Paul Henderson Battles Back Against Cancer

Paul Henderson and me in Niagara Falls

Thank you, Toronto Sun for this good news story in your hockey section.

OK, I am still a Canadian.

OK, I am still a huge hockey fan.

OK, I still remember the goal he scored against the Soviets.

When we met in Niagara Falls in 2012 at CLLPAG conference, I suggested he look into the NIH trial for ibrutinib. At that time, I had not yet started ibrutinib, but was still in the ofatumumab stage of the clinical trial at OSU with Dr. John Byrd where I would eventually get ibrutinib and do so well.

I am glad to see he is having the extraordinary success that I and so many others are enjoying with ibrutinib and the other new medications for CLL.

I am moved but his spiritual response to his cancer challenge. Paul is a man of faith and this is the season of miracles.

I hope and pray that the cost of these medicines will not delay their access in Canada- in every province, for every patient that would benefit.

I salute Paul Henderson for getting on a plane and flying to Bethesda. Not everyone has the resources or the knowledge or guts to do that. Not everyone fits the admission criteria for a trial.

I want to build a CLL community where every patient across all borders has the opportunity for the best possible care.

I am traveling, having met with other blood cancer patient advocates in Greece, so I appreciate the Toronto Sun doing my work for me on this post. Little time to write here.

One comment:

The hockey great tells the truth when he says what we know is that ibrutinib will work for about two years, but that is only because that is the best data we have. Only a handful of patients have taken it for around 4 years now and nearly all of those are still cruising along with their disease controlled, but the truth is that most of the data is out about two years or less. The curves are very flat for the treatment naive (those whose first treatment is ibrutinib), meaning that nearly all do not develop resistance and are doing great. In the relapsed and refractory population, the great majority also continue to respond, but there is a slightly bigger drop off. There are clearly some late CLL relapses seen after a year or more on drug, mostly seen in those with genomic instability such as those of us with a deletion 17p. More on this with the exact statistics from the papers at ASH when I get back stateside.

When I get home, I promise that I will write more about the news about CLL from iwCLL and ASH.

But first this feel good article.

BY JOE WARMINGTON ,TORONTO SUN
FIRST POSTED: MONDAY, DECEMBER 16, 2013 09:50 PM EST | UPDATED: MONDAY, DECEMBER 16, 2013 10:48 PM EST
TORONTO - 

All Paul Henderson wanted for Christmas was a clean bill of health from his deadly cancer.
It was actually more his wife of 50 years, Eleanor, their three daughters — Heather, Jennifer and Jill — and seven grandkids who were doing the asking.

It was no secret it was wishing for a lot. A miracle may be more what they were praying for.

It was not looking promising.

Just a year ago, the thought that the legendary Canadian hockey hero, suffering from chronic lymphocytic leukemia, would even be around for another Christmas was a dream.
In a column on Henderson in 2012, he was open about his ongoing battle with a rare, often terminal, form of cancer.

“There are signs of it getting worse,” he told me. “I have to admit the tumours are not getting any smaller. The cancer is now in my stomach, chest and lymph nodes.”

He had dropped from 184 pounds to 160 pounds.

The man who scored the winning goal in the final three games of the 1972 Summit Series against the then mighty Soviet Union was running out of both time and options.

The only goal he was focused on was trying to stay alive.

But Henderson has been known to thrive in tough circumstances, including scoring the goal of the century with just 34 seconds remaining in the final game in Moscow.

More than 41-years removed, he has proved his flare of beating the odds once again.
“It’s either chemotherapy or a clinical trial,” he said in 2012.

He chose the clinical trial and with fingers crossed went down to Bethesda, Md.

“The tumour in my stomach was the size of a grapefruit,” said Henderson, who was at the Toronto Sun’s downtown offices for an appearance on Michael Coren’s Sun News Network show, The Arena. “My spleen was double the size and the tumours were all over my body including in my armpits and my lymph nodes were swollen.”

Enter an experimental drug, called Ibrutinib, which is now being referred to as “breakthrough” therapy. “I take two little pills in the morning.”

The tumours began to shrink and now while Henderson can’t say his cancer is in remission, it is as close to that as someone with his form of the disease