New here also
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Forum Name: Archived Topics
Forum Description: Archived Topics
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=671
Printed Date: Mar 26 2026 at 8:24pm
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Topic: New here also
Posted By: wingnut
Subject: New here also
Date Posted: Mar 09 2008 at 5:04pm
| My daughter is 37 and found a lump in Sept of 2006. Lumpectomy and they didn't get good margins. Surgery no. 2 they say was clean. No lymph involvement. She had chemo and then radiation. One month after her radiation she found a lump in her other breast. She opted for a double mastectomy. She then started chemo and on her third week of chemo she found another lump where her breasts used to be. They stopped chemo (obviously it wasn't working) and started on radiation. She just finished up radiation and they did bone and CT scans. They found 2 spots in her right lung and 1 spot in her left lung. The most horrible words I ever heard was the doctor said "I don't have a drug to treat you." We go to the oncologist tomorrow and we are hoping he scheduled this appointment because he found a clinical trial. She is strong and I am on valium so I don't cry all the time. Especially in front of my grandsons. Never any cancer in our family at all. I am 57 and healthy and my Mom is 76 and healthy for her age. I guess I came here because it feels good to talk it out to others that understand the devastation this insidious disease brings to the whole family. And now I am looking for any and all information I can get my hands on. I never wanted to ever know this much about breast cancer. |
Replies:
Posted By: cg---
Date Posted: Mar 09 2008 at 5:50pm
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Welcome Wingnut,
You have come to the right place for support...there are other mothers here that have daughters who were diagnosed and are going through treatment.
Please let us know what you find out at the oncologist tomorrow and hopefully someone will be able to answer your questions.
Hugs coming your way.
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Posted By: wingnut
Date Posted: Mar 09 2008 at 6:43pm
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Thank you cg. By the way, we just now are learning the term "triple negative." I sure am learning a lot here also. Cancer patients are my heroes. |
Posted By: wingnut
Date Posted: Mar 10 2008 at 5:28pm
Ixabepilone In Combination With Capecitabine is what the doctor has decided to put my daughter on for now. She doesn't respond at all to chemo so I hope this one works. If not...... back to the drawing board. |
Posted By: trip2
Date Posted: Mar 12 2008 at 5:54am
Oh good grief,  to both of you. How heartbreaking it must be for you to see your daughter go thru so much, my gosh and in such a short period of time!
I'm one of those mother's that has a daughter who's been dx, we both went thru it last year together. And Nancy will pop in, her Lori had bc last year and Elaine. There really aren't any words to describe how a mother feels to hear her child has been diagnosed, prayers and heartfelt wishes this new treatment will help your daughter.
I know this is extremely hard on you too so please come in here and talk anytime, we are here and do understand. The caregiver/parent also goes thru some very difficult times. Bring your tears and questions and please keep us updated on your daughter.
 ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Elaine
Date Posted: Mar 12 2008 at 8:44pm
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Bless your heart! My daughter is 34, Mary, and dx in Jan this year. She is mid way with her 2nd cycle of chemo, surgery down the road. It is truly the most devastating thing to have your lovely young daughter going through the emotional and physical trial that cancer treatment is. We feel so helpless. But we go on one foot after another. No other choice, is there? Happy to be to talk or hear your stories or have you listen to mine. We are you from? I'm Northern California. What is your daughers name?
Elaine
Mary's Mom
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Posted By: shellieh51
Date Posted: Mar 18 2008 at 4:27pm
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I am so sorry to hear about your daughter - I can only imagine how
difficult it is to deal with. I was dx at 55 and just can't
imagine either of my girls going through this. I am so glad you
are there for her. You are in my thoughts and prayers.
Take care.
------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: BrendaF
Date Posted: Mar 20 2008 at 9:03am
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The worst tragedy is for a young mother to have to do this. I'm 53, and it's hell, but at least my children are grown up and don't really need me. It breaks my heart all the young women we hear about.
Hopefully Ixempra and Xeloda will have good results for your daughter.
