Chemo change

jenrains

I was diagnosed with stage IIIB, TN, IBC in February 2011. My CT scan only showed 2 small lymph node tumors, and said this could have been caused by drainage from the biopsy (?). I immediately began TAC chemotherapy and was recommended 6 treatments ever 3 weeks. I handled the chemo very well. During this time I had redness on the breast that began to change and get larger. They did a punch biopsy on the skin and confirmed it was the cancer. I have completed 5 treatments and they are now suggesting a change in my chemo. My doctor tried to get me into the PARP trial; however, I did not meet one of the qualifications. They will do the gem/cis (spellings?) chemo that accompanies this; and if no response is shown then I will then qualify for the trial. My question is has anyone else had a similar non-response with their initial treatment and if so, what has worked for you all?

jakaba

Wondered where you are going for tx? I go to Vanderbilt. Have you considered a 2nd opinion? Have they ruled out inflammatory breast cancer? Hope you get some suggestions here as I had a very good response to chemo. Have you checked out tnbcfoundation.org? Very knowledgeable folks.

jakaba

Wondered where you are going for tx? I go to Vanderbilt. Have you considered a 2nd opinion? Have they ruled out inflammatory breast cancer? Hope you get some suggestions here as I had a very good response to chemo. Have you checked out tnbcfoundation.org? Very knowledgeable folks.

Sorry - I didn't see that you HAVE been diagnosed with IBC. Make sure you are going to a specialist in IBC! Best of luck.

Suze35

jenrains - I didn't have IBC, but had a similar experience.  My cancer initially responded pretty well to chemo, but at the end it had developed resistance and began to spread.  I started neoadjuvant with two tumors, 4cm each, and 4 known lymph nodes.  When I had my surgery, one of my tumors was 2 cm, the other 6.5, and I had 8 nodes, including supraclavicular.  I am doing radiation now, just had ANOTHER node pop up above my collar bone, and will be back on chemo in 1-2 weeks.  We are going to be doing Xeloda with Avastin.  So far my scans have come back clear for mets, although I'm getting a liver scan next week and I'm nervous.

I'm so sorry you are going through this.  The good news is the doctors know you did not respond, and now have another shot with a different chemo.  Cisplatin has been shown to be effective in TN's and is a good choice by your doctor. 

I would check out the IBC board - I believe there are a few women who have been in your shoes and are doing well.  Best to you!

jenrains

I am being treated at the Chattanooga Oncology and Hematology group and love my doctor. He was trained at Duke and John Hopkins. I have thought about trying to find a specialist in IBC and if you can recommend someone at Vandy, I would love to try to see them. Just so eager to find the right chemo right away! Thank you all for your responses!