Calling all TNs

lory-glad your friend's lump wan't anything bad, and I hope your spot turns out ok. yes, those fires are scary, hope everyone gets out ok and that the fires miss their homes. Just such devistation.

Inmate-hope you had fun at the zoo! much too hot for me to do anything like that! do you like this hot weather? I am happy that there is sunshine!

Inmate - I'm sending my warmest hugs as you tackle the crappy hand you have been dealt.  Our jails are full of no-good people and then very good people get cancer.  I just don't understand!  But I've rolled up my sleeves and am ready to fight with and for you.  Watch out F'n BC!

That black puppy is just about the cutest thing on 4 feet.  I'm not a big dog person but I can see how people can go bananas for such a cute critter.  Inmate, good luck with hubby.  Perhaps one of those cuties could "follow you home."  I'm sure he (puppy) would be a comforting companion and along with him (husband).

Blessings to all, Jan

I'll echo the cancer sucks mantra. Inmate, I hope the chemo knocks it back. You deserve better!

Inmate - adding my voice to the cancer sucks chorus....echoing what Wrenwood has written about you.....and sending a big hug xoxo

Inmate~ your fine Dr will find the right cocktail for that sneaky fucking cancer!  Keep up the fight!!  Best thing that happened to me yesterday was being able to spend time in my perennial garden.

Inmate - just saw your update grrr, f*cking cancer. I'm thinking positive thoughts for you and your doctors to come up with a working treatment plan.

I'm back after awhile away. I went on my vacation as planned, and had a great time visiting family, hitting the beach, swimming, all the things I love. The rads burns have healed up very nicely and are for the most part gone, just pink skin there now. The rads also don't seem to have deformed the breast too much, yay, because if my PS tells me I need a tram flap instead of just an implant I am not going quietly.

The main lingering problem I have is fatigue. I get home from work, eat dinner, and pass out. Sometimes even before dinner. I hope this goes away soon, I'm getting nothing done and no time with my kids. 

I see the rads onc the 28th, the plastic surgeon the 5th, hopefully all is good so I can start closing this miserable Chapter 2 of my #$!% TNBC. It is a bummer indeed, ladies, to have the beast return when I was finally feeling happy again. But I am trying to just stay in the present. Funny, I keep trying to set up travel opportunities with my family and they say yeah, maybe next year... They just don't get it. I don't know how long I've got and I want to spend it doing fun things NOW with the people I love.

I do have some questions for those with a local recurrence... I heard somewhere this makes me Stage 4. This doesn't seem right, because the PET shows it was local, no mets. Also, do I worry about mets from the old original cancer they removed back in '08, or mets coming out from this new tumor that popped up last May? If I have another recurrence, will it take another 3 years to show like the last? I bet even my oncologists won't hazard a guess...

Inmate-did you ever do avastin? how about any other triple negs? are they still able to prescribe? it was a strange one for me, i had it with abraxane and had nosebleeds, but not much other se's. at one point my doc said he was going to keep me on it after surgery, but when my results came back he changed his mind.

Minxie - glad you had a great vacation and you are on the mend from the rads.  I agree - you had a local recurrence, that does not make you Stage IV, as it wasn't in your bones or organs.  When I had my recurrence last year,  I was staged as 3b because my intermammary nodes were involved.   

I saw my Dana Farber MO today and I am set to begin a clinical trial using ARQ-197. This trial is specific to metastatic triple negative BC, and I will be one of 26 in the US on this trial.

http://www.clinicaltrials.gov/ct2/show/NCT01542996

http://www.dana-farber.org/research/clinical-trials/clinical-trial.aspx?tid=2726

The drug is administered in three week cycles, and I will take it orally twice a day...for as long as it works. This will work with our trip to Hawaii and so I am extremely happy that Dr. Chen agreed that this was a good one for me. It seems clinical trials are all about timing - showing up at the right time when a trial is opening or about to open and meeting the inclusion criteria. Lots of bloodwork and scans, but I see that as a good thing - someone is keeping very close tabs on this nasty beast.  She does a lot of research and I have to think it's good for her career to have a patient who's one of 26.  I am feeling very lucky today.  The trial should start within two weeks so I will be waiting impatiently for the all-important call from the trial nurse.

Luv - I'm so thrilled to hear this good news. I know you're "one in a million", but in this case, 1 in 26 is even more special!!!!

Inmate I was so sad and angry when I read your post.  As kind as these doctors are its time they got their finger out and came up with the right treatment for you.  You have courageously tried everything so far  with so much optimism and hope and it is time this cancer was kicked to the curb.  Your strength has helped all of us and I know you can beat this again.  I can't even swear at it anymore as it doesn't seem to hear us.  I know you will go on a trial and this time the sucker will be put to rest once and for all. Thinking of you with love and tears and sending the biggest hugs you have ever had.

Get a little dog like that one in the picture, your hubby will love it and it will give you something extra to fight for.

As for Mandy she went for a biopsy and the radiologist that did it said it looked like a haematoma that has been there for a while.  It kept moving around and she had trouble taking the biopsy. We will get the results in a week.  Makes me so mad we have to keep waiting but still keeping my fingers crossed.  I have made several bargains with God so I hope he hears me.

I have come home from radiation with a rotten cold and I feel gastly so I'm going to bed.  Blessings and heaps of love to you all.  Annie xxxx                  

BTW, Bernie, is your picture before or after treatment?  It looks fantastic and straight, very envious.  I sort of like my hair and if I can pull some of the curl out I really like it but my God, I did not expect to be such a poodle head!

Inmate - tons of prayers and love coming your way for all things positive. 

Luv - so happy for you that a trial has been chosen - one step closer to taking this beast down.

Annie - what a horrendous rollercoaster you and Mandy are on.  Keeping everything crossed that this will be just a nasty memory real soon.  I know only too well how hard this is on both of you.

Mags - congrats - keep on keeping on!

To all:  sending positive vibes and hugs to all -

Navy: I'm on their mailing list - I've sat in on two teleconferences, one of which was TN. Can't say I learned anything new. 

Luv: Thrilled that you got in on that trial - you will be followed very closely, which is a benefit all on its own - and then hopefully the drug will be the magic bullet. 

Minx: Ditto what Luv said; a local recurrence is not considered stage 4.  

(((Inmate))) - hope you had a fabulous zoo day.  And speaking of clinical trials, have you looked into them?  There should be some options near you - you're in Seattle, correct?  Gotta be a big cancer center with some promising trials.  Like Luah said, the additional testing makes it very worthwhile.  And most of the drugs out there being trialed have already been tested with other types of cancer.  So it's not a total "shot in the dark." 

Navymom - I'm not being contacted by that organization.