TNBC with mets to lung

Well, I feel like I'm in limbo. And I guess technically I am. I was diagnosed in July, 2012 with bilateral triple negative IDC. I finished chemo on November, had a bilateral mastectomy in January and finished radiation the end of April. During radiation, I had a CT scan that showed mets to my right lung. Are you kidding me? After all that treatment . . . There are 3 nodules and they're all small so far. Now I wait until July 22nd for another scan. If things are worse, I will start on Xeloda. If things are the same, I guess I wait some more. I feel great and am having a hard time wrapping my head around the poor prognosis that the doctors have given me. How can I be "dying" and feel so good at the same time? Is there anyone on here who has had any success with treatment for TNBC with mets?

Peace ~

Jessica

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Jessica, I am so sorry that you are having to deal with this! I am not TNBC but there are many on this site that are and will be along to answer your questions. Many ladies are having success with different treatments, my question is why is your onc waiting to start treatment why not start treatment right away to get it under control? I would maybe go for a 2nd opinion I believe you should be starting Xeloda now.

Hugs,
Lisa

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Lisa:

I did get a second opinion, at Dana Farber Cancer Institute - one of the best cancer centers in the country. They agree with my oncologist's plan. The thinking is that right now, the nodules are very small (mm size) and I'm feeling great so why give me something that will likely make me feel crappy. They feel that waiting 6 weeks isn't going to make a huge difference. Of course I'm anxious while waiting! Xanax has become my best friend!!

Jessica

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Jessica - I would certainly be taking Xanax also....LOL! So glad that you are feeling great, hope it stays that way for a very very very long time!

Hugs,
Lisa

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Jessica, it is definitely a shock to be diagnosed with mets, and my heart goes out to you. From what you describe, it sounds as though you may have oligometastasis, which is one or very fre mets confined to one organ only. Some studies have shown that surgical removal of the mets may lead to longer term survival, and even in some cases, to a cure (and that is not lightly said!). Here's an interesting link that you perhaps might consider discussing with your doctor. http://www.licr.org/index.php//predictors_of_cancer_progression/

Whatever your treatment, I hope the outcome is excellent!

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Kanakila, I am TNBC. I just got diagnosed with a lung met earlier this year which kicked me from stage 3a to stage 4. It felt like a kick to the gut. Plus mine was found because I had a lung doctor due to the pre chemo scarring on my lungs, and he wanted to check up on me. Wasn't found from a cancer follow-up! At first the surgeon didn't want to do surgery to remove it, but my oncologist is a bit unorthodox and told him that if we can remove it, then get it out. He knows I am aggressive in my attitude towards this disease. I am now NED (no evidence of disease). There are also SRBT or (SBRT is what I believe they label it in the States) treatments. I have a couple links that Natada, Bestbird and a few others sent me.
This is a link from a study/trial from Canada for SRBT, but it at least gives you some info.

http://www.canadiancancertrials.ca/Trial/Default.aspx?TrialId=NCT01803542&l ang=en

Oligo-metastatic is when you are having only 1 to 3 mets in a localized area. I believe that is the term, google it and you will see.

http://www.ncbi.nlm.nih.gov/pubmed/22532161
is another link I was sent.

I will look through my computer a little later, I have other links I will share with you.

hugs Rose

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Hi Jesica!

Sorry your TNBC has mets! I have TNBC and just had a bone scan to see if I have bone mets as I been having pain in my bones, especially my hip and rib! We shall see!
I hope you find the answers you are looking for! Keep us posted and stay strong my dear!

Hugs
Diana

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If your Mets are post chemo, why wait??? As the previous posters have advise you well. Whichever decision you make, I wish you well. Take care.

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Hi Jessica,
Sorry you are dealing with all this. My tnbc came back right away after chemo surgery radiation and reconstruction. I couldn't believe it came back right away.At first it showed up in lymphs but mets to lungs, bones, chest, etc etc. I started on xeloda/avastin combo right away. I am still here almost 5 years later. However I have been on chemo or clincal trials the whole time. I felt great on xeloda...some of the other chemos were not so easy for me, others were. some worked for a while, some didn't. Everybody is different. I guess one thing I would put "out there" to think about is that as a tnbc patient it is always important to be up to date and have access to clinical trials. I know I would not still be here without access to trial drugs. Do you live near Boston?

