Triple Negs - Fall 2008 Update

Hi All,

My name is Debbie, had right mast 10-2, and first AC with ? avastin (in clinicial trai E5103) on 10.31. I am still not feeling too great from chemo tired and with much movement nausea. emand and compazine and ativan help. Thought i would just check in. I also have on my path report that it is metaplatic do any of you have that??   Blessing to you all and I will check back soon, Deb

Flalady ~ sooooo happy to hear Ixempra is working for you, and so quickly, too!  It seemed to do nothing for me at all, but Navelbine showed signs of working in less than a wk, so it's definitely just a matter of finding the right thing for each of us at the right time.  Good for you for getting your work schedule adjusted ~ hopefully you feel better with a little more time to be home & more comfortable.  Take care of yourself!!!

FlaLady,

Sooooo glad you're seeing improvement on Ixempra+Avastin.  Hopefully you and doctor can come up with something that will tame the neuropathy.

I am still nervously waiting for the next scan (still another month or two).  Since June 06 (mets dx) I have gobbled up multiple treatments (Avastin+Taxol, Carboplatin, PARP Inhibitor, Navelbine+Xeloda, Avastin+Ixempra, and now Doxil+Cytoxan).

Hope for the best outcome for all of us TNs!

Hi Everyone;

I am a triple neg. I have done TX (taxotere & cisplatin), then (Admircyin & Cytoxan) Had a radical double mastectomy, found 3 positive lymph nodes and cancer on the chest wall. Having to do chemo (Taxol & Carboplatin) every week for 3 month along with radiation everyday except the weekends. Isn't that nice they gave me the weekends off. Yeah! LOL Found out I  am a triple neg too. So no Her2. Not sure I understand it all, though I will soon enough. Me and the internet are good friends. I hope everyone has a blessed evening;

In God's Grace; Elizabeth

sftfemme65

why did ou doctor five you avastin? Is it because you have 3 nodes? I have 1 node with 1mm in. My doctor doesn't give me avastin Does Avsstin help?

I've had triple-neg BC twice.

In August 2005 (eight months after a clean mammo), I went to doctor to check a rapidly growing lump that I thought was a cyst. Ha! Turned out to be a 4.5cm medullary tumor. Clean nodes. Had a mastectomy, followed by dose dense AC/Taxol.

Routine mammo in April 2007 found a 1.2cm tumor in "good" breast. Was IDC, so hadn't traveled from first tumor. Had second mastectomy, followed by 12 weekly Carbo/Taxol treatments.

I'm more than a year out from treatment now and I'm feeling fine. Still see oncologist regularly but I feel really hopeful.

--CindyMN

Sftfemme65:

I am TN with 4 positive nodes, had reconstruction 5 years after BC treatments.  I thought, immediatly reconstruction after the major surgery might affect my recovery, later treatments and exam.  After 5 years, it seems stable, then I had reconstruction. 

Hi,

I was dx in March with invasive, aggressive IDC node involement triple neg, had left mastectomy in April, started chemo in May.....FEC x 3 and then taxotere x3 and then moved on to radiation in Sept. Tolerated all my tx without any major problems so was very lucky in that respect

Now I'm just taking a deep breath, have been pretty positive through out but now that i have finished tx my mind is beginning to wonder to places it shouldn't be. I will be going for the gene testing as i have a strong family history...sister passed away from IBC when she was 40 and as well did an aunt in her 50's,  the only problem is it takes so long to get the results up north here. I've heard some have to wait 9 months to a year. I have a younger daughter so want to have that information more for her sake down the road also it might make me think about the ovaries and other breast and what to do with them.

So it's time to get back to my happy place and stop obsessing about things that i cannot control and get on with life as i've done all i can for now ......other than waiting for my hair to grow, happy to say i'm in the peach fuzz stage but still don't have enough to keep me warm on these colder days.

It's nice to know there is a place to come for support and questions .......even though we have triple neg we can still make it a positive !

Cheers ! 

I hear you angels ..... I have been thinking a lot about it all now too .... I have almost decided to go ahead and have a mastectomy (had lumpectormy, chemo and rads).  I just had a re-occurence scare and I did not like it ..... so, I think right after Christmas I am going to get it done.  I am thinking about a re-con later ..... I try not to dwell but that is easier said than done.

Blessings,

Kay

(((flalady))) you rock.

I am post TN dx for over 7 years.

I had a lumpectomy, rads, and chemo.

I did have a new primary, but that was ER/PR+. It has nothing whatsoever to do with the TN dx.

