Thursday, June 14, 2018

Cancer Cures, Hope and Ethical Reporting

A Real Cure? Really?

I think I’ve joined all of the metastatic breast cancer communities I can find. They are wonderful, so helpful and full of support and information. The sisters help so much -- we share wisdom and tears every day. But we are a jaded lot! We see people posting baking soda cures and miracle clinics in Germany, and we hop on them pretty fast. We guard our vulnerability to false hope. There are many evil folks making money on false hope. Last week's news was different; yet events still provided a serious challenge to my well-trained sense of journalistic ethics. 

Ages ago, I graduated from Michigan State University with a bachelor's degree in journalism, and the skills I learned never failed me. Among the great classes I took: how to spot a fake research story, also known as Advanced Reporting. “Be skeptical,” they taught me; “ask if the sample is large enough, if the study is controlled by an untreated group, and most importantly: follow the money. Who paid for the study, and who profits by it? If it looks too good to be true, the money will tell you.” That tutelage really kicked in last week.

The Miracle Cure

An explanation of the CAR T-cell therapy process: tumor removal, tumor infiltrating cell analysis, genome sequencing, cell reproduction, transfusion back into the patient.
 T-cell Therapy Process
By Simon Caulton - Own work, CC BY-SA 3.0,
Many of you saw the news story: a woman has been “cured’ of breast cancer through T-cell immunotherapy. Thank you all for not immediately copying me on it. The National Institute of Health (NIH) released the story, and brought our hero, Judy Perkins, in front of the public, causing a huge ripple through our various communities.

Here are several versions of her story; note how different each are:

CBS News:

The BBC:

The National Institute of Health press release:

The Guardian:

One of the better blogposts:

Ok, now here’s a quiz for you: 
  • What is the current success rate for this treatment?
  • What is the sample size of the study?
  • How does it work?
  • What are the risks?
  • Who benefits from this story going public? Where’s the money?
  • Knowing me, which is my favorite story, journalistically speaking?

First, Some Observations

Judy Perkins is a pioneer and we are proud of her contribution to saving our lives. We are so happy for her. But, with my finger on the pulse of our mood, I noted how this affected everyone. The old warhorses like myself pumped out a few cautions, but this news story changed us. It gave us hope. I am struck at how much and how quickly it affected some of us. This is one of our forum sisters:

I really need to vent. I’ve been telling people about the exciting and hopeful results of Judy Perkins’s trial, and so often the listener tries to burst my bubble. “Yeah, but we’re so many years away from that being a reliable treatment...blah blah blah.” People can be a great comfort, but I’m so disgusted with people lately. It’s the FIRST time I’ve had HOPE in YEARS. It’s a great feeling, and I don’t want anyone to take that away!!
I have to admit this: I’m one of the skeptics. I reminded the sisters that we’ve seen this before, with the vaccines that didn’t work, and the targeted therapies with big side effects and low response rates. This is just a case study and a small sample. I explained that this is the therapy everyone is struggling with: solid tumors are hard to address with T cells in the body systems. I reminded my sisters that we can’t call anything cured until about a decade out. Cancer is a sneaky thief that knows how to hide out for so very long, that two or three years is a very short time to trumpet success. To her credit, Judy herself says the same; she did not call herself cured. It was the director of the NIH who used the term before Congress.

We are very sensitive about the word “cure.” There are no known cures yet. Time tells us cancer is cured. However, they do use the term for other cancers with this therapy.

Quiz Answers

In the letter published in Nature Medicine, we learn that Judy is the only one of three patients to survive. One of our sisters died from the disease, without adequate response, and one developed a staph infection. Judy tells us the path wasn’t simple either, from her posts over the years. Her situation was dire, but the response was quick. She reports being on no therapy right now, which is very much Mets Nirvana: being normal again, even for a time.

Right now, T-cell therapy is FDA approved only for certain leukemias and soft tumor cancers like lymphoma. The price tag is staggering: about $300,000 to $500,000 if it works. (This is considered a fair price, given the expense of continued treatment. They are probably right.) The process involves removing a sizable tumor, looking for successful white blood cells (Tumor Infiltrating Lymphocytes or TILs) that attacked the tumor, sequencing their genes (much like my genomic study) and growing billions of the successful cells, returning them to the body to use its normal systems to fight back.

