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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.

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Posted on: Feb 1, 2013 11:56AM

Posted on: Feb 1, 2013 11:56AM

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 26, 2015 05:00AM Adnerb wrote:

I'm a retired public school teacher. I worked an equivalent of 8 quarters before my teaching career began. I need two more quarters to qualify for social security benefits. Does anyone know what 2 quarters mean in terms of how long do I have to work to earn that?

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 27, 2015 08:54AM SpiritBlessing wrote:

Evening Ladies,

Lbgal - thanks for the welcome.  Do you recommend any other boards?  I really like the one I am on as we are all way involved and we all posts daily for the most part.  Huge support group and wonderful ladies.  I really feel a genuine closeness and care and concern.  Sounds like your employer is supportive.  I have a great employer as well but I am getting tired lot more these days and fatigue is pretty daily now.  I think it is just time to take this next step and spend the last years enjoying some of my time and not just working.  Also, thanks for that post from another board. It doesn't state the lung as part of the mets so I was wondering if it was an oversight. I have mets to my lung.  I don't understand at all why there is a 2 year waiting period for medicare, that makes no sense at all.  The whole purpose is o get medical coverage during this time of SS disability. So what about obamacare?  They should have changed this policy during this major change on "everyone should have medical", right?

Cat - I am glad your experience was fast with ss security, that is promising  I figured I would need a letter from my MO.  I don't think you need to wait a year to be off work.  I was told you can actually work but can't collect/earn more than $1,090.00 per month.  Which is great but I have to figure out what I need to do and how to go about it all.  I also found out that my 401k is open to me as well with a letter from my MO so that will be nice too.  I will have COBRA as an option as well for 18 months at least, then obamacare for the remaining 6 months before medicare would kick in.  I have some options with my employer hopefully so that will be good and my hope will be to talk with them in the next couple of weeks.  God willing...

Well thank you so much for your input and advise.  I will share what I can and maybe help someone out here.  Thanks again...have a restful sleep...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 28, 2015 07:56AM AimeeMac wrote:

Hi Lucy,

I haven't been on these boards for several months, and have been thinking about you and our text conversations. Decided to get back on and here you are! I am in the middle of applying for SSDI, and to echo the other ladies, a stage IV diagnosis is pretty much an automatic approval that is pushed through in a matter of weeks instead of months (after they get your medical records). I am a few years younger than you, so don't know about the medicare stuff. I was also told that your benefits would start 5 months after your last day of work, and you will retroactively receive benefits if you have been off work longer than that. I went out on disability May 3rd, so will be paid for November forward. However, I have been receiving LTD benefits during this time, so I think I have to hand that check over to Liberty Mutual to recompensate them for what they have been paying me.

I am glad to hear that the clinical trial we talked about several months ago seems to have been good for you. I have had gamma knife for mets to the brain that worked on the 9 originals, but two new ones have shown up so we are taking a look at those at the end of March. I have a CT on Monday with results on Wednesday for the lungs. Fingers crossed on those; they seem to still be growing slowly. I'll be keeping you in my thoughts and prayers.

Aimee

Dx 11/11/2010, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Dx 2/28/2014, IDC, Stage IV, mets, ER-/PR-, HER2-
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Feb 28, 2015 04:29PM smiley47 wrote:

Hi Lotusblossom:

Thanks for your input on the chemo's that have worked for you. I have been really busy with scans and dr appointments for the the brain met found; or should I say possible brain met. I go today for MRI but worried they will not be able to get the needle in for the contrast due to no veins in arm, I usually have chemo nurses do it because its so difficult but hospital will not be able to do that where the MRI is. It might be a wasted visit and I dont feel well with all the stress and progression of the cancer, I'm tired. How were the SE's for you on Navelbine?

Dx 9/9/2008, DCIS, Left, 5cm, Stage 0, Grade 3, 15/40 nodes, mets, ER+/PR+, HER2- Surgery 9/27/2008 Lumpectomy: Left; Lymph node removal: Left; Mastectomy: Left; Prophylactic ovary removal Radiation Therapy 3/9/2009 3DCRT: Lymph nodes, Bone Hormonal Therapy 5/10/2009 Hormonal Therapy 5/10/2011 Aromasin (exemestane) Chemotherapy 11/10/2013 Xeloda (capecitabine) Chemotherapy 1/10/2014 Taxol (paclitaxel)
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Mar 1, 2015 04:36AM lbgal wrote:

hi Spirit

I think the 2 y waiting period in that post referred to other people. Stage 4 is fast tracked as Aimee said. And lung is included too. Another board that I check often is the INSOMNIACS, they are a diverse fun group.

Btw - has anyone watched the last episode of VICE? These documentary is about new therapies for cancer using modified viruses and the spectacular results. Gives us all hope! Anybody has more info about where they are with the breast cancer vaccine?

To everybody- I don't know anything about bone, liver or brain mets. But if anybody has pleural and pericardial fluid, I have experience with that (unfortunately).

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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Mar 2, 2015 01:18AM Adnerb wrote:

The Vice episode about cancer cures was very riveting, to say the least. It bodes very well for blood cancers. Maybe a cure for solid tumors is not that far behind?!

