Another disappointment

 

Blood tests came back today. I did not test positive for the antigen necessary for me to participate in the San Antonio clinical trial breast cancer vaccine. I really had my hopes up  – why else would I have been led down this path? That remains to be seen now. If anything I guess it goes to show that as patients it is really up to us to know what is out there in the way of cutting edge research and available trials. The doctors certainly aren’t focused on doing that across the board. I just really am at a very down place right now in all of this. 

I am scheduled for a breast mri next Friday and then my oncologist would like to investigate further into why I am not getting relief from the pain in my side and wants to determine what that is.  He emphasised again today that he does not want to give up on that.  Personally, I am tested OUT, and scanned to the point of “glowing”. I’m not sure what more there could be but he has some ideas.  I told him I want to get past next week’s mri first.

After getting today’s news, I got in my car and turned on the radio and here is the song that was on. Thanks God.

An Update

So I spent Thursday and Friday last week in research/warrior mode, gathering all I could about this vaccine that I had not even heard of before a few days ago…and in the meantime I have gone away to a wonderful retreat with the women of my church and a dear new online friend who is also a survivor. I drove to New Jersey by myself to pick her up, then drove to Pennsylvania together and actually this was our first encounter with each other face to face…a beautiful weekend building memories together and sharing in God’s blessings of friendship and bonding with other Christian women. See our photo at the end of this post.

Here’s the update on the breast cancer vaccine mentioned in my previous post:

 I had a blood test done this morning to screen me for an antigen I must have if I am going to be eligible to participate in one particular trial I did find that is available at Brooks Army Medical Center. Human Leukocyte Antigens have to be tested for when  patient has transplants or stem cell procedures too…it is standard, and rules out the population for whom the treatment won’t work. In my case, it rules out 50% of women like me, so it’s a toss up as to what the blood test results will be. My oncologist agrees that due to my intermediate to high risk of recurrence I am a good candidate for this clinical trial. The good news is that because they are in the military electronic records system they would have acccess to everything they would need to know about my diagnosis, pathology, etc. The other good news is that it doesn’t matter that I am 15 months past active treatment. They have no time limit. The bad news? It is in Texas. That means 6 trips to Texas over 6 months. Texas is hot in the summer. Listen to me! That’s my first concern! Ha ha! (Hey – I know – we lived there for 2 years!) Seriously, though, my best friend next door with whom I have been sharing all of this information with, dialed her friend in Texas in the same city as Brooks Army Med. Ctr. and her friend said she would help with transportaiton, accomodations, whatever I would need! How’s that for fast? I don’t know if I am even eligible or IF I would pursue this given the circumstances, but it sure is nice to know that there are good people in this world. Pondering and praying now…

Disappointed (and a little mad)

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”.

The War On Terror

I’ve been trying to put into words where my mind is now, 2 1/2 years after a breast cancer diagnosis. You would think that by now I would have “moved on” or returned to life as it once was, “normal”. So why hasn’t that happened? I am often asked in my counseling work, how long it takes for life to feel normal again and I must say, I personally have not found that “place”.  Sometimes you hear it referred to as “the NEW normal”, but that is kind of misleading because it doesn’t feel like it should feel and “normal” feels out of reach, somehow. Last week I laid in bed, ready to fall asleep but I wasn’t asleep yet. There in the dark of night,  my mind wandered. I have no idea what brought on the thought, but there I was, in the operating room the morning of my breast surgery and it felt every bit as real as it did on that day.  I had just been through a very painful, torturous node biopsy injection of dye, where I laid fully awake, with no anesthetic (that was the protocol at the time, believe it or not – not so anymore), and now here I was in the O.R. prep room having a nurse attempt for the third time to start an IV on me, yet blowing my veins out at every try.  I was shaking in pain and fear. I could not believe that within just minutes I was going to be rolled into surgery where I was forever to be maimed.  How could they not even get this simple step right? I remember the look that my husband gave them, “Enough you people. Can’t you see she has been put through hell already?”  and  within seconds they gave me an injection of a sedative. That was when tears began rolling down my cheeks to my pillow. I knew in that moment that I am experiencing post traumatic stress. I re-live the  events of two years ago and they are clear as day in my memories.  Why can’t I just say to myself that the cancer is gone and I can go back to my old life? Because no doctor will tell me that I am cancer free and no doctor will say that I have been cured.  I can only liken it to what  soldier must go through when he returns from war. His family is so happy he emerged alive and safe, but in his “world”, the world of war, terror reigns and fear is a familiar voice in the back of his mind whispering “watch out – I’m gonna get you!”  It’s as if I’ve returned from my war, the war on cancer, with the enemy in my back pocket –  just waiting for his chance to come back and attack. When you’ve been attacked once, you never let it go. You never forget.  Ever on guard, always the strategist,  aware on a daily basis of every possible change in your body, every ache, pain,  – it changes you. Survivors told me this when I was first told that I had breast cancer, but I had no idea what that meant – it will change you. You’ll hear soldiers return from the Middle East and say the same thing. It changes you. How can it not?  And those who have never been through an attack, can’t seem to understand, and with that the survivor feels a distance from even those whom she loves.  No wonder military soldiers ask to be returned to their brothers in arms. Coming home is difficult.  Re-joining society after an experience like this feels empty and foreign.  Only other survivors seem to feel your pain and loss. When I was growing up, my father always answered our front door with his gun in his back pocket. It wasn’t as if we lived in a bad neighborhood. We didn’t. We were the upper middle class Americana, where kids played hide and seek until late at night in their yards, and we had annual Christmas potluck parties with all the neighbors. But our home had been broken into once by a burgler when we were away from home, and ever since that experience my dad has never let his guard down. Even now. Even forty years later he is aware that the enemy’s attack is just one broken window away from becoming … a bad reality. Isn’t that what terror is after all? The fear of a very bad reality.