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.

'Double Dare' Host Marc Summers Reveals His Bout with CLL (Chronic Lymphocytic Leukemia): Lessons, Errors and Omissions

From ABC News

Marc Summers is ingrained in the minds of millions of fans from his iconic run as host of the kids show "Double Dare."

The 63-year-old TV personality and Food Network producer appeared on the Preston & Steve Show on 93.3 WMMR this week to talk about something much more serious. After spending the weekend with the radio show's hosts at an event called "Striking Out Cancer," Summers said, "I'm sort of old school and keep things to myself ... I've been sort of keeping something secret for the last five years."

"I was diagnosed with cancer five years ago. In show business, if you talk about that stuff, it's hard to get hired afterwards. My agent said, 'Well, don't talk about it.' I've sort of compressed this thing and it's made me nuts," he said. "I wanted to tell somebody and I didn't know who to tell. I was on this show 'Oprah: Where are They Now' and I almost did it there."

Summers was diagnosed with chronic lymphocytic leukemia.

"I was having stomach problems and in severe pain, went to a hospital and they took 17.5 inches of my small intestine out," he said.

Summers said when he woke up he made a joke, "Hey doctor, do I have cancer?" and he replied, "As a matter of fact, you do."

The reason he's talking now is that his first doctor wanted to "blast" him full of chemo and radiation and he wanted a second opinion. On that visit, he was told he had just six months left.

"He said, 'You have six months, get your papers ready,'" Summers said. "I was freaking out."

He thought he wouldn't get to see his kids married and that he was going to die. But he called the first doctor and he shut down that theory. The first doctor called the second and that doctor denied giving Summers the death sentence.

He got a third opinion, then "was in chemo" for two years with a doctor, whom he said changed his life.

"The first chemo was brutal, as I think they all are," Summers said. "This past December, I finally got the all-clear sign."

Now, he wants to share his story of remission and is "ready to move on."

Be warned that the video does have some mildly risqué language.

There are so many things wrong with this story, I almost feel it's as if it is one of those WACKY WEDNESDAY cartoons where you need to pick out all the problems.

To name a few:

Chemotherapy? Seems he had rituximab which is a biological immunotherapy, not really chemo.

His first doctor wanted to "blast him full of chemo and radiation" and a second told him that "he had just six months left? "That is so scary that it doesn't even deserve comment. Good on him for getting a third opinion.

PET scans yearly time five years? No indication for CT scans most of the time in CLL, let alone a PET scans.

Cured with single agent rituximab? That would be a miraculous and publishable result. Cures in CLL to this point have only be possible with a high risk bone marrow transplant.

Which brings me to the last and least concerning point: understandable confusion re: bone marrow biopsy versus bone marrow transplant. To his credit, Marc did help straighten that out.

Since he seems that he never saw a true dedicated CLL expert, I have to wonder if he ever had a FISH test and whether he ever really needed treatment. It would make sense that his disease profile was pretty indolent to respond so dramatically to only rituxan.

But there also are some excellent lessons from this cautionary tale.

The biggest take away message is that we all need to get a second and sometimes a third opinion.

And we must always be our own strongest advocates and push to get the best possible care.

And I do so appreciate Marc Summers coming out of the cancer closet. I understand why it made sense for him to keep quiet when in show business, but that's a bit sad that we live in such a prejudiced world.

We find out about most celebrity's CLL in their obituary, so I salute his bravery and the good work he is doing getting the word out.

More Comments on to Tell or Not to Tell About Our CLL

Here are three comments that tell a very different story about the risk of sharing the CLL news.

Would that the world was different. My hearts especially goes out to the first anonymous commentator, who ironically is not so anonymous at church and home. He speaks poignantly of the cruelty of friends and family and the kindness of strangers.

Strong arguments for keeping our mouth shut, when possible.

For the origins of this discussion, please see my recent post on the death of George Duke,  the follow-up post with a related comment and my much earlier post on the CLL death of Jill Clayburgh.

The comments speak for themselves.

Anonymous said...

I can't relate to what you are saying and the experience of others you have described.
I told everyone I knew about CLL, people I trusted and loved. In doing so, over time, my friends and close family deserted me, my church didn't understand and wasn't able to relate how ill I was nor provide me with the support I needed, eventually I left that church.
You see for me CLL, in combination with another chronic illness, made me very ill, so ill I couldn't work anymore and I lost my job, lost my career, my friends started to distance themselves and so did my close family, it was as though I were leper.
Now it is rare for any of those to phone to ask how I am, none offers to help; none visits; only my wife supports me. I use to be always the one who would keep in touch and phone and see friends and family, but now when I am in greatest need all I get is silence. Old friends busy themselves with self interest activities, I use to ask them to meet me for a tea or coffee but they always had some excuse not to meet, same goes for close family, I haven't seen my brother and sister for many years even though both are capable of visiting they choose not to. So I've given up hoping anything from them anymore. Even the medical profession has been woefully poor in providing support, so often I (and my wife) have been left to fend for ourselves.
Only now my life is close to the end does anyone seem to care, and those who do have been strangers, and at last this has got my sisters attention and she shows some concern and occasionally phones but alas it's usually a case of her saying something like "keep me posted etc.", same old habits same old complacency.
The strangers are people on CLL forums, people in palliative care, people who can relate to illness, suffering and ultimately have known people who have died. They provide words of comfort, they put an arm around you and hold you as you cry, they make you a cup of tea and offer you food, they help you walk and support you as you struggle to walk or stand. These are the real angels in this world, these are the people with love and compassion in their hearts, and these are the people who share your pain and suffering.
Yes, there really are good Samaritans in this world, however there are others who choose to look the other way and walk by on the other side, but the ones who have love and compassion in their hearts are angels in this world.

