U.S. Rep. Mark DeSaulnier Shares that he has CLL (chronic Lymphocytic Leukemia)

Good for him.

The rookie Democratic Congressman Mark DeSaulnier who represents the Bay area of Walnut Creek and Richmond (very near where my oldest daughter and oldest two granddaughters live) announced yesterday that he has been diagnosed, treated and is a deep remission with his CLL.

Let's read his own words from the press release on his official website: https://desaulnier.house.gov

"Before sharing my diagnosis, I had much to consider personally and professionally. My doctors assured me that people with CLL, myself included, could continue to work and function at a high level. The medical professionals were right; I have been able to go home every weekend, except one, logging over 170,000 miles flown, held 14 town halls, had meetings with thousands of constituents, and maintained a 99.1% voting average in my first session of Congress.

By publicly sharing my story, I hope to add my voice to the growing number of people fighting cancer and the other chronic conditions so many families confront. I look forward to continuing to serve the people of our district, and do so stronger and with a better understanding having faced this experience."

I couldn't agree more. 

Being a Congressman is a very public job. Lots of potential "germ" risks from all the handshaking and community meals and more. He is on a plane even more than I am. And what a demanding schedule!

And still he and his doctors say it's all OK.

Here is a link to the LA Times story.

Diagnosed last July, his CLL already required therapy and he has done well with his cancer knocked way back.

Compare this to the secrecy of jazz and funk great George Duke or actress Jill Clayborn where the diagnosis was only revealed to the public after their deaths. Readers of this blog and members of the CLL Society support groups have shared many strong opinions and had poignant and heartfelt discussions on the subject of whether "to tell or not to tell" here and in our live group meetings.

I respect and fully support my friends who choose to stay quiet for a myriad of good reasons, but I must admit I am thrilled when a public figure shares his diagnosis in the hopes of helping others.

Many of us have seen our world grow bigger and our purpose become clearer after sharing our diagnosis. Our welcome video in the bottom right corner of our home page reminds me of this constantly.

Thank you Congressman DeSaulnier for your brave and helpful disclosure. I wish you  a long and healthy life.

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.

More on to Tell or Not to Tell

This is a topic that we all have spent some time on. Do we share our cancer story with friends, relatives, and colleagues? We all have different answers, and different reasons for them.

I believe that my past post and even this much earlier prior post and these poignant comments and these too were among my most provocative of discussion.  Worth re-reading.

So finally the main stream press is catching up to us. However, I humbly suggests that our discussions were more erudite and helpful.

The BBC takes a gentler and less probing look at the issue in this still worthwhile article.

I like how the article finishes quoting French minister, Dominique Bertinotti, who recently revealed her battle with breast cancer.

I quote:

So why has Bertinotti decided to talk after eight months of almost absolute silence?

"To help change the social attitudes towards this disease which is terribly distressing. To show that you can have cancer and still continue to work. So that employers understand that long sick leaves are not necessarily the best solution. So that there is less fear and more understanding," she said.

"Choosing to remain silent is a private matter. As a minister, my only question was to find out if I was able to fulfil my mission. And I have."

Would if it were so for all us. Sadly it isn't always. Sharing our cancer story can be risky business as you can see in some of the comments on my prior posts.

On a different note, expect several video interviews with CLL experts including more of the interview with Dr. Sharman to be posted here over the next week as a warm up to ASH.