Triple Negative Stage IV
This is a way for us to find each other, please add your post so everyone can be found. We can discuss on this thread (hope this works out!)
Well I'm here.
Original tumour Feb 2009 showed a small amount of Her2 so I did a year of Herceptin after full on chemo and rads.
Subsequent tumours and nodes have all been TN.
Was on Xeloda for a while but had progression, so am now on Abraxane which is hopefully keeping it at bay for a while.
My sister is also TN and just finished her year of chemo and rads. We will investigate the genetic stuff soon.
I love to hear about current research into TN. I know they are trying to make it a priority but we do hear so much about the hormonal stuff.
Im here too. Was dx originally in jan 08, with recurrance in 11 and in aug. of 12 mets to liver,lung and chest wall. Im also currently on abraxane and doing well.0
bottkota Member Posts: 22
Add me as well. Original diagnosis Apr. 2005 stage 2 no node involvement. Nov 2009 mets to sternum and surrounding lymph nodes. Did abraxane, Gemzar and avastin for 10 months...then the cancer got sneaky and moved to my liver. While waiting for my name to be drawn for an expanded access trial, I did 5 radiation treatments to my sternum and brachial plexus. Name was drawn for trial and began carbo, Gemzar and iniparib (former PARP inhibitor) in Nov. 2010. Have been on it ever since. Reached NED in sept. 2011 and have maintained it since. Stopped Gemzar in sept. 2012 due to low platelets and stopped carbo in jan, because my body is tired....and breaking down. Doing iniparib only right now, hoping it will keep me NED. I am also braca 1 and 2 positive. And have a HUGE family history. .
TonyaB Member Posts: 6
Well, you can add me to the group too. Dx stage 3C on 2/07 with ER- PR- Her2+. Today is actually my 6th year of living with cancer.
In 1/08 Skin mets that were TN treated sucessfully with Xeloda. 07/10 Chest wall met (very deep and close to lung). I was put on Carbo/Gemzar and Iniparib and have been stable for 2 1/2 years.0
I'm here too. Diagnosed at stage IV from the get-go in June 2009 with mets to bone, lungs, biliary tract,spleen and nodes from neck to pelvis. I was on Gemzar/Xeloda for 8 months, then Caelyx for 4. Taxol kept me stable for 12 months and navelbine has now kept me stable for 16 months. At this point. I only have small mets to lungs (largest is 6mm). I will be turnng 49 later this month and am excitedly looking to celebrating the big 50!!0
Yes! The other TN forum IS just too broad, and there was no place for us Stage IV TN's to all congregate. Thank you. Count me IN!0
Evans1128 Member Posts: 2
This is great. Count me in. DX with mets in November, week of my birthday.
Kskier- you are such an inspiration and I'm sure give many of us hope here.0
I am here. I was diagnosed as stage 4 from the start in January 2012 with mets to my neck and chest (close to the heart). I had to go to the emergency room with a burning chest pain, and this is when I was first told about the cancer. Chemo shrinked the mets a little, so I am not in much pain right now, but the thing has now spread to my spleen, left lung, and left thigh.0
I'm glad this thread is gathering a few ladies together. Lotusblossom; I am also 49 and I believe Renae is also. I wonder how many of us were diagnosed relatively young. I also wonder if many of us know our brca status. I don't know yet but hope to.
I am 43. I had the genetic test done in August, so I am still waiting for my BRCA results. I was told that this can take up to a year.0
I am quite new to the world of ABC 6 months. Prior to this I was just starting to feel confident about the future and not fear recurrence counting down toward the goal of five years. Just under half way and have an incidental finding of lung mets on my annual breast MRI.
I stated chemo immediately, calyx. Tumours grew slightly after 3 months. Started xeloda in December 2012. I now have subcutaneous nodule below my clavicle. Is this what is referred to as skin mets?
I am worried that I will be one of those that does not respond to chemo and struggling with feelings that nothing is going to work. Sorry to be a downer. I would be interested to read if anyone else has struggled like this. Following the diagnosis I was ready to tackle this, with no real positives since diagnosis I'm really worried about my upcoming scans and surviving greater than two years.0
There was an article in one of the Sydney papers yesterday re triple neg, still a long way from getting something targeted.0
What did the article say? Don't give up, easy for me to say. We are in the same boat, and I feel like giving in. It is just so hard to deal with this, it's just too much. I wish I could give you a hug from Melb to Sydney. Hugs, Renae0
There are so many chemo drugs out there. They all seem to work differently on different women. My magic bullet happens to be abraxane which I take weekly for 3 weeks off for 1. I'll be on that indefinately, but its working really well right now. It did take awhile to find something that worked for me though.0
tlangston07 Member Posts: 81
Count me in also. Stage IV TN from the start in Jan 2012. I was on taxotere/cytoxin, then gemzar/carbo and now fixing to start adriamycin.
