Triple Negative Stage IV
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sharjin: I am so sorry to hear about your mother. Prayers for strength, comfort and peace for you and your family.
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Hi All,
I’ve been on the forums for a little while, but only recently found this thread so I thought I’d say hello.
Has anyone been on Nivolumab (Opdivo) by chance? I have my second round of it plus Avastin tomorrow with scans in a few weeks to see if it’s doing anything.
Hope everyone is having a good weekend so far
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Hey Parrynd!
I heard good things about Opdivo, although I cant find the article I read a while back. I am glad your oncs are on top of their game.
Out of curiosity, did you get tested for gene mutations given your subtype and age?
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parrynd1: I have not been on Opdiva. Let us know how you are doing on it
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Daniel - I did do gene testing and am negative for the most common mutations (like BRCA), but my onc was able to get my insurance to approve an expanded 200 gene test using my tumors dna and they found several mutations (I can find the report listing the exact ones if any is interested). There’s 6 that I have, but they don’t know much about them other than they are mutations basically.
Hartrish - will do! I’ve had 3 rounds of it with a trial drug, but due to complications was pulled off the study and was off treatment for 2 months as per my onc. My last scans showed I was stable though at the time I was pulled! I’ve done one round of just the Opdivo with Avastinand so far had minimal SE’s from it so we will see what my scans show.
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just in case anyone missed this clinical trial results on the other thread.
https://www.breastcancer.org/research-news/tecentriq-helps-advanced-triple-neg-bc
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Hi,
Just jumping in re: Opdivo. I am not on it and I am not Stage IV, but I do know someone who is Stage IV TN who is NED now due to treatment with Opdivo. So, there is hope.
Rebekah
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Hartish, thanks for sharing!
Just had scans done from being on the Opdivo/Avastin regimen. Breast tumors stable, brain still clear & edema is decreased. Skin & lung mets have grown. It’s a mixed bag, but it is/was doing something for a period of time. I’m thankful for that over nothing at all
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parrynd1: I hate the mixed results. Are you staying on the same treatment?
I have been on carbo/gemzar for 13 months. MRI 2 weeks ago stable. I hope it continues to work. I have not been on any PD1 meds yet.
Maybe when I have to switch treatments.
Hugs and prayers your way.
Tricia
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thanks Rebekah for posting. The PD1 meds seem to work in about 20% of people from what I read. Hoping to try one if and when I have to switch treatments
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Hartish, I’m staying on it for at least the next treatment. Onc wanted to see if she could add a parp inhibitor, but insurance denied it. Not sure what regimen I am going to go onto next. I would love to clear up the skin mets. They really bother me. When I was still on the IPI 549 trial I wasn’t completely stable. Unfortunately I had some crazy se’s and wasn’t taken off. I was told before starting the trial (where I first received Opdivo) that it has shown to usually work for only 15-20% of people. I got very lucky especially since it’s hard to treat brain mets with chemo so Immunotherapy was idea. I was on a parp inhibitor last year that worked well also on the ISP 2 trial.
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Advanced-Stage, Triple-Negative Breast Cancer in Women With BRCA1/2 Mutation Seems to Respond Better to Carboplatin Than Taxotere
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just a quick update. Been on the IMpassion131 trial (taxol and atezolizumaub or placebo) trial since end of september. Mom had a scan Monday and results Thursday show Mets in her lung and adrenal have shrunk and suspect liver activity has cleared up. Hoping to be on this trial for awhile. Wish we knew if we were getting the trial drug. She's androgen receptor negative but we're looking into foundation1 for further testing.
Thinking about and praying for everyone here.
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Kcan, thanks for the update and glad she is doing well on the trial! I did the extra testing after finding out I was - for androgen receptor. Came with 5 different mutations, but they didn’t know what those mutations were really affecting other than the fact that they were mutations. They said the research isn’t there yet.Hope you will have better results/more info if you do the foundation test.
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hello everyone, It is with great sadness that I need to report that minxie ended her battle with breast cancer on Monday December 3rd. She had several lesions on her brain that no one was aware of, and one of the hemorrhaged, which eventually killed her. This is her sister posting for her, and I was with her through her final days. She had asked in her directives that I post something to let this community know. Thank you.
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Minxie’s sister, I’m so sorry to hear of Minxie’s passing. Thanks for letting us know. We had communicated about keytruda on the boards. I’m glad you were there with her. Praying for peace and comfort to your family
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Minxie's sister, I'm so sorry to hear of Minxie's passing. Thanks for letting us know. We had communicated about keytruda on the boards. I'm glad you were there with her. Praying for peace and comfort to your family
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sorry so to hear about minxie. My thoughts are prayers are with you and your famil
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just checking in with everyone. How is everyone doing? I have my MRI on Dec 17th so praying for positive results. Think about all of you every day and the journeys we are on.
Prayers and hugs!
Tricia
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I've had a horrible upper resp cold for 5 days and am hoping I can fight it off without antibiotics. I am scheduled for infusions tomorrow, but am skeptical I will get them. I haven't gotten hardly any Christmas shopping done.....and the house is a disaster! At least the sun is out!
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I had two port infections and they gave me antibiotics without skipping chemo..... Good luck KPW3!!
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Hartrish I’m in you pocket for good MRI results next week
KPW3 I see people coughing all over and it makes me paranoid about getting a cold. I hope the antibiotics help quick. Colds are miserable without cancer or treatment! Maybe an extra cup of eggnog will be in order. There’s always online shopping and some places will even gift wrap it for you. I always enjoyed doing special fancy present wrapping with bows and ribbons. This year I’ll be lucky to get a good wrap job, haha. Don’t know if I feel well enough or have the energy to do more. We did get around to hanging a small cross shaped wreath on the front door, but that’s all or decorations this year.
