Triple Negative Stage IV
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Yeah bc definately sucks and the treatment sucks too - but that's what we have, thank God we have each other too!
It's always something, isn't it Mary - gosh I hope your mri will be clean. I was feeling uncomfortable, getting this checked and that checked, every pain, lump, difference in my body. But if we are not going to be aware of what's happening in our bodies who will? So it's worth getting all the funny stuff checked out. Each time a test comes back clear, it's a relief, one less thing to worry about!
Move slowly and take care with the dizziness Mary!
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Mary - wishing you luck with your MRI.
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Hello Ladies - I would like to thank you for this thread. I'm technically Stage II, but have been told that realistically a jump to Stage IV is probably in my near future. I am just quietly reading and gaining knowledge from you all. (That link was excellent EnglishMajor). I just wanted to thank you all and let you know that is another sister out here sending you best wishes and prayers
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Carolbean- enjoy your chemo break! I've been off for about 3 weeks. Just came back from a trip to Chicago, where I walked all day long!
I am awaiting tumor testing to see if I can get into an immunotherapy trial.0 -
Greetings, I am happy we can find each other through this thread I started a few months ago. Please help me, I have been on Zometa and would like to know if anyone else has stopped Zometa. I don't like the bone and joint pain plus the potential side effects. Hugs, Renae
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Hi laides, gosh I have't been on here for ages.... I kind of try to avoid immersing myself in cancer too much, but I do think of yo a lot. Reading right back - there's some good news and some not so good news. Thinking of you all. I had that molecular test - Caris Life Sciences, Pehoenix, Arizona. Bear in mind that it's not 100% reliable - it gave me 2 drugs that it said would work. However, by the time I had the test I was already on Xeloda, and although they said it wouldn't wok for me, it actally has. So maybe some things are there are worth a try, despite what the molecular testing said? Zeloda showed shrinkage after 4 months, then stable 3 months after that. Jut wish it would keep me stable for as long as poss. Like you ladies, I just want it to work!!! By the way, have found Zeloda fine - sore and peeling hands and feet, but that's all. Love to you all x
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That's awesome, Tortoise! Great news! So glad the Zeloda is working so well for you!
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Karen - any news on your tumor testing? I am on pins and needles - it's been 3 weeks now and I haven't heard a thing. I'm having some pain in my side & back - I'm assuming it's the liver mets, but I'm trying not to think about it. I'm just keeping busy so I can keep my mind busy.
Tortoise - I had the molecular testing done, too. I am so glad to hear that Xeloda is working for you, despite the test! Mine came back saying that no chemos would work, and I have been on 4 since I was diagnosed Stage IV and sure enough I had crazy progression on all of them. But it gives hope that perhaps there's one out there that will work.
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I did not have the protein needed for the immunotherapy trial.
RIP little ray of hope.
I feel dashed. I really thought I'd get in.
Good luck Janelle!!!! I am keeping my fingers crossed for you. It took exactly 2 weeks to get my results. Are you at week 3?
Wishing everyone a good week. I'm at my hideaway in Charlottesville,VA. Back home in NC, an ancient, black walnut tree in my yard fell in a storm, taking out all of the power downtown
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Renea....I would suggest asking your onc if you can change Xgeva injections.
It's also monthly but just a shot in the stomach that your GP can do & best of all, for me anyway, no side affects!!
Good luck.
Karen xxx0 -
Good news on the mri-no evidence of disease. Now I have to find out why my thyroid level is sky high. appt. in the am,and they think the dizziness is some kind of vertigo due to inner ear problems. But have to be thankful for the mri results. I still cant get used to having all these drs. until 5 years ago I seldom ever had to go to the dr at all...what a crock...
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My cancer center just emailed about a trial. I think it's this one.
http://hormonenegative.blogspot.co.uk/2013/06/androgen-drug-to-be-tested-for-tnbc-in.html?m=1
We'll see - I have to have my tissue tested.0 -
Mary - What great news, you lucky girl!!! Keep the good word coming!
Thanks for posting your find, OBXK. I'll be interested to learn more about this.
