It has been a difficult few weeks, both physically and emotionally. I know I have been saying that all too often lately. I can feel the tumors growing, the bloating getting worse, the discomfort and pain becoming more consistent, breathing becoming more labored. I hate this body I am trapped in, forcing me into a life as an invalid. It is a life I do not want- another year of chemo, another year of lockdown, just as the world is cautiously and hopefully opening up. This pandemic, this isolation, this life on hold, has broken me. Cancer has made me crazy, how can I wake up dreading every day, feeling suicidal, panicked about the suffering headed my way, while simultaneously fighting so hard to live? I hate cancer!
I finally have a chemo start day, but before I dive into my care plan, I will toot my own horn. More precisely, my friend and author Mary Biles will. She wrote a piece for Project CBD, profiling medical Cannabis patient activists for International Women's Day. I was honored to be included with other amazing women working to change the word. Knowing that sharing my story and struggles might help end the mess 50 years of Schedule 1 prohibition has created is the only thing keeping me going. So thank you Mary for sharing my story.
Two weeks ago we received the last of my genetic testing, a comprehensive panel of 600 cancer biomarkers performed by CARIS. Almost everything came back negative. My only target remains STK11, and the ubiquitous but undruggable TP53. The tumor is PD-L1 and estrogen positive, giving me maintenance option of Keytruda and an estrogen blocker when chemo is finished.
The functional profiling results from SEngine in Seattle confirmed my tumor would likely respond to Decitabine, which targets STK11. SKT11 is only mutated in 1% of ovarian, so this drug, while approved for leukemia, is in a phase 1 trial for solid tumors. This result is exactly why patients with metastatic disease should consider functional profiling, rare mutations may provide out of the blue treatment options. The functional profiling also showed great response to the usual standard of care choices: Taxol, Carboplatin and Gemcitabine.
After first and second opinions, investigating clinical trial options, talking to Dr. Emma at Cancer Commons, we decided to opt out of a Decitabine trail and head to standard of care. There were three main reasons for declining a RCT. 1. Being unvaccinated and traveling to LA for treatment seemed risky. 2. the toxicity of the trial did not seem worth the unknown benefit. 3. taking Cannabis during a clinical trial would taint the data.
For this 4th line treatment I will have a chemo couplet of Gemzar (Gemcitabine) and Carboplatin, with Avastin for dessert. This nice graph from Clearity Foundation summarizes recurrent ovarian treatment options. You can see my next adventure listed 5 lines down, under the "oceans" trial. This treatment combo has a response rate of almost 80% and disease free progression of a year. So we have reasons to hope I will get back in remission and have another year. I hope it is a good year, a year I want to live, a year my body feels OK.
Delaying chemo was, in part, with the hope I could get vaccinated before I start. This chemo regime is both drugs on day 1, then Gemzar only on day 8, and 2 week before doing it all again. Dr. W warned me against getting vaccinated within a week before or after infusion, so that only leaves 1 day for getting vaccinated. And as I continue through chemo I will become immunocompromised and might not make much of an antibody response to the vaccine. So it was important to get the jab now. Watching my older acquaintances, most of whom are perfectly healthy and can easily stay home, get vaccinated while I suffered in pain, delaying chemo for weeks, was devastating. Nothing has made me feel quite so worthless, society has already given up on me. I tried to get myself added to the end of the day "extra" dose lists, only to be told I was ineligible. My friend Laura generously offered to volunteer at the vaccine clinic and donate the vaccine she would have received to me, only to be told no by the coordinator. A retire nurse friend wrote a letter, explaining my desperate need to start chemo, still no, not eligible according to the current roll out phase. I know there is no perfect way to distribute these vaccines but delaying vaccine for metastatic patients desperate to start chemo seems cruel. And unwise. I have lost count of the number of trips I have made to the hospital, clinic and Dr in the past few months. Pre op, surgery, post op, ER, hydration infusions, blood work, palliative care, more bloodwork, all unvaccinated and at risk. I know my story is not unique. Over 130 cancer centers have written open letters pleading for cancer patients, especially those in active treatment, to be prioritized. I hope this situation resolve itself for everyone in need. I have finally been allowed a vaccine appt and will start chemo on March 17th. I am so grateful. And while I know we are all anxious to get vaccinated I hope those people for whom a few weeks would make a big difference can go first. In a timely coincidence, NYT has just published a story about this exact problem.