting and wondering is the worst. Hugs to you.
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TexasRose53 reached out to me on here and was a kind woman with a good soul. It breaks my heart to hear of her passing.
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Kaayborg - It seems as though our liver mets and discomfort level are close to the same. I haven't tried morphine though. How well is it working for your pain? I used to have a high tolerance for pain, but liver mets pain (for me) is quite annoying. I wish it would go away already (hoping it will when I start chemotherapy again on Monday). Sigh...
kaylynne - Hope Xeloda is going well for you so far.
Ladies - Hope everyone is hanging in there. It's good to be able to share with you all. (((hugs)))
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Hi all- I am cross-posting a new clinical trial for TNBC.
This week, Bristol-Myers paid a record 1.85 billion for rights to 35% of the future profits for a new type of immunotherapy, called NKT-214
https://www.xconomy.com/new-york/2018/02/14/bristo...
The drug stimulates CD122 and increases the numbers of immune cells that can get to the tumor to fight cancer. The idea is that this drug would boost the effect of checkpoint inhibitors, which make the cancer cells more accessible and sensitive to killing by the immune system.
http://www.nektar.com/pipeline/rd-pipeline/nktr-21...
And there is a phase 2 clinical trial to test this that s accepting TNBC; looks like it is restricted to first- or second-line treatment:
https://www.clinicaltrials.gov/ct2/show/study/NCT0...
Because all immunotherapy trials are fast-tracked by FDA, its worth to keep track of how this trial goes .
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thanks cure-ious for posting. Takes a team to keep up with all the clinical trials
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Amw5, gem/carbo was exactly what I thought you should do next. It's tough on counts but don't give up if it's working. Changing the schedule and reducing the dose kept me on for 2 years.
Morphine, I was reluctant to try, but am very glad I did. Made a huge difference with abdominal pain. I was too drowsy at first but adding Ritalin did the trick.
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Kaylynne so glad you have your pills now. Gobs of them, huh!
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Kaayborg, thank you for your kind words. So often I feel on edge and afraid and reading your words bring peace. I am inspired by your strength with this horrible disease.
Healing, thank you for the information. Often I feel in the dark and it's sometimes difficult communicating to the oncologist. The visits seem so rushed it's hard to get information. I will definitely look into immunotherapy!
I'm so, so sorry to hear about Texasrose. I followed and read her posts and she was amazing! My heart goes out to her and her family.
Scans and waiting is definitely the worst. The last ct scan was of the chest. I can't help but wonder what's lurking around mom's liver and the rest of her body.
Positive results and peace to all of you amazing women!!!
Xoxox Katherine
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kaylynne: how is the Xeloda going? Any side effects? Hope not
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Kaayborg and Hartish - Gobs and gobs of pills! lol 3 in the morning and 4 in the evening and so far, no big side effects. I have a few liver pains from time to time. I am constantly applying lotion to my hands and feet. One thing I have noticed is that I am not bloated as much nor is my face puffy and no swelling in my hand or arm. Pretty sure that was all due to the gem/carbo and steroids. I generally have a sweet nature but while doing IV chemo and steroids, I had little patience and was really emotional. I am so thankful to be myself again.
amw5 - How is gem/carb working for you? Any side effects? Do you get steroids before the treatment?
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Good Morning!! I will begin taking Xeloda tomorrow. I have been educated on the side effects and just wondering with regards to the hand and feet syndrome and any other side effects, what has or hasn't worked for you?
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HaveFaith65 - I started it last Thursday and have had very little side effects. You can read my comments in this thread. I will keep you updated.
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kaylynne and havefaith65: what is you schedule with Xeloda? 2 weeks on and 1 week off or 1 week on and 1 week off.
I am sure you have looked at the Xeloda threads on this site. There are many.
Best wishes that this treatment works for both of you. Prayers coming your way
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hartrish-I am one week on and one week off. I take 1500mg in the morning and 2000 in the evening, Thanks for the heads up about Xeloda threads and for your prayers. You are in mine too.
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kaylynne: reading some of the Xeloda threads your 1 week on and 1 week off should help with some of the side effects. Seems people on the 2 week on and 1 week off schedule have more hand foot side effects, but others don’t. I hope you have no side effects and wonderful results
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I was recommended AC+T and given AC, Onco decided to not give T due to weakness or any further chemo.
Does stopping chemo midway and not taking any other cause cancer to grow more rapidly?
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usern: not sure about that
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Hi everyone,
Hope you are all doing well.