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Kelly:

Your response made my day! I really need to know that there are TNBC "survivors" out there! The stats are grim and my docs are giving me a poor prognosis, maybe just so they don't give me false hope. I had 16 weeks of chemo, bilateral mastectomy, then radiation and during radiation found out about mets to right lung. So mine came back right away too! How frustrating is that??? I do live near Boston - about 40 minutes north. Do you live in this area too? When I went for a second opinion at Dana Farber, they took blood and requested tissue from my surgery so they can test both for 2 separate clinical trials for future use. They agreed with my onco's recommendation to wait 6 weeks, scan again, then if necessary start Xeloda. I'd love to know which drugs and trials you've tried and how you did on them. THANK YOU for the encouragement!

Jessica

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Dear Kanakila,
I am TNBC too with mets to a rib and lymph nodes. Originally diagnosed in 2011, Mets showed up last month. I am on Abraxane now. Can I ask you something? When you say mets to lung, do you mean the lung itself or lymph nodes?

Thx

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Sorry for not complteing my post. My actual question should have been- did they do a PET scan to confirm. I had small nodes show up which disapeared on the next scan. Then I got mets to the opposite side. So those little nodes were nothing and sometimes they show up as a result of radiation also.
I think that is the reason they want to wait and watch.

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Rafi:

I had a CT scan, then 4 weeks later a PET scan. I have 3 nodules in the actual lung. The docs seem pretty sure it's not just from radiation, etc. but I am still hopeful that it will all be gone when I have my next scan.

Jessica

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Hi rafi
Had breast cancer of the left breast.then after operation gave me ct scan.shiwed it has gone to both lungs.im in a trial drug over here in austrakua called T-DM1.its just been pasted over seas.i have uncureable cancer as well. But hope this new drug will put me in remission.just had my 2nd treament wednesday.having test in august to see.fingers crossed. Gloria

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Hi Gloria,
I have read some very good things about T DM 1 for her 2 positive cancers. Best of luck and keep us posted.

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Hi again rafi
Had my 2nd treament wednesday.
feeling fine.the only thing I have had this time is my potassiom droped to boarder line.so im on 2 slow k tabkets a day.blood fine now.last nite had temp but not enough to go to hospital.i no when its coming on.my face gets very hot. And when it cools my temp goes down.i had this with the first treament .it came on me 3 days later.and lasted 3 days as well.told my kemo dr she said never heard this drug doing that.so its doing it again.very strange.i dont feel sick at all. Gloria from australia

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We did the "wait and see" with the 2 nodes in my lungs in spring of 2010. We took a break from the chemo and they just hung out there for 4 months without changing. When it started to, that's when we did the radiation with the cyber knife. It was really scary to wait for it to be on the move, but the break from the chemo was pure bliss!

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They sayhere nodes but they are really tumours.i have them all over both lungs. No cancer any where else in my body.i had it in my breast which then went to my lungs.but feel great and am very postive woman. I wont get up to stay alive.and all my susters on here to. God bless you all gloria

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Hi there. I have the same dx as you....Bi-lateral TNBC w/lung mets (both sides). I am doing Neoadjuvant chemo. 2day 10th infusion (5b cycle). Was given 2 chemo options. C/T or Carbo/Gemzar. Chose Carbo/Gemzar due 2 more success rate w/TNBC patients. Also, made nutrition changes that have helped me w/side effects. I was given 6 mos frm my 1st onc that was in Jan/Feb & I'm still blessed to be physically be here. My scan of May 26th showed no evidence disease of my left breast 1-2cm mass, my right 6.5x6.7x6.9cm mass shrunk to 3.9x4.7cm mass. My multiple lung masses shrunk so much, current onc monitoring 1.7x1.9 cm mass right lung. I know it's easier said then done sometimes, but STAY STRONG & HAVE FAITH :)

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Kelly, were the clinical trials you were on in Boston for a parp inhibitor ?

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These doctors should not be "giving you six months", or any other figure. Everyone is different. I know many women with tnbc that have lived years.

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