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 5, 2013 04:38PM debbiej wrote:

I know the feeling, just got back from my third chemo treatment and for some reason I just started crying, big sobs, I haven't cried at all since finding out I have cancer and for some reason it has just hit me like a ton of bricks.  I found a picture of my grandpa who I adored and that did it.  I have to stop before my 11 year old gets home.  I don't want him to see me crying for myself.  I am trying so hard to keep it together for him.  He knows I am sick and that alone is very hard for him.  I just thought to myself when I looked at the picture, this what my children will do every time they look at a picture of me after I am gone and it broke my heart in two.  I want to fight this all the way but it is really, really, hard, I am so tired all the time and it seems like I do laugh anymore.  I feel like I am a very boring person to be around these days.  I wish I could get back to myself before cancer.  Okay, I am through venting, I guess I feel a little better now.  Thanks for always being here for all of us!  Debbie

debbie
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Feb 5, 2013 05:10PM bottkota wrote:

Oh Debbie....those emotions are normal. Just take it one day at a time and sometimes moment by moment. I still have days like that and I am 3 years in. Vent all you want it will truly help in everything!!! And we will be here for you every step of the way!!

Cathi

Dx 11/2009, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2-
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Feb 5, 2013 06:11PM Sjayne2u wrote:

I am here too. I was dx stage 4 TN pretty much from the start too. I finished 6 rounds of AC and just had my mastectomy last week. Still waiting on the path reports and have to have scans next week.

Dx 8/14/2012, IDC, 5cm, Stage IV, Grade 3, ER-/PR-, HER2-
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Feb 5, 2013 07:54PM debbiej wrote:

Thanks, I need to hear that.  Please keep posting on here to keep me up to date on how you all are doing I need to know you are there and doing okay and that we all have hope of a more time with our family's.  I know I need to focuse more on that and less on the demon inside me.  I also know I need to let out a lot more of my emotions that are held inside.  I am so used to being the protecter and now I need help, that's hard!  Huge hugs to you all, Debbie

debbie
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Feb 5, 2013 09:36PM OBXK wrote:

Debbiej- to me, dealing with this dx, is like dealing with grief. The emotions show up out of nowhere, are intense, but don't last long. It will get easier.

Karen - DX 2003 IDC - LX, TAC X6 - rads 50.4 grays. DX. 12/10 TN - dbl mx , 5 rounds T/C. 10/12 Stage IV - PET/CT mets to chest and liver. 6 of Carbo/Gemar 12/12 CT lesion at L6 and lung nodule. 4/8 - Progression of liver tumors. Starting Xeloda
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Feb 6, 2013 12:04AM - edited Feb 6, 2013 12:14AM by Elisha82

posted yesterday about getting ready for chemo #9. I didn't actually get the chemo, just got the not FDA approved steroid that is supposedly not safe for IT use, solu-cortef. As the med was going in my ommaya reservoir, I could feel myself getting hot, flushed, nauseous. I vomited and dry heaved for almost an hour. I dont know what all meds they gave me for all that to go away. (reason for steroid needing to be given w chemo. Last few methotrexate doses have given me a case of chemical meningitis, so Dr figured steroid would help w inflammation)

Dr made me stay at hospital again last night just to keep an eye in me. Today, got premeds, phenerghan and toradol. Doc pushed med and the solu-cortef in reservoir over 10 minutes, very slow. No reaction til she finished, but then exact same reaction! I thought I was going to die. My heart was pounding, sweat dripping off my bald head, shaking, dry heaving for 30 min. It was awful. Gave me ativan and another dose if phenerghan. Slept for while.

Tomorrow getting lumbar puncture to see if fluid pressure in spinal cord causing compression and the intense pain in my pelvic hip areas, both sides and lower back and neck.

Anyone here familiar with leptomeningeal carcinomas (also called carcinomas meningitis) Breast cancer cells floating around in spinal fluid and thin layer of meninges under skull. Right now I'm having chemo inserted directly into am ommaya reservoir, inserted into top of my head, takes chemo directly into CSF. I've had reactions last week to the Methotrexate alone, so now trying to put steroid w it to keep inflammation down.