Hope-downunder-There are plenty of chemos out there and I have heard that TN respond good to chemo. Your onc will find one that works for you. You are not a downer, we all feel like that sometimes. My mets in my liver grew quite a bit from November til now. The gemzar/carbo did not work for me.
I am so glad for this topic. Thank you, Renae.
joaniji Member Posts: 12
I am here too! Diagnosed stage 2 er+ in late 2004 then with mets in 2008. When cancer spread to my liver in the fall of 2011, a biopsy confirmed that I was now TN. Did a year of Xeloda and am now on Gemzar. Bone and liver are now stable. The best to you all!0
Hi, I am also Stage IV TN. Dx from the get go in Sept of 2012. I've had a lumpectomy then found out I also had a nodule in my lung. Had that Surgery right before x-mas. I am now on Chemo (Taxol). I am having my 3rd treatment Tues Feb 5. So far I still have my hair! I know it will fall out for sure the next 3 months of chemo because I was told it will be much stronger. It is 3 drugs mixed together and I will receive it once every three weeks. The drugs are Fluorouracil, Doxorubicin(adriamycin) and Cyclophosphamide (Cytoxan). After that I am suppose to have 6 wks of radiation. It's a long haul, I am taking one day at time. I have an 11 yr old boy so we are trying to make life as normal as possible for him. What I wish for the most is to know if the chemo is working. My ON told me either it will work or it won't. Pretty much 50/50 chance. I really don't like those odds. I pray they find something more to treat TNBC for us all!
Thank Heavens for this site! Debbie0
I am so happy this thread is bringing us together. You are making yourself known so others with TN Stage IV can be supported. Thank you! Hugs, Renae0
Elisha82 Member Posts: 5
I only have a minute to post....have to get ready for chemo #9-IT methotrexate and s steroid not approved by FDA. Hope all goes well! I'll come back n post more later
Stage IV TNBC and Brac 1+, dx out of the gate in 2008 @ 29. I have been NED since 2009 and I have been on a Chemo holiday since OCt 2009, I get scanned every 3 months. That was the good news the bad after my immune system came back on line it activated an autoimmune disorder called Sjogren's, bacsically my immune system is attacking mositure making organs, I fell like I am on Chemo but I am not, dry mouth, nose and eyes, joint pain, fatigue, and now appears to be jacking around with my diegestive system.
On another good note they think the Sjogren's is keeping the cancer in check. I still have to take alot of medciation to keep the Sjogren's undercontrol but part of me wants the chemo back becasue that means no immune system which equals no sjogren's.0
Elisha, it so good to hear from you, I have been wondering how you are doing? I sure hope this chemo is working for you. How are you holding up? I have read your everthesame blog and feel like I know so much about who you are and that is an angel. You are such an insperation to us all. You hang in there, everyone is pulling for you to have a full recovery so you can go back to life with your husband and son. Keep posting, we care!0
OBXK Member Posts: 689
Hello! I was dx at 42 - in 2003 ER+ . it returned in 2010 as TN - found mets last Oct. (liver and chest node) I am about to have my 5th carbo/gemzar. Scans after #3 showed liver mets shrinking.
I am married to a wonderful man and have 2 boys - 13 & 18.
So glad to have a TN group. Easier to compare treatments and share research.0
Hello. It sounds like you have been through the ringer. I've never heard of that disease. What a catch 22 for you.
I read in your bio that you are still working full time. That is impressive. I struggle to get the most basic housework done, and I am home nearly every day. Of course that may be a lack of motivation rather than fatigue.
Hello to all you other TN Stage IV ladies. It is good to read posts from people who have had similar treatments and experiences.
LuvRVing Member Posts: 2,409
Hi, I'm adding my voice. I was diagnosed with Stage 1 in June 2010. Had a lumpectomy and brachytherapy radiation (Mammosite) then went on Femara as I was "slightly" ER+. In Marcy 2011 I had a huge recurrence with spread to lymph nodes and it was definitely TN. Had a BMX with TEs in April then moved to NH to be with family and go to Dana Farber. I did DD AC/T and got to NED in October 2011. That was a short-lived relationship as a PET in May showed lung mets along with a few other nodes. I did Xeloda for two months with no good results, so then I went to Dana Farber in Boston for a clinical trial drug. Stayed on that until November 5 when brain mets were discovered. Underwent 10 sessions of whole brain rads and then went on carboplatin on 12/26. The follow-up brain MRI looks like the brain mets are resolving. But my CA27.29 has almost doubled and it looks like the carboplatin isn't working at all. The MO is talking about adding Gemzar, I'm wondering about also changing the carbo to cisplatin or a taxol.
