My Medical Aid in Dying Drugs
INTERESTING STUFF – 15 August 2020

Cancer Cures? Do Not Presume

In the past, I've written about fake cancer cures and it is time now to do it again. Except. EXCEPT, this one is not fake. It is a real treatment for pancreatic cancer that is still in development.

In the past few weeks, four or five emails have arrived telling me I should look into this treatment.

It is no surprise that these messages have arrived now. In the same time period there have been several news stories about Jeopardy! host, Alex Trebek, former U.S. Senate Majority Leader, Harry Reid, and their treatment with the drug, Abraxane.

As Michele R. Berman, MD and Mark S. Boguski, MD, PhD wrote at Medpage Today on 28 July 2020,

”Reid was diagnosed with pancreatic cancer in May 2018. He underwent surgery at Johns Hopkins University, followed by chemotherapy and radiation treatments. However, his cancer worsened.

“Fearing he was near death, he got in touch with Patrick Soon-Shiong, MBBCh, inventor of the protein-bound paclitaxel suspension sold as Abraxane. Soon-Shiong was working on a combination treatment that he refers to as a 'triangle offense' for refractory metastatic cancers such as breast, lung, and pancreas.

“Reid became one of four patients in his compassionate use program. Reid traveled from his home near Las Vegas to Soon-Shiong's office in Los Angeles.

“After six months of treatment, no evidence of cancer was found on Reid's scans. A June 2020 article in the Washington Post confirms that Reid is still in remission, nearly two years after his diagnosis.

“Trebek also seems to be showing improvement on the regimen.”

Patrick Soon-Shiong is an intriguing man. The short version from Wikipedia tells us he was born 29 July 1952,

”...is a South African-American transplant surgeon, billionaire businessman, bioscientist, and media proprietor. He is the inventor of the drug Abraxane, which became known for its efficacy against lung, breast, and pancreatic cancer.

“Soon-Shiong is the founder of NantWorks, a network of healthcare, biotech, and artificial intelligence startups; an adjunct professor of surgery and executive director of the Wireless Health Institute at the University of California, Los Angeles; and a visiting professor at Imperial College London and Dartmouth College.

“Soon-Shiong has published more than 100 scientific papers and has more than 230 issued patents worldwide on advancements spanning numerous fields in technology and medicine.

Oh, wait. In his spare time he is the owner and executive chairman of The Los Angeles Times and The San Diego Union-Tribune.

Soon-Shiong's biography isn't really important to what I'm here to say today but I have included this brief excerpt because I didn't expect something so interesting when I was tracking down the information I needed about Reid's and Trebek's pancreatic cancer treatment.

What I really came here to say is that with the arrival of each email telling me I should look into treating my pancreatic cancer with Abraxane, I became angrier and like so many other things in my life, I suspect I'm not alone in my resentment of the intrusion and the assumption I would run right out and get me some.

Just the word, cancer, is fraught – at least in the United States – so much so that when I was a young woman, it was only whispered when a friend or relative was diagnosed. No one said it aloud.

We have gotten away from that in recent years as a few cancers have become treatable or curable, but it is still the number two killer in the U.S. (after heart disease) and is 23.1 percent of all deaths.

This disease doesn't fool around.

Although I am prepared to think that those people who sent the news stories meant well, they have no idea about my pancreatic cancer or, apparently, cancer in general. They don't know that I also have peritoneal cancer, lung cancer and probably a few others by now - it has been on the move in my body at least since early this year.

COPD, diagnosed more than a year ago, throws another complication into the mix. My doctors undoubtedly know about the trials with Abraxane, but no oncologists like telling patients there are no more treatments available and they don't do it on whim.

We all want to live and to do it for as long as possible so it is cruel for know-nothing strangers to forward links to stories based only, as far as I could tell, on the fact that they have the word “pancreatic” in them.

I have worked long and hard over the past three-plus years to come to terms with my cancer and where it is leading. Most of the time I am doing well at that but it is a delicate balance.

Even someone like me who takes pains to always concentrate on what is real and true can, for a moment, be sidetracked into a fairy tale for awhile, and then must claw her way back to sanity.

Did any of the people who sent those emails bother to read the part of those stories explaining that ONLY FOUR PEOPLE are in the COMPASSIONATE USE TRIAL? Did any of them bother to see if those two celebrities have COPD and two other kinds of cancer?

Maybe Abraxane will turn out to be a successful cancer treatment, something new that will give many patients many more years than most can expect now. God, I hope so.

But would you take an unproven COVID-19 vaccine that only four people have been given? I didn't think so.

It's a better idea to help a friend or relative with cancer get through the activities of daily life than tantalize them with a false hope.

Comments

Ronni,
I appreciate the rawness and honesty of your post. If only, we who have come to care so deeply for you, could embrace the witnessing of your journey...and let go of the fixing part.

Soon-Shiong sounds rather like the Elon Musk of medicine. Let's revisit this maybe a decade down the road and evaluate it then, along with outcomes of Musk's launching of hundreds, perhaps thousands or more by then, of satellites into the skies.

