Calling all TNs

Cat - I hope you can find a trial in your area, maybe Emory has enrolled in some.  

Inspired - I have IDC, not IBC, but thanks for the references.  I did read through some of the TNBC questions, and YIKES.  Almost all the responses were "prepare for the worst" and stated that the people should "get their affairs in order."   I had to stop reading.   I don't think I want to get a second opinion from them if that is their attitude.   I did ask about recent protocols, but expect them to say to pay them for the second opinion.

I got a link from tnbcfoundation and am looking at several trials in my area.  I will need to read more and discuss with my MO.

Bak - so happy about your doggie being B9.  I'm interested that your doc said he wanted to try Herceptin.  I've actually wanted to do Herceptin even tho I am low (neg) HER2.  I just have been reading so much that it is found beneficial in TNBC.    I'll have to see what the biopsy shows.

Aeryno:  Yes, I too was thrown into menopause - in December 2011.  It may have been from the surgery or surgery/stress combined, as I stopped having the period right before start of chemo.  I also had the joint issue but it cleared up on its own about 18 months afterwards. It used to be so bad that I was not able to bend down to wipe the floor, now I can bend down and my knees are fine. I also couldn't get up from a dining chair at a restaurant if I had sat too long.  Now everything has returned to almost normal.  I have a little numbness on bottom of my toes but I only notice when I work out really hard.  Your joint pain might resolve itself over a period of time.  It does sound like you are making progress on things, and I didn't know acupuncture could be so beneficial! For me, the key was to keep moving, and not let my body get sedentary or stiff for too long of a time, so I pushed myself to continue workouts and exercises until my joints returned to normal.

BAK I didn't want to read your second post but I am so glad I did.  I am so relieved you don't have to go through the heartache of losing dear Romi.  He is one great beautiful cuddly bear and so precious to you (and me).  No wonder he feels like a puppy he has got a reprieve, hopefully a long long one.  Best bit of news for the day. Tessa also has a soft lump on her tummy but the vet told me it was a fatty lump that older dogs sometimes gets so I've never worried about it.  Now for Chloe I do believe she is growing into a (big girl). She doesn't harass the cat anymore, probably the cat thumped  her.  No she's been good lately although she still pierces my eardrum if she is sitting on the back of the couch and a dog walks past the house.  I do believe there is hope for her yet!!

Cat on top of all your anxiety you now have more.  I remember reading all those stats, links and whatever when I was first diagnosed but the wise ladies on here put me right on that issue and told me emphatically not to read them.  If I remember correctly, America has some of the best oncologists and surgeons in the world so why would you want to read a load of bull on the internet and most of it out of date anyway. We are not "preparing for the worst"  or "getting affairs in order".  I told my oncologist a long time ago what I had read and she said do you think we don't keep up with  the latest on cancer issues so that we can give our patients the most appropriate treatment there is for their kind of cancer and therefore the best opportunity to beat this beast.  I thought yea she has a point.    Don't forget we are in your pocket and we are there for the long haul  We've got your back covered Girl.  

Bluebird I hope today has been a bit better day for you love.

Kath {{{{{{ where are you}}}}}}.

Cat- sending warm thoughts and wishing you an uneventful procedure today.

Bak- yay!! B9 for your dog!!

Bluebird-thinking of you.

Cocker- I've been thinking about Kathy too. Maybe she won a ton of money and is out and about spending like crazy!!

I am back.  The drugs worked pretty well but they had to kinda keep waking me up a little so I could hold my breath when they instructed.  Ended up with a small pneumothorax anyway and they had to stop.  I just hope they got enough tissue.   The pneumothorax looked stable so they let me come home.  On pain meds now.   Meet with MO on Friday for results.   Thanks all for being with me!  I have to bed rest for the next day or so. 

CatWhispurrer, so happy it's over. In your pocket for fri. apt. take it easy and do something special for yourself!

CatWhispurrer,

I googled best treatment for metastatic triple negative cancer and a bunch of good links came up, including NCI list of trials for TNBCs. For some reason it's not letting me copy and paste the links. One was a Dana Farber slideshare presentation, "Targeting Advanced Triple-Negtive Breast Cancer."

I've heard good things about eribulin for metastatic TNBC.

Have you posted questions on the stage 4 board? They are very knowledgeable.

Hi all, It's been a while (about a month) since I've been on the boards. It sure did take a while to read through everyone's posts. 

I first want to let Cat and Bluebird know that I'm thinking of them and praying for them. Stick with the women here for support and encouragement. We're here for you.

I had some issues with low wbc's and platelets, so my chemo regimen was altered. I'm now trying  DD carbo/gemzar every 2 wks, hoping it starts to shrink these nodules on my chest . Cat, my recent PET also showed some uptake in the medialstinal nodes. I don't know when my next scan is, but when I get it I'll let you know if the carbo/gemzar worked on it. It's not a difficult tx, just tiredness about 3-4 days after infusion. I woldn't have known of the low blood counts if it wasn't for the tests, really asymptomatic. My MO was concerned about bleeding, but I'm not even bruising.

Thank you Inspired for all of the info about new tx and trials. My MO advised me to wait to see if C/G is working , but she's already thinking of what trials would be good for me. There are a few at Penn, where I'm currently being treated.

My BS was highlighted on our local news. He's heading a trial, now in phase III. Its immunotherapy, where a patients own wbc's are removed, somehow altered to make their body view it as a foreign body, then put back in their body. The bodies immune response goes after the cancer and eats it up. The trial was only for DCIS, but in theory I would think it would work on all cancers.Treatment is specific for the individual. Phase I and II had tremendous results. I don't have a link, but if you google Dr. Czerniecki Breast cancer vaccine and fox 29, I'm sure it would come up.

Welcome to the newbies. 

Cat and Bluebird, know that you are in my thoughts and prayers!  Stay strong as this too shall pass.  

Sharon will do.  Hope everything goes well for her. 

Someone from another thread called Bluebird's DH. Tumor is 100% gone & she went home today! He said she should be back here in a couple of days. Praises!

In addition to what Sharon posted, I have received the same info about Bluebird (Kristine) and they found no other cancer in her body as well!  

Cat, thinking of you for your Friday MO appointment.  

Cat, we're in your pocket as you go for your results today.  (((hugs)))