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Topic: Triple negative breast cancer mets to arm, shoulder

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: May 10, 2013 02:40PM

LuvmyMomma8 wrote:

Hi, This is regarding my mom. Previously healthy 53 yr old. One day out pops a lump on her left breast. This was 2 years ago. She had chemo first, mastectomy. Triple negative 4/9 positive nodes. Shortly after that, recurrence on her chest wall. Has surgery to remove that, margins came back positive. Had radiation. During the time of radiation- she had a rash develop on her arm. Started off pimply and itchy. Biopsy confirmed triple negative on her bicep. Started Xeloda. Now almost a year later- the tumor is huge and black and causing her serious pain. She was hospitalized in Jan 2013 with pericardial effusion. Pericardial fluid Positive for cancer despite being on Xeloda. She has been on Xeloda again since April. Still new pimple mets forming on her shoulder. Her oncologist does not seem to know what to do at this point. He says this is very rare. Has anyone else have this or know of it? She is Stage IV now, and in so much pain. I feel desperate and hopeless.

I dont know how much longer I have my mom. Everything I read is not very positive.

She sarted with a nerve blocker for pain control. Some relief not much. Is there any other chemo to try or is there nothing we can do? Thank you for reading this!

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May 10, 2013 03:59PM marywh wrote:

First of all, stay away from Dr. Google. The info. you find there is old and in many cases just plain wrong. It will only cause you worry. I too have mets to the chest wall. They popped up really suddenly, like your moms. Just because theyre there, it doesnt mean its anywhere else. My mets elsewhere are still stable for the most part. I have to look at it positively, and think,well if they hadnt popped up there, I never would have known and would have waited for 3 more months for scans.Yes they are painful, but where they are is not life-threatening in itself. Maybe its time for your Mom to try something else. Thats something that she and her onc. need to discuss. Best wishes to you and your mom...

Dx 1/2008, IDC, 2cm, Stage IV, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 6/14/2008 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/31/2008 Breast Surgery 8/4/2011 Mastectomy: Left Chemotherapy 8/24/2012 Abraxane (albumin-bound or nab-paclitaxel), Carboplatin (Paraplatin) Chemotherapy AC Chemotherapy Doxil (doxorubicin), Xeloda (capecitabine)
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May 10, 2013 04:12PM jenjenl wrote:

I really don't have much to say but I can hear your fear and concern.  I hate to hear your mom is in such pain.  Have you considered going to another oncologist or a cancer center?

41 year old wife and mother of 2 children, ages 12 and 10. BRCA1+ (33 at dx) Dx 10/30/2012, IDC, Right, <1cm, Stage IIA, Grade 2, 1/15 nodes, ER-/PR-, HER2- Surgery 11/11/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 12/17/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/21/2013 Prophylactic ovary removal Radiation Therapy 4/28/2013 Breast Surgery 7/21/2013 Mastectomy: Left Surgery 1/19/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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May 11, 2013 09:19AM LuvmyMomma8 wrote:

Marywh-
You are right. The more you read the more worried you get. There is hardly a happy ending of any of those websites. That is why i decided to join this forum. To talk to real people with real stories. Its that big tumor on her arm that is causing her so much pain in addition to the lymphadema she has from the radiation. Do you have lymphadema?
I am just grasping at anything that may help her. I feel defeated cause no matter what she is still in pain and the cancer is still spreading. Thank you for your response. I rally appreciate it. Take care! God bless

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May 11, 2013 10:56AM marywh wrote:

Hi Luv, Just wanted to pop in and see how you and your mom were doing. I feel like I sounded a little harsh in my first post. I just know what reading all that crap does to you. How many other chemos has your mom been on? There are a wide range for triple neg. cancers, some work for some people, some dont. My thought just by what you are telling us, is your mom needs to have aheart to heart with her onc. If the xeloda is not working there are many other chemos out there to try. Your mom has a right to know what her options are. Oncs deal with rare forms of cancer everyday. I do have lymphedema also, which does cause alot of pain too. since her lymph system is not draining properly and she has the tumors on her arm it will be painful.Hope things are looking up a little now and she can get things under contrrol.If she would like someone to talk to her these boards are a great place to come.

Dx 1/2008, IDC, 2cm, Stage IV, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 6/14/2008 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/31/2008 Breast Surgery 8/4/2011 Mastectomy: Left Chemotherapy 8/24/2012 Abraxane (albumin-bound or nab-paclitaxel), Carboplatin (Paraplatin) Chemotherapy AC Chemotherapy Doxil (doxorubicin), Xeloda (capecitabine)

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