I have no idea of the cost of this treatment, but I would imagine it's quite high. So the elite, like Senators, celebrities and such can access it, but beyond that it may be out of reach?

Thank you for your continuing honest reaction to such things as this.

I, also, would find such missives extremely unwelcome. I suppose I could try to listen to my better angels and just accept that those folks sending you such recommendations mean well. Undoubtedly they do mean well. But I have a close relation who is one of these types, throwing things out there without thoroughly (or even superficially) considering how they might land. I call them "crazy-makers". To be avoided where possible. Sending you virtual hugs. Although we've never met, Ronni, you are never far from my thoughts.

Ah, the "Fixers" of the world -- long the bane of my existence! I have MS, and everyone seems to know more about how I should live with it than I do. The presumption is galling. And yet, many of the fixers are people I love, and who love me. I take a deep breath and gently explain that I do not need or welcome their advice. When I have lost friendships or relationships over this issue, I accept that it was for the best.

Wishing you well on your (well thought-out and right for you) path, Ronni.

It hurt me to read this post as you have enough going on without a fantasy stardust being sprinkled on your life. These "helpers" are everywhere, irritating us with mantras and cider vinegar and snake oil treatments. We're just not doing the dying right in their minds.
So sorry Ronni.

XO
WWW

As soon as I read that the guy was a media mogul I thought "Nah!" I can't imagine you, wonderful journalist, wouldn't have investigated anything legit.

Yikes! I do this with my sister who is very overweight and has some kind of autoimmune disorder that multiple doctors cannot figure out the cause. My suggestions to meet with a nutritionist because maybe her diet and weight are contributing factors always leads to her getting angry at me because she does not believe that is a factor. Your post has helped me see that I am not being helpful at all, and it doesn’t matter what my intention is. I am committed to never do this again. Thank you for sharing.

We readers learn so much from you--not just about your trials and tribulations--and many positive things along the way, but also about ourselves. Thank you for sharing so much of your story with us.

I am going to watch my friend's bird, she's recently diagnosed, is going to visit family and friends so taking your advice Ronni, helping her with her daily life, Shabbat shalom, and love, m

I'm sorry people are doing that to you!!!! I've always though their fear of death makes them grasp at any straw. My parents each reached their cancer fork as you have. Get the most out of life each day that remains-they did, and they taught us kids about Grace.

I admire your commitment to writing your cancer story and attempting to educate.

Hugs to you and I hope today brings you some good moments!

My experience has been that those who offer these "solutions" are responding to their own anxiety, even as they believe they are focused on being helpful. I have had to set limits on my own interactions with such helpfulness. You speak clearly of the pain caused, the angst, and added craziness of living in that world. Hugs, and more hugs.

Well meaning or not, Ronni, these folks are behaving badly. We all need to learn that there are areas where we can offer advice (what kind of car to buy) and others where we have no right to meddle. My brother has mesothelioma, which has led me to expand my reading about dealing with mortality (news articles and books along with your blog, which I read long before your diagnosis). I take my lead from him on what he feels comfortable talking about, and I NEVER give him advice. His disease, his decisions. I wish I could scan your emails every morning and delete those troublesome ones. We are all very grateful for you.

I'm sure the people who sent those emails meant well, however annoying they might have been. Blow them off and move on. You're already in the care of experts.


Oh, this was a sock to the gut. My beloved sister, teacher, guardian, died the night before of leukemia, at about 3 A.M. In a Boston hospital. The next morning, about 9 or 1o, a well meaning fool, perhaps known to my mother, but not to me, rang the front doorbell, and I opened the door. She smiled uncertainly, and said something like,"I want to tell you about a new cure for leukemia." I choked out something, and shut the door. Oh lord...............I'm sorry you've been suffering fools of a similar sort. I only had to deal with one. Why can we not simply BE, 100%, with the one who is working through whatever they are working through? I think the person who linked it with anxiety is correct. It's often hard work to sit with someone else's hardships, as they come to what is, truly is, the best path for them. That is true compassion.
You share your truth with us, that is a true blessing. You bless us with your truth, it is a light ahead on the path.

Can't add a thing but will share for others to read and ponder.

Dearest Ronni, I am filled with sadness and pain at the thought of losing you (what shrinks call "anticipatory grief") Some people who feel this way will do or say anything
to ward off the deeeper hurt they see ahead. This is not to talk you out of your legitimate anger. But if you consider the roots of these unwelcome intrusions, it might make them easier to bear.

Wow I’m the oddball here, but of course, I’m not in your shoes.
If advice came from a close friend, or friends that don’t appear to be into health food conspiracy theories or so-called natural medicine, I’d feel appreciation that they thought enough of me to care and send me some information. I’d thank them..maybe say I’ll discuss it with my Dr. Then I’d do some of my own research and decide if it was worth a mention.

Now from strangers or loose connections like mere acquaintances, I’d be less inclined to bother.Or anyone I knew who had questionable critical thinking or sound reasoning abilities.

If it sounded halfway legit after doing my own research, I’d at least check with my Dr.
That’s just me....

Ronni, your compass is true . . . I am grateful for your support and inspiration. I count you as a gift in my life.

