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Emilie 
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Joined: Sep 06 2008 Location: United States Status: Offline Points: 6 |
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 Posted: Oct 08 2008 at 7:57am |
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Hi, Nancy,
Thank you for your encouraging words. It is hard to grapple with the fact that this disease is getting the best of me. It really has been hard to stay optimistic although I am trying my best. I have two young kids who have no clue as to how sick their mom is. I am not ready to leave them or my husband.
I am trying to deal with anger and depression and I feel like I am losing the battle. I was a healthy 34 year old when I was first diagnosed. I exercised, did not eat red meats and took care of myself. I couldn't understand why I ended up with cancer.
Thanks so much once again.
Warmly,
Emilie
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11/05 Age34-StIIIC-multiple nodes,9.5cm primary
12/05 Neoadjuvant-AC/Taxotere 6/06 Bilat mastectomy 7/06 7+wks Rads 4/08 StIV-mediastinum,sternum,pelvis,lymph nodes 5/08 Abraxane/Avastin/Xometa |
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Emilie
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Joined: Sep 06 2008 Location: United States Status: Offline Points: 6 |
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Posted: Oct 08 2008 at 8:01am |
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Hi, Chris,
Thanks for the encouragement. It's wonderful to hear that other women are continuing to fight and win their battles against triple negative. My oncologist assures me that we are not out of options. I will see him next week to see where we go from here. I hope to live to see my kids (ages 7 and 13) graduate from high school at least.
Hugs,
Emilie
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11/05 Age34-StIIIC-multiple nodes,9.5cm primary
12/05 Neoadjuvant-AC/Taxotere 6/06 Bilat mastectomy 7/06 7+wks Rads 4/08 StIV-mediastinum,sternum,pelvis,lymph nodes 5/08 Abraxane/Avastin/Xometa |
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lilat
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Joined: Sep 26 2008 Location: United States Status: Offline Points: 9 |
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Posted: Oct 08 2008 at 8:18pm |
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Hi Emilie,
It's hard to stay positive, I know, when the reality of what we all deal with hits home. We try to protect our loved ones from the hurt, all the while having to make such serious life and death decisions for ourselves. The burden is heavy, and I hear it in your posts that what is happening to you is really weighing you down. I hope that I can encourage you to stay in "fight mode." Anything can happen. Though the future looks bleak, so many times things don't turn out the way we envision. That's why I find it best to not look too far down the road. So much of how well we go through this has to do with our thoughts, attitudes, and faith. Because of this cancer, I constantly realize how short life can be. With or without cancer, none of us have a guarantee of how many months or years we will live. My hope is that I won't waste one minute of the time I may have left. I've learned from my own experience, being healthy all my life, and having no risk factors, that this cancer can be completely random in targeting its victims. My oncologist also tells me that there are many treatment options we can try. Be strengthened and encouraged, Emilie. You are not alone! You will be in my prayers (and I do pray all the time). Lila |
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Feb 07 Dx Stage 2B IDC TN lumpectomy,AC/Tax, 33 Rads
May 08 Dx mets to axillary, inner mamm nodes, lungs, BRCA neg June 08 BSI-201/Gemzar/Carbo Dec 08 Dx mets to bones Jan 09 Sutent/Xeloda |
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sueez
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Joined: Oct 08 2008 Status: Offline Points: 27 |
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Posted: Oct 12 2008 at 12:28pm |
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i am also in your boat living close going to moffit would love to hear from you
sueez
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thinkpositive
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Joined: Jun 24 2007 Location: United States Status: Offline Points: 111 |
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Posted: Oct 12 2008 at 4:17pm |
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Sueez,
I am so glad you have reached out to those of us in the same boat as you say. You are being treated at a great cancer center and I know they will work hard to find the right treatment. How can we help? Is there information on going through chemo that would be helpful? I have been on Avastin and Xeloda for almost 2 weeks. So far it is not difficult - I get tired and a little nausea but ok.
We will all keep you in our prayers. I am sorry your Mom is not here to help but I am sure she is looking over you as you go through this. Sounds like your husband is very supportive. Keep us posted on your progress.
Hugs.