This is Danni. I posted a post looking for Stage IV HER2- Breast Cancers patients before. My client ClearView - a healthcare consulting firm, is conducting a study to improve patient care right now and are looking to talk to Stage IV HER2- Breast Cancer patients. I got all my information verified by the BCO's site administrator Melissa, you can find our post at the top of the announcement box on the forum page of BCO and also in the announcement at BCO's "Forum: Stage IV and Metastatic Breast Cancer ONLY"
I got lots of patients yesterday. A huge thank you for anyone who is willing to participate.
Now, my client shifted their focus a bit and is looking to talk to some Stage IV triple negative (HER2-, ER/PR-) patients. So if you are interested in participating, please don't hesitate to contact me at danni.luo@atheneum-partners.com, or call me directly at 646-741-8980. We offer $100 for the hour-long phone call with my client. Let me know. Thank you
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Hello kaayborg, I hope everything works out for you. You and Texasrose was an inspiration to my Sister. I keep reading everyone progress and shortfalls wishing something could have worked for my Sister. I continue to hope for a cure or even some drug that can place everyone in remission. Keep up the fight, your Friend in Michigan
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My mother was diagnosed with TNBC stage 3 on Nov, 2016. She did 4rounds of AC, 4rounds of Docetaxol, single Mastectomy and 27 lymph nodes removal, 13 positive for cancer, did not achieve PCR with the chemo so then started for 6months of Capecitabin (Xeloda), and then 25days of radiation on the cancer site, chest wall and Axillary area. All the treatment came to an end on January 7th, 2018. We were so happy but to our utter surprise and complete shock, she started having pleural effusion after 3weeks of completing radiation. After removing water through thoracentesis twice, the water and cough came negative for malignancy. She did a pet CT scan4days back and we got the result today. Her cancer has spread to right lung. The whole family is shattered. Doctor wants to Put her on Gemcitabein and platinum based chemo to improve survival. But he said even after treatment, the prognosis is usually few months to year with TNBC lung metastasis. Is there anyone on the same page. I am desperately in need of some hope. I am pregnant and due in August and only daughter of my mother. I want her to see my child growing up. Nothing can be more painful than this. Please enlighten me if anyone of you can. Please. Thank you.
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Sharjin- All I can offer you is keep the hope alive. I am TNBC with mets to my liver since April. I am 54 years old. I am still here and in treatment. I try to eat semi-healthy, stay positive, see as many friends and family as I can. I believe that staying active and positive does help over all. Will it cure the cancer? No, but it makes life so much better. I honestly believe she will see her grandbaby. How old is your mom?
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Kaylenne- thank you so much. Hearing from you all makes my day better and makes me hopeful. My mother is 48years old. We never thought after going through so many treatments, it would come back this fast. If you please don’t mind me asking, how are you responding with carboplatin and GemZar? They want my mom to put on this too. Can you please tell me about the side effects?
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Hey All,
Sorry to break into the conversation but wanted to inform you of a possibility to earn $100 for a 1 hour phone interview. Atheneum-partners and ClearView Healthcare Partners are conducting a 1 hour phone interview with people with stage IV triple negative (HER2-, ER/PR-) breast cancer. The purpose of this study is to improve patient management, meet the unmet needs and explore potential new treatment of the disease. Please email or call Danni Luo (below) if you are interested. Thank you!
danni.luo@atheneum-partners.com +1 646-741-8980
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Dear kcan, I am exactly in the same page as yours with my mom. She has lung metastasis we just found out about. Please update me with your mom’s treatment plan and schedule. We are awaiting for the next one appointment too and she will do biopsy. Hoping to get her into a clinical trial with immunotherapy.
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Sharjin: I am not sure why it didn't show up but I am now on Xeloda. The gem/carbo didn't work for me but I know it worked for several ladies on this site for months, even over a year. Everyone's cancer is different and everyone react to the chemo differently so don't conclude that it won't work wonders for your mom.
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Kaayborg,
How are you doing?
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Sharjin, I am TNBC with a met to my right lung. I was diagnosed a year ago and did well on weekly Abraxane. It shrunk from 7 x 5 cm to 3.2 x 1.8. I did that from last February to early December, when the radiation oncologist wanted to zap the hell out of "Ralph" to see if he could put me in remission for however long that lasts. I got the results last Monday - remission! And the tumor shrank another 28%. So now I'll get scans every 3 months and enjoy having hair again.
ETA: I was diagnosed with the met a year ago. I was diagnosed initially in 2010, did bilateral mastectomies, radiation and a 6 month clinical drug trial for chemo.Sentinel node biopsies were negative and it came back anyway!
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