Any Stage IV triple negatives?

Jollymom · November 2009

I'm a poster on the stage IV boards but am looking for some stage IV triple negatives for support. Ive been on the TNBC website also, but spend most of my time on these boards here. Anyone out there?

LRM216 · November 2009

Jollymom -

A friend told me of another great forum, Aspire.com. I went over there and read quite a bit before I realized that the site is only for Sage IV gals. It seems like a wonderful bunch of gals (a lot of them!), very warm, embracing of all new members and quite a few triple negs over there. If I ever reach stage IV - I am sure going back. Best of wishes to you. I am triple neg as well.

Linda

Nanalinda · November 2009

I am stage IV TN. I developed mets 2 years after my original dx. Please, feel free to PM me. Linda

Lifestooshort · November 2009

Hi,

I'm a stage IV TN as well. Started at a IIb or IIIa and within 18 months or so they incidentally found a lung nodule and had it removed. No current treatment right now but we are watching lymph nodes in my chest. They appeared enlarged two scan ago and with the recent scan they are still there....no smaller, no bigger. Again, another follow up scan to come. He's just waiting for it to grow so he can pounce on it with chemo. Every time I see him he shakes his head with disbelief that it hasn't come back with full force yet. No pressure/no stress eh? :>

Laurie

LRM216 · November 2009

Jollymom - Sorry, I made a mistake. The site I mentioned in my above post is "Inspire.com" not "Aspire.com".

Linda

Anonymous · November 2009

Those of you who are Stage 4... did you have clear nodes and margins? What about microcalcifications or lymphatic invasion? Did you all receive chemo and rads?

In otherwords, was there ever a point where you could have been considered cancer-free but still got mets?

I am trying to live my life, but the next 3-5 years is going to be like having the Sword of Damacles hanging over my head.

LRM216 · November 2009

hhfheidi: Although I am not stage IV, but Stage 1 (at least for now, I hope forever), I do know that there are many Stage IV gals that began at our stages, with clean nodes and margins. While we can only hope for the best, this disease is just so unpredictable and seems to go where it wants to, when it wants to. While having clean nodes and margins is good, there are just no guarantees with this beast. As my oncologist said to me just last week, "If I could promise you that this will never rear it's ugly head again, I certainly would. Just know that we used the biggest guns we had, and your early diagnose and other factors involved were all good, so you must live everyday of your life to the fullest, and do not let the fear of recurrence ruin that." While it hardly consoled me, it certainly made sense. Being triple negative scares the hell out of me, and I try my hardest to push it away as best I can. I must admit, I am not always successful, but I am determined. I don't even get any consolation out of the 2/3 years clean, as some gals on the boards (and the TNBC Board) relapse at all different years out, (as do the hormone responsive gals as well), so is there really any time period where we are REALLY safe forever, I don't think so. I calm myself with the fact that there are so many hormone responsive and triple neg women out there - NOT on any boards, that are living their lives cancer free. We just have to believe, have faith, and go on the best we can.

Linda

jennifer808 · December 2009

LRM216 - TY for the wonderful link to inspire.com. I have a friend who is stage IV and it looks like a wonderful resource - I have already passed it on!

~Jennifer

Duffymom · December 2009

I am a stage IV triple neg. Originally IIIb July '06, chemo, dbl mast, chemo, rads, "cancer free" for 1 1/2 years. Stage IV Oct '08. Monthly chemo ever since. Next scan Dec 10 with results and treatment Dec 15. Gemzar/avastin & Zometa every 3 mos (since I was on it monthly for a year). Praying I'm still stable and can stay on Gemzar. Otherwise will change to Ixempra or Xeloda. What do you recommend? I've heard Ixempra is a tough one so leaning towards Xeloda.

Best wishes to you. I'm glad to know there are other stage IV TN on this site. I don't feel as alone.

Kathy

dillondog · December 2009

Can anyone help with a question? Please feel free to be honest with me. I have a friend that developed a lump around Christmas of 08. She did not tell anyone about the lump due to her husband of 30 years was dying of bone cancer. He died April this year. She finally told us about her symptoms in September. Long story short, she is Stage IIIA Triple Negative. She had a 4.8 cm tumor removed 6 weeks ago with a masectomy. She had 5/12 nodes involved. She is having her second chemo today. My main question is she was diagnosed T2N2A. Does anyone know the significance with the N2A part? Also, she is dropping weight. Around 3-4 lbs. a week although she eats quite a bit of carbs and proteins. She has also had dizzyness.

