Tag Archives: Phase One clinical trial

Goodbye Avistan and Final Scan Results

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The final results of my March ct scan are in, the RECIST read. The radiologist contracted for the deeper read for this trial signed off on my scan as “no disease progression.” In fact, there was some reduction of disease in the abdomen. I am still trying to get answers about the pericardial effusion but the doctor is out until April 10th so I will content myself with everyone else’s lack of concern! Actually, they see the enlarged lymph nodes as a possible indicator of my immune system fighting per vaccine intent.

Why does my marker steadily rise? How to understand the aggravated lymph nodes and fluid around my heart? For now they are simple reminders that I am in a Phase One Clinical Trial trying to teach my body to fight back my aggressive ovarian cancer. There are many mysteries in this process.

I sometimes feel like the boy in the hills crying, “Wolf.” But the purpose of this blog is to make real life with terminal disease – constant testing, relentless waiting and then unclear results are a significant, routine burden.

The roller coaster of disease ups and downs, engulfed in bigger woes.

The roller coaster of disease ups and downs, engulfed in bigger woes.

For most of 2013 testing was relatively easy because my marker was so stable but as the marker rises, my friends and I with terminal disease find we wait for the other shoe to drop. Stable pronouncements don’t calm as much as they should. But I am determined to accept this news as is – good!

Other news was unexpected. I need to stop taking Avistan, a core drug in the trial, because I have moved into an unsafe range. UPenn is rewriting the maintenance protocol in the hopes that the external review bodies will approve my staying in the trial. I don’t have anxiety about what happens. (My lack of anxiety is also because I am assuming that I will be able to go back on Avistan eventually or still opt in to the Part Two T-Cell Phase when relevant if I take a break from the drug now.)

Avistan is the drug I dragged my heels on starting for 8 months. I was supposed to start with my first recurrence in Autumn 2011. For months I stalled, often calling off the start in the final week even while knowing how lucky I was to have access to this incredibly expensive new drug that many countries and insurance companies refuse to pay for.

I distrusted Avistan for my own hard to justify reasons. It is actually not a chemotherapy agent but rather a “biologic” that works to cut off the blood supply to existing tumors, killing them. When I first started treatment back in spring 2010, I started in a Phase Three Clinical Trial where 2 out of 3 patients were given a trial biologic anti-angiogenic – I still don’t know if I was in the placebo arm or not. It was the marketing overkill, price tag and current reality of what it takes to bring a drug to market that fueled my distrust as well as the rumors that those of us who took the miracle drug got short term payoffs but when the cancer learned to go round it, the result was relentless. I took those rumors to heart. And it is a drug too new to even be approved for ovarian cancer or for anyone to know that proper dosing or use of.

The UPenn team really believes in Avistan and that has lessened my fears. I have now been on Avistan for over two years and my body has gradually been starved by protein being spilled into the urine. Now, I am at grade three status and the risks are too dire for my kidneys. Avistan’s side effects always kicked my butt. Maybe it was payback for my reluctance. Unrelenting nose pain and ever increasing headaches lowered my daily quality of life. I feel joy as I imagine approaching relief of these big discomferts. Ahhhh…..goodbye Avistan for now.

Thank you, dear readers, for staying with me on this roller coaster of disease. I enter a new year ever hopeful! Happy birthday to me.IMG_4850_3

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Philly Trek #14, Treatment #10 – Performance Art

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It’s been a while since I have shared a straight up report on my cross-country treks for medical care. I made my initial visit to Philadelphia, Trek # 1, the first week of April 2013  – a pre-intake intake, hoping to position myself, finally, for admission into the Autologous OC-DC Vaccine Phase One Clinical Trial. I had pursued entrance to this trial for the prior 20 months. We had heard a lot of “no’s” but now we were hearing “yes, maybe.” My cancer was looking stable enough to gain me entrance even if I was still amid my first recurrence. Eleven months later, still amid my first recurrence, it was time for Philly Trek #14, Treatment #10.

Often I have felt like a performance artist when completing my Philly Treks. Now, I model the courageous patient, now I crumble in a hospital bed, and don’t look now, because here the heroine, me, weeps on a crowded bridge as she shakes and vomits up her pathetic orange juice in the fresh snow – again and again and again and again, leaving a small and dainty pattern of no great offence. I, the artist, then continue on towards my housing and a new day that can only be better.

Performance Art

Performance Art

Trek 14, the February trek described in the paragraph above, was not dainty. It’s start was delayed a week by a last minute call from UPenn telling me to find new flights. My luggage already stood packed at the door as I awaited my ride to the airport. A bodacious storm (adjective lifted from one weather forecast) was predicted for the final day of my scheduled treatment, a day that requires a team of ten exact people to be at their posts. The Philadelphia weather projection made complete attendance unlikely. Cancelled, I was.

There could be no complications for my new treatment dates the next week or I would be out of compliance with the trial. Weather forecasts looked good at all ends of my travel but the night before my early morning flight to Philly an airline email informed me both flights were cancelled. I got the last seat in the last flights of the next day, feeling lucky, until I arrived at the Denver airport to see FLIGHT CANCELLED in the monitor. Yes, three flights cancelled in less than 24 hours and the weather was mighty tame. I rushed for assistance only to find not only no assistance but also rudeness. Southwest Airlines, I learn, does not shift you to another airline – and their next flight out to Philly was in 36 hours – too late for me to meet the chemo requirement. When I tried to engage them in problem solving (possible flights that might get me towards Philly on their airline) they said “no” and literally turned their backs on me. Oh my.

Only MY flight cancelled!

Only MY flight cancelled!

While a friend, just completing her own not fun medical procedure, stepped in to problem solve options over the phone, I still felt alone and very, very stressed – this was happening on top of a full week of travel stresses. After an additional $500 of expense and a few tense hours later I was set for the only remaining flight to leave the Denver airport for Philadelphia that night. It was on United and I arrived so late that the trains had stopped running requiring the additional expense of a cab. I was a wreck.

I showed up to treatment the next morning already sick with a migraine. My health did not improve but I did value the team’s dedication to easing my pain.

I decided the rigors of travel on top of treatment just might be too much for this gal.

I have testing and results along with my March treatment – always a dicey combination. My sister volunteered to fly in. It should be a great time to assess. My lab work continues to insinuate disease progression. My December tests were highly contradictory. Maybe this month’s results will offer clarity, always welcome.

What will the tests reveal?

What will the tests reveal?

I have had enough time and new information to feel calm with any outcome.

I am tired of travelling cross-country for monthly medical care and, luckily, this isn’t an endless drill. I either close out Part One in the near future, earning a travel break, or it’s time to move on to Part Two. The adventures of Part Two, T-Cell Infusion, dull travel concerns since I will be grounded in Philly until recovered which could take up to six weeks.

So, stay tuned for what comes next.images-2