When Sportswriters Cover the Cancer Beat: The Uneven Reporting of the Bob McNair CLL (chronic lymphocytic leukemia) and Skin Cancer Story

The owners of the NFL team, the Texans, Bob McNair has come out and shared his successful battle with CLL and a very aggressive squamous cell (skin) cancer.  The newspapers in Texas were full of the good news, but they didn't quite get the CLL piece right.

Please take a look at this news report:

Texans owner McNair gets clean bill of health after cancer fight

Or check out:

Texans owner McNair healthy after 10-month cancer battle

where you will read:

"McNair's remarkable recovery has included ground-breaking experimental treatment for chronic lymphocytic leukemia (CLL)…"

I want some of whatever that is.

Here is my published comment in response to the article:

Good news. While Mr. McNair's skin cancer may be curable, not so with his blood cancer, CLL. At least not yet, however, it is often controllable with therapy. Since CLL weakens the immunity, it can make skin cancers more aggressive. The message here is that anyone with CLL and many other cancers needs to be particularly careful about their sun exposure and vigilant in checking their skin for any suspicious lesions. Sadly one cancer, especially CLL, can lead to another.

Turns out a few of the sportswriters got a bit scrambled in their understanding of the management of his slow moving CLL versus his aggressive skin cancer that spread well beyond the skin requiring extensive and repeated surgeries, radiation, chemotherapy and eventually skin grafting.

The press conference with Dr. Michael Keating out of MDACC (MD Anderson Cancer Center) tells a clearer story with the full transcript at this link. Dr. Keating has a long and broad view of what we CLL patients need and I am glad he is a leader on our Team CLL. I also love the way he can generated much needed publicity about our cancer that seems to spend most of its life in the shadows, avoiding the bright lights and headlines.

The ground-breaking experimental treatment mentioned in the report was pheresis or more commonly called apheresis and its experimental use is to increase our wimpy immune response and lower our high risk of secondary cancers and their reoccurrence. 

Dr. Keating explains it at the press conference:

"You’re all aware that there’s an increased instance of melanoma that occurs because of tanning beds and things like this, but the most common forms of skin cancers are Basil Cell cancer and Squamous Cell cancer and many people like Mr. McNair have more frequent visits to their dermatologists than to the other members of their families sometimes because they keep on coming back. So the one element of Chronic Lymphocytic Leukemia or CLL, which is the most common leukemia that we see in the western world, is that there is a complex suppression of the immune system and the only non-AFDA approved activity was part of an extension of a protocol where we could take immune cells out by a process called apheresis, where you go through a machine and you take white cells out and separate the immune cells and then stimulate them up a thousand fold so they go to one-hundred-million to one-hundred-billion and give them back and rebuild the immune system to try and prevent these events from occurring."

Looks as if the transcribers may have missed a few key words and phrases.

A few reflections on what we can learn from the news.

1: Another celebrity, Bob McNair, the owner of a proud NFL team, tells the world he has CLL and skin cancer. Of course I wish he had shared the CLL news earlier, perhaps even at the time of diagnosis in order to help remove the cancer stigma and demonstrate how well he continued to live his active life for many years post diagnosis. I recognize that sharing a cancer diagnosis is a complex and very personal decision. Still I wish he had told the world when he was in the battle and not after it was at least partially over, but still I am grateful for his thoughtful and generous comments to the media about his two cancers and the treatment. I have posted extensively on this subject and received many lively comments on the decision to share the news or shut up. This link will get get you started if you wanted to revisit that topic.

2: We CLL patients are all at heightened risks for skin cancers and even the usually well behaved ones can become very nasty with our suppressed immunity. We get more cancer and the cancers we get are more aggressive. We need to use our sunscreen and our hats and have a full body skin check (and that really means full body) at least once or twice a year. See this prior post on secondary cancer risk with CLL (and CT scans).

3: MDACC and others are working hard on ways to improve our immunity. We need that. Dr. Wierda talked about his immune boosting research last year in this post. Remember that it is secondary cancer and infections that kill the majority of us that arise as a result of our weakened immunity from the disease itself and its old school chemo treatments. No point of knocking the CLL back and then dying of a secondary problem.

4: Sportswriters should stick to covering sports. Or if not, get some help and fact checking. Many otherwise fine reporters when covering cancer go for the feel good story. I guess they get tired of writing about the bad news and dirty laundry the rest of the time. That's nice, but it is not the whole picture. I promise I won't write on sports (except maybe a little about my beloved LA Kings and ice hockey) if they won't write on CLL. You don't need a medical degree to be a good medical reporter, but it sure helps. If not, then please do your research or ask for help and please tell the whole story, the good and bad.