You can see where this would work for soft cancers; they are already in the blood and lymph systems, so they are easy to find. But is there really hope for the more difficult cancers?

My favorite article is the Guardian, as well as Katherine O’Brien’s blog post on LinkedIn, because they offer us a realistic viewpoint; one with greater integrity from an ethical standpoint. There are many who do not respond across all cancers right now; the response rate over all cancers is around 15%, but the sample is so small there are no conclusions to draw yet. There may be a risk of a life-threatening immune response from the body called Cytokine Release Syndrome (CRS). My CRS-like response to Kadcyla was the impetus for obtaining a second opinion from MD Anderson. My second opinion oncologist said CRS is much, much worse -- and I thought I was dying, so I can only imagine how much worse CRS is. One of my sisters reports that her cerebellum was affected by an earlier study, and she is permanently disabled. This is an advance but it’s fairly tricky, no matter how much hope we gather from this story.

So, why did they publish this story now? Judy does truly represent a breakthrough, for one. She is a first. For another, the National Cancer Institute and the National Institute of Health need better funding from Congress. Having a direction for treatment and real hope for advancement, gives Congress impetus to fund more. I truly hope they do. Please be sure to encourage your congress member to fund metastatic research.

Historical funding for NCI. Source, American Society for Clinical Oncology, CCA Report 2018 

What about Hope?

Despite my misgivings, I, too, have been changed by Judy’s story. Maybe there is hope. Maybe I’m not dying quite so quickly as my deepest fear suggests. Most importantly, maybe there is hope that I’m not going to be in misery for the rest of my days, trying to survive instead of live. 

I’m almost surprised that I feel that way, given my realistic point of view on life lately. I may even explore joining the next phase trial. Meanwhile, I’m no longer posting cautions about this study. We deserve some hope.  

Saturday, June 2, 2018

Markers Go Down, Myths Go Up!


My first real data since radiation and Lynparza is in and it is remarkable. The tumor markers in my blood, known as Cancer Antigens (CA) 15-3 and 27-29 are steeply down. To fight cancer, we produce antigens, and these two have been  identified with fighting breast cancer. The greater the number, the greater the concern. My last set before this, as you can see, seemed dire, with results near or above 7000s. Of course, normal levels are under 35 and 32, and mine are still in the 800s, but the tumor markers in my blood have gone down by the thousands. 

A graph of my tumor marker CA 27 29 findings, dating back to October 2016. The chart shows a steady progress upward, then a sharp incline in 2017 to the 7000s, and the last data point drops at about 45 degrees into the 800s.
My historical tumor markers for  CA 27-29
Is this the radiation? Is the Lynparza working? Is it the unreliability of the test I have been warned against in every previous draw? I’m not really sure, but I am happy to see this; it’s the first decline in my tumor markers since I received my stage IV diagnosis.  

The Lynparza is still a bit tough, but some of the difficulty has evened out. I still have an ever-present tendency toward cystitis and UTIs, and a strong and rather disgusting taste of metal about three hours post-dosage. Because I’m tracking these things, I know that the pH of my, um, various fluids becomes rather acidic at that point, until I am able to flush or change it. (Ironically, hydration is a poor solution to the problem — water tastes like battery acid.) Avoiding UTIs is like balancing on a pH tightrope, so I now have prophylactic antibiotics and Cystex, which help.

A graph of my tumor marker CA 15 3 findings, dating back to October 2016. The chart shows a steady progress upward, then a sharp incline in 2017 to the 7000s, and the last data point drops at about 45 degrees into the 800s.
My historical tumor markers for  CA 15-3
My bloodwork shows I am clearly and chronically anemic, although my numbers seem to have evened out. I also end up taking a nap at least once a day. But this fatigue is a little different: while I feel fine and even energetic just sitting, I wind myself walking up stairs. My red blood cells can’t seem to get oxygen to recover from effort. I'm not as tired as I am unable to do things.

Looking for Support  

I had joined a support group for those taking my drug, but I left it when it was suggested that we shouldn’t post negative outcomes. Apparently, some folks are really enjoying success, and they don’t want to hear from the nabobs of negativity (Spiro Agnew reference for you history buffs.) I’m just not one of them, or at least one with an easier path. I am not wholly alone, but the cheerleaders of the group will brook no negativity. I rely on support groups for learning and camaraderie, so I left. I’ve been invited back, but I haven’t rejoined as of yet. I’m just not sure I want to criticized for honesty by the passive-aggressive. I have a few other forums to fall back on.

