IBC - In Treatment

yuyueno

Hi, everyone!

I was diagnosed with IBC in August, and I am going through chemo right now.  I go to support groups in the area, but I have not yet met anyone with this diagosis.  Since IBC is rare and unique in which symtoms are often different from regular kind of Breast Cancer, I don't quite fully relate with others in the groups.  I am hoping that those with IBC who are in treatment (chemo, radiation, surgery, etc) and/or had already been thruogh treatment can share and encourage each others here in this thread. 

I started chemo on the first week of September (Taxotere, Carboplatin, and Herceptin).  I am done with 2 rounds, but my breast tumor continues to grow   It is really scary how it is so aggressive.  So, my doctor changed my regimen and I will be starting on Taxol and Herceptin starting this Friday. 

 Being diagnosed and dealing with IBS have been hard.  I am actually a nervous wreck worrying about "what if"s.  I really would like to share positive attitudes with others!

Yuyu

Maryiz

Hi, Yuyu, I do not have IBC, but when I was first diagnosed, one of the woman who called me to calm me down had IBC 6 years ago.  She is doing great, has had reconstruction and has moved on with her life.  I think women are doing great now with IBC.  I wish I could tell you about other women, I just know that one and she is back to her old self.  Maryiz

yuyueno

Maryiz,

Good News!  It is great to hear about IBC survivors.  I feel like my life has just stopped after diagnosis. Everything is on hold.  I am hoping that I can aslo move on with my life after treatment. 

ebann

Hi Yuyu;

I was diagnosised with IBC in April this year. I have had chemo for 6 months. I had Taxotere, Cisplatin first round of chemo, then second round of chemo was Admircyin, Cytoxan, My tumor continued to grow as well. I had surgery the 29th of  Sept. They removed the tumor it was 12.5cm. The chemo is make a hard shell of the tumor and decreased the activity level. My activity was a 6 and is now a 2. So I still have to do more chemo. I am starting that the 30th of this month. I will be doing Taxol, Carboplatin, for 3 months along with radiation. My radiation appt is on the 21st of this month. Then I will be scheduling for that as well. I truly understand about the what if's? I did have a time when I went through that. I am very blessed an I  keep reminding myself of that. I also never imagined that I with be diagnosis with cancer and then to come and find out that it was IBC. I was angry, upset and did not understand why? I still do not understand why? I look towards the future. I do not know if you believe in God. That is what has kept me strong. I feel so weak somedays. I have experienced the good and bad of it all. I believe I will survive it. I do have hope. My life has changed because of IBC. I want to be an advocate for IBC. It is important to get it out. I  wish you so much the best.  Put your fears upon God. Here are some sites of survivors.

http://www.ibcsupport.org/list/

http://www.ibcsupport.org/stories.html

http://www.youtube.com/watch?v=OVuS6s7YPQQ

http://www.ibcresearch.org/stories/inspirational-stories-from-ibc-patients/

I hope that these are helpful for you. I know that I too needed to read that there is hope for IBC. Email me anytime.

Blessings. Elizabeth

Maryiz

I just wanted to add that I believe the pink ribbon campaign by American Airlines is aimed at raising money for IBC.  You can google it and find out, but I believe it was started after learning that IBC was left out of the mix.  Also, MD Anderson is supposed to be really up on IBC.  I just wanted to let you know that you are not forgotten.  Maryiz