Back from Ohio

To start, they know what a vegan is in Columbus and they actually know how to feed and nurture one, which is good thing, because it looks like I am going to staying there for the better part of three months starting sometime in February.

Yes, I was accepted in the trial of PCI-32765 and ofatumumab pending the insurance OK and the intake screening. That will happen sometime in the next few weeks, and the

I was very impressed with Dr. John Byrd and his team at OSU. Thorough, prepared, caring, smart and humane.

I must review pages of notes taken by my daughter, Heather who flew down from Chicago and her studying for the bar in Illinois (she is already licensed to practice law in NY) to be my scribe, second set of ears, and moral support for the whirlwind tour of this cold and windy central Ohio college town.

Over the next week, I will share what I learned, my decision process, and the next steps to get things going.

Right now I am still recuperating from the sleep deprivation of an alarm ringing before 4AM (1 AM Pacific time) to get to the airport on time for our flight home.

But it all going to be OK. They have good vegan food, a new drug that could save my life, and an NHL hockey team.

What more could I need?

Ice Hockey, Charity and Leukemia

This is from the LA Kings web site and is a complete break from my teaching and reflections, but just a simple story that touches all my emotional triggers:

Every player on the Kings’ active roster contributes money to the Kings Community Corner, through which tickets are distributed to families who would otherwise be unable to attend games, and six players -- Bernier, Simon Gagne, Mike Richards, Dustin Penner, Scott Parse and Brad Richardson -- all personally purchase a set of four 100-level season seats, from which tickets are dispersed for each individual game, within the organization of the player’s choice.

While Richards’ tickets go to Padres Contra el Cancer (Fathers Against Cancer), “Gagne’s Gang” is the Leukemia & Lymphoma Society (LLS), “Penner’s Posse” is the Salvation Army, and both “Parse’s Party” and “Richie’s Rascals” come from the After School All Stars.Although all the ticket recipients are fortunate to be treated by the athletes themselves, “Bernier’s Angels,” all CHLA(Chrildren's Hospital, LA) affiliates, receive something extra special.

So the scorer of the most famous goal in Canadian hockey history, Paul Henderson, has CLL and Simon Gagne donates his seats to Leukemia & Lymphoma Society.

Ice Hockey and leukemia and charity in the same story. I am starting to feel this is some special connection.

I love hockey and I am thrilled when I see stars give to help those with blood cancers. It just feels good and makes me proud of my home team.

Go Kings Go

Go LLS Go

More good news in the marrow and the worst news on the ice

The Kings lost their 3rd game in OT, and are out of the playoffs again in the 1st round. They need a sniper, someone who can score. So sad.

I need a sniper too, something that can pick off my CLL clones and leave the rest of my body alone.

I may have a fair facsimile in my idiosyncratic mix of ciclosporin (CSP) and rituximab (R).

Dr. Kipps was very very very happy with my bone marrow report. His and my fears that the R was doing a good cosmetic job of cleaning up my blood and shrinking the nodes you could feel, while the marrow was loading up with cancer was not the case. In fact my marrow had less CLL than 3 months ago 3% by flow, and < 5% seen with special stains. The histology (the slide itself) looked normal to the hematopathologist.

That means no nodules of CLL like cells seen. And no excess blasts or increased marrow activity that might herald the dreaded MDS (See my friend's CarePage as he details his life saving transplant at MDACC for his CLL/MDS combo). (Update 8/2013: He is now long post transplant, disease-free, and doing great with a long cancer free life ahead of him.)

The cells lines for read and white and platelets were all just fine. The marrow's cellularity was a bit low, which Kipps think is from all the therapy I have had.

I guess I don't think of myself as having had that much therapy, if you don't count my transplant. (That's a joke.)

Anyway he is not worried and actually relieved that the marrow wasn't hypercellular like it usually is in MDS.

Also all my FISH studies for the common genetic irregularities associated with CLL and MDS were negative.

All this is old news.

The new news is that Kipps feel the ciclosporin is a big part of my success. He actually tried to get a study done on its efficacy in CLL. Apparently it doesn't help everyone and it is a generic drug, so funding would be tough.

But for me it works.

I think of it as the brakes on my ITP, but Kipps is reminding me of its antileukemic especially in combination with R.

The only bad news is my nodes have groin a bit again. All this has happened since I reduced the CSP.

Which also suggests it helps my CLL

So if I can find a dose that doesn't mess with my kidneys and still controls the CLL and the ITP, I may have the 1st piece of a winning strategy.

