Triple Negative Stage IV
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Hi Lauralind...they started me on Cyclophosphamide Methotrexate Fluorouracil (CMF) a 3 drug combo. The Fluorouracil is pretty much the same as Xeloda. I started last Friday. It is an infusion that takes about 2 hours and I will receive every 3 weeks. So far no SE's. Feel about the same as I did when I was on TAC. According to my ONC, CMF is an oldie but goodie for TN. I guess we will find out.
How are you doing??
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Im glad that you don't have any SE so far. Im doing ok. Still fighting the ever increasing arthritis stuff in my hips and knees. I would be paranoid that its bone mets if it was exactly the same on both sides ! Ive also had some balance and other brain issues but I don't know if its just because Im doing more, the side effects from the CKS or new lesions (whi9ch I doubt but still, how can one not think that?) I have scans on Dec 7 brain MRI and body CT so hopefully I will still be NED. I hope you guys have a great Thanksgiving !
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Tomorrow is going to be a busy day for me....I am cooking for the family, something I love to do and look forward to each year!
I want to wish all of you a Happy Thanksgiving!
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I've been lurking in the Triple Negative Stage IV group for awhile. Officially I have ~20% ER response but my doctor has said that it seems to be acting like triple negative, so I am here. Also, I'm BRCA2 positive.
We are currently working to get the PARP inhibitor Lynparza/Olaparib off trial for me and I'm wondering if any of you have taken it and if so what your experience was with it.
I can't get in the trial because it hasn't yet been 12 months since I had my initial chemo. I'm somewhat happy about that because on the trial I would only have a 50/50 chance of getting the new drug since it's a randomized trial.
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Hi
I am new to this forum so apologies if I'm in the wrong place. I'm a 44 year old with 2 kids aged 8 and 10. I was diagnosed the first time aged 39 and then I had another primary in 2013 in the other breast. Both times I did the 6 month chemo and rads routine. I asked for a double mastectomy as I was also tested as BRCA1 positive. A few weeks ago a PET scan showed lung mets and also a new cancer on the skin on top of my implant. I feel a bit like I'm in no-mans land now - there are no rules I guess. I have seen a TNBC specialist and she has me on her list for the pembrolizumab trial next year. I am starting Xeloda today. I would be really keen to keep in touch with other ladies in the same situation as I am - it's a lonely place when you are MBC! I find reading your posts very heartwarming! It's good to see how well you are all doing and very inspirational. It helps me when I have the dark times thinking about my kids and husband and how they will cope once I'm gone. Sending positive vibes to you all!
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Hi Kate & Viceroy,
You are in the right place, although this is a quieter thread.
I just wanted to say welcome, & sorry that you find yourselves here.
I'm not strictly triple neg, but my onc says I've become resistant to hormonal treatment. And my pleural effusion was ER/PR neg. Xeloda worked for 9 months for me Kate, I found it quite doable, the worst SE being hand & foot syndrome, but with care that wasn't too bad. Check out the thread on xeloda which is quite active.
I'm now on taxol, getting a lot of fatigue & a bit of neuropathy, but at least I'm stable...
Best wishes for minimal side effects & maximum cancer killing power to you both
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Hi Kate
So sorry about the recent diagnosis
My wife is on the abraxane and pdl1 trial
I think that there might be some exclusions if you get treated with certain chemo drugs first
You might want to check with your medical oncologist about that
There is a big meeting next week on the latest in breast cancer in San Antonio
Let's hope some new drugs and treatments get appro
All the best for a great response
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Welcome, Kate, though I am sorry you have to be here. Ick! But it's very good not to be alone even if we wouldn't wish this on anyone. Boy do I hate those dark days you speak of. They plagued me each and every day in the beginning and I had to keep shaking them off (force myself to stop the thoughts that just kept popping up and running away with me) lest I dissolve into uncontrollable fits of tears and rage and alarm my children (12, 9, and 6) who were always around. Now I do much better and many days just go on without much thought about it. Then, days just pop up and the ick is back though in a quieter and more accepting way I suppose. My 12 year old had her choir concert tonight in the high school auditorium. So I'm looking around the building and thinking how I really want to be around when she's in high school, even when my 6 year old's in high school...and I want to be around way past then too. And it just sucks, the reality that this most likely won't happen. Still, I continue to hold out hope for some miracle. All in all, no sense thinking about what may or may not be. I have today. And tomorrow I'll have another. So this is good. There is a lot of good and a lot to be thankful for each day no matter what. So there's a little pep talk for myself, shared with all of you lovely ladies who understand like no one else.