So sorry you were put through this angst.

I know this story all to well. I appreciate your speaking out on this issue. When we or a loved one is going through something so difficult its hard to be second guessed by someone who thinks they are smarter. We pick our medical team for a reason.

I'm so sorry, Ronni. But, I'm glad you wrote this.

I’m not sure what impulse makes some people think they are obligated to share their notion of what might be good for someone else, but I’m sorry you’ve had to deal with that.
I’m glad you posted this; sometimes it’s good to be reminded of the value in keeping our mouths shut.
Blessings, in abundance, to you Ronni.

My heart feels you. And for you.

At each step of the way, you are courageous and honest.

This is a good reminder to me that people just want me to listen. I should never offer advice unless I am asked. One of the many lessons I still have to learn.

Thinking of you with love.

I've got a Weird Rare Poorly Understood Illness Thing which comes with unpleasantly low blood pressure, and I eagerly, eagerly welcome ideas/this-worked-for-me/this-worked-for-my-buddy-with-the-same-thing information *from people who have this condition or related conditions* because, due to the frankly lousy communication between specialists who work with this, that's how I've gotten probably 60% of the Things That Actually Help Me. I mean, that set of Things That Actually Help Me has been collected in a "we maybe get one thing that works out of each 5 things tried" (medications, dietary changes, supplements, lifestyle adjustments, PT) - but the friend-recommended set is ahead of the doctor-recommended set on winners/losers.

*However* that is not cancer, which has more field awareness/cooperation, and also I ignore and often loathe recommendations from people who don't know anything about this illness, or who have Poor Reasoning Skills. (because a probiotic that has a minor degree of study-demonstrated efficacy against C. Dificile [which I don't have] and that was developed by a rocket scientist [not a doctor] and that, on Temporary Sale Act Now Act Now Or You'll Miss It, costs $5/day... is *clearly* going to fix all medical problems. Or possibly not.)

I guess: if you really know what you're talking about and have checked that the treatment involved is at a "people can have it" stage rather than "eh, in three years it might be available?" stage, then ask me if I'd be interested in hearing about something you've learned about, or preface the email with a disclaimer (that you actually mean). If you just read a news article, don't. And if you only had direct marketing for a Silver Bullet cure for every ill known to mankind, then leave me alone. Period.

Bah, humbug, to "fixers" although most probably do mean well. Many of us may be tempted to grasp at straws to preserve the lives of our family and friends even though the straw doesn't really exist, and we lack the expertise to separate snake oil from a possible breakthrough. I hereby commit to double-checking and resisting any lingering "fixer" impulses I may have.

Bottom line for me: I believe that if "the fix" for cancer (or any chronic, life-limiting disease for that matter) were truly available, it would be widely disseminated and utilized by the medical community. Doctors are not omniscient, true enough, and there are many problems with our profit-driven healthcare system. (IMO, profit has NO place in healthcare.) Treatments of questionable value exist, but I'll place my bet with known science and demonstrated results every time--until the day I decide not to.

I'm happy to read you being appropriately angry. That's what living people do. And you like being alive most of the time it seems.

Love ya.

Ronni, You know best about your own body. Thank you for your raw honesty sharing yourself with us. Thanks for taking us on your path, to glimpse the walk in your shoes. You are loved.

Thanks for sharing. I've spent a lifetime with asthma as the object of poor to downright weird advice as well as the occasional ' it's in all in your head idiots." I wish them all a kick in the pants from me and you.

I identify with your feelings. I have COPD and a second round of lung cancer. I find it so degrading to my intelligence when people tell me I need to fire my team of doctors and go to a cancer center. I trust my doctors, I am confident of their ability. What do these people know about any of it really? Not a thing. Love your post which allows you to get your frustration out and mine as well thru you. Best to you as you continue to make decisions based on your knowledge of your situation and what is best for you.

I am always grateful for your clarity of thought and harsh-when-necessary honesty. I am also grateful for so many of your readers' contributions and reflections. And I feel very fortunate to be one of your readers.
Knocked it out of the ball park once again, dear Ronni. Thank you.

Mary said...
"Wow I’m the oddball here, but of course, I’m not in your shoes.
If advice came from a close friend, or friends that don’t appear to be into health food conspiracy theories or so-called natural medicine, I’d feel appreciation that they thought enough of me to care and send me some information. I’d thank them..maybe say I’ll discuss it with my Dr."
-------------------------------------------

Yeah, I'm with you Mary.  Being open-minded isn't the same as being gullible and I suspect most of us here have the capacity to sort the wheat from the chaff when it comes to advice.  I do think most people mean well when they offer it, even if it can be bloody annoying and sometimes range on a scale from cringe-inducing to horrifyingly inappropriate. 

 And it's not just health issues either.  Whenever you share any problem whatsoever with people, you can be pretty sure that a significant chunk of that population will offer you advice, it's just human nature.  It was probably an evolutionary advantage in ancient times. Maybe it still is. 

Unsolicited medical advise usually comes with it's own agenda. Good thinking, Ronnie.
You are in my prayers.

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