Topic: Triple Negative Stage IV

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Feb 1, 2013 03:56AM

Posted on: Feb 1, 2013 03:56AM

Renae64 wrote:

This is a way for us to find each other, please add your post so everyone can be found. We can discuss on this thread (hope this works out!)

Dx 4/3/2012, IDC, 3cm, Stage IV, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 4/24/2012 Lumpectomy: Right
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Feb 24, 2015 08:19PM CatWhispurrer wrote:

Glad this topic came up. I was just diagnosed with brain mets today. Get my treatment plan tomorrow - probably WBR. I am so scared.

Tina / Chemo: Dose Dense 4 AC / 4 Taxol every two wks for 8 cycles / 33 external RADs after Chemo, 3/2014 Stage IV chest/lungs -taxol, 8/26/14 cisplatin, 2/24/15 brain mets-WBR radiation Dx 10/27/2011, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 12/7/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 3/14/2014, IDC, 1cm, Stage IV, ER-/PR-, HER2-
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Feb 24, 2015 08:37PM Adnerb wrote:

Cat,

Sorry about the brain mets. Carolben and Keldel have the same thing going on and I think they are both getting the WBR. What were your symptoms?

I was thinking about you! It might be because I've had progression and my tumor area might be big enough to be biopsied and sent to Caris or Foundation One and I thought about you first because I heard that you had it done. Do you think the genomic profiling helped?

What happened to the trial you were in? Are you still?

Big hugs for you.

Brenda

Brenda S. "Do not go gentle into that good night...Rage, rage against the dying of the light!" ~Dylan Thomas Dx 7/16/2005, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Chemotherapy 10/1/2005 AC Radiation Therapy 3/14/2006 Breast Dx 7/28/2009, IDC, 3cm, Stage IIB, Grade 3, 0/6 nodes, HER2- Chemotherapy 10/1/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 9/11/2013, IDC, Stage IV, 1/0 nodes, mets, ER+/PR-, HER2- Chemotherapy 10/1/2013 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 3/7/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine) Hormonal Therapy 11/7/2014 Faslodex (fulvestrant) Chemotherapy 3/1/2015 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 7/7/2015 Ixempra (ixabepilone)
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Feb 24, 2015 09:37PM lotusblossom wrote:

Hi Smiley47,

I was ln Taxol for about 16 months before progression. My onc then switched me to Navelbine, which I tolerated well for 2.5 years. It brought ne to NED. I have been NED and out of treatment for the past 12 months.

Lotusblossom

Dx 6/5/2009, Right, <1cm, Stage IV, metastasized to bone/lungs/other, mets, ER-/PR-, HER2-
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Feb 25, 2015 11:22AM CatWhispurrer wrote:

Thanks for all the advice.Today, i got all measured, a mask made and started the first treatment. He said I might start seeing improvement by tomorrow. That would be great since I am having trouble walking and dressing. I will go every day for at least 10 treatments.

My first symptom was weak left leg and knee buckling. The next day, my left arm became weak and hard to lift.

Yes, I like the gnome testing I had done as it gives me more treatment options if regular ones stop working.

The clinical trial stopped because the felt the drug they were testing wasn't doing the job expected. It was only Phase II.

Tina / Chemo: Dose Dense 4 AC / 4 Taxol every two wks for 8 cycles / 33 external RADs after Chemo, 3/2014 Stage IV chest/lungs -taxol, 8/26/14 cisplatin, 2/24/15 brain mets-WBR radiation Dx 10/27/2011, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 12/7/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 3/14/2014, IDC, 1cm, Stage IV, ER-/PR-, HER2-
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Feb 25, 2015 12:10PM lbgal wrote:

Cat, sorry about the brain mets, I don't know much about it but there seem to be many ladies here who are doing quite well.

On the lung/pleural mets topic - I just had my fourth chemo (carboplatin/ gemzar). It looks like it is working because there is almost no fluid in my lungs. The surgeon said he might remove the drain tube in 2 weeks yaay!

I am hoping this will bring some encouragement to others that might struggle with the same issue!

Big hugs to all!


Dx 7/2012, IDC, 4cm, Stage IIIA, 10/18 nodes, ER-/PR-, HER2- Chemotherapy 8/1/2012 AC + T (Taxol) Surgery 1/12/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 3/2013, IDC, Stage IIIA, ER-/PR-, HER2- Chemotherapy 3/1/2013 Xeloda (capecitabine) Dx 9/9/2014, IDC, Stage IV, mets, ER-/PR-, HER2- Chemotherapy 1/5/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Feb 25, 2015 01:58PM keldel wrote:

Hi Cat

Glad they got you started so quick.  I know I felt improvement after one or two treatments (and they have me on Dexamethasone).  For me part of the fear was not knowing much about what to expect from WBR.  My oncologist says its very effective.   I had 10 treatments in December.   My MRI shows about 30% or more shrinkage so far and apparently it can keep shrinking them for months.  I am still fatigued, have short term memory and some concentration issues and am a little unsteady.  I take a cane with me when I go out anywhere.  I am not driving as I dont feel it would be safe.

  I wish you good luck with your treatment.  There is a brain mets thread you may want to check out.  I have done some posts there too.

Hang in there.  You can do this.