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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Mar 2, 2015 09:30AM SpiritBlessing wrote:

Hi Aimee I'm so excited to hear from you. I have wanted to call you but wasn't sure. I think you might be able to answer some questions. I will text you this week to see what day would be good to call. Sounds like you're hanging in there. How is DH?

I just need to know when to decide all of this to just make it happen. But it is not easy as I really do love working and have been so blessed to have the employer I do. I know I can work and make 1090.00 per month while I apply for SSDI so would like to do that for a while and still get my medical through the company. Would like to shoot for August as my last month so just need to plan for it.

The more I see that they fast tract the stage IV dx that sure helps. I am so ready to set a date and make it happen. Thank you all for your input.

So what is the statement about the vaccine? I heard there was a vaccine that the mayo clinic was saying was a new exciting trial coming up. Is that what you are referring too?

Thank you ladies and have a great week. Will check back tomorrow. Luc

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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Mar 4, 2015 06:54AM Tbryer wrote:

Hi everyone I am knew to the site. I was doing a search on triple negative breast cancer when I came across this site. Not so sure what to say here but I will introduce myself as one who has been diagnosed with triple negative breast cancer. I have been battling this sense July 2013 which then was stage 3. I went through 12 cycles of chemo than radiation. But a week and a half after my chemo treatments were finished I found a lump in my armpit. They did a pet scan which found a lump in armpit (lymph node), one under my collar bone (which was there from the very first pet scan) and two lymph nodes under my breast bone. So they did radiation than another pet scan. At that time the lymph nodes under my breast bone was gone and the other two had shrunk and showed very low activity. So they decided to do chemo again in hopes to kill them off. Well when that round of chemo was done a week later I found a lump near my collar bone. The doctor felt I needed another pet scan in which this time it has now spread to my lungs (stage iv). I am just so freaked out. I am not sure how to react. My chemo doctor seems to act as if there really is no hope. There is no experimental treatments right now for me so the only thing to do is put me back on strong chemo, (oh no here we go again). My hair was just growing back, I was feeling stronger and my hope level was so high, only to be knocked backwards again. I feel so alone, so scared!

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Mar 4, 2015 07:34AM Beachbum1023 wrote:

Hello Tbryer, welcome to the club, the club no one wants to join. You will find that we are never alone here. And you will meet the most amazing ladies ever. I was wondering what chemo you have had, and what is next. You can edit your profile to add the info so we can all address your questions and concerns with helpful responses.

There are many other threads that may interest you as well. I post on numerous threads, and many other ladies do as well. We always go forward, and you will too. I am Stage IV, but that is only a number to me. And there ain't no 5! So I am kicking butt to do whatever it takes. So what can we do to help you?


Beachbum - AIN'T NO 5! Dx 7/15/2014, IDC, 6cm+, Stage IV, Grade 3, 0/5 nodes, mets, ER-/PR-, HER2- Chemotherapy 8/19/2014 AC Chemotherapy 10/14/2014 Taxol (paclitaxel) Surgery 12/15/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 12/26/2014, IDC, 5cm, Stage IV, Grade 3, 0/5 nodes, mets, ER-/PR-, HER2- Radiation Therapy 1/26/2015 Breast, Lymph nodes
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Mar 4, 2015 08:16AM - edited Mar 4, 2015 08:17AM by SpiritBlessing

Tbryer - welcome. I am new here as well. I know it is a tough dx we have all been given. I was dx 08/13 so we have been on the journey almost the same time. I am stage IV as well from the very beginning. Unfortunately my initial team overlooked some nodules that were on my lung and so they didn't even look into them. I had my lumpectomy and my surgeon the onc and radiologist all said not to worry about them and they just wanted to focus on the lump in Breast and to remove it. Had surgery after about 6 weeks which freaked me out that it took so long. After surgery I just didnt feel right and so I went for a second opinion. Found that they said absolutely have to check nodules so had a PET and of course cancer as well. So stayed with my new team who are 2hours away but totally worth it.

I have been on a study trial since 11/25/13 which I did chemo weekly for 6 months and now am on a targeted therapy of a chemo drug every two weeks and a daily pill. So far I went from 5 nodules to 2 and 2 lymph nodes in chest to none. It's been a year and 4 months since started treatment and I have done pretty good actually and have worked most the time. I worked from home during the hard chemo but went back to work in May a few days a week and in July I was full time again except for every other Monday when I go for treatment.

As part of the trial I have to have a CT scan every 8 weeks. My last one I had three weeks ago showed a lymph node behind my stomach that they want to look at so I have a PET scan on the 9th.

I am new to this board but I have been on another board since my initial dx and the ladies there have been amazing and they are family to me. I have a strong Christian faith and this board is for women who are Christian and want to get and give prayer and support in their faith.

It's easy to be fearful in our journeys but stay focused and positive. If you like you are welcome to PM me anytime. I am also opened to phone calls and texting for support so let me know.

I in the early process of checking into applying for social security disability so hoping it goes well and just see what my options are.

Beachbum what other boards would be good to check out?

Have a blessed evening and restful sleep...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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