Topic: Are you Stage IV & Triple Negative?

Orig dx: 4/23/08 stage IIIC, grade 3, 16/22 pos nodes, margins clear - BRCA 2+ (chemo & rads)

recurrence: 3/15/09 to 8 brain lesions,leptomeningeal, liver, hips, lymphnodes & sternum (WBR, rads on sternum carboplatin 3 so far and intrathecal methotextrate 2 so far.

Carynnrose: your an inspiration keep up the good fight!

Can i add another question?

How do you deal with your down time as far as feeling low? 

Ekenny,

To be honest with you, I haven't known to be that scared.  Maybe it is ignorance.  I'm taking it one day at a time and when my doctors tell me that they have something to try/use, I do research, but for the most part, trust them.  I had no idea that the 'stats' said that I had 4-6 weeks when I found out I had lepto mets.   I found a lady who'd been on the same treatment and was 18 months and hung my hope on her.  She was about to go on a cruise.

 I am beginning to understand how someone in my situation can start to peter out.  I haven't had the chance to fully recover from my treatments and often just as I'm near where I  was, something else happens to knock me down again.  I can see how eventually someone would be so exhausted by the treatment as to say "enough".

I'm not there yet and I intend to be around and enjoying my life and the lives of my family for quite a while, but it's weird straddling living fully and preparing for death at the same time, knowing, ultimately, it's in G-d's hands.

 Caryn

Thanks ladies! It is interesting to see everyones history.  I also take a lot of supplements while in treatment. I've been able to work my job pretty much full time until my recent lymphedema issues. I do believe it has help me have a life in the middle of bc.

Caryn - I'm with you...I not ready to quit yet. Some days are bad now but most I have quality of life. I remind myself daily that it is in God's hands.

I hope we have other join this thread. I would also like to mention a few sister we have lost this year. Please add anyone I missed.  AlaskaDeb, Calgal, Twink, Slonedeb. I miss them all.

I also would like everyone to keep our sister other TN sister Pinehouse in thoughts and prayers. She is in great need right now.

Flalady

Hi everyone.  Unfortunately I am here to join your group.  I was originally dx in July 06 with TNBC stage 1, grade 3, basal type.  Had lumpectomy in September 06, no node involvement, clear margins.  Started TAC chemo 11/1/06 had last chemo 2/14/07, then Rads (I think it was 33).  I was in the process of trying to get my life back, and was finally beginning to have days go by without thinking about breast cancer when one day in July 08 I noticed some swelling and soreness in my left arm (side of the lumpectomy) and I thought darn it.... now I have lymphedema.  My arm was quite sore so I went to see my primary care physician.  She ordered an ultrasound to rule out a blood clot.  When the US tech left the room and came back with the Radiologist, right away I thought Oh Oh.  The Radiologist explained that there was no blood clot, but they found what appeared to be multiple tumors in my left chest and supraclavicular lymph nodes.  They got me right in for a PET scan which also revealed an 8.5 cm mediastinal mass, and a T4 tumor.  I had a bone scan which was negative.  I started Taxol/Avastin on 8/1/08 (on 3 weeks, off 1 week).  I had another PET scan in Jan. 09 which showed that the supraclavicular tumors were almost totally gone, and the chest mass was much smaller, but it also revealed that I now had T3 and T5 tumors in my spine along with the T4.  Since I had a negative bone scan, an MRI was ordered of my spine, which confirmed the tumors there (apparently some tumors do not show on a bone scan).  I was started on Zometa in January.  A few weeks ago, I noticed some pressure in my left neck, and could feel the tumors again.  I had my last Taxol/Avastin 2 weeks ago since it has obviously stopped working (after 10 months), and I had a new scan today.  I see my oncologist next Tues. to see what the scan revealed, and where we go from here.  She mentioned Xeloda at my last appointment so I believe that is what will be next.  I was disappointed that the first chemo only worked for 10 months, and I hope the next one will work longer.  I find that I have had more down days lately, and that I worry more about how long I will be around.  I try to keep those thoughts away, but they sneak up on me and they scare me.  Linda

I visit this sight to see how you girls are doing but I don't post very often. I am also triple negative. Was diagnosed with stage IV first time around in December 08 , mets to liver.

2/09-4/09  4 A/C treatments, shrunk liver tumor

5/09   Laproscopic Liver Resection to remove tumor

5/09  Pet Scan NED

6/09  12 weekly Taxol

The ONC says she will recheck my ER/PR status with the liver tumor they removed. Have not gotten any word yet. I am happy about NED but worried that after my taxol their will be no drugs to take to keep it away.Deanna

orig dx (on rt breast at least!) Jan 07-- rt mastectomy with one close margin. 4x3 cm ILC mass, trip neg nodes clear. A/C &T chemo till July 07.

