Triple negative beyond 2 years- What was your treatment?

mom2k

I had a mastectomy 3 years ago, and am a triple negative.  I had A/C then Taxotere, then 6 weeks of radiation.  I've been fine since, and am down to visits every 6 months to my oncologist. 

I am, however, still experiencing a bit of "chemo-brain" so that's a bit disconcerting.  But I'm happy to be alive! 

Kim_888

i was DX in 2001, Stage 1, opted for mastectomy.  Developed recurrence with bone mets in 2007, now Stage IV.    Been on chemo for 15 months and will be pursuing the cyberknife.   I hope to kick this cancer back into remission.    It has been getting harder, but I'm not giving up.  Not for nothing.

jezza

Does anyone know how long there has been testing for triple negs?

I was dx 17 years ago and apparently they didn't test for it then. (at least in Aust. so my GP said)

There may be lots of triple negs around who were dx before this testing was done.

What I'm saying is there may be lots of NED triple negs living healthy lives who can't give others hope cos they never knew they WERE triple negs.

Long winded I know....but you get what I mean....

 jezza

tibet

Kim888

Did you have chemo ack in 01 the first time? Usually for TN, after 4 yrs it is rare to hav recurrence, or is the 07 a new primary possibly and in 07, did you have no node involvment also?? Sorry to ask questions....I am just a desparate newbie that are scared....

Did you also have family history and did gene test?

Kim_888

Hi,

No, I didn't have chemo in 2001.  I was given the option to receive chemo or forego it.   See, I had a Hodgkin's Disease (lymphatic cancer) in 1988 and treated with chemo.  Because I had a very large amount of a specific drug at that time, my risk of developing leukemia was very great.  My oncologist conferred with several others and in a 6-1 decision, all felt that it may be prudent to forego chemo.  So I did.   Radiation was never an option because I also receive signficiant mantle radiation in 1988 --whcih is probably what caused this BC in the first place.   My BC was detected with a lumpectomy.   I then followed up with mastectomy and axillary node removal.  I did not have node involvement then.  I do now. 

 At the time, I also opted for immediate reconstruction and had a tissue expander inserted at the time of the mastectomy.   My cosmetic results were outstanding.   (I've since had the implant removed). 

'My recurrence returned in the form of a lesion on my sternum. I had been doing gardening work and thought I just overdid myself.  It took from May 2007, until October 2007 to get a firm diagnosis that it was a recurrence of the BC.   During this time, I experienced excruciating pain in my chest, like nothing I have ever felt.  It was severe and chronic.   Once the cancer was confirmed, I went through a battery of other tests and commenced with chemo in December 07

I was on Xeloda, Avastin and Zometa from December 2007 until October 2008.   Xeloda was convenient because it is in pill form and was easy to take.  Unfortunately, I developed hand/foot syndrome severely from this medication and had to stop.  I am now on Navelbine, two weeks on, one week off, Zometa monthly and Neulasta every three weeks.  

My May 2008 PET/CT scans showed signficant improvement while initially on Xeloda.  September scans then showed signficant progression.  My January 2009 scans showed signficant improvement compared to September (after only two cycles of Navelbine), but were not quite as good as the May 2008 scans.   I am getting restaged again this week with bone scans and PET/CTs.   I'm hoping for some good news.

 Please let me know if you would like any additional information.   Take care,

Kim

Yukon

I am a triple neg dx in Aug 06 had 4 DD A/C, and 6 weeks of radiation, Just had my 2 1/2 year check up on 3-20-09, and everything is A-OK. All blood work is normal. I opted for lumpectomy.

FloridaLady

Kim,

What a story. Girl you been through way to much. I hope you get a excellent report. I will also have Pet scan this week for staging.... I pray we both get great news.

Flalady

Kim_888

Keep me posted Florida Lady.  For me, the anxiety before and after the tests is worse than the tests itself.   I'm trying to stay positive, but I know what I'm up against.   I just had a bone scan yesterday, too.  Last week, we had my January scans re-read and there's been some lumbar involvement detected.  I hoping these new scans show a decrease all over or at least in the new area.   If I get that little bit of news, I'll be thrilled. 

I wish you well.  

VickiG

Kim ~ I was on Navelbine, too, and it kicked some serious cancer butt ~ I also had an immediate response (I could feel/see the difference in less than a week!)  I hope it continues to do the trick for you.  I'm thinking of you this week while you wait for your scan results.... wishing you the very best!!!!!!

FlaLady ~ hi!!!!!!!!!!  Also thinking of you w/ your PET this week.... well, always thinking of you anyway, you know that, but especially this wk waiting for great results.

I had my CT done yesterday... now just have to wait patiently (ha!) to find out how things look.  I hate the waiting.... it sucks.  I think I'll do some serious cleaning/organizing around here today ~ the waiting days seem to give me the nervous energy to attack the clutter.