I had a bilat, chemo and rads.

I had my exchange surgery in June, had an implant replaced in September, and if all goes this one will stick.

My sister was dx'd with TN four years ago. She had no chemo but had a lumpectomy and rads and she is NED.

TN is a disease that was ignored for too long. But that has all changed and they are finally finding ways to treat it and win.

Don't lose hope! TN responds better to chemo than ER+ and there are lots out there to choose from.

Hugging all my TN sisters,

love,

g

I am new here and thought I would share my mothers story.  She was first diagnosed with bc 2 years ago.  We were told it was caught early and had not spread.  She chose a lumpectomy, chemo and radiation.  I am not sure of the exact type of cancer she had but was told it was a positive + type.  Now, 2 years later, she has been diagnosed with Triple Negative Metastic BC of the lung.  Is is common for BC to turn into a different type of cancer?  If it is in the lung is that worse than other places?  She is scheduled for a MRI this Wednesday and an Echo gram as well as a PET scan.  I've read of people who have it in the brain and are doing well.  Any info on this would be greatly appreciated.  Also, did many of you get second opinions?  We live in MT and although we have several cancer centers here, they are not well known.

Hi ladies,

I was dx'd on September 29th, 2005.  I had pre-op chemo (adrimyacin, cytoxan, carboplatins and taxol), a bilateral mastectomy, and 36 rads. 

I often live in fear of the aches and pains that other people get to view as "normal." 

I'm doing well.  Every time I pipe up, "I'm scared!" the doctor I am saying it to kind of rolls their eyes and says, "IT'S NOT BACK!" 

So, after 3+ years I am creeping back to a cautious "normal." 

I don't think we ever take a complete sigh of relief, do we? 

EDIT TO ADD: I forgot to say, "I LOVE YOU LADIES!" 

I was diagnosed in May.  June 20th I had a lumpectomy with 0/5 nodes and clean margins. I have since had 4 rounds of A/C and will be getting my very last Taxol on this coming Friday.   Rads will begin in January.  After reading this post, I will probably ask my Doc if I can have Lxempra too just to be safe and sure.......if that is at all possible to be!  

I too seem to be sooooo afraid of recurrance......especially since I am TN.  Yes, even though I am just  now ending chemo, I worry aobut every ache and bump.  I was feeling so safe while on chemo that despite the S/E s  I am almost afraid to go off of it.  This is definitely not a healthy  thought process but this disease seems to do some  some twisting of the thoughts as well as the breasts.

Flalady, thank you for starting this thread.

I was diagnosed Jan. 2007, triple neg, node neg, IDC. Took on TACx6, which is what my onc. said was the nastiest chemo. Did a bilateral mx in late Sept, immediate DIEP/SIEA. Stage II reconstruction in Feb.

Had some aches and pains in late May so had a PET/CT which came out all clear. I swore I wouldn't think about cancer for at least a year. I experienced some aphasia that I attributed to chemo-brain. I think we all do that when we get fuzzy and forgetful. I had afternoon headaches now and then. Then the dysphsia got markedly worse - I wouldn't speak if I could help it, especially complex concepts. Then it got worse, and I couldn't even say 'scripts' that I had been using for instruction and evaluation in my profession for 20 years (dental hygiene). The headaches became a daily afternoon occurrence - but I thought maybe it was high blood pressure (though it had always been low). Sometimes I would lie down to go to sleep after reading for an hour only to feel a pounding in my head - racing up to 100 beats per minute. Weird!

My brain mets were diagnosed last Fri. night, via MRI, when my symptoms became intolerable. I cannot blame my treatment - chemo does not cross the blood/brain barrier. I took my treatment and felt confident. I wanted to believe it was chemo-brain. I don't think one can repeatedly poison the body and not have all sorts of side effects. For all I know I was Stage IV at diagnosis. My sister's metastasized in 9 month's time (after treatment) from a tiny 7mm node neg. tumor. She didn't have an MRI either until she had symptoms. Mine took about that long to manifest symptoms too. It's a crap-shoot.

I don't relate this story to frighten anyone. I always read the descriptions of mets patients and thought "Oh well, but I didn't have 4+ positive nodes" or "Heavens, that was a 6cm tumor!" - but I knew that there but for the Grace of God...  You can do everything 'right' and still have mets, like me. You can have everything going against you and be years and years out. Thank God for that. We can only do what we can do - and that is live for the present day, love our families and friends and try to be good people. Whether we have 2 years or 20.

Lisa