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Posted By: wingnut
Date Posted: Mar 23 2008 at 9:49am
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Boy have I cried and it is nice to have found a place that understands. My daughter's name is Sativa and I am in northern california about 1 hour from her. She does have drug resistant metastatic metaplastic triple negative breast cancer. Only 1 other person at her hospital has ever taken the drugs she is taking now. It is one day at a time and we try and focus on a joyous event in the near future. The event we are focusing on now is a trip to watch the San Francisco Giants play baseball against the NY Mets. I don't know how I became a Yankee fan and she became a Met fan. Both of us are huge baseball fans and both of us played softball for years. We will leave our hubbies and her kids at home and just she and I will go. It is something to focus on instead of waiting and wondering if this drug is working. Gosh how I wish I had the cancer and not her. As a Mom, you feel so helpless. God bless all of you on this board. Annette |
Posted By: Nancy
Date Posted: Mar 23 2008 at 10:30am
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Dear Annette,
I can empathize with you 100%. I am Nancy, and my daughter is Lori (daughter dx TNBC). If only it were me who was dx!!! I would take this horrible disease in a heart beat! Even thogh she is almost 46, she has a lifetime ahead of her, and so much to offer.
While Lori is finished with chemo and rads, it is now just wait and watch. Hoping and praying that cancer does not rear it's ugly head ever again.
HELPLESS!!! You are right. I am sure there are many more words to desribe how I feel. Just an empty feeling, this should not happen to anyone.
It is one day at a time Annette, and as I have said so many times...Lori says that at some times she was so worried about what would happen in the future, that it was robbing her of the joy of each day. She made it through all the treatments...but not without the side effects. She was not courageous...or brave...she just wanted to live. Sativa has you Annette, and everyone else who loves her to give her some of the strength she will need.
The tears still come, and at the least expected times. I am thankful that Lori was able to endure the treatments, but I still question why she got the bc.
We will keep Sativa, you and your family in our thoughts and prayers, and please tell us how she is doing.
From one Mom to another, Hugs,
Nancy
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Posted By: Elaine
Date Posted: Mar 24 2008 at 4:46am
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I will be praying for you and Sativa, Annette. And I hope you have a wonderful time at your baseball game. What a fun trip for a mother and daughter! You are right, these are the things we focus on right now. To focus on the treatment, the disease, all the time is too exhausting and makes us crazy. Focus on life and the love between you and your daughter! Have a wonderful time!
Elaine |
Posted By: trip2
Date Posted: Mar 24 2008 at 4:56am
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Elaine said it perfectly. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Cookie
Date Posted: Mar 27 2008 at 7:47pm
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Wingnut:
I wrote an e-mail to a cancer question and answer group on the net. Can't remember what it was called but it may have had something to do with triple negavtive.
I wrote to find out what the current protocol for triple negative treatment was. This site was great and gave me several different chemos, etc.
What I am getting at is, they suggested me contacting Dr. Robert Livingston, and the Univerity of Arizona, Tucson, stating that he is brilliant and the worlds leading expert on breast cancer. I'd suggest you contact him to see what he'd suggest. I didn't because my onc in AZ knows him and I felt he'd contact him if necessary. It's a phone call, and don't give up if you call and get some pion telling you something that is different than what you want, i.e. talking to the doctor. Also, you can follow-up with a registered letter to him. I wrote a 3 page letter to a doctor in MI that I was interested in taking on my case and got a phone call within 2 days of mailing the letter. You must be the advocate, no one is going to care about or for your daughter like you.
I am pretty aggressive, so, I'd even go as far as calling all the major cancer centers around the country and/or sending them letters with a copy of her file. I only say this because in 1989 my daughter, fresh out of college had a bad car accident, a semi drove over her sports car, broke her back, etc. I contacted many facilities that treated traumatic scoliosis, took her for consultations before chosing one we were happy with. So, as a mother, unfortunately, this lies on your shoulders, and you can do it, don't stop for anything.
Cookie
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