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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: TNBC mets to back bone, chest lymph nodes, and brain

Topic: TNBC mets to back bone, chest lymph nodes, and brain

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Jul 21, 2012 12:04PM

spark wrote:

Hey all. I was diagnosed in June 2010 at age 38 with TNBC, stage III-C. and was told I was NED in July 2011. But now it is back with a vengeance in my lower back, my chest lymph nodes, and my brain. I just started whole brain radiation 2 days ago, 8 more treatments to go. They are doing radiation on my brain and my back. My Onc told me that after we finish the 10 days, I would need to take a break for my body to recover and then we would look at chemo options. She said she has to take a "lumbar puncture" to see if the cancer is in my fluid and if it is, then they would need to give me the chemo directly into the lumbar area. If not, she is considering a single agent chemo, called xeloda. At this point, she said that I have a "few months" of survival, although she "hopes" I prove her wrong. Every day, I have headaches, some backaches, and my chin is numb. They have me on steroids to reduce swelling, but it seriously makes me feel like shit, my stomach hurts, can't sleep at night. I also just feel no tast in my mouth, feel constantly queasy, and out of my skin. I don't know if its from the cancer or the steroids or the radiation.

I am terrified. Any advice? Anything? When will these headaches and numb chin go away? Is there any point in moving forward with any additional treatment? 

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Jul 21, 2012 01:07PM menan wrote:

My heart breaks for you.  Sending you hugs and hope! 

I am also TNBC so I know where your terror comes from but so far I only have had lung mets hanging on.  Did your OC give you something for anxiety like Ativan?  I take it for nausea and before Pet scans. 

I had a sister who was told 3 to 6 months with her primary brain cancer and she lived 3 years (1981 -1984) using radiation so don't give up hope.   Never asked her if the headaches went away, but I do know she had an ice cream cone after every treatment for the nausea.  Visited with a retired Dr. who stopped for Mexican food as that helped him feel better. Experiment to see what helps you. 

I had steroids with my Halaven chemo yesterday and have yet to sleep so I know about that SE!  I have the munchies with it though which helps the queasy stomach.

Go ahead and scream or cry or beat a pillow.  Let all that anger out and keep on keeping on till you call yell 'WINNING'!!!!

Keeping you in my prayers, Nancy

Nancy B

Dx 12/22/2007, IBC, Stage IV, Grade 3, 14/15 nodes, ER-/PR-, HER2-
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Jul 21, 2012 01:07PM stagefree wrote:

Spark, I cannot answer any of the questions you asked, having neither the personal experience nor any medical knowledge. You are not alone (((hugs))). Hope you get well soon.

Ebru

Dx 4/9/2012, IDC, Stage IV, Grade 1, mets, ER+/PR-, HER2-Chemotherapy 04/12/2012 Taxotere, XelodaHormonal Therapy 08/25/2012 TamoxifenHormonal Therapy 12/28/2012 FemaraChemotherapy 03/13/2013 Xeloda
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Jul 21, 2012 03:05PM banjobanjo wrote:

I am also TNBC, have had WBR at the same time as radiation on my spine and AC chemo.  That was a rotten time but am now on Xeloda and feeling much better.  Who knows how long we have?  I think it was a bit mean of the doctor to give you just a few months - not even the doctors can tell how individuals respond to treatments.  Hoping you feel improvement soon and that the treatment is effective.

Barbara 'And we are here as on a darkling plain, swept with confused alarms of struggle and flight, where ignorant armies clash by night.

Dx 10/5/2011, DCIS, 1cm, Stage IV, Grade 3, 14/16 nodes, mets, ER-/PR-, HER2-
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Jul 21, 2012 04:19PM Tina2 wrote:

Spark, I am sorry you are feeling so lousy. I have no advice, but to remind you that none of us has an expiration date stamped on our heads---or anywhere else, for that matter.

Ginger capsules have always helped my queasiness and they have no side effects. They're worth a try.

I hope your misery eases up soon. 

Tina

Stage IV, lung mets, ER+/PR+; treated with Faslodex since July, 2011

Dx Stage IV, mets, ER+/PR+
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Jul 21, 2012 07:08PM spark wrote:

Thank you, thank you, thank you. Just reading real people's kind words and experiences for some reason makes me feel a lil bit better....

Dx 6/18/2010, IDC, 2cm, Stage IIIc, Grade 3, 4/5 nodes, ER-/PR-, HER2-Dx 6/2012, IDC, 2cm, Stage IV, Grade 3, 4/5 nodes, ER-/PR-, HER2-
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Jul 21, 2012 10:42PM TonyaB wrote:

I am TN and have been on chemo for 5 years.  Doctors really don't know how much time we have. I was stage 3C, 37 years old and it came back only three months after I finished upfront treatment. I'm sure the doctors thought I would not be here long but here I am. A little beat up, but here. So I would encourage you not to dwell to much on that timeframe as hard as that may be. Also, people with brain mets can survive for many years.

Have you gotten a second opinion.

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Jul 22, 2012 03:30PM spark wrote:

TonyaB: where did your cancer mets to? are you miserable all the time? in terms of being in treatment and feeling like crap? which chemo have you been on?

Dx 6/18/2010, IDC, 2cm, Stage IIIc, Grade 3, 4/5 nodes, ER-/PR-, HER2-Dx 6/2012, IDC, 2cm, Stage IV, Grade 3, 4/5 nodes, ER-/PR-, HER2-
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Jul 22, 2012 09:13PM TonyaB wrote:

Spark,

I have chest wall and possible stomach mets. I am not miserable physically all the time. In fact, physically I do pretty good. I struggle emotionally mostly. But, to me it's worth it for my family. I have been on ACT, Gemzar, Xeloda, and now gemzar, carbo and a trial drug. The trial drug that I am on didn't prove effective for bc and is no longer given. I still get it because the drug company is allowing it and it has keep me stable for almost 2 years. The trick is to find what works for you. It is possible to be stable for a long time. Xeloda keep me stable for 14 mos. I then had surgery so they took me off it. Because it was still working when I came off if, I can try it again.

I read an article a few years back. It featured Dr. Rugo at UCSF and a patient who had her brain mets treated for several years. I am in the bay area and have seen Dr. Rugo a few times. I would highly recommend seeing her if you can. This is so overwhelming. I hope you get answers soon.