On Tuesday June 30, I started a medication I’ve been pursuing for two years!
During the recent ASCO conference, the phase 3 trial results for Daraxonrasib earned a truly unprecedented standing ovation.
https://www.instagram.com/reels/DZDsY1CFFZL
Sorry, having some trouble with YouTube… Please click on my link below to see me and some ducks…
Me taking my first dose, with some ducks
For the past two years, I’ve been trying to get this medication, which many are now calling ‘Darax’ or ‘Dax.’ Even though clinical trials were full and unavailable to me, it has now become accessible via Compassionate Use for those facing life-threatening situations with few options remaining. It targets a genetic mutation found in roughly 90% of pancreatic tumors, mine included. Hopefully, the FDA will accelerate the formal approval so this becomes a standard option for everyone.
My UCLA oncologist rapidly secured my and others’ authorizations, and I am receiving the daily oral medication directly through UCLA. This grants my body a reprieve from traditional chemotherapy.
I’ve tried to remain well enough to qualify for this treatment. My introduction to this medication happened back when my dear friend Bobby traveled to San Antonio so he could join the initial phase 1 trials near the end of 2023.
Bobby called me just 24 hours into the therapy to share that his severe pain had subsided. That relief lasted far beyond just a single day. This medication reduced his tumors in size and number, but more importantly, bought Bobby precious extra months of life.
It hits incredibly close to home knowing that myself, alongside thousands more, will reap the rewards of the comfort and time sacrificed by trial patients like Bobby. It’s a blessing that my own survival is tied directly to the legacy of a dear friend.
Why this treatment matters
- I’m thankful for pioneers like Bobby who gave of themselves to medical trials, whether for this specific therapy or others showing potential.
- I’m grateful for the prospect of gaining some additional time to live.
- I’m feeling some sorrow for the numerous people I know who didn’t survive long enough to see this breakthrough, yet I remain optimistic for future patients.
- Knowing full well that this isn’t a magical cure-all, it makes total sense to me why it was honored with a standing ovation.
Over the last twenty-plus years, only three FDA-sanctioned chemotherapies have been developed for pancreatic cancer. On average, each option offers patients six additional months of life.
Remarkably, this option prolongs survival by roughly 13 months on average, representing more than twice that timeframe!
The potential side effects
This medication is known for causing a notable rash primarily affecting the patient’s face, head, and chest, and I am already coordinating with dermatologists who have expertise with this specific drug. My previous experience with a severe rash during my last clinical trial has proven beneficial; it taught me the importance of being proactive and reporting symptoms when first noticed.
I’ve already let most of my clients and friends know to expect a pretty intense skin flare-up, but the trade-off is that it’s hopefully keeping the tumors in check.
I’ve been experiencing increasing abdominal discomfort right where one of my tumors is located. The intensity has escalated over the past few months. Although I recently underwent a celiac plexus block to manage the pain, it may have changed position.
I am beginning one of the most groundbreaking therapies in treating pancreatic cancer. When I jokingly mentioned to a doctor that it seems like a good time to have this cancer, he chuckled and said there is likely never a good time.
While several encouraging trials are currently exploring combining this and similar drugs with other regimens, I am completely halting my chemotherapy to use this medicine alone.
This allows me to recover from standard chemo while preserving the option to return to them should this medication lose its efficacy later on. (I know of a friend who is successfully continuing on this regimen for over 24 months, but also another individual saw its effectiveness diminish after a ten-month period.)
In fact, here is a quote from her from a NY Times article…
Ms. Caras soon joined a mid-stage daraxonrasib trial. Over two years later, she is still taking her pills every day.
Now 67, she routinely deals with side effects like fatigue, nausea and digestive problems. But her cancer has shrunk. Next month, she plans to travel to Hawaii with her family.
“I’m pretty sure I would not be alive still but for this drug,” she said. “I’m living a pretty good life, and I did not expect that.”
Ms. Caras said she did not know how long the drug would continue to work for her, but she was now thinking years ahead. “I think I could die of something else,” she said.
I really appreciate participating in a support group. I’ve been in contact with other members, who have shared with me up to date info on their experiences and what they’re learning along the way. Beyond the information, the community really makes me feel less alone in this process.
A friend from New Zealand who resides near the Bay Area received Darax just last week. He likened the feeling to the nervous anticipation right before a rugby match. I think that’s an accurate description of hopeful nervousness.
I’m very excited and curious about how this will play out. Some side effects have started within the first 24 hours, but so far, the tools I’ve been given have helped manage them.
Prayer Requests
- That any logistical issues will be streamlined to allow other pancreatic patients to be approved for Darax as soon as possible.
- Grateful for any of us receiving the medication and grateful for those who have sacrificially participated in trials before us.
- Comfort for those families who may hurt having lost loved ones before this drug became more available.
- For my tumors to shrink or disappear in response to the medication and to help alleviate the pain I’m currently experiencing.
- For my upcoming scan the first week of July, to provide a baseline for when I began this medication.
- Minimal side effects for me and wisdom for my doctors as we move forward with this very new medication.
- For discernment regarding going to an annual pancreatic conference in Wisconsin in August. It would be my first time, and I would have to work out flight and travel expenses.
- I’ve been asked to be the honorary starter for the UCLA cancer challenge in October, which I have attended the past two years. The moderator of my main support group served in that capacity before. Please pray I stay healthy and be given wisdom about what to share at the event to encourage the walkers/runners.
- To continue to be diligent and wise with my finances and energy. Both have been affected by my treatment and fatigue schedule.
Thanks so much again for your continued support!
P
P.S. If you’re on Daraxonransib and have questions about your treatment plan, a Hirshberg staff member sent me this helpful infographic.