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dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08 Brca neg Avastin Xeloda 10/08 Curagen 2/09 Ixempra 6/09 Lung Mets Gemzar/ Carboplatin 9/09 |
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sueez
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Joined: Oct 08 2008 Status: Offline Points: 27 |
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Posted: Oct 13 2008 at 11:13am |
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thank you all hope i can get through this like you moffit just wanted a call from my husband on tues meaning here i am in limbo i called a doctor and on tues he will see us a little scared he has never had tripple neg before but at least he'll see us
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forsofi
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Joined: Oct 18 2008 Location: United States Status: Offline Points: 3 |
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Posted: Oct 18 2008 at 3:42pm |
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Dear Diane,
My Dear Aunt Sofi (67 yrs) has been recently diagnosed with TNBC with mets to the liver, lung, lymph and bone. She had a mastectomy about 18 months ago but has never been on any chemo. Just two weeks ago she started taking Zeloda. Can you tell me were you taking the Zeloda alone like she is and how are things going? I pray things are going well for you. Kathy |
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forsofi
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Joined: Oct 18 2008 Location: United States Status: Offline Points: 3 |
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Posted: Oct 18 2008 at 3:57pm |
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I also wanted to tell all of you how amazing and strong you all are. I have been reading many of the forums and I pray for you all. Since my Aunt's diagnosis I have been trying to learn all I can and get involved where I can. My 4yr old daughter and I entered the "Race for the Cure" locally and raised $1500.00. My daughter loves her Great Aunt and screams with excitement every time we see her. We are devastated by my Aunts diagnosis and shocked by how many of you dear ladies are affected by it also.
God Bless You All-----KEEP FIGHTING |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Oct 19 2008 at 8:06am |
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Hi forsofi and a warm welcome to you.
I am so very sorry to read of your Aunt's diagnosis but want you to know there are some good meds out there to help her. You must love her very much to do research on your own to learn about her particular disease.
Ask any questions that you might have and we'll do our best to help you.
The ladies in this forum are very supportive and will offer what they can to help.
Congratulations on gathering so much money for the Race, that is just great!
Keep us posted on how your Aunt is doing,
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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forsofi
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Joined: Oct 18 2008 Location: United States Status: Offline Points: 3 |
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Posted: Oct 19 2008 at 8:24am |
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Pam,
Thank you so much for your warm welcome. |
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guitargal
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Joined: Jul 18 2008 Location: United States Status: Offline Points: 6 |
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Posted: Nov 02 2008 at 12:22pm |
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Danelle, I'm in Phoenix as well, and as struggling in similar ways to you. I was initially diagnosed about 1 year ago, with a Stage IIb IDCS. I did a lumpectomy and 8 rounds of A/C/T, which failed immediately at the 2 week off of chemo. My breast swelled severely, and I underwent an emergercy masectomy. I then did Xeloda and 40 rounds of radition, but unfortunately now it has mets'd to my lungs. I went out to MD Anderson, (amazing plaze) and they put me on Navelbeine. I'm about half way through but I don't think its working. It's getting harder and harder to breathe, and I can't get comfortable. I don't know if that helps you, but I find by visiting the site and talking to others it helps me mentally. Anyways, I haven't met anyone in Phoenix that is triple negative, so Hi There partner. Best of luck.. |
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dx 2/08, Stage 2 IDC, grade 3, N+1, lumpectomy, 4 rounds AC/4 round Taxol, then massive return and masectomy 7/08 (2 wks post chemo). 42 years old, divorced, two small daughters
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Nov 03 2008 at 5:12am |
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Guitargal, can't they give you something, a nebulizer or something to help you breathe better?
I wish you success with the Navelbeine and if that isn't working they'll find something that will!
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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thinkpositive
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Joined: Jun 24 2007 Location: United States Status: Offline Points: 111 |
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Posted: Jan 03 2009 at 9:34am |
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Lila - wondered how you are doing?
Hope the last round of chemo was successful and that 2009 will be a better year.
