Warning....long story that describes the typical way things seemed to be handled in medical care. Or don't get handled. Often one hand does not know what the other is doing.
I get online alerts about any news that refers to uterine or endometrial cancer (because UPSC is so rare, there is hardly ever any news about it. I just found out today that it does not even have a listing in the national cancer database!) I firmly believe that every cancer patient has to be her own advocate because otherwise, you just fall through the cracks. No one is really looking out for you. I do not care who your doctor is or what hospital you use. Oncologists have tunnel vision. They treat you and check on you every few months but nothing in between. Any problems, you are told to see your primary care doctor. Thank goodness for those wonderful chemo nurses that I see once a month when I get my port flushed. They answer questions, write scripts, and generally offer comfort. They are special women.
I am always looking for drug trials. I do not mind the thought of being a guinea pig, although I am not altruistic enough to do it if it would not benefit me. So when I got an alert about a vaccine trial for endometrial cancer, I was excited. It mentioned a Phase 1 trial, which means that the vaccine has not been used in humans and it is going to trial to determine dosage and safety.
So on February 16, I e-mailed the pharmaceutical company in Portland, OR that is producing the vaccine. The woman who answered my e-mail said she was forwarding it to their clinical director. I heard nothing from him for a week, so I e-mailed him. He wrote back and said he would be glad to answer my questions, so I told him my story and why I was interested in the trial, because I do not want to just sit here, waiting to cancer to recur. I want to DO something. By now 12 days had elapsed from the time of my initial inquiry. I did not hear back from him for another week, so e-mailed him again. Finally, he wrote back and said to call him. On March 9, I did call him and he gave me a contact at a military base in Texas. Why didn't he just give me this information at the beginning?
Then I emailed the Texas contact who, it turned out, has nothing to do with the trial, but she sent me the contact information for the nurse who was running the trial - in a location near DC. A ha! I thought, close to home.
Unfortunately, the phone number for this next nurse was "out of service" so I e-mailed her. I saw that the e-mail address was that of a foundation, so I googled the foundation and after some further research, actually found information about the trial! I called the foundation and left three messages in three different offices. I was just so tired of getting such a runaround.
The nurse I had e-mailed got back to me two days later telling me that she was running the Phase 2 vaccine trial for BREAST cancer. GRRRRR (Phase 2 means that dosage has been determined, they are seeing some efficacy, and it has been deemed safe enough to proceed).
Yesterday I FINALLY got a call from someone doing the trial I was inquiring about, someone in an office where I had left one of my messages. Keep in mind, it has been almost a month since my initial inquiry and I have "traveled" from Oregon to Texas to Virginia!
I talked to this nurse for an hour yesterday. She was very enthusiastic and informative and after our conversation, she faxed me the 15-page consent form. Rather daunting, as was the thought of six monthly trips I would need to make for two days to Virginia for the vaccine. But I could handle it. I told her I was going to e-mail my doctor's oncology nurse at Hopkins right away, which I did. The oncology nurse called me this morning and said she was going to have my doctor call me on Friday to discuss the trial and gave me a contact in pathology (the trial protocol requires a tumor sample. Hospitals keep these for 10 years).
So I thought I had things under control. Until the trial nurse called me at noon to tell me that I am not eligible for the trial because I am not a patient of the gyn onc group associated with a certain military hospital near DC. (The trial is sponsored by the DOD) Now certainly she knew this yesterday about me! Didn't anyone tell HER? Maddening! She said I could change doctors and then they could take me. But frankly, it is all just too much and I decided not to pursue it any further. I was beaten down by all this effort, to be honest. I also knew that I probably would not get any benefit from this trial. It is Phase 2 where the patients see benefits. The nurse told me that she would keep me in mind for Phase 2, but that will not be for three years.
All of this was just so discouraging, from the lack of organization and the bad referrals to the lack of knowledge of the protocol. Very upsetting and disillusioning.
But I will keep trying to find things that can help me. I am persistent!