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This disease in some ways is unique in that many women think they are cured and months or years later find out almost overnight that they go from cured to stage 4
It is so devestating , but then after a while , and that time is different for each individual and each family member , a plan is developed , and trust and hope return with a medical team
The ups and downs of dealing with the treatments and the unknown is scary , but I can tell you that research is ongoing with all cancers and with TNBC , prostate, lung and melanoma , tremendous advances are being made
This is a site that supports us all ,and you can see many survivors who hopefully can and will become NED with the new drugs , vaccines and new targets for TN that are being discovered
They are not only testing for pd1 receptors , but also androgen receptors and even genetic maping is being used more frequently
Wishing you only good
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happy to join this forum,I was diagnosed of stage iv tnbc in october with mets to the lymph nodes,spleen,4th rib,T11 & T12 ,started cab & tax weekly ,had a huge response after the first chemo cos the rashes all diaspperaed & tumour shrinking but after the 6th section of chemo rashes appeared on my breast followed by engorgement. Obviously the tumour increased in size.saw my unco who sent me for scan which showed a huge reduction is the sizes of the lymph nodes.but presently am not happy cos of the rashes that reappeared & the engorgement.could it be treatment failure?is there any possible alternative drug? Did anyone experience this ?
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Viceroy and Kate...So sorry for the reason you are joining us. But happy to have you aboard! This is a great discussion board for stage IV TN. I was diagnosed stage IV in May of this year. Just like you it was a shock! I couldn't believe it!
This discussion board will help keep you going. Bad days and Pitty Parties are part of the journey, we all have those. But you will have good days too! You will learn to live life to it's fullest each day! You will look at everything differently, in a good way! You will appreciate things more than you did before!
My mets are in my lungs, 1 on my sternum and 2 nodes. I was on Taxol for 8 months but progression showed it ugly face and I have now switched to CMF. Doing good with it! You will need to rely/trust your Oncologist more with a Stage IV diagnosis than you did with your initial diagnosis. There is pretty much a standard care for stage I, II and III breast cancer....Stage IV is different.
Ladies...make sure and update your profiles with your diagnosis and treatments. It helps when we talk to each other to see what you have had in the past.
Again Welcome! Just wish we were all here for a different reason.
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Munachi- I had something like that where my skin got worse and my breast got lymphedema but I didn't get my PET/CT results yet so I don't yet know how my chest wall and lymph nodes responded. That said, my doctor is working on changing treatment because my skin mets are distressing for me. My nipple is involved and oozes and hurts.
Update: my lymph nodes are worse as well, plus progression to my liver.
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Texasrose, glad you are doing well with CMF. I am sure you had a smashing Thanksgiving and I thank you for your positive words about how much life there is when you live each day fully and see things in the best of ways. It is a unique perspective we have. I catch that deep, soakin' up every ounce of beauty of life vibe a lot of the time but for some unknown reason have been feeling glum the past couple days. It's my off week too so I just don't get it. It could just be the sudden onset of grey weather here in Ohio. We were blessed with an unusual amount of sunshine this fall. Scans tomorrow so hoping they'll give me a pick me up.
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kaayborg, all the best for your scans tomorrow. I find the weather is a definite pick me up when it's sunny. I look back to those gloomy dark days when I was first diagnosed in July (winter here in Oz) and it definitely made everything all the more gloomier. Don't know if it's the weather getting better or me just becoming more used to it But i do find now that it's not consuming my every waking moment and I can find time to think about andenjoy other things. You just gotta get on with life don't you cos the alternative isn't worth giving the time of day to!
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Viceroy, how are you doing? We are thinking of you!
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We were wondering if you would mind taking this brief survey about clinical trials, immunotherapy and triple negative breast cancer?! It should take less than 5 minutes!