I did call Astra-Zeneca, as I mentioned, and learned a bit from them. Their pharmacist was right: some of the symptoms got easier about six weeks in. I’m not going to be as critical of “big Pharma” as I used to be; they have been very helpful overcoming some of the difficulty with this drug. I will still be critical of the hedge fund owners that are jacking up prices. My drug is in the middle of the new therapies: only $13,000 a month. But hey, insurance covers it, once my out of pocket is reached. And AZ may help with that. I am grateful.

Mythbusting for Cancer

That brings me to my subject today: cancer myths. I see so very much quackery out there. And the stuff lands on my Facebook timeline regularly. Someone reposted the “there’s a cure for cancer but Big Pharma won't tell you to make money” nonsense again. Other times, I see miracle cures through diet (no sugar, no phytoestrogens, take baking soda…no asparagus? I love asparagus!) Although I didn’t challenge the latest Big Pharma post directly, please let me emphasize that most of this crap is pure drivel. In a sort of rebuttal, I posted this wonderful article:

I like the article because it links to the science behind each debunking. No, diets don’t cure cancer, and there is only a weak relationship to prevention (like alcohol and breast cancer.) Big Pharma isn’t sitting on some miracle cure for cancer in order to make money. Cancer can be prevented if you get a mammogram. (You aren’t preventing — you are detecting early, which may or may not help you survive.) I see these almost every day on my Facebook timeline or worse, in Messenger. My heart hurts from the number of good people I know who fall for it.

Interestingly, one of my Facebook friends brought up the positive outcomes she’s had with a no-sugar diet. The blogpost specifically refutes that outcome, although I’m sure eating well helped her grapple whatever cancer she fought. But the words “a tumor is sugar” is a gross misstatement of what a tumor is. A cancer tumor is a grouping of cells, the descendants of perhaps one evil stem cell, that have (usually set of ) specific genetic mutations in their DNA, causing them not to die as they should, but instead turn into voracious, rapacious killers, replicating and demanding resources, converting others to their evil ways. There are between 100 and 200 human cancers out there, depending on whether you are in the US or the UK, and their different definitions. There is no one solution for any of them, sometimes no one solution for even one of them. 

And as proof that Big Pharma doesn’t sit on cancer cures, there is one that can be cured, potentially. Childhood leukemia, considered a soft tissue cancer, has a new treatment the holds the potential of a real “cure.” There is also risk for a major set of side effect: reactions that are nearly as lethal. There is an ironic twist, however; it costs nearly $500,000. Now, that’s how you turn a profit on a drug! (Note: this therapy, called CART-T cell, is a long way off for solid tumors like breast cancer, if we can make it work at all.)

As a reminder, I expect no cure for my metastatic cancer, but even in earlier stages, “cure” is a misleading outcome. Regardless of any treatment, at least prior to the leukemia cure, any of us who develop an early stage cancer of any kind faced a 30 to 40% chance of developing metastasis, sometimes years or (in my case) decades later. A large portion of metastatic cancers are detected first at this stage as well. We don’t have a good handle on the numbers and the outcomes, but we know that 609,640 US residents die each year — and of those, they die from complications of the cancer that kills: metastatic cancers. Read more:

This is especially true of solid tumor cancers like breast, colon and so on. No one has a handle on a specific why, partly because there are 200 cancers that may do this awful, metastatic deed, and each behaves so very differently. And once you are metastatic, they stop trying to “cure.” The doctors move, instead, into survival mode, seeking to extend the patient’s life with treatments that will reduce the cancer and tame it into submission for a time. New therapies that target the genetic mutation in the cell are becoming commonplace. Time will tell (about 10 years, to eliminate short term bias) if they help.

I want to make it clear that cancer treatment is no longer just nausea, chemotherapy and hair loss. It might also be pills, a series of weird side effects (SEs for short) like cystitis, hand-foot syndrome, fatigue, anemia and vulnerability to pathogens. We may also extend our time considerably — or not. Nor is the extension a walk in the woods. It all sucks so far.

We are making progress, but I honestly wish we had Star Trek technology. If we could transport, we could also transport cancer cells into oblivion, cell by cell. No more broad brush strokes that affect everything. 

Now that would be a real cure.