Brain MRI today. Worried about the results. Been having eye twitches and headaches...same as the last brain tumor. Lynparza isn’t working and the skin mets are as ambitious as Alexander the Great in their efforts to continue to conquer my chest (right breast looking like a zombie boob and lefty has begun itching). Out of all the mets I’ve had so far the skin has been the worst. I think I feel a tumor in lefty now as well so she is no longer a cancer virgin. On the plus side it’s almost Christmas and most of my shopping is done. Nausea has subsided somewhat - thank goodness! MO mentioned going to a new chemo when/if the Lynparza fails so I will lose my hair on this one. Been working hard to grow it out too! I can even curl it now...oh well. Never a dull moment on this train.
Merry Christmas and hope all my fellow TN4’s are doing ok.0 -
KPW3: sorry about your cold. Hope you feel better soon. Last year during flu season I wore a mask the whole time. Was so paranoid I would get the flu. Never did. Hope that is the case this year. I did some of my shopping on line, have a few things to still be delivered. Finished in store shopping last week. We only get gifts for family members 17 and younger, other than my daughter and son in law. Having everyone over for Christmas this year. Hoping the day is one where I have energy. Everyone helping out so should be fine. My house is a mess too. I cleaned the kitchen this morning and was fatigued so that is all I did. It is rainy and cold here in GA. Hoping to see the sun tomorrow. Chemo tomorrow.
Santabarbarian: is your port infection gone? That is always a concern for me. I am really hard on the nurses watchingthem when they access my port. So far for 16 months I have not had a port infection.
Sierrapineapple: praying for positive results with your brain MRI today. Glad your nausea is better. Some days I live on zofran. How long were you on lynparza? Has you MO said what he might put you on chemo wise? I have loved being on carbo and Gemzar because I still have my hair. I am sure next drugs won’t be as friendly.
Prayers and hugs to all.
Tricia
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My port is gone -- so that took care of that. I hated that port and it saved me a grand total of 4 needle sticks which seems very un-worth-while to get a port over!
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So, so sorry to hear about the passing of Minxie. My thoughts and prayers are with her and her family. Followed her posts closely. Rest in Peace dear Minxie.
Hartrish, praying for good scans. Thinking about you and sending you peace. We are coming up to scan time again soon.
KPW3, I hope you feel better very soon. Take care and I hope you get plenty of rest.
Santabarbarian, glad the pesky port is gone. Hearing that brings some relief. We were worried about my mom's port as there was a stitch coming out and everyone thought it was infected. We still always check. No breaks with this disease.
Sierrapineapple, praying you had a good brain MRI. I'm sorry about the skin Mets. Sounds so uncomfortable.
Chemo is not an easy road, back pain has made exercise and moving around difficult for mom. We are beginning work with a different naturopath, will see how that goes.
Merry Christmas to all you Warriors. Sending you many vibes of peace and comfort.
K
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kcan: hope you mom’s pain gets better. Merry Christmas
Prayers coming your way
Tricia
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Hartrish I feel you on the energy front. I woke up yesterday and felt ok so I said I’m going to clean the house! Only ended up sweeping before I was exhausted...oh well. I’ve been on Lynparza for 3 weeks now so not too long. Can’t recall the names of the chemo MO talked about next, but she did mention I will lose my hair so we are hoping to put that off till after the wedding in January if we can. Just hope this damn treatment is working and not just wasting time. So far I don’t see it doing anything but making me nauseous and tired.
Kcan sorry about your moms pain. Has she tried CBD oil? It can help with inflammation which causes a lot of pain on chemo I hear. Not sure if you can get it where you are or how you feel about it though. Unless she is on an Immunotherapy. It actually acts as an immune-suppressor so not a good combo.
Santabarbarian yay for your port being gone
I love mine, but if something it’s working right or doesn’t feel good it’s just miserable. How was the removal? Once upon a time my MO talked about removing mine and I was too scared to do it, but turns out I wasn’t NED so that didn’t get pushed anymore.So, brain MRI was the same which is good and bad. This ‘swelling’ still won’t go away and more and more I’m thinking it’s cancer in the dura. My MO and brain RO all said how great Avastin is and how quick it works and it will take care of it like that...so here I am months later and it’s not really doing much. Maybe switching treatment will help? It’s all a guessing game it feels like. Frustrating.
Hope everyone is managing along good this week
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sierrapineapple: is your treatment keeping your brain mets stable? I know I always want less tumor but lately I have to be satisfied with stable.
Got my TM back today, 58.3, was 49.6 before then and 41.2 before that. Just wondering if this is the start of bad news. I have my MRI on Monday so will know for sure if liver tumors are stable or progressing. Hoping for stable at this point based on TMs.
Keep prayers coming please
Thank you
Tricia
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Right now I do t have any visible brain tumors, just the suspicious spot in my dura that they think is swelling. The Immunotherapy I’m on has been keeping the breast tumors stable. I feel a lump in the left breast now though. I see many people talking about their markers...I’ve never had anything that gives me a number back. Is it a blood test? Much MO just does scans every 1-3 months depending on the situation. Is that not the normal? Stable is good. I hope you get to stable Hartrish, but even more than that i hope for it to be shrinking
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TM is a blood test. My MO draws one every cycle. My TM has been very reliable with the amount of cancer that shows on scans. Some women the TM might not be as reliable. The scans are the gold standard to determine progression, regression, NED. The TM in my case just helps us know we are still going in the right direction or gives us warnings that the scans might start showing progression. My TM is CA 27.29. There are others markers as well.
Some MOs use them while others do not.
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