Kelly

TNBC,AR-,BRCA1/2- 01/2014Mets:Thyroid,NeckLymph Nodes,Lung.12/2014Mets:Brain Dx 1/6/2012, IDC, 6cm+, Stage IIIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Surgery 2/7/2012 Mastectomy: Right Chemotherapy 4/15/2012 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Radiation Therapy 9/13/2012 Breast Hormonal Therapy 11/9/2012 Dx 2/7/2014, IDC, Stage IV, Grade 3, 1/1 nodes, ER-/PR-, HER2- Chemotherapy 2/13/2014 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 10/30/2014 Lymph nodes Radiation Therapy 12/15/2014 Brain
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Feb 25, 2015 06:56PM SpiritBlessing wrote:

Hi Ladies,

I have popped on this board before and I wanted to check to see how things are going for everyone.  I am in the process of retiring early and wanted to know if any of you could help me with any info or details if you have done this as well.  I am currently working full time and have been since my dx back in 8/13.  I worked from home the 6 months on chemo and came back to work 5 months ago while I am still on the study and on my targeted therapy of Avastin (every 2 weeks) and a pill, Terceva/Erlotinib daily.  So far have been on this for 9 months and have done very well.  My last CT scan was still showing shrinkage on the 2 nodules left on the lung.  However, they told me there is a small area in a lymph node behind my stomach that is of concern so they want me to have a PET scan to be sure.  So far I am showing 85% shrinkage of the nodules so that is awesome and my tumor markers are normal.  I am certainly praying that this is nothing and just a weird thing showing up.  They said the saw it on the last CT a couple of months ago and this time it showed some growth. 

So this has made me start considering to apply for social security disabiltiy and I hear that some diseases are pretty automatic and will be allowed so that would be awesome.  Just wanted to know if anyone has gone this route?  Of course my biggest concern is medical and will I be able to continue my treatment at the center I am going too now in Seattle once I am on medicare.  I checked my 401k and I believe I am reading it correctly when it states that I can apply for my retirement as a disability with a letter from my physician.  So that was hopeful.  I would be on COBRA for the first 18 months which will be good.

So anything you can offer or share would be appreciated.  I will be checking this thread more often.  I am on a different thread for Christian women and there are only a couple of gals with TNBC but they are not mets.  It is not the same when we share things and so I thought I would pop in here again.  Hope to hear from you all for info and encouragement.

Thank you, Lucy

Do not be afraid - I am with you! I am your God - let nothing terrify you! I will make you strong and help you; I will protect you and save you. Isaiah 41.10 Dx 8/28/2013, IDC, 3cm, Stage IIA, Grade 3, 0/0 nodes, ER-/PR-, HER2- Surgery 9/18/2013 Lumpectomy: Left Dx 11/5/2013, IDC, 3cm, Stage IV, Grade 3, 0/0 nodes, mets, ER-/PR-, HER2- Chemotherapy 11/25/2013 Abraxane (albumin-bound or nab-paclitaxel)
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Feb 25, 2015 07:45PM lbgal wrote:

Spiritblessing, I am glad you stopped by! This seems to be sometimes a very quiet place. I guess each of us have found some other little groups and we just stop by here every now and then. I do check it daily but postings are not that frequent :)

I'm sorry I don't know anything about disability, but I'll very very happy if you want to share what you find. I'm 46 but I was born in Europe and I only came to the States 17 years ago. I've been constantly employed since then, but it's been increasingly hard with stage 4 especially with being in and out of hospital. So I thought if I leave my workplace I won't have an income, but it's good to know there are options.

Dx 7/2012, IDC, 4cm, Stage IIIA, 10/18 nodes, ER-/PR-, HER2- Chemotherapy 8/1/2012 AC + T (Taxol) Surgery 1/12/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 3/2013, IDC, Stage IIIA, ER-/PR-, HER2- Chemotherapy 3/1/2013 Xeloda (capecitabine) Dx 9/9/2014, IDC, Stage IV, mets, ER-/PR-, HER2- Chemotherapy 1/5/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Feb 25, 2015 08:06PM CatWhispurrer wrote:

Spirit - I went on SS disability last year and it was easy and fast. The office did most of the work. Stage IV is fast-tracked after a note from the doc. I was off work for a year which might be a requirement. I got backpay for the year which was nice.

Tina / Chemo: Dose Dense 4 AC / 4 Taxol every two wks for 8 cycles / 33 external RADs after Chemo, 3/2014 Stage IV chest/lungs -taxol, 8/26/14 cisplatin, 2/24/15 brain mets-WBR radiation Dx 10/27/2011, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 12/7/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 3/14/2014, IDC, 1cm, Stage IV, ER-/PR-, HER2-
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Feb 25, 2015 08:18PM lbgal wrote:

Spirit, in addition to what Cat said I found this message on another board

Jan 27, 2015 06:18PM Sarah0915 wrote:

Breast cancer with metastisis to a distant site such as bone, brain, or liver automatically qualifies for Social Security Disability (SSDI). It qualifies as a "Compassionate Allowance" case which is fast tracked. That is supposed to be picked up from the diagnosis in the application, but I called and talked to a representative at the local office to make sure my application was flagged for speedy processing. There is still a 5 month waiting period and a 2 year waiting period for Medicare, no exceptions. You really don't want to hear my opinions on that :)

Dx 7/2012, IDC, 4cm, Stage IIIA, 10/18 nodes, ER-/PR-, HER2- Chemotherapy 8/1/2012 AC + T (Taxol) Surgery 1/12/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 3/2013, IDC, Stage IIIA, ER-/PR-, HER2- Chemotherapy 3/1/2013 Xeloda (capecitabine) Dx 9/9/2014, IDC, Stage IV, mets, ER-/PR-, HER2- Chemotherapy 1/5/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine)

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