Anonymous · December 2009

Another TN Stage IV here, 33 y.o. Originally IIIa June '08, neo-adj chemo, mast, rads, "cancer free" for 9 months. Lymph nodes swollen in Nov '09, positive biopsy. Xeloda since then. MRI, bone-scan and CT results are not in yet so we don't know where it is exactly yet.

Answer to the question above - 1/24 nodes on mast, clean margins, no evidence of anything...

dillondog · December 2009

Is the weight loss and the dizzy spells anything to be alarmed at???

thenewme · December 2009

Dillondog,

You would probably get more responses if you start a new thread since this thread is for stage IV triple negatives.

So sorry your friend has had such a bad year! Here's a link for more information on breast cancer staging : http://www.cancerhelp.org.uk/type/breast-cancer/treatment/tnm-breast-cancer-staging

Basically, the N2a part means she has axillary (armpit) lymph node involvement.

As far as the weight loss and dizziness, it could be related to the chemo or from the terrible mental and physical stress she has been through, or a number of other things. What does her doctor say? Hopefully her doctor is monitoring those things and treating her appropriately, as long as she lets them know what side effects she's struggling with.

Best of luck to her, and you too - she's lucky to have a friend like you!

LRM216 · December 2009

You are most welcome, Jennifer.

Linda

mossybaby · December 2009

Hello - I am here as well. I have a very aggressive brca1 fueled bc that has been resistant to the various chemo's thus far. I'm off the Ixempra & Xeloda now since they didn't stop the progression. Looking into clinical trials involving PARP in combo with Gemzar & Carboplatin.

Jollymom - I noticed you are in TX. Have you been to MD Anderson since they are supposed to be so good.

I'm here to talk anytime. Lots of Love - Yvonne

steeny107 · December 2009

Hi Guys

I just joined stage IV yesterday brain mets.

I was Dx June 09, did six sessions of TAC 4 week off then double Mx and AND 5 weeks started rads and had a recurrance in lymph nodes on collar bone, put on Xeloda. During the neck chest CAT they seen something on the brain, MRI showed 2 small spots on left middle cranium. Monday we decide on treatment. I had no symptoms for brain.

I am TN brac1 and dealing with all this within 6 months.

Had a brain MRI in June at the start it was clear. So when did it start in the brain, while doing chemo or since I stopped chemo?

Michelle

Melanie36 · December 2009

Hi Ladies (Jollymom),

I am a 36 year old mother of 4. Dx Oct. 6 with BC and 14 hours before surgery (Nov. 23) was dx with Stage IV mets to liver. Tumor in my breast and on liver are roughly 5-6+ cm. Surgery was canceled.

Just found out this week I am TN. My chemo has been delayed and delayed for various reasons (I live in Canada) and am now sched. for chemo to start Jan. 6

I am terrified of chemo and really question whether the "squeeze is worth the juice". They are talking about putting me on FEC-D.

I am also seeing a Homeopathic Dr. and the 2 couldn''t disagree more on what my treatment should be. I never knew breast cancer was so political.

I am considering going to MD Anderson or even Oasis of Hope in Mexico.

How have you all responded to chemo?

Looking for wisdom,

Melanie

yellow · December 2009

dillondog

I take emend which helps with dizzyness and nausea its expensive but worth it.

Anonymous · December 2009

Hi Melanie,

Sorry to hear you have Stage IV. Usually TN responds well to chemo. My wife had the FEC a year ago (when she was still concidered Stage IIIa) and responded very well. But each human being is a whole world so you cannot predict exactly who and how will respond. Anyways, if the FEC fails (I hope it will not), there're many other treatment options today. People leave years with mets and manage them as you'll see on these boards.

Take care,

Yan

Melanie36 · December 2009

Just wanted to update,

Went to Dr.s on Dec. 23rd and instead of discussing my chemo that was supposed to start Jan.6, he put me on Xeloda starting Christmas Eve.

I know I'm only 4 1/2 days in but so far only mild nausea, tiredness and a slight metallic taste in my mouth.

Anyone else have similar SE? When should/could I expect the dreaded Hand and Foot Syndrome? I know not everyone gets it and they get it to different degrees, but are we talking days or weeks or months here??

I'm on 3600 mgs/day.

Melanie

Anonymous · December 2009

As far as I know, the HFS usually hits on the second cycle. My wife is in the middle of this second cycle (two weeks then week off) and didn't experience anything yet besides the fatigue (which can be explained by a flu she's got now). And she's on 4000 mgs/day. So everybody reacts very very very differently.

Hope you'll never have any severe SE and the drug will work for you.