Thanks so, so much!
https://www.surveymonkey.com/r/TRNClinialtrials
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hopefully immunotherapy is here to stay and will continue to get better and more specific
Jimmy Carter on a pd1 ...NED
Now there is a clinical trial pdl1 ..for triple negative metastatic breast cancer
Hope this year will be a breakthrough , and now there will be targeted therapy for TN patients
There is a big meeting this week in San Antonio. , and preliminary results and side affects might be in , although it is a blind study , some off the record results and responses or I should say trends might be available
Will let you know
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There seems to be a lot of things on the brink of us TNBCers. I certainly hope so ! My onc is at the conference this week, which is why I couldn't see her until NEXT week. So will be interesting to hear what went on.
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kaayborg, texas,laura; As you said we have to keep this thread moving along. I know being connected to this thread helped me so much in the very beginning and also now.
I look to the posts from all of you not only for info which we can certainly all share ( when they find the meds that will cure us all) but for the confidence to know that I am not alone. I wish none of us were in this but it is a little easier when you can confide in others in the same boat. So to all the new ladies, I hope everyone on here can be of some comfort to you, one way or the other. So ladies YES we must keep posting.
We must BELIEVE!
Rosieo
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Rosieo, thanks so much for those wonderful words.
To all, my scans showed all is stable. Thanks to all of you I know that stable is good and expected it, though I will still to admit the daydream of hearing, "Oh Wow, this is amazing everything is gone. NED!" Maybe someday. Maybe not. Either way I feel well and go on. Starting to plan trips for spring break and summer vacation. This feels good. I read a post about someone speaking of someone not sure if they should bother with buying a new winter coat. I have had similar thoughts but now I plan vacations 6 months out (with travel's insurance of course). This is good!
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fantastic news kaayborg! I'm sure that NED is only just around the corner for you and hopefully for me too. When first diagnosed it's the feeling that your future has been taken away from you that's the hardest to bear. But now, to be able to start planning just a few things here and there is the best feeling. All the best to everyone
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Viceroy,how are you doing?need to hear from you.Its obvious my chemo regimen failed cos biopsy result showed more growth.will be seeing my onco today for possible way forward. Asking for Gods favours & miraculous healing on us.
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Viceroy, I have been thinking of you too. My prayers to you and Munachi, also. May you find the treatment that works well and long.
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Hey Ladies! Rosieo you are SO right...we need to keep the board going. We are not alone...we definitely have each other! And that is a very good thing. This board gives us all the courage we need to keep going on our journey! We know there are bad days, pitty party days, good days and great days. Having someone to share all of those with is such a blessing! Our family and friends try to help but they really don't know what we are going through.....but everyone on this board does know what each one of us are going through! That is why it is so important to keep it rolling!
Lauralind....let us know what your ONC finds out at the Conference this week!
Homehelp...Holley Kitchen just posted on Facebook that she is doing a PD1 Trial in San Antonio....I am pretty sure she is triple negative. Fingers and toes crossed she responds well with this new treatment! I told my husband last night if this second line of chemo doesn't work I want to do the PD1 Trial for TNBC next.
Munachi....praying with you! Keep us posted on what your ONC decides!
Kaaborg that is AWESOME news! Stable is good! I know we all want to dance with NED but I will take stable any day! I agree with planning for the future! You can't stop living!! Let us know where you are going and of course we expect pictures when you return!
Love ya ladies!! Believe in hope! There is life after stage IV if you live it!
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I'm super excited because I got Lynparza in the mail yesterday and started treatment on it. I've only had 2 doses but so far no side effects. I did take some zofran because my stomach felt a little funny, but I probably didn't really need it.
I am BRCA + and my insurance is covering the drug. I'm not on a trial. I hope that this works for me! It's nice to be on a pill instead of having to go in for a drip IV.
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thought I would just post to say I have been on Keytruda for about 9 months. My Onc is v excited about it. Insurance won't pay and no trials here so it has been v expensive. And I have no idea whether it is doing anything. I have had mild progression on last scan mainly in hip which I am having zapped tomorrow. Still who knows if I would be worse without it. No side effects. If you can get a trial or insurance I would definitely go for it
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my unco placed me on dox but she is not quite sure if it will last,pls friends advice me on what to do.How do I get enrolled in clinical trial ?I came on a visit here & noticed this breast cancer stuff,as a forigner can I benefit from it ?she said I have months to live,deperatly in need of what next to do
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Hi all
Hope everyone is doing ok
My wife had her treatment today and we are hopeful she is getting the trial drug
They just named it and it's called atezolizumab
Will send you some articles about new findings re TNBC
Hope it help everyone
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