Kim_888

Hey Vicki,

Thanks for the support and the feedback on Navelbine.   I'm hoping for some good news.  I did get good news from the cardiologist today....echocardiogram was normal, no evidence of damage from the previous rads.  So far, so good.  The cyberknife is getting closer.....

 Take care and good night,

Kim

hani76

My mom has been diagonised with triple negative breast cancer 3 cm 8/20 nodes positive. She has just started her Chemo and I'm planning to stay with her for the rest of the treatment. I know there is a long journey ahead and my mom asked me if all this Chemo is worth because she is node positive and is triple negative. I said yes of course! But I didn't believe it in my heart with all the negativity surrounding triple negative breast cancer. I'm following the stories of all of you survivors out there and in my mind now I know for sure that I'm not lying to my mom and I can picture her with you all. God bless you and give you more courage to beat the crap out of cancer.

sharebear

I've had it twice now. The first time at age 32. I had a lumpectomy, 28 nodes removed all neg, radtiation, and 5FU. Second time at age 44 I had bilateral mastectomy, I'm having a moment and can't remember if it was 5 or6 nodes removed all neg., dose dense AC, weekly taxotere.

I'm now on my 2nd year cancer free. I did find a tumor on my pituitary 1 year ago.  It had been bleeding and I could feel the bleed (head felt strange and I called my onc.). Found it on a brain MRI. I also have epilepsy which is under control with meds so I'm very intune to my head. Most people don't feel pituitary tumors bleeding.  So we watch this now. Onc. doesn't think it's cancer because it would have grown larger by now. It has grown but very little. Not the way cancer acts. Not worth risk of surgery and surgery is the only way to determine if this is cancer.

But I feel great!  Still have some steriod weight which has been very hard to lose. I just don't have the energy I use to and I do have some neuropathy in my back and ankle which make it difficult to exercise. If my legs only looked as good as my abs do! I had tram flap reconstruction and my stomach is nice and flat. My legs look like I'm 80!  Does anybody remember the storybook "The Saggy Baggy Elephant"?

MsBliss

Your description sounds like mine--but I have not started chemo yet.  What was the nature of your tumor?  Was it "tentacled" or rounded and well defined?  I am trying to learn about medullary cancer and it is often triple negative, but triple negatives are rarely medullary.  I may be moved to the medullary categogy, but I don't know enough about IDC and triple negatives to know where I am category wise.

DonnaDio

Juat found this thread.  I am a triple negative . HAD DCIS, DX in Nov. 08 and had a bilateral MX and recon. 1-20-09. Currently on my third day of chemo..T/C.! Will be doin this every three weeks until June 10th. Need to get educated on what the future holds bein a Triple negative!!

I do know that if i had not opted for chemo, 67% versus 85% better shot for no reoccurrence in a 10 year mark. Hope this makes sense, i am a bit out of it today!!!!

I have been proactive in my health in the years and especailly with my breast cancer dx. Now i know i need to get better educated for the future. Not sure beng third day of chemo is the time to do this!!!!Good to know this is going.'

Thanks,

Donna

DonnaDio

Also.. will be haivng ovaries removed once all of this is done and am stronger!!!Had the BRCA Gene test, not a  carrier for  BRCA 1, just a insignificant variable found and will look into that also.

kelty

For those who's starting chemo, here's a great website where the owner of the company gives away free silk wrap or scarf.

http://www.franceluxe.com/i/goodwishesscarves/Good+Wishes+Scarves.html

mary57

Hi,

I was just diagnosed with Stage IIa,Grade3 nodes clear 0/6.  At first it was diagnosed as invasive ductal CA, but aftrer lumpectomy the final path report calls it neuro endocrine breast cancer.  I have been told that this is very rare with only 30 reported cases reflecting about 2-5% of all breast cancers.  To top it all off it is triple negative. I am being treated at MD Anderson and they have little info on this type cancer.  The treatment is also unknown!   I am bit overwhelmed and not to mention scared.  I am trying to keep a positive outlook.  I see the Onc. next week for 1st visit.

Mary 57

Please keep me in your prayers.

FloridaLady

Mary,

Sending prayers your way. I've never heard of this kind of bc.  Keep us updated on what you find out.

Flalady

MsBliss

Did you do chemo in 2001 and if so, what kind?

Meece

Triple neg dx November 2003.  AC x 4 Taxol x4, 30 x rads.  I had a lumpectomy.  Waiting right now on a re-do of a skeptical mammo and a stereotactic core biospy on the 22nd, on the other breast, but I made it five years without an issue...so to speak.

kismet16

I am searching for someone to be an example for me but perhaps I can be for someone else. I was diagnosed April 18, 2008 - Stage IIIC, 28/31 postive nodes. tumor 1.5cm. I did 6 months chemo and 5 weeks of radiation. I am hoping I qualify for a clinical trial that would be a vaccination to prevent my cancer from coming back. I'm still here.