Take care,

Yan

Judiiiii · December 2009

Melanie, I was on Xeloda for 4 years and did experience HF syndrome. It likely has been mentioned somewhere on the forum, but I used Bag Balm twice daily. I started using it the day I started Xeloda. You must keep on top of it. What cycle it appears, if it does, is very individual. If you get it, make sure you show your onc your hands and feet on a regular basis. I know of several women who landed in the hospital and unable to walk. This severity can usually be prevented by lowering the dose and/or using a moisturizer (absolutely try Bag Balm).

Best of luck to you. Judi

steeny107 · December 2009

Ladies my update is I do Cyber knife for my 2 brain lesions next week. From the sounds on here it is not too bad one hour procedure, however many hours planning for measuring and such.

Alot of inspirational stories on here, thank you I hope to join you and be around for a good few more Chrismas's with my 7 year old.

Michelle

carpediempenny · January 2010

Hi all, I am a stage IV. First dx Sept 07, chemo, rads, dbl mastectomy, free tram flap recon, now here we go again. I had a lymph node behind breast bone they were watching and finally did a biopsy and it was cancer. Waiting two years! They should have tested it the first time. I did radiation first this time around and just had another port put in to start chemo Jan. 8th. Has any one been given Abraxane and Avastin and did you loose your hair? Thanks Penny

Kim_888 · January 2010

I'm Stage IV, TN, mets to bones. I also have a history of Hodkgin's disease. First diagnosed with BC in 2001, opted for mastectomy. Recurrence happenend in '07. I've been on Xeloda, Avastin, Navelbine, Taxoter, and Doxil (current). I'm only averaging 4 months on these drugs before they seem to become less effective. With Xeloda, I got severe HFS on my feet after about 3 months. Now, on the Doxil, HFS has reared its ugly head again, but this time it started on my hands, then feet. I now have it on my elbows, under armpit, inner thighs. Its very painful and I'm either going to have to skip next treatment or definitely have a lower dosage.

I just keep truckin' along like the energizer rabbit. Good days, bad days, mediocre days. I'm never going to give up and hope you all don't either.

Kim

Pamsbc · January 2010

I was diagnosed in Sept 09 with a 2 cm triple negative tumor. After three rounds of a/c, the tumor had not shrunk. For that reason, the surgeon proceeded with double mast and reconstruction. The tumor was still a little over 2 cm in size when they removed it during surgery. Has anyone else had an experience where the tumor did not respond to chemo. Everything I read, said that TN responds well to chemo. They removed 15 lumph nodes, only one showed cancer which is good, but there was only a 1 mm margin between the tumor and my chest wall, which is also a concern. I will begin taxotere on 1/21,for 4 rounds to hopefully take care of any remaining cancer cells. Any one with a similar diagnosis ??

Duffymom · February 2010

Just came back to this thread and realized that 3 days after I posted Dec 8 I found out the cancer had gone to my brain. I now have an ommaya reservoir in my head and have weekly chemo injections. I am on Xeloda for the other cancer. Lately been doing well, little side effects. One scary time of confusion in hospital where I didn't even know my birthday and 3 days of double vision that was very scary too. Told I have "months" to live. Some days I handle it better than others. Am back to working 3 days a week and feeling a new "normal". Hang in there triple negs! We are a strong and fierce bunch of ladies!

Kathy

cwrightrn · February 2010

HI there Ladies....I've been off for awhile after seeing so many sisters lose their battle...just got too hard. But a friend encouraged me to get back on since I am now Stage IV....and need support.

Inflammatory breast cancer diagnosed 2/09, neoadjuvant chemo with ACT -- PET scan pre op showed NO cancer but at the time of bil mastectomy, there were 2 small lymph nodes that were positive and it was in the lymph channels. Radiation was done for 7 1/2 weeks and I opted for more chemo--carboplat and taxol--hoping to ward off a recurrence. That ended 12/1/09 and then had elevated liver enzymes. I did a PET 2 weeks ago and it showed 12 small mediastinal lymph nodes that were positive....wow--it was back FAST! So I am now stage 4. I started avastin and abraxene this week( I'm destined to never have hair again!). I'll do it 3 weeks on, 1 week off for 3 months then re-do the PET scan....if the cancer is gone, we will continue maintenance chemo, if it is bigger or has spread, I was told there are 8 other drugs we can try. I am not a candidate for PARP's because I did carboplat. I did a brain MRI on Friday... so we'll see what that shows.

That's my story....thanks for listening

Carole

Any Stage IV triple negatives?

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