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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25 responses »

  1. Happy Birthday Marcy! Enjoy saying goodbye to Avastin… think of these drugs as a partner who accompanies us along the way and then leaves, allowing the next partner to share the load.
    All the best.

  2. Life on the edge of the unknown. Your image of the roller coaster at sea feels just right Marcy. Happy 54th birthday!!

  3. Wow, that’s so amazingly fantastic! I’m so happy to hear about the disease reduction! Wonderful, wonderful news. I too have heard that enlarged lymph nodes are a positive sign that the body is killing cancer cells. The rising CA 125 could be dead cancer cells spilling their contents out into the bloodstream, or it could be any other inflammation in the abdominal cavity — a hernia, infection, gall stones, really anything can cause it to rise. Trust the good report — the blood tests can’t be relied on. So happy for you!

  4. May this be the happiest, best birthday possible, with an adieu to Avastin, and a look toward spring and better feeling days!

  5. Marcy, i am friend of Penny and Dave E and as per them i have been following your blog. I have ovarian cancer as well and am opting out of chemo. I wish you the best of luck, Marcy, and i appreciate your giving us a run down. There is so little information all around.
    One thing i don’t like is that you can’t get any answers til your doctor is back in town. you’re paying the bill and suffering with this diagnose; i would think your oncologist’s assistant could explain anything to you and would take as much time as necessary with you.

    • Your concern is shared. But the truth is we live in a time of a growing shortage of oncologists and some questions, like what does my pericardial effusion mean are not simple to answer.

      But waiting can be a very annoying part of living with cancer.

      Good luck with your cancer. Have you done much chemo up until now? Are you entering hospice or just hoping to stay stable w.out chemo?

    • Aren’t you smart!!!! And you gave me quite a chuckle – duh!

      Response Evaluation Criteria In Solid Tumors (RECIST) is a set of published rules that define when tumours in cancer patients improve (“respond”), stay the same (“stabilize”), or worsen (“progress”) during treatments. The criteria were published in February 2000 by an international collaboration including theEuropean Organisation for Research and Treatment of Cancer (EORTC), National Cancer Institute of the United States, and the National Cancer Institute of Canada Clinical Trials Group. Today, the majority of clinical trials evaluating cancer treatments for objective response in solid tumors are using RECIST. These criteria were developed and published in February 2000, and subsequently updated in 2009. They are specifically NOT meant to determine whether patients have improved or not, as these are tumour-centric, not patient centric criteria. This distinction must be made by both the treating physicians, and the cancer patients themselves. Many oncologists in their daily clinical practice follow their patients malignant disease by means of repeated imaging studies and make decisions about continued therapy on the basis of both objective and symptomatic criteria. It is not intended that these RECIST guidelines play a role in that decision making, except if determined appropriate by the treating oncologist.

      Marcy Westerling http://livinglydying.com/

  6. same here, Marcy. I just got the boot due to kidneys, also. 4 years on avastin. I feel better than I have in a really long time. Hope you will, also.

    Patsy

  7. Hello Marcy!
    This is Marta. I’m Dr. Tanyi ‘s patient at penn, and just finished the oc dc immuno trial. I have seen you off and on in my comings and goings for my own treatment. Followed your entries for your journey thus far. Just wanted to know how you are doing. I don’t have a Facebook page, but you’re welcome to text, call, or e mail me. When I get an e mail from u I’ll leave u you my #. Love to hear from you.Hope you continue to do well.

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