My Novel about NIH

Howdy Friends. It's been a little while since I have posted a health update and I have a fair amount to fill you in on, so I figured I better get started before I start to forget everything or before I become overwhelmed with even more new stuff.

After about 2 weeks of living in semi-denial and overwhelmedness at the news of my liver tumor(s) (I am really unclear about how many there are at this point) growing, I finally snapped out of it (a little) and started to do something about it. Thanks to a little help from one of the doctors at Hopkins, my husband, and some prodding from my support group, friends, and family, I called the National Institutes of Health (NIH). I located 2 clinical trials there that may or may not be suitable for me and set up a consultation with the National Cancer Institute (NCI) Center for Cancer Research (CCR).

So, on Wednesday, May 2nd, my parents and I embarked on our first epic journey to the NIH. I say epic, because well...it was quite a journey for us quiet folk from the rural hills of south-central Pennsylvania. The journey involved all of us arising at the first crack of daylight, hastily drinking some coffee and tea, fretting about what to bring and what to leave behind, what to wear, when to leave, how to get there...you know...the usual. My family and I. We fret.

We hit the pavement at about 6:45am and hopped onto I-270 to join the ranks of early morning metro DC commuters. We quickly fell in pace with the warped race speed of about 16 mph. This drive consisted of...well...more fretting, my Mom reading road signs to us (another favorite past-time of the ladies in my family) and my Dad counting the number of people who were illegally driving in the HOV lane. We passed time quickly, and witnessed the aftermath of only one minor accident, as we arrived at NIH within an hour of our departure.

Once we drove onto the NIH campus, we were guided to the first security stop. Not knowing what to expect, we were all a hot mess of questions and bewilderment. I stopped and turned off my engine. A security guard wrote down a number on a small slip of paper and advised me to drive forward. I took said paper and immediately lost it. I drove forward, stopped, and turned off my engine again. This time we were advised to step out of the vehicle. God help us. You know how kids like to play "Chinese fire drill" at stoplights and all get out, run around the car, and get back in? Yeah. We were the antithesis of this. Just getting out of the car, we were already holding up the works. After standing outside in bewilderment, we were advised to go inside through some secret passageway (not really...secret to us because we were too clueless to find the entrance). Once inside, we went through what appeared to be just like an airline security system. We all made it through unscathed. We then had to proceed to a check-in desk, show ID and provide some information in order to get our visitor ID badges. I was asked for the number on that little slip of paper I lost, which turned out to be my license plate number, which then I had to go back outside to retrieve, gumming up the works even more. Sigh.

We were then advised to drive back the way we came in and to follow the road through 8 stop signs (eight!), until we reached the parking garage of Building 10. So we counted off stop signs..1, 2, 3, 4....found the entrance to the parking garage and parked. Then we walked and walked and walked through the bowels of the parking garage until we found an elevator. Once we boarded the elevator, I felt a sigh of relief, until we exited the elevator and I realized we still had no clue where we were. We again walked and walked the labyrinth of halls within Building 10 until we finally found the Admissions desk. I registered. This was an hour long process. Not counting the hour it took us just to get to the desk. Ha. 

Eventually, we headed up the the 12th Floor Clinic (which may or may not be my new home in the coming weeks). Here, I got poked and prodded, measured and oriented. Then they moved my parents and I to an exam room where I was examined by one of the Post-Doc Fellows. He asked a lot of questions that I am sure made my parents squeamish and uncomfortable. Sorry about that Mom and Dad! In his defense, he asked if it was ok to ask these questions in front of them, to which I said "sure". I keep a pretty much tell-all blog for goodness sake! LOL.

After this exam, my parents and I sat for TWO HOURS and waited. At this point, I was feeling a little irritable, I was disenchanted by NIH in that moment for sure. But, alas...finally. Two doctors, a research nurse and my fellow arrived.

