TN Inflammatory Breast Cancer |
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Lex25 
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Joined: Sep 17 2011 Status: Offline Points: 1 |
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 Topic: TN Inflammatory Breast CancerPosted: Sep 17 2011 at 5:03pm |
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Hi,
I'm 25, from Holland currently living in Belgium, and found out a little over a month ago that I have inflammatory breast cancer. Unfortunately it's also triple negative. It has also spread to my lymph nodes in my underarm. I've had two chemo's and have another six to go. Then a mastectomy, and 25times radiation. It has reacted very well to the chemotherapy and I can already hardly feel anything left in my breast and it has seemed to completely return to normal (when I was diagnosed my whole breast was rock hard). I was wondering if there's anyone here who also has/had this rare yet very dangerous and agressive type of tnbc? Thanks in advance!
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Sep 17 2011 at 6:01pm |
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Hi Lex,
welcome...I am glad you found us but sorry you have reason to be here especially at such a tender age. here is something I posted on our resource section...You can’t post on it but the information may be helpful.. There are several women on the forum who have TNBC. It can be a tough diagnosis to make. If you would ever like to talk I am sending you my contact info in a PM (Private Message). Have you ever been tested for the BRCA mutation? again, welcome and hopefully you will here from some women here with IBC. all the best, Steve p.s. it is estimated that about 30% of the time when a woman has IBC it is triple-negative, as well..
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Sep 18 2011 at 9:38am |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Debris
Senior Member 
Joined: Jun 07 2010 Location: Forsyth,Georgia Status: Offline Points: 756 |
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Posted: Sep 30 2011 at 5:40am |
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Lex, I have just very recently been Dx with IBC, thigh I was Dx with mTNBC in 2010. Steve has posted good information for you, and there are many folks on the Forum who have tips on working through the various options of treatments, and offer just plain support for each other here.
I'm very happy to hear of your success so far with your chemo regimen. What are you getting? I wish you continued success throughout your treatment plan. Best wishes. Deborah. |
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4/12 Xeloda/Tykerb
2 Carboplatin 12/11 Dx IA 9 Gemzar/Taxotere Dx IBC:FEC 5 Ixempra/Sprycel 2 25 Rad 10/10 BRCA1-/2suv 9 NED 6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin 06/08 Dx DCIS 0/SN Rads/AIs |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Oct 02 2011 at 10:57am |
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Deborah,
Is your IBC also TN? I hope this new chemo will give you the relief you need in your nodes. Hugs, Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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aprilgirl
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Joined: Sep 29 2011 Location: United States Status: Offline Points: 2 |
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Posted: Oct 02 2011 at 11:32am |
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Hi, I joined a week or so ago after looking for informantion about TNBC. I posted a newbie comment when I joined about my whole ordeal. I was recently diagnosed with TNBC in April and finished chemo about 5 wks ago. But my question is...now that I am done with chemo, no radiation, what is the procedure for monitoring you once you had this diagnosis? I was a 14 yr BC survivor until April. The cancer that came back was on the other side. My 1st diag. was + for Estrogen so I received tamoxifen. So convinced that's why I didn't have any issues for so long. Then all of a sudden this came along. It was a total shock. Had not even heard of TNBC until now. I was Stage I since I was followed so closely from my previous cancer. I now have a bilateral mastec. so no more mammos. Do they do any type of scans typcially to monitor this? I was told that I would be followed every 3 months (as before) but my doctor is not a fan of tumor markers. Are they reliable? I've had them all these years. Short on having symptoms of a recurrence, can anything else be monitored to stay ahead of this? I was almost stage III before and had just stopped nursing my youngest 6 months prior to my diagnosis. I didn't feel half the scared feelings before that I have now. Can anyone help reassure me...or feed me some info? I would so greatly appreciate it. My whole story was on the welcome page of this site...which I might add...really looks great...very welcoming! Any thoughts I would appreciate! Thank you all so much! Aprilgirl...Cindy
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~Cindy
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Jul 04 2012 at 1:22am |
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aprilgirl, Noticed on the "Forum Home" page at the bottom "Today's Birthdays" that today is your birthday. Before I went to the "Happy Birthday" thread, I looked to see when you last posted. Very sorry to find there was no reply to your above post. Sometimes, unintentionally, a post will end up without a response/reply.......it could happen on a day with a lot of posts or that members mean to get back to post but..... Just wanted to say: Sending you lots of good birthday wishes......and hope you see this. http://forum.tnbcfoundation.org/happy-birthday_topic9203_page8.html With caring thoughts, Grateful for today............Judy =============================================== Lex25, Sending caring thoughts to you. Hoping you were able to finish your planned treatments without complications. Grateful for today............Judy =================================================== Debris-Deborah, Thinking of you often and sending lots of love and prayers. Please know we realize there are times when it takes all a member's energy and time to take care of the immediate needs. Tons of cyberhugs and care, Grateful for today.............Judy |
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June
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Joined: Jun 05 2012 Location: Belgium Status: Offline Points: 4 |
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Posted: Jul 04 2012 at 6:17pm |
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I'm very sorry to inform you but Lex25 has passed away (05/12) In february when she went to the hospital for her last chemo treatment, they did a MRI because she had headaches. Then they found out she had metastisis to the brain and that there was nothing that they could do for her. I'm still in shock. I did not meet her in person, only online because she was also a member of a dutch forum for young breast cancer patients. She was so determined to win this battle.  |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Jul 04 2012 at 6:39pm |
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Dear June,
Thank you so much for posting this awful news. I just spent a marvelous week with some of my family on a vacation, trying to re-group after many, many very difficult months of losing women who I became attached to, several of whom had Inflammatory Breast Cancer. I did not know Lex but I am so profoundly saddened by her demise. It is especially hard when someone at Lex's tender age succumbs to this particularly wretched disease. Of course, fortunately, there are many cases where IBC responds to treatment but all too often, it is perniciously deadly. I can never get used to it. Each time it simply takes my breath away and I find myself crying, as I did today, when I read your post. again, thank you for sharing and thanks for your Dutch support group which I am sure helped Lex and others. June, you shall be in my prayers and I am sending ++++++ vibrations to you and your support group members. warmly, Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: Jul 04 2012 at 6:50pm |
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June, Am so sorry to learn of Lex25 passing. Sincere sympathy and many caring thoughts to you and the other members of the Dutch forum group and to her family and friends. Lex25, may you rest in peace. June, when a TNBC member has passed, we make a thread/topic forum on the sub-forum TNBC Tributes to acknowledge their life. For tributes for Lex25, please see: http://forum.tnbcfoundation.org/topic10086_post103824.html#103824 In sympathy and with caring thoughts, Grateful for today........Judy |
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