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I am posting on behalf of my mom. She is 48 and will be turning 49 on July 31st.
She was just diagnosed out of the gate with stage IV TNBC - mets to the liver. She was diagnosed on Monday and started chemo on Thursday so everything has happened quite fast. She has had one round of AC and will be doing Taxol starting the 5th cycle.
My parents are meeting with the doctor on Monday to find out more about the liver. Once that happens, they will probably get a second opinion from a doctor who has more experience with TNBC. The oncologist they have right now gave them very little hope. They left the appointment wondering how long she actually had to live.
They live in SC but are willing to travel. A few people have told them doctors to look in to. I know there is one at UNC and NY.
Hopefully the first chemo kicks some cancer butt!0 -
I hope I can ask this on this forum as I havent yet been dx with mets just possible mets.why do so many women get dx stage 4 right frkm the get go? Is it because they dont go for regular mammos etc? Or because tn happens so quickly that it just spreads so quickly.I know with me the mammo I had showed nothing but after having my exam the same day and my oncol feeling the lump and had a core biopsy right away I may have walked away if getting a mammo from a clinic.even though I had a 1.8cm lump in the 7 o, clock position down low very easy to feel and see it not only did not show in the mammo but also did not show in the ultrasound 4.5 months earlier , I had 7 nodes taken all clear for mets, but 3 months later accidently saw a rib lesion in ct scans now its suspicious for mets and oncol says it was likely there before the bmx I was stage 1 but may have been stage 4 from the start how does this happen?
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I know TNBC is really aggressive so it can spread between mammograms but my mom was also told that a lot of times it doesn't always show up on mammograms.
Mom got pathology of liver. There are 5 spots throughout the liver about the size of a quarter. She will be doing 3 more rounds of AC and then get retested to see if it is working. After that, I think she will move to Taxol. Anyone else have extensive mets to liver?0 -
Hi. I hope everyone is going well - especially obxk and csmommy - I hope you both find a trial/drug that suits you.
Anamerty- I think there are many reasons why people are diagnosed stage iv from the beginning (misdiagnoses, aggressive nature of the cancer etc). I was diagnosed early at stage I with regular check ups and I still managed to get to stage Iv so who knows?
Mothersdaughtertnbc - I am sorry about your mothers diagnosis and I hope her scans show regression. I have lung mets so don't know much about liver mets.0 -
Gabpj: you sure have had your share of shitty cancer how are your tx going ? Which chemo are you now on?
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Yes - I am really getting sick of cancer diagnoses! I am through my 5th cycle of carbo/weekly taxol. I re-scan in 4 weeks and if no progression will do another 6 weeks of carbo/taxol. Scan anxiety is slowly creeping in and I am sure it will intensify over the coming weeks.
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Gabpj:hope you dont mind me asking but on your second dx how was it not found before it was over 6 cm? Thats somthing I never understood, before my dx my entire breasts were not too much bigger than that and if I had somthing that big it would have been pretty much the whole breast, as it was both times for me the first one was left side 9 mm in the 6 oclock position and the second time right side was 1.8cm in the 7 oclock pisition so fairly small easy to feel as both times they were below my nipple right at the bottom of the bra area but I realize with tn it doesnt matter the size because it soreads so quickly.btw I do understand the anxiety before tests I hope it all shows no progression!
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My second diagnosis was multifocal. I had lots and lots of micro tumours spread right through my breast. I think the largest was about 4mm and most were tiny. I did feel a small lump (about 1cm) at the time of diagnosis but I think this was just my breast reacting to the cancer. There was also significant cribiform DCIS throughout the breast. There was vascular involvement (my first diagnosis did not have vascular involvement).
So basically my whole breast was speckled with microscopic tumours and that is why it wasn't picked up earlier. I am lucky that I don't have lumpy breasts and so any lumps to me are unusual and I check them out. It didn't stop me from getting to stage iv but may explain why it took 5 years for me to get here.