In any case, I'm leaving for Kauai on Thursday for 11 days.0
I hope your time in Hawaii is wonderful. Thank you for adding yourself to this thread. Huge, Renae0
That is funny, I meant to type hugs not huge. I did enjoy K F C tonite!
11tyBillion Member Posts: 4
Totally freaking out. I am 2 months past my 3 year "all clear", with TN IBC, and I will be damned if 3 weeks ago, on a fluke, a chest x-ray picked up something "abnormal" in my lung, which was biopsied a week ago -- and it is BC again. For the back story of what happened to lead me to have the x-ray, just do a search my my user name for my last posts. Up until the week after I had that xray and got the "something is wrong news" i had had not one pain or twinge that anything was up. I was still going to the gym, cycling, yoga 2 times a week etc. etc. It is like a firework suddenly went off on my insides.
Yesterday I learned mets to liver and lungs. having PET and CT tomorrow to see jsut where else this has gone. For 3 years I have gone to the gym 3-4 times a week, kept my fat low, you name it. I thinkperhapes those life style change salone may have been the things that allowed me to put off recurrence for so long ( as TN tends to come back rather rapidly many times).
My Onc. has been of the "wait and see" background - which I can kind of understand - because a lot of the tests can give you false positives, AND most cannot see things less tham 1 cm. They watch the bloodwork like a hawk, and any change there would I guess indicate an internal chage. BUT, with me, all my blood labs have been normal. I even heard him say yesterday that my blood labs were compltely fine and normal.
Port gets put in later this week, chemo starts on Monday. Onc wants to start with Navelbine. Any other Stage 4 Tn's out here that can give me some inspiration? I am beyond depressed, crying every chance I get. I have two young children, and this all is breaking my heart AGAIN. originally my littles were 2 and 4 ... now they are turning 6 and 8. After 3 years, I had really "mended" my previous breaks form the first diagnosis. Now I feel as though everything has been shattered again. Every ache and pain I have now (seems like a ton of things have started to "bark" over the past week).
I have been living on Xanax for the past 2 weeks or so. Onc. prescribed an antidepressant and I will be gettign it this afternoon. I was holding off telling my parents until I kknew more bec I did not want to call them up and give them a lot of "i dunno" to thier questions. Now I have the info, and a plan, I can tell them things more clearly.
can anyone out there offer a hand, as mentally, I feel as though i am falling off a cliff?0
Luckily I have an easy job that allows flexibility and is use to having employee's with Stage IV Breast Cancer, when I was dx there was 3 of us me being the baby of the group, sadly I am the one still kicking.
If it wasn't for my sister no house work would get done, she moved back home with the help of one of our cousins. I have to plan my day out in order to have enough energy to get things done, but I barley made it thru this past fall so I am not sure how much longer I can work full time, it isn't just full-time its 365 days, 7 days a week and can be up to 10+ hours during the athletic season. Basically my life is sleep, work, doctor appointments, sleep, work, and a little computer time. If I let myself I can litteraly sleep 14 hours every day but that usually equals more pain from inactivity.
I am actually starting to look at disability since I qualify both with cancer and sjogren's.0
11tybillion - I hope we can talk you down off that cliff. We have all hung from the ledge and know that panicked, desperate feeling when one is first coping with this news. Or any news that means change in to the unknown. We also know the frustration that comes with knowing how well we take care of ourselves - and for what? It just makes me want to punch something. Scream. Cry. Do what you have to. Navalbine is doable - I imagine by now you have found the threads here of women who are currently on it. Once you have the plan in place and a routine you will be able to resume some degree of normalcy. I too have little ones - age 8 and almost 5. I first showed signs of BC while pregnant with the baby. A part of their lives will always be "broken". They know that their mom is broken, but don't know anything different. Let us know how things go with the navalbine. And get to the gym when you can!0
I have been on Navelbine since August 2010. It has been a very easy chemo and has significantly reduced my mets. I actually feel like life is 'normal' on Navelbine. Also, my nurses tell me that when it works, it works for a long time. I met one woman wo has been stable on it for 5 years!
My youngest was 5 when I got my diagnosis in 2009. I was stunned, since I felt fine.
Since diagnosis, I have continued to be very busy: work, exercise and trying to be the best Mom possible. My onc calls me the Eveready bunny! He thinks that my activity is what makes the difference for me. Since diagnosis, I have had mostly stability or regression (knock on wood). My onc keeps on telling me to say busy and not stop. So, I think you are right when you say that your exercise and eating well has made a difference. Don't stop!!! We need to put all our chances on our side!!
Good luck with the Navelbine! I hope it kicks those mets to the curb!0