Simply earlier than his forty first birthday, Dan, a lawyer from Cleveland, skilled a ache in his legs that led to a stage 4 pancreatic most cancers analysis. As we speak, Dan is 45 years outdated, in full remission and treatment-free.
Dan sat down for an interview with CURE, through which he shared his story. Through the dialogue, he shared the second he discovered of his analysis, and the way he finally determined to take part in medical trials for his pancreatic most cancers remedy. He additionally provides his insights into life-changing medical selections, in addition to the significance of advocating for oneself as a affected person present process most cancers remedy.
CURE: Are you able to stroll us via the second you first obtained your pancreatic most cancers analysis and what feelings you skilled?
My pancreatic most cancers analysis got here fully out of the blue. I am from Cleveland, Ohio initially, however at the moment I used to be dwelling in Paris, France with my spouse and two younger children. I had a nine-month-old and a three-year-old, I used to be just a few weeks away from my fortieth birthday, and I had a wierd, deep throbbing ache in my left leg that finally went away, adopted by an identical ache in my proper leg. Ultimately, my spouse satisfied me to see a health care provider as a result of I used to be largely making an attempt to disregard it. I didn’t have some sixth sense or any indication that one thing extra critical was occurring. I used to be nonetheless in my 30s and thought I is likely to be invincible, so I didn’t contemplate it past that.
One morning, I went to a GP in Paris, and by the center of the afternoon, I used to be mendacity on a CT scanner as a result of that they had discovered a blood clot in my leg and needed to ensure there wasn’t something close to my lungs. I walked out of that room, and about 20 minutes later, the radiologist referred to as me again and advised me I had pancreatic most cancers. All of that occurred in a single very swift collection of occasions. I discovered in a short time and violently, in a manner.
How did you cope emotionally in these first days and weeks after your analysis?
I battle to recollect precisely what occurred after I used to be recognized. The recollections I’ve really feel mistaken (I feel I referred to as people who I didn’t, and I forgot that I referred to as folks I did), however I used to be in a short time checked into the hospital, and issues type of unfolded from there.
I come from a household of docs. My three siblings are docs; I’m the one non-doctor. However I knew sufficient about pancreatic most cancers that it was a nasty one, so it was a fairly devastating analysis. Once I wasn’t staring off into the space, I used to be fairly often in tears and really scared. I at all times tried to inform the docs I didn’t wish to know the prognosis; I didn’t wish to know what number of years. I knew pancreatic most cancers is commonly deadly, however I particularly mentioned I didn’t wish to know what that meant when it comes to time, as a result of that information felt an excessive amount of to deal with; it was by no means going to be sufficient time.
I attempted my greatest to not dwell with that calendar counting in my thoughts, which I feel in some methods helped. Individuals method that in a different way; that was my method. I wasn’t in a position to keep away from it for lengthy, as a result of finally a health care provider advised me with out me eager to know, which type of pulled the curtain up. But it surely was a devastating analysis. I feel it’s a devastating analysis for anybody.
From that time ahead, we actually simply tried to get as a lot info as doable about my illness, about what choices have been obtainable, after which make your best option amongst these choices. Generally the choices have been restricted; generally there have been extra choices on the desk than we might have thought. The primary selection we needed to make was the place I used to be going to do chemotherapy.
What components have been most vital to you when selecting your remedy location and plan?
My tumors have been within the tail of the pancreas and within the liver, so there was no speedy want or choice for surgical procedure, which meant chemo was the trail. We ended up flying again and shifting to Cleveland to do chemotherapy there, which I feel was the proper transfer for me and my household. Though the system in France is clearly excellent, we might have obtained comparable care there, however I had insurance coverage that allowed me to do it, I used to be nearer to dwelling, and I understood the vocabulary and the well being system within the U.S. higher than I’d have in France.
That was the primary of a collection of choices we have been required to make. Anybody recognized with pancreatic most cancers or any kind of most cancers is commonly required to make choices they beforehand would have been incapable of constructing, primarily based on imperfect info. I feel that’s one of many greatest challenges, making life-changing choices with imperfect info. That was at all times a problem my spouse, my household, and my staff of individuals serving to me have been continually fighting.
How did you determine to take part in a medical trial, and what influenced your determination to pursue an experimental remedy?
I did two medical trials. The primary one was an immunotherapy and a PARP inhibitor. I did Keytruda (pembrolizumab) and Lynparza (olaparib) for about two years, after which the second was an early-stage trial. Each of them have been via Memorial Sloan Kettering Most cancers Heart.
I knew each from the information inside my household and thru conversations with my treating docs on the clinic that chemotherapy was solely going to work for thus lengthy, or my physique would solely be capable of tolerate chemotherapy for thus lengthy. That was not an finish state. That was step one of hopefully at the very least just a few steps.
As soon as we bought settled again in Cleveland, as soon as I began chemotherapy, and as soon as I used to be settled into that routine, we began asking questions of my oncologist on the Cleveland Clinic: what trials was the clinic concerned in? What choices and alternatives did they see for me? We had these conversations throughout the Cleveland Clinic world, after which my household started trying via clinicaltrials.gov. They have been snug sufficient with the vocabulary and all the pieces else to pinpoint choices primarily based on the genetic markers I had, the stage of the illness (which was stage 4) and the truth that my tumors have been responding to chemotherapy. They have been in a position to establish completely different hospitals and teams across the nation engaged in pancreatic most cancers trials that I would finally be eligible for.
About midway via my chemotherapy, they began sending messages, saying, “Hey, you guys are working these trials. We’d like extra info. Might we get a secondary session with you?” We went via the entire clinic onboarding course of, the insurance coverage course of, and ended up having consults with each the MSK staff and the MD Anderson staff. By that, little by little, we bought extra info on what I’d be eligible for, and we ended up making choices about which paths to pursue.
The vital factor about that — there are a few issues. Primary: sufferers must advocate for themselves. They should ask questions as early as doable: “Is that this working? What’s subsequent? What can I do subsequent? How can I discover out what to do subsequent?” If that includes seeing different docs, no physician ought to be upset that you simply’re looking for further opinions. It’s unusual, sufferers going through one thing as tough as stage 4 pancreatic most cancers gained’t essentially wish to let their physician know they’re seeing one other physician, or they won’t wish to ask about different docs as a result of they don’t wish to be rude, harm somebody’s emotions, or assume the physician will get irritated. Any physician I’ve met doesn’t assume that manner.
Sufferers must really feel snug asking for secondary consults, different opinions, and extra alternatives. Not each oncologist has all the data. Completely different individuals are doing various things at completely different occasions, and treating oncologists aren’t essentially the identical folks conducting the trials. The extra info you will get, the extra questions you’ll be able to ask, and the extra conversations you’ll be able to have, the upper the chance you’ll uncover alternatives your treating oncologists didn’t know existed.
Exterior of conversations together with your physician, in the event you can determine tips on how to use clinicaltrials.gov, that may be a nice useful resource. It’s not very user-friendly, and the vocabulary could be tough, however ChatGPT plus clinicaltrials.gov might help establish potential trials you’ll be able to then focus on with docs who might need different alternatives. I’d actually encourage folks to do each of these issues to the extent they will.
Transcript has been edited for readability and conciseness.
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