Shirlann

Hi sisters, I had no treatment after rads.  That was 11 years ago.  So far, so good.

Hugs, Shirlann 

fierce1

Hello everyone! I was diagnosed June of this year... so I am not a "survivor yet"... unless you call surviving the treatment!!!   I still feel like it is good to share though even though I am still in treatment.... I originally went with the lumpectomy but margins were not clear so had the mastecomy and lymph nodes all out....about 2 weeks later.  Actually gave me a major sense of relief as they were no other cells found... anywahy then I started on a very new protocol... actually a phrase III trial.  I currently receive cytoxan by mouth every day .  I then get doxyrubicin once per week and neupogen shots everyday.  I am about half way through this cycle.  It is getting rougher ... then I get a two week break and go on to taxol once per week for 12 weeks then I go on a Carnival CRUISE!!!  This chemo course is an ongoing study across the U.S. and Canada... it looks a dose density and making sure the cells are DEAD.  The neupogen has kept my blood counts normal and I have managed to work full time!!  Hope this helps.     

Danesrock

Hey Fierce1 - I to did a similar clinical trial.  I completed mine 3 years ago.

I'm a stage 3A, grade 3, triple negative, 4 of 22 nodes bad, 5 cm tumor.

Doc recommended the trial - I had cytoxin every day by pill for 15 weeks, weekly infusion of andrimycin, + nupagen each day except Adrimycin day.  Two week break and then Taxol every 2 weeks for 12 weeks. 

I had a lumpectomy - they were able to get clear margins. 

My doctor explained the trial - as they give you smaller more frequent doses of the medicine, the goal is not to allow the cancer cells a chance to regroup, with steady hits of chemo over a longer period of time.  Who knows, but I'll take any current treatment they will offer.

Be sure to keep eating nutrition and try to walk a little every day for strength.

Are you on Taxol yet?

GrinAndBearIt

I am two years past chemo this week. I had triple negative breast cancer. I have a bi-lat mastectomy with immediate flap reconstruction AFTER I had my chemo. I had four rounds of A/C and could not do the Taxol because I was too sick after A/C.

So far, so good.

fierce1

Hi Danesrock.... sounds like the same trial!!!   My Taxol starts in December... I have about 8 more doses this of adriamycine/cytoxan and of course neupogen...   How did you do through it all?  I assume you are all clear at this point??  I have been a little nervous about doing this trial but I feel it is a little more aggressive than traditional treatment and that it will give me a better outcome... Walking is tough because my feet are really sore on the bottom... apparently chemo will do this?... I do have to force the eating at this point but am really trying.  I am so glad to hear from you!!!!! 

Fire44fly

Sadie-Rose,

I'm almost 2 years out and I had a lumpectomy followed by a mastectomy and then this year I had the other breast removed.

hubby42

You can be an example for me!  My wife was found to have a 3cm with 14 /17 nodes positive and you are the first I have come across with more nodes than hers.  She is not even 8 months into the diagnosis and still in Radiation.  We are hoping for the best and seeing your post gives me more hope!

KPolasek

This is going to sound silly .... but I have never asked and am not sure ..... when do you count from as far as being "cancer free?"   I was diagnosed 10/07, Chemo started 12/07 and completed 2/08, did 33 rads and finished 5/08.  Do I count from diagnosis or last rad treatment?

I am having some pain in my right side, just under the rib cage more to the back .... and I am beginning to worry ... I had a total hysterectomy over 10 years ago so I know it isn't my ovaries ... any ideas?

 Thank you!

Blessings,

K

stlrepke

I don't know about anyone else but I've always counted from the time of diagnoses. The first time I was diagnosed was April 2002...DCIS 4cm Stage IIA 0/4 nodes Triple Neg. I had a lumpectomy and then did 6 rounds of chemo, don't remember what I got and then 6 weeks of radiation. I did well, no recurrence but I'm afraid I did end up with a new breast cancer diagnoses for the opposite breast this September and as I sit here I am two weeks out of my dbl mastectomy. The tumor is the same as the last except it is smaller....DCIS 2.5cm Stage IIA  0/4 nodes & triple neg. Come to find out I carry the BRCA 1 gene so next week or the following week I will be having a hysterectomy. I need to do everything I can to be here for my 3 yr old and 16 month old. So I will be doing a new regimen of chemo but at this point I'm not sure if I will have to do radiation.

Every year you go without a recurrence makes it less and less likely to have a recurrence and that's important for us triple negs. I know everyone is different and for me, I will probably never feel 'safe' again. I will continue to worry every year and fear that it will come back but hopefully it will at least lessen over time.