Breast Cancer Specialist -Triple Neg

Hi All,

I appreciate the feedback.   

To hope123108:  I went to Johns Hopkins on October 2nd and met with Dr. Robert S. Miller.  Overall, it was a good visit, however, I will not be treating there.  In fact, you cannot receive treatment at JH for BC unless you are currently in a clinical or phase trial.   This was a surprise to me.  I was impressed by Dr. Miller though.  It was evident to me that he truly had reviewed my lengthy and complicated medical/cancer history.  He spent about 90 minutes with me and my husband and was not at all rushed in our discussions.  Unfortunately, for me, there aren't any clinical trials available for me there.   He pretty much affirmed for me that the care I am currently receiving is what I would receive if I were treating with him.  He indicated that the chemo approach my current onc has taken is very good.  That made me feel somewhat better, but overall, I was disappointed that some 'miracle' approach wasn't available.  Dr. Miller did promise to do research to see if there were any trials nationally for which I may be eligible.   He kept his word.  He's found a trial at the National Cancer Institute in Bethesda, MD and put me in touch with the researcher overseeing the trial.  At this juncture, I am going to remain on Doxil for as long as I possibly can.   When the time comes that we determine Doxil is no longer effective, I will be contacting this researcher to gain access to this study.  I'm hoping the Doxil will work for a LONG time, but in reality, I've only been getting 3-4 months out of drug before the progression starts up.  So, I'll keep my fingers crossed.

To Unklezwifeonty, I visited UPenn in May and was seen by Dr. Kevin Fox.  He was very professional, thorough, etc., but didn't offer any great insight into my case.  He did suggest that perhaps I may be a candidate for proton therapy (some form of radiation) in the future.  He also indicated that a new proton center was being built at UPenn and is anticipating a Jan 2010 launch.  He did recommend that my oncologist change my Taxotere from once every three weeks, to once weekly for three weeks with one week off.  In doing so, my fatigue was greatly alleviated.  Dr. Fox also affirmed that for my case, I was receiving very good chemo agents, but he didn't have any other recommendations.  

 As for Fox Chase, I sought a second opinion there in both 2001 and again in 2007.  In fact, in '07, it was Fox Chase that confirmed my cancer recurrence.  I met numerous times with Dr. Lori Goldstein (she's the head of the BC division) and her fellow, Dr. Ben Neggin.   Ben was very informative, helpful, calming, thorough.  Dr. Goldstein was an odd duck.   Although Fox Chase is a fine institution, for personal reasons I decided to stay with my private oncologist.  I know many people who treated there or have treated at FCCC and reviews are mixed.  To each his or her own.

Elliemae32- Thanks for sharing this.  I have her information bookmarked and may be someone I seek guidance from in the future.  

For now, I'm going to stay with my current oncologist.  However, I think that its important to seek additional opinions from time to time.  By doing so, I found out about the clinical trial that may be of help to me in the future.  In the future, I may change docs/facilities, etc., but for now, I'm just going to keep things status quo.

I wish you all well and thank you for the info!   Stay strong!

Kim 

Hello again,

Yes, Goldstein was very strange.  Prior to my cancer being confirmed, she grabbed both of my hands and held them in hers.  While holding my hands, she says that although I have something serious going on, she was 99% sure that it WAS NOT cancer.   She then said perhaps it was lupus or some auto-immune disorder or something.   My husband than chimes in and in a somewhat exasperated voice, asked why I was having so much pain.   She (I kid you not), yelled very loudly..."We may never know the source of her pain!".  I was a bit startled, as was he.  Dr. Negin seemed very embarrassed.  It was just an odd display of behavior for a doctor.   All this aside, this is not why I don't treat there.    

My sister-in-law passed away there 10 years ago from T-cell lymphoma.  I saw her the night before she died and I really wish I had not.  Overall, the place to me just seems gloomy.  Or, like I said, it may be just negative feelings I have because of my sister-in-law's death.   Its just a personal choice for me.  

I wish you well, too.   Feel free to keep in touch via private messages if you like.  Take care,

Kim 

 Ps.  I treat with Dr. Michel Hoessly at Paoli Hematology and Oncology.   He shares a practice with Dr. Jennifer Armstrong.  I see her on her from time to time with expert advice.   He is located just 1/4 west of Paoli Hospital on Route 30, in Paoli, PA.  Phone number is 610-725-0650.   It is a small office, with a small chemo 'clinic'.   Very homey.  The oncology nurses are great.  Office staff very friendly and helpful.  Always lots of goodies to nibble on while getting treatment.  Very intimate environment.  Not sure where in the Philly area you are, but you may want to consider a consult with Hoessly.    

I just sent you a Private Message.   When you log onto the Discussion Boards....near the top of the screen, you will see Forum, My Home, My Favorite Topics and Private Messages.   You have a message waiting there from me.  Also, you can just click on a users name and send them a message.   The Private Messages area is just like an email inbox.

 That nurse sounded like an inconsiderate jerk.