During this part of the visit, I was given information about a clinical trial for a chemotherapy drug called ixabepilone. This drug is used as a second-line therapy in breast cancer and they are testing it on patients with cervical cancer who have shown resistance to many of the drugs with which I have shown resistance. Side effects and treatment are similar to everything I have experienced with previous chemotherapies. Success so far shows tumor shrinkage in about 15% of the patients. This is not a cure. This is a trial that would "buy me more time" per the doctor.

The doctor then stated that because they want to find the best treatment for me, he brought in another doctor with a completely different approach. This doctor explained (and you have to forgive me if I get some of these details and medical things wrong...but I will give you the gist of it in my uneducated prose) that what his team is doing for patients with cancers related to the HPV virus, is taking tumor samples from the patient's body and putting them in a lab. In addition to the cancer cells, inside these tumor samples would be the patient's own immune cells...specifically T-cells, which are known to destroy virally-infected cells and tumor cells. They would harvest the T-cells til they had a gadzillion times more than what they started with. Then, the patient is hospitalized and given a chemotherapy to specifically destroy the patient's immune system. Then the T-cells are transplanted back into the patient, with the hope of killing off the tumor. This has been successful in patients with melanoma. This could offer a cure. Sounds scary, but also potentially awesome. I would only qualify if we can get me off of the steroids though. Otherwise, they are interested in me.

I, thirdly, spoke with a nurse about another chemotherapy trial. This one is for two drugs known as dasatinib and bevacizumab. I have tried neither type of drug before and the dasatinib showed up on my targeted study as a drug that could potentially be of clinical benefit to me. This one is another that would not be a cure. It would "buy me time". They are specifically testing these drugs on "advanced solid tumors" such as mine.

So...where does this leave me? With options and lots of questions and some serious decisions to make. But wait! There is more. The doctor scheduled me to come in the following day for a CT scan to see what my tumors have been doing the last month. The idea was that this would give me an idea of how aggressive I need to be with treatment, whether my current drug (tamoxifen) is doing anything, and just in general where I currently stand health-wise. I traveled back to NIH alone on Thursday (this time I did not have to go through security and things went much more smoothly). After my CT scan, I saw the doctor (and the scans). The liver tumor has again grown. Not so much this time, but enough. As he puts it, the liver tumor is "moving along". The "stuff" in my pelvis on the other hand has either reduced in size or has stayed the same. Per the doctor, what is in my pelvis is "notsomuch". It's the "medium-sized" tumor in my liver that we really need to deal with. And soon, before it gets too much bigger.

At this, the doctor suggested something that I have been asking about all along. This, per the doctor, is "outside the box", but there is a possibility that we could go in and "kill the liver tumor" and "cut off it's blood supply". Then deal with the pelvic stuff separately, with chemotherapy or with the T-cell immunotherapy. Having some sort of liver surgery sounds hella scary to me (especially given my extreme dislike of a simple liver biopsy), but if we can do it...I think I want to try it. He has me coming in tomorrow (Monday) for a MRI and PET scan. Both of these tests will give us an even better idea of what we are dealing with in the liver and if this is even a plausible idea. So...back to NIH tomorrow I go. 

To sum all this up...I am excited about NIH and about this doctor in particular. He spent a long time with me on Thursday answering all my questions and listening to my concerns. He seems genuinely interested in finding the best approach for me, whether it's his trial, someone else's or something completely outside the box. He even emailed me after 9pm on a Friday night to advise me that I should have him paged after my MRI on Monday and that he was looking forward to seeing me. I have that feeling of "why did I wait so long?" But, I also know that thinking that way won't help. I am here now. That's all that matters. 

One more thing...I know that I have some big decisions to make and I know some of you will want to offer your advice and opinions about what I should or shouldn't do and I get that. But, for now, I would appreciate if you refrain from sharing your opinion unless I specifically ask.  I just don't want to get overwhelmed and confused with everyone's well-meaning advice right now. Instead, I ask that you please please please pray that I am able to make the right decisions for me and that I find the best treatment that will hopefully not only prolong my life, but save it. I want to be around to pay it forward and to give others hope and to just generally appreciate life in the way I didn't or couldn't before all this started.

Thank you!!!!!!! Love, Vashni