I don't have the brca gene but the genetic professor told me that he recommends that anyone with the gene have their ovaries removed when they have finished child bearing but bmx is a personal choice as breast cancer can be detected early. I am proof positive that early detection is not always enough!0 -
Mothersdau. I have liver mets..I think the thing I want to say to you is that even though a dx of liver mets is scary, the 1 good thing about trip. neg. is that it does respond well to chemo. My mets were dx last aug. and once I started on chemo again my liver mets have gotten alot smaller, I had 4, and they have remained stable for a year. The biggest problem Im having is the mets on my chest wall. Pesky little buggers just wont quit....
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Thanks marywh! I hope you can get those chest wall mets gone!
I'm hopeful the chemo will shrink everything in the liver. I've been reading about cyberknife. I know everything will probably have to shrink a bit before she would qualify but has anyone done the cyberknife? Is there a certain size or number before it would be considered? Has anyone had success with it?0 -
I just did some reading on the cyberknife. It doesn't include breast cancer but I am not sure whether they would treat it once it had spread to your lungs, liver, ect. It may be something to look into to. I am going to ask about it. I am just assuming it is not an option because I have not heard of anyone having it done. Sounds wonderful though! Let us know if you find out anything and I will do the same.
I just found out that I may have a new tumor in my lung after having the one removed which means the chemo did not work and the cancer came back. I go in to a biop on friday. I am still dealing with side effects of the FAC last one done the 27 of last month! I still feel very tired and my blood pressure goes done 30 points when I stand up and I also have a high heart rate. Even when I am resting it is 100 beats a min. Really strange! I am trying to get into a internal med doc to find out why all this is hanging on or if I have a new problem. We have to find something to treat our cancer after the norm didn't work. My doc told me he wasn't going to be my doc anymore now that the chemo didn't work, I go on to his triage group who handle the trials. Nice! Oh he said to still email him and let him know how I was doing. Yeah right! I feel like I have handed over to the wolves!
If anyone is on a trial that is working for them please let me know which one, there are several out there it is hard to know what to try. This is very depressing news! My 12 year old is having a hard time trying to understand it all as am I. Hubby is doing all the research, poor guy, he is having a hard time keeping it all together. Lots of tears! Wish I had more hope.
Thanks for your ears, I will let you all know how the biop goes. Hugs and kisses to all, Debbiej
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Hey Debbie, its nice to see you on this thread. What chemos have you been on? Ifind that pretty wrong that your dr. doesnt want to be your dr. anymore.
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Debbie.....looking at your signature, it doesn't say which chemos you've tried.
My onc has said there are many options out there to try as time goes on.
Just curious......which chemos have you tried?
(((Hugs)))
Karen xx0 -
I was scheudled to have cyber knife to get a quarter size spot out of my liver after I finished Abraxane but they deicided to give me the Red Devil first and then do the cyberknife. Lucky for my the Red Devil got rid of the spot and I have been NED ever since (2009) hopefully I haven't jinxed myself I got a scan tomorrow.
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Debbiej,
Sorry to hear your onc did that! I can't imagine how a doctor could drop someone like that. I don't know where you live but maybe a new onc would give you more hope and more options. I have heard there are a lot of different combinations of chemo so maybe there is one you haven't tried. It seems like everyone on these boards get second opinions. Hope you can get some good news!
My mom is currently with a local oncologist but I don't think he has a lot of experience with TNBC so they are looking into oncs with TNBC experience. We live in SC so we have heard of Dr. Lisa Carey at UNC. Also, we were given two other names-Dr. Cliff Hudis at Sloan or Dr. Linda Vahdat at Weill Cornell. Those would be a long way away for us so we're not really sure which one to go with.
The onc just started her on chemo but I keep seeing that a lot of you are doing trials. Do trials start early on or later on? Do the oncs keep up with this stuff or are we supposed to look for trials?
Thanks for the help!0 -
Mothersdaughter - in my experience, trials are something you look to, when you've either exhausted the drugs that are standard protocol, or in my case, don't want the ones left to try. I am very sensitive to drugs that cause neuropathy, so I will not do them.
Your mom can ask her oncologist about any trials he thinks may benefit her. I hope this helps.0 -
Thanks OBXK - that does help!
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