Wednesday, February 11, 2015

'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.

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Anonymous Anonymous said...

Wonderful interview but as you say it brings up many questions. He seems to have achieved a long-term remission without a BMT, so that's good. Not everyone is so fortunate. Is it that hard to diagnose CLL? My family doc pegged it right away for me after one blood test and my CLL docs (two so far) have been first rate. If (or when) I ever get the "6 months" talk I hope I can give thanks for every minute I have been blessed with. Bone marrow biopsy? I barely felt mine, but I think it is a skill honed by much practice. And finally, I have to agree with his decision to disclose his illness only on a "need to know" basis. The factor for me is simple - I don't want to be the topic of every conversation I'm in for the rest of my life. CLL, like baseball, is a game of inches. I don't want to bore everyone or myself with the latest inch. It's a buzzkill.

February 12, 2015 at 6:16 AM  
Anonymous Anonymous said...

Given the inaccuracies in Marc's story I am sure he left some key information out. He mentions that he is a patient of Dr. Stadtmauer at the University of Pennsylvania. I too am a patient of Dr. Stadtmauer who I went to for second opinion after the local Oncologist told me I had high risk CLL and needed a bone marrow transplant. Dr. Stadtmauer ordered all the standard tests Fish, Flow, Zap 70 and IGHV status. Turned out I was mutated, 13q, low risk and placed in watch and wait. Dr. Stadtmauer told me there was no cure but effective therapies available with new ones in development. He also shared the median survival for my genetics. I would be shocked to find out that Dr. Stadtmauer didn't order the same tests for Marc and told him he was cured.

February 12, 2015 at 6:36 AM  
Anonymous Anonymous said...

This reminds me of all the ridiculous and erroneous reporting about Houston Texans owner Robert McNair and his battle with CLL.

February 12, 2015 at 8:28 AM  
Blogger Lynn S said...

Someone needs to sit down with Marc and have a heart to heart. Brian? Can you put on your cape and fly out to the rescue?

February 12, 2015 at 11:05 AM  
Blogger John Kleinberg said...

Marc is speaking to an audience he believes is ignorant of this disease.

He doesn't realize that there are many of us "who have flown the mission"and therefore, appreciate more precise vernacular with accurate detail.

It would appear by his description of his disease that he is possibly unaware of our listserve.

If so, he should be invited.

If, in deed, he has only had rituxan so far, he my be once again be seeking treatment probably sooner rather than later.

Sent from my iPad

February 12, 2015 at 8:12 PM  
Anonymous Anonymous said...

I'm also mutated, 13q deleted. What did your doctor say the median survival rate is? I neglected to ask my doctor.

February 12, 2015 at 8:48 PM  
Anonymous Anonymous said...

Thinking about Marc Summers and his interview and what really stands out to me is that someone who seems fairly sophisticated and with enough resources to travel to visit several doctors actually is struggling quite a bit to understand the basics of CLL and possible treatments. This is just another reason why your work is so important, Brian, and why we appreciate so much what you are doing here on your blog and with the CLL Society. There are still so many unmet needs for CLL patients, and easy to understand patient education seems to be one of them. Thanks for all you are doing to make a difference.

February 14, 2015 at 12:35 PM  

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