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dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08 Brca neg Avastin Xeloda 10/08 Curagen 2/09 Ixempra 6/09 Lung Mets Gemzar/ Carboplatin 9/09 |
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lilat
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Joined: Sep 26 2008 Location: United States Status: Offline Points: 9 |
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Posted: Jan 03 2009 at 3:29pm |
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Hi,
Thanks so much for asking about me. To bring you up to date, the last round of chemo I had was a clinical trial of BSI-201 and carboplatin with Gemzar. It worked for a while, causing some shrinkage in the tumor under my arm and in the mammary nodes in the chest. The lung nodules remained unchanged the whole 4 months I was on it. I took 3 weeks off treatment to take a wonderful trip to Greece, Turkey, and Italy in November. When I got back, I had to decide to continue or stop the study. Of course, I chose to continue since the cancer was still there and the treatment did help. I finished one cycle and was getting ready to start the second cycle, but I had severe pain in my shoulder, which turned out to be mets in the second rib and the sternum. The treatment came to a halt, since it appeared there was a fracture in the rib. It turned out later that there was no fracture. After a bone scan and CT scan, it looks like the nodules in the lungs are growing and there are now more of them. I have a PET scan on Monday and then I will likely start on a new clinical trial of Sutent or Xeloda, depending on which arm I wind up in. I'd love to hear from those who have been on either of these drugs or the same study. I am still working and trying to stay very positive. I don't know if I should stop working and start spending more time with my family, especially my grandchildren. I guess I'll know when the time is right to make a change. Even though this progression is a set back, I still feel very hopeful and I am not looking to far into the future. Just appreciating every day and staying close to the Lord. Once again, thanks for checking on me. |
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Feb 07 Dx Stage 2B IDC TN lumpectomy,AC/Tax, 33 Rads
May 08 Dx mets to axillary, inner mamm nodes, lungs, BRCA neg June 08 BSI-201/Gemzar/Carbo Dec 08 Dx mets to bones Jan 09 Sutent/Xeloda |
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thinkpositive
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Joined: Jun 24 2007 Location: United States Status: Offline Points: 111 |
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Posted: Jan 03 2009 at 3:59pm |
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So glad to hear you got some wonderful time away. We can't sit at home and wait to see what is going to happen. I am in a similar situation. The lung mets seem to be resisting the chemo. I did a couple of rounds of Avastin & Abraxene and saw some improvement and then reversal. I am on my 5th round of Avastin and Xeloda which seems to be holding me steady at best. The latest PET scan shows no reduction in size of the lung mets but some reduction in SUV. In the meantime, we took a cruise and I enjoyed my family over the holidays. I am also working full time at a rather stressful job in banking (not much fun these days). My onc wants me to try one more round of this combo and then another PET scan. He mentioned Navelbine and Gemzar or possibly a clinical trial if we don't see improvement. Guess we need to enjoy every day and hope that one of these drugs have some real impact. I hope you enjoy a healthier 2009. Hugs !
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dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08 Brca neg Avastin Xeloda 10/08 Curagen 2/09 Ixempra 6/09 Lung Mets Gemzar/ Carboplatin 9/09 |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jan 04 2009 at 7:26am |
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Hello Lila, The trip sounds wonderful, what a lovely refreshing change of view.
I'm so sorry you've come back to find out you have a bit of a setback
but want you to know we are all behind you hoping the new meds will be the answer.
Best wishes,
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jan 04 2009 at 7:30am |
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Thinkpositive,
So you went on a cruise too, you two are lucky ladies, it sounds so relaxing, good for you.
I wanted to jump in and say good luck with the scan and new meds or a trial. There just has to be something and you'll find it.
Hugs,
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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lilat
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Joined: Sep 26 2008 Location: United States Status: Offline Points: 9 |
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Posted: Jan 04 2009 at 12:33pm |
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Thanks so much for the well wishes, Pam.
The trip was a tremendous experience. I went with a group of 19 others, including two of my sisters and their husbands. We walked many miles, up and down more hills and stairs than I could have ever imagined. I am happy to say, that I was the only one in the group to escape some sort of sickness. The renewed strength and resilience was a special unexpected blessing and great preparation for this next round of this cancer battle. I am very grateful to have had the opportunity to go. It was worth every penny. I will keep you all updated regarding tomorrow's PET scan and future treatment. Here's to a healthier New Year for all of us and hope for finding a drug that really works against TNBC. Blessings, Lila |
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Feb 07 Dx Stage 2B IDC TN lumpectomy,AC/Tax, 33 Rads
May 08 Dx mets to axillary, inner mamm nodes, lungs, BRCA neg June 08 BSI-201/Gemzar/Carbo Dec 08 Dx mets to bones Jan 09 Sutent/Xeloda |
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woolie
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Joined: Jul 11 2007 Location: Uruguay Status: Offline Points: 30 |
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Posted: Jan 04 2009 at 1:30pm |
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Dear Danielle : I just went through so much of the same that you did and the skin biopsy was the only thing that showed cancer and it was not Triple Neg this time but Inflammatory breast cancer in the other breast and it all started with left arm pain. Since Dec 15 i was started on Xeloda, had a port put in and had a large dose of chemo New Years Eve. One of the chemos was also Avastin. They say after 3 to 4 months of chemo they are going to do a bone marrow transplant with my own harvested marrow.The Xeloda exacerbated my asthma so bad they have to stop it for now and I go back to the MD this week . I walk around puffing like an old smoker.I watched an episode of MASH and laughed so hard that I am going to try to buy the series. Try to watch funny TV and just laugh as loud as you can Good Luck JULES
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jan 06 2009 at 6:24am |
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What a great idea! MASH is funny and if you enjoy it get the series, what a great bad mood breaker, good for you.
When you think about it there are several funny shows that people have enjoyed over the years and we now can go buy them and watch at our convenience.
I hope you are starting to feel a little better by now. I want to wish you all the luck and prayers that the new meds and upcoming procedure work perfectly for you.
Hope you will keep us updated?
Thanks for sharing Edited by trip2 - Jan 06 2009 at 6:27am |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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