Disappointed (and a little mad)

UPDATE  in next posting dated 3-22-11 I had my 4 month follow up with my breast surgeon's office yesterday. My original surgeon is no longer there because he was active duty military and a surgeon in training and breast surgery is not what he ultimately went in to. He is practicing Thoracic surgery now, another type of "chest". Too bad. I really liked him. So I saw another doctor and explained to her my concerns, changes, questions, and she was very quick and to the point, deferred my questions to the oncologist upstairs, and was on her way in about 2 seconds flat, she and her cohort in training, a 12 year old Doogie Howser. 

She put me in for a breast MRI for the first week of April, and as I was standing at the desk waiting to check out I noticed  brochure on their bulletin board. It said "Cancer Vaccine Trial". This interested me because I recently had a counseling call where the caller asked me if I knew anything about a new breast cancer vaccine being studied, and if it were available. I thumbed through the brochure and asked the nurse if she knew anything about it. She told me the study was going on in an office down the hall , in addition to the one in Texas, and she directed me there. Once there, I spoke with the trial director because I was beginning to read that I was a possible candidate for this vaccine and was getting really excited about the prospect! As soon as she asked me when I finished my Herceptin therapy (the 12 month biologic treatment I was getting in 2009) and I told her "15 months ago", her facial expression dropped and she told me that you are only eligible to participate if you are 1-6 months POST therapy.  I asked her how long this trial has been going on and she told me THREE YEARS! I told her I was never offered this option a year ago. Not by my oncologist, not by the breast center, who supposedly was sponsoring this, and that if they were recruiting patients a year ago when I was eligible, why wasn't I told? She didn't know.  That was when I went upstairs to speak with oncology.

I found my favorite nurse practitioner, Katy,  at her desk and asked if she had a moment. I handed her the brochure. I asked her what she knew about it.  Her response was a bit vague and I told her that I was no longer eligible because nobody in charge of my treatment presented it to me when I was eligible last year, Namely, Dr. "G", who is my doctor and the Chief of the department.  Right about then, Dr. "G" just happened to walk into her office.  She asked him if his ears were burning. His excuse for the slip was that it should have been the breast surgeon's office who referred me for the option of the vaccine, but they didn't and my doctor who I had at that time isn't here anymore for me to speak with, and he told me there was some 'falling out' between the chief of the breast center a couple of years ago and the doctor running the trial, and guess who pays the price for that little childish "tiff"? ARGH!

I was so very disappointed driving home.  Once again, a ball was dropped. I try to remind myself that this is only in phase 2 trials and that, while promising so far, there are no guarantees for women like me YET. There may still be a phase 3 later on where they will include women farther out from treatment to begin receiving this vaccine. It targets the body's T-cells in fighting off the her2neu which my cancer had.

Once home, I dove right into researcher mode. I contacted every drug company I could find who is doing new research on this type of therapy, prevention of recurrence of breast cancer in her2neu patients, and within 30 minutes I received a call from Pfizer. They did a short consult with me to see what studies I might be eligible for. It seems there are other options right now but it will take me some time to pour over some of the details and eligibility requirements she sent to me. It's a start. In the meantime I have several phone calls and e-mails in to various drug companies and trial sites across the country. There is a phase 3 trial right here in Northern Virginia which I would have qualified for just 4 months ago but now my time line is too late. So disappointing that high risk patients are not being told about this promising treatment. Maybe because it is only in trials yet, but hopefully there is an FDA approved protocol just over the horizon!

Never underestimate what  cancer survivor will do to stay in remission! Surviving means continuing to fight and fight for your life! Sometimes it might mean getting a little "mad".