AUGUST 10, 2013 AT 7:12 AM 

(Another) Anonymous said...

The problem often lies in what you must reveal due to medical appointments. I went through a clinical trial and never missed a day of work except for days when I had infusions. I elected to tell a very small number of people who were in my direct line of reporting so they would understand my need to specify firm dates out of the office. Unfortunately a couple of those people chose to tell others out of "sympathy." Within a few days, I was inundated with cancer doe eyes, the sorrowful misty look one gives when talking about Old Yeller. Needless to say I was irate over my supervisors revealing a personal medical matter. Cancer puts you in the lineup of those due to checkout next. You are denied opportunities, treated as a lesser entity and suffocated by the premature sad news of your demise. I managed to set things straight by doing my job at a high level of productivity, much to the dismay and even annoyance of my family. But you can't show fatigue or you are out of the game. Some people started talking about my retirement, something I neither wanted nor could afford due to health insurance issues. We all have different circumstances and needs, but I would opt for silence.

AUGUST 8, 2013 AT 6:23 PM

 justme said...

Couldn't agree more with (another) Anonymous writer, especially this: "Within a few days, I was inundated with cancer doe eyes, the sorrowful misty look one gives when talking about Old Yeller ... Cancer puts you in the lineup of those due to checkout next. You are denied opportunities, treated as a lesser entity and suffocated by the premature sad news of your demise."
I'm not so concerned about keeping or moving up in my job as to seeing the pitying eyes, etc... Since I'm mutated and haven't had treatment since diagnosis in 1/06, I would most likely have to deal the cancer label for quite some time.
Only my family (including extended) and one close friend know I have CLL.

AUGUST 11, 2013 AT 6:33 AM

CLL: More on to Tell or Not to Tell

The following personal note on whether to share our cancer diagnosis or keeps the battles secret was send by one astute and candid commentator in response to my recent post about George Duke.

This anonymous well written and considered comment deserves to be seen by more than those few readers who always check out the many thoughtful comments from my readers and fellow travelers.

I can so relate to the writer's experience of the pitying looks and the pre-terminal planning that a cancer diagnosis seems to foster.

Here is the comment:

The problem often lies in what you must reveal due to medical appointments. I went through a clinical trial and never missed a day of work except for days when I had infusions. I elected to tell a very small number of people who were in my direct line of reporting so they would understand my need to specify firm dates out of the office. Unfortunately a couple of those people chose to tell others out of "sympathy." Within a few days, I was inundated with cancer doe eyes, the sorrowful misty look one gives when talking about Old Yeller. Needless to say I was irate over my supervisors revealing a personal medical matter. Cancer puts you in the lineup of those due to checkout next. You are denied opportunities, treated as a lesser entity and suffocated by the premature sad news of your demise. I managed to set things straight by doing my job at a high level of productivity, much to the dismay and even annoyance of my family. But you can't show fatigue or you are out of the game. Some people started talking about my retirement, something I neither wanted nor could afford due to health insurance issues. We all have different circumstances and needs, but I would opt for silence.

Thank you to the anonymous writer.

You might also want to read my almost forgotten post from nearly three years ago written when Jill Clayburgh died of her CLL keeping her secret to the very end. So much has changed in those three years, but when I reread my thoughts from back in November 2010, I was pleased to see that I can still relate to what I wrote back then in what was a very different world for those of us with CLL.

George Duke Dies of CLL and None of his Fans Knew of the Battle until his Obituary

"Jazz, funk and soul keyboard maestro George Duke (pictured) passed away at the age of 67. The musician reportedly battled chronic lymphocytic leukemia, according to his record label, Concord Music Group." says a score of press releases.

I am  sadden by the loss of this great musician at a relatively young age, and I send my condolences to his friends and his family.

This is the first I heard that he had CLL. I totally respect his decision not to share his struggles.


"He was battling and being treated for chronic lymphocytic leukemia (CLL)." is the only clue we have. 

Was his end a complication of his treatment?  The press release hints at that. Or maybe not.


I wonder what therapies he accessed? Was a clinical trial part of his path? Did he try any of the new small molecules or mAbs? Was he cared for by a CLL expert? 

