People often view clinical trials as a "last resort" but there are times when a clinical trial is the best option for a newly diagnosed patient. If you're newly diagnosed and haven't yet started treatment, here is a trial that just opened in the Boston area. Patients must be stage III B or IIIC HER2 positive inflammatory breast cancer, have not received any treatment for breast cancer, and be 18 years old or older.

This Phase II trial combines paclitaxel with trastuzumab and pertuzumab as neoadjuvant (before surgery) therapy for inflammatory breast cancer. It is a single-arm study meaning everyone in the study receives the same combination of agents. Biopsies obtained during the trial will help the researchers identify which tumors respond well to the study treatment. These data will help identify which patients should receive this treatment in the future.

This research study is a Phase II clinical trial, which tests the safety and effectiveness of an investigational drug to learn whether the drug works in treating a specific cancer. Preoperative paclitaxel and trastuzumab are used as standard preoperative treatment for HER2 positive inflammatory breast cancer. In this study, paclitaxel and trastuzumab are being combined with pertuzumab which is "investigational".

For more information about this clinical trial: http://www.clinicaltrials.gov/ct2/show/NCT01796197   

I am a stage 4 Inflammatory Breast Cancer survivor, diagnosed in May 2001.  In February 2001 when I was 51, I noticed itching on my left nipple that stopped after a few days, and some discomfort in March and April during my monthly cycle.  I specifically remember that on April 13th, there were no visible symptoms, but 2 weeks later, my breast was swollen, pink and warm with fever, a portion of the tissue across the top was hard and I had shooting pain every so often.

When my symptoms were at their worst, I was out of town on business - they seemed to appear overnight.  I saw the doctor on May 4th and he said that the breast tissue was "1,000 times worse than in December" and he gave me Zithromax to take for 5 days.  He hoped that I had an infection, but there was a mass about 8.8 cm that was very strange and hard.  I returned on Tuesday, May 8th, and the doctor was very disappointed that the antibiotics had not helped.  He explained that I should get an ultrasound that day.  I had a very painful mammogram and then an ultrasound.  The radiologist was noncommittal - said he could not tell me what it was or wasn't, and told me to immediately go back to my GYN.  When I did, he was so upset and said the radiologist thought I might have a malignancy, and I should see my PCP right away.

Imagine my shock, when that had never crossed my mind at all.  I left his office to go to see my PCP, whose nurse immediately called the surgeon, and he saw me on two days later on Thursday, May 10th.  Again, I was shocked when he said I had a 50/50 chance of having breast cancer!  I had pain - you are not supposed to have pain with breast cancer; right?  The next day, my husband went to the Internet and did a search with the symptoms, and found an "inflammatorybreastcancer" website.  When I returned from work on Friday, he talked to me about it and asked me if I wanted to see what he had found.  I told him, "If you know the enemy, you can fight it better," and I needed to know what we were up against.

We got the bad news on Monday, May 14, 2001.  When I met my oncologist, I asked him, "Do you believe in miracles?"  He said, "I know there are things that happen that are unexplained."  I told him very firmly, that I did believe in them and he was going to see one happen.

To read the rest of her moving story, visit this page:  
http://www.ibcresearch.org/in-my-own-words-clb/

For more inspirational stories of hope, help, and memories, read IBC In Our Own Words:
http://www.ibcresearch.org/ibc-in-our-own-words/  

ADVOCATE:  recommend, prescribe, advise, urge; support, back, favor, espouse, endorse, uphold, subscribe to, champion, campaign on behalf of, speak for, argue for, lobby for, promote.

Almost 20 years ago, a friend leaned over and said, "I have something wrong with my breast."  My response was to ask when she had scheduled her mammogram.  Little did I know that what I had done in that moment was become an advocate.  So began the odyssey.

My friend was initially misdiagnosed.  A doctor at Emory knew what was wrong  when he saw her mammogram -- even though IBC is not normally diagnosed with a mammogram.  Also she had a palpable mass which isn't normal either.  Our constant refrain as we learned more about IBC was "Why be normal?"

Neither of us had ever heard of Inflammatory Breast Cancer (IBC).  My nurse mother's Merck Manual had a paragraph.  We sat down to read it together.  Mom looked  up from the page and told me this did not look good.

How could I find out enough information to help my friend through this devastating illness and what appeared to be her eventual death?  Excellent treatment from her Doctor and the hospital was essential but we also found a concerned group of men and women online who either had this rare, aggressive form of breast cancer or were caregivers.

Eventually people from this online group coalesced and founded the Inflammatory Breast Cancer Research Foundation.   Our first question was simply why?  Followed closely behind was who is doing the research? And coming up the rear was what can we do?

As members of the IBC Research Foundation we knew we needed to support women and men who had questions.  We got an email address.  This wasn't enough.  Some people needed to talk with a human.  We got a call line.  We designed a website where people could find the most pertinent information.  We created an award winning brochure.  We found ourselves a medical advisory team.  The members of the IBC Research Foundation became an advocacy group.
 
Our purpose was to help patients and caregivers cope, give correct information about the diagnosis and treatment of IBC.  At the same time we needed to bring IBC to the attention of the medical and non medical public.  Prompt diagnosis is critical. Eventually the IBC Research Foundation began to facilitate research with its own biobank and grants to researchers.  I learned more than I wanted to about IBC but I was able to help my friend; answer questions on our contact line; and, continue as a member of the IBC Research Foundation as vice president.  I've even learned to read grant applications.  My favorite job is to mail our brochure and bookmarks.

As for my friend -- we spent yesterday together at our local arts and crafts festival.

Editor's note: for more about the history of the foundation, going back to 1998, go to the About Us section of the site:
http://www.ibcresearch.org/about-us-2/