The second is also atypical: Maintenance Rituximab

I am going to wait for MR (more on that in the next post) before adding the R it has only been 4 months since my last dose, so my slowly growing nodes could be from the R starting to lose gas or from the reduced dose of the CSP or from both or neither.

I don't want my gut nodes to get gigantic and hard to treat, so I am thinking a course of "vitamin R" in June might be just what the doctor ordered. Kipps wouldn't say go for it, but he didn't say no either. Which is a lot for him considering this R+CSP is all unproven territory for a man who has built a world class reputation for elegantly clinical designed trials.

So all in all good news.

Watch the nodes with self examines in the shower, and a MR soon. BMB every 6-12 months.

Titrate to find the lowest dose of CSP that keeps things under control and add in some R every 6 months.

And the LA Kings sign a free agent snipe in July.

We have a plan.

The Goal never gets old

The Goal never gets old

Hockey and CLL- a winning combo. You probably need to be Canadian to know of this iconic moment, this crowning event in the history of the true north, strong and free, when the great nation north of the 49th parallel beat back the might Soviet Union and snatched victory from the stick of defeat.

We scored. Actually he scored, Paul Henderson, and the nation let out its collective held breath for the first time that day, that month.

We were, and I need I remind anyone, remain, champions of the world (last Olympics).

Thank you Paul W. for the link.

Canada does a much better job covering CLL in its popular press than the USA. I guess we are not as sexy as breast or colon cancer.

We remain mostly invisible and we don't need surgery. And we usually don't die right away.

But we CLLers are a good example of a supportive community across different ages, races, geographies, and classes. We are mostly blameless for our woes, but we struggle for a smart cure together with our support groups and clinical trials. We are brave and tough and wise. And we all know we are all in this together.

Oh well, we will get our day in the sunshine sometime. I for one am pushing for that.

Battle Plans and Diversions

Botero

My failure to post has not been due to lack of news, but rather lack of focus.

On the CLL front, after some advanced noodling, my battle plans are being drawn up for what I am certain will be the final successful struggle with this deadly foe.

Sun Tzu will be my general.

He orders:

Attack him where he is unprepared, appear where you are not expected.

And,

In war, then, let your great object be victory, not lengthy campaigns.

And finally,

Though we have heard of stupid haste in war, cleverness has never been seen associated with long delays.

What does this means?

It means on to chemo, likely in the next 60 days, likely FCR or PCR, then on to a second transplant.

Honestly, I sense all these forces moving at a distant, they are not in focus yet.

Why not?

I have been having too much fun is why.

Let me share as best I can an emotionally towering experience. Hearing and seeing John Adams at the Disney Hall, sitting behind the orchestra, right above the tympani for THE DHARMA AT BIG SUR.

Magical to watch the conductor/composer moving the giant engine of the orchestra together as a transcendent unit, to a place unique in time. From our unusual vantage point we saw when JA had called for one of the percussionists to slap his stool with a wooden stick or draw a violin bow across his xylophone. There is music is everything. The sounds and sights are lingering still.

Then another trip back to the 60s, this time aboard the PIRATE RADIO battleship moored off the coast of an uptight England, in a wonderful period piece with revolutionary music, reminiscent characters, and rad clothes. This must see movie captures much of the joy and some of the sickness of a time that seems so far out, it is hard to believe it really happened. Did it happen?

Did I mention our second trip to be thrilled and tutored at the same time by the neo-Baroque art of Botero and the Latin American exhibit at the Bowers? Botero sees it all and tells it like it is.

And the cultural pinnacle: Two King's game, where my battered team wins both in shootouts. And one of them was a gift to two sweet suite seats. (Say that fast three times) And at the other, every fan in attendance received a bobble-head Luc Robitaille doll. Life doesn't get much better. Go, Kings, go.

Add to that a raw holiday food prep class, numerous walks on the beach, Balboa Island, and the back bay, home visits with dear friends recovering from various hospital adventures, shopping for Hanukkah, and finishing SKINNY LEGS AND ALL, a slap in the face book of what I though I knew about the root of Judaism by my favorite author, Tom Robbins.

You can see why my focus on CLLL has been blurred.

"You don't know what you got til it's gone" Joni Mitchell

PATRICK O'SULLIVAN 

LA KINGS FORWARD

A VERY GOOD HOCKEY PLAYER

You go with what you got. For POS pictured above, it's soft hands, a knack for scoring, and a winsome smile

For me it's my cancer free status, my many cards left to play, and of course, my winsome smile.

So what if you are missing a few teeth or a few donor cells. Those things can be replaced. To win, sometimes you need to put it all on the line.