We will never know.

When I hear, again  and again of a TV or music or movie star who dies of CLL, I really do respect and understand their decision to hide their disease from their fans, and often I am sure from most of their colleagues. Might lose work if someone knew that you had cancer and the entertainment and many other business are very competitive and very phobic about any illness.  And besides, it's about the art, not the cancer.

Many hide CLL simply because they can. 

Most therapies are outpatient. Surgery is almost never indicated (maybe a rare lymph node biopsy or a splenectomy for intractable AIHA or  ITP). We don't generally lose our hair or drastically drop our weight or even look much like a cancer patient is "supposed to look."

It is easy to hide CLL to very near the end.

And it is going to get easier and easier with the new oral drugs in the pipelines. 

CLL as a non-event!

We are not quite there yet, but it may be becoming less and less of a visible and burdensome disease.

Easy to hide and getting easier.

But is it a good idea?

Several positives. 

Hiding our CLL focuses our lives and our relationships on topics other than our cancer. 

It forces us to compete in work and play without playing the "cancer card" for sympathy and a leg up.

We spare family and friends worry and concern that is often needless, especially if we have very indolent disease.

Those are all good things.

Several negatives. 

We miss the support and knowledge of others who might be able to help us and whom we might help by sharing out experience. It's a give and take that only comes from sharing our truths.

We don't expand the general awareness in the community of the gravity of the disease, the need for more research (and funding) for the  promising new and improved treatments, and despite our best efforts, the human toll  of our killer. We are competing for scare resources with much more visible and active cancer advocacy organizations. 

We deny family and friends a chance to support and care for us.

We deny a part (but not nearly the whole) of who we are, when we don't share the raw truth of our illness.

Those are all bad things.

For each of us, we must decide whether to come out of the CLL closet. 

Just as in treatment, there is no one size fits all in the world of CLL.

I understand and respect George's decision to play his cards close to the chest.

I have chosen to play mine in the public eye.

The choice not to tell. Refection on the CLL death of Jill Clayburgh

Here is a letter I wrote to the CLL listserves that are such a valuable resource for me.

This has been a hot topic.

Friends

We are all a bit disappointed when we learned that yet another celebrity, this time an Academy award winner, Jill Clayburgh, chooses not to tout their CLL as a fund raising banner like others have done so successfully with breast or even colon cancer or HIV.

Maybe it is because it is so easy to hide, so discreet a disease. A disease that many can ignore for decades if it chooses to ignore you, so why raise an issue when the rest of the world can be so judgmental, dismissive, and exclusive. No surgeries, Maybe even no trips to the hospital , even to the very end of life. If you are lucky.

Sharing the news can needlessly prevent a raise, drive away paying clients and needed work, and scare well meaning friends and family.

Would that it was a different world. That we, to borrow from Dr. King. were judged by the quality of our souls and not the clonality of our B lymphocytes.

If more CLLers came out of the closet, would it change the world to be a more accepting one? it sure has for other issues like HIV/AIDS.

It is not for me to judge how others handle such a personal and private issue, and yet I too wish that we had a superstar fund raising publicist who could help us raise the money to do the research so that we can all, soon and in our time, exhale and say, I remember well CLL was an incurable disease.

Be well. Stay strong

We all in this together

Brian

Jill Clayburgh’s co-star had no idea she was sick (AP)

November 8, 2010

By amin

NEW YORK – In one of her final roles, Jill Clayburgh plays the mom of charismatic Viagra salesman Jamie Reidy (Jake Gyllenhaal) in the romantic comedy “Love and Other Drugs.”

Gyllenhaal and the film’s director Edward Zwick said they had no idea the Oscar-nominated screen legend was battling chronic lymphocytic leukemia at the time. They learned of it after their work together.

“I think part of her sickness is what made her live her life … and really cherish the moments she had and cherish the people she was with,” said Gyllenhaal while promoting the film in New York on Sunday. “And she did when she was with us, cherish those moments, and they made us all love her.”

Gyllenhaal filmed with Clayburgh in September of 2009.

Clayburgh, 66, died Friday at her home in Lakeville, Conn., after a 21-year battle with the disease.

Gyllenhaal credits Clayburgh’s iconic portrayal of a divorcee in 1978′s “An Unmarried Woman” with helping his own mother through divorce.

“It helped her through that time in a way that no other movie or anybody else had,” he said.

“She left an indelible impression on me,” he said. “You don’t really need much time to work or meet somebody and know that they’re really alive … and when I heard that (she was sick) I just thought, you know there’s that moment when you go like ‘oh, like maybe that might be why she was so extraordinary.’ And it makes me want to encourage people to wake up and live it like Jill did.”

Zwick said directing Clayburgh was “a real privilege.”

“Her legacy is an extraordinary kind of acting which is of the highest level of authenticity but also of comedy. She managed to do both those things at once,” he said.