I feel really alone. I've not found anyone remotely similiar in dx. The LM cancer has 4-6 month survival w treatment. Of course were praying so hard for a miracle!! Anyone familiar with anything in my story.

(if you want more info about my story, my sister is writing a caring bridge. Message for my last name. Also have blog, address below)

I haven't posted here a lot before...hope someone can identify with me. this is my 3rd hospitalization since Dec 28. First time 16 days, then 4 days,now working on night #2.

dx Nov 2011 IDC stage 3- all clear after surf,chemo,rads.

dx in Dec 2012 w7 plus brain Mets, also  leptomeningeal carcinomas both stage 4 and LM especially poor prognosis- praying against and trusting the Lord.

www.elisha-everthesame.blogspo... Dx 11/9/2011, IDC, 6cm+, Stage IIIC, 12/14 nodes, ER-/PR-, HER2- Surgery 11/21/2011 Mastectomy: Left, Right Chemotherapy 12/21/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/7/2012 Breast
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Feb 6, 2013 12:21AM Elisha82 wrote:

hi, also should say original dx was Nov of 2011, age 29. My son was 11 months old.   

www.elisha-everthesame.blogspo... Dx 11/9/2011, IDC, 6cm+, Stage IIIC, 12/14 nodes, ER-/PR-, HER2- Surgery 11/21/2011 Mastectomy: Left, Right Chemotherapy 12/21/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/7/2012 Breast
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Feb 6, 2013 04:36AM Angela-R wrote:


Hi Elisha

My current dx is nothing like yours but I wanted you to know how angry and sorry I am that you are going through this nightmare. Of course we all say on here that 'you are not alone' and we mean it, but in truth there are many times when it is only us going through the experience. No matter how similar we like to think our situations might be, no one will ever know how you or i am personally experiencing this s#%t of a disease.

I can only offer you my online words and heartfelt positive thoughts.

If you feel it helps at all to vent on here, please do so. We won't be able to change your situation, but we can listen, and maybe it will give you some extra strength to deal with what you are facing.

With much love and best wishes

Angela

Angela Dx 2/7/2009, IDC, 2cm, Stage IIIC, Grade 3, 16/18 nodes, ER-/PR-, HER2- Dx 4/1/2011, IDC, 1cm, Stage IIIC, Grade 3, 21/21 nodes, ER-/PR-, HER2- Dx 4/23/2012, IDC, 5cm, Stage IV, Grade 3, ER-/PR-, HER2-
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Feb 6, 2013 09:28AM marywh wrote:

Oh Elisha, Im so sorry. I just wanted to tell you Im sending out big prayers for you , and big hugs to you.

Dx 1/2008, IDC, 2cm, Stage IV, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 6/15/2008 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/1/2008 Breast Surgery 8/5/2011 Mastectomy: Left Chemotherapy 8/25/2012 Abraxane (albumin-bound or nab-paclitaxel), Carboplatin (Paraplatin) Chemotherapy AC Chemotherapy Doxil (doxorubicin), Xeloda (capecitabine)
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Feb 6, 2013 03:46PM LuvRVing wrote:

Just got back from carbo #6 - it's not working one bit...my tumor markers have gone from about 600 to over 1000 in a month.  Next choice - gemzar and abraxane.  I have not yet found anything that can slow down this beast, I would like some chemo sensitivity testing.  Has anyone been able to get that done?  And did it give you any ideas as to what might be the next chemo to try?

Now I am putting all of this out of my mind - we are leaving for Kauai tomorrow morning at 6 a.m. and will be gone for 11 days.  Hoping for a "no cancer zone" for the duration of the trip!

Aloha everyone!!!



Michelle - read my blog at www.mch-breastcancer.blogspot.com - Be kind to one another! Dx 6/15/2010, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR-, HER2- Dx 3/29/2011, IDC, 4cm, Stage IIIB, Grade 3, 4/21 nodes, ER-/PR-, HER2- Dx 5/11/2012, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2-

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