Aug 08-- reoccurrence to mediastinum and ct found 7x5 cm mass and pleural effusion. started rads x 33 tx and had total 5 thoracentesis within 3 weeks to clear effusion. Last rads oct 08 then on to abraxane & avastin chemo. Skin mets now found.

Jan 09-- hospitalized for 2 weeks couldn't breathe thinking mass getting bigger or PE, but results showed radiation pneumonitis so on oxygen 24/7 for about 3 months and now off of it totally. Mass has continued to shrink with each scan!!  Skin mets stubborn.

Present--continue on abraxane and avastin trying to knock out skin mets.

Geez we women go through alot!

Hugs all,

Pat

Catkc,

Glad you found a great support group.  I have to say I have the best Christian cancer support group ever! I just don't know what I would do without them.

Flady

I really have no desire to go to a live support group, even though there are some close enough.  Most of them are for early stage women, and they are scared of us metsisters.

This, and tnbcfoundation.org, are my support groups.  Suits me fine.  Most of the time I need support is when I'm awake a two am, anyway.

Original diagnosis Stage2B IBC, no lymph node involvement. Mastectomy, right breast in Aug 2006 and TAC chemo until Nov 14, 2006.

In May, 2008 started having low back pain. The whole 2 years I had been going to my original Onc. for port flushes and every 3 months blood test and nothing ever showed up. Went to see Orthopedic surgeon who orderd MRI with the results of Degenerative Disc disease. That was in July2008. But my back just kept getting worse to the point sleeping was impossible. My hubby took me to his Othopedic group and the spine doctor took one look at the original MRI and spotted a lesion on L1, then he read the report which said L1 &2 were normal. He ordered another MRI which came back with multiple lesions from T10-S1, one lesion on upper arm and a couple of suspicious areas, too small to diagnose on lower lung and liver. So far I've completed 18 sessions of radiation, which really did a number on my stomach and am into my 2nd Abraxane chemo and 2nd Zometa. I have more good days now that off radiation and hope that will continue. I'm reading a book Battlefield of the Mind; it's a devotional by Joyce Meyers. I have been a Christian for many years and am grateful for that. This book makes it so clear how the enemy puts negative thoughts in our mind to make us depressed and hopeless. We must use that as a signal to reject those thoughts with the power of the Holy Spirit and use the same words Christ used when he was tested in the wilderness. He always came back with "It is written", He used the word of God to fight off those negative attacks. This is something we cannot do on our own, but only by the power of the Holy Spirit. Hope this helps someone.

I wrote out my novel yesterday & lost my internet cx, so I'll try again now:

Dx 6/07 IDC, TAC 7/07-10/07, bimx 11/07, rads 12/07-1/08

3/08 dx stage 4 (mediastinal nodes) ~ Rads 4/08-5/08, Taxol 4/08+

7/08 skin mets ~ Ixempra/Xeloda

10/08 inguinal node mets ~ Navelbine/Avastin

12/08 progression ~ CMF

 1/09 progression ~ Gemzar

3/09 brain mets ~ Gamma Knife 4/09, Doxil

6/09 lung mets, inguinal & iliac nodes ~ Abraxane, rads to inguinal nodes & superficial rads to approx. 5x6" area of chest skin mets Whew, think that's it!

I just went from 2x week back up to 3x week abraxane and avastin and last dose was 6 days ago.  The usual achiness came on day 3 post tx but then last night I started with REALLY bad aches to knees, hips, shoulders and I felt like a 90 yr old.  I took motrin then rubbed icy hot on my hurting right knee then wrapped it with an ace wrap and went to sleep.  This morning I was still achey and when I touched the knee it felt bruised.   All day today until just now I did nothing but lie around hurting and that is so not me.

Tomorrow is another tx and I just hope the effects aren't worse.  Heck I've been on these meds since November and never felt this way.  Feel like I was hit by a truck.

wayover,

I hope this next treatment is gentle for you.  I have my 2nd treatment of the thermdox trial thursday.  I not looking forward to it either.  This will be chemo tx 52...I think I'm just plain tired of chemo and the side effects.

I put on a pain patch today and itch like a dog with fleas.  I don't know if I can stand this thing.

Flalady

Vicki, you're taking it once every 3 weeks??  So are you thinking that it's a bigger doseage right now and if you were to take smaller doses every week then se's might be less??   Might work but when I first started A/A back in Nov. it was 3x week and never felt as bad as I did last night/today.  So I'm not sure if the fact that I went from 3x to 2x then back to 3x is why my body is reacting.  maybe it's accumulating or something.    Up till now A/A was Very tolerable for me so I wouldn't worry about trying for weekly.  Maybe this is just a one time occurrance for me but it sure was bad.

pat 

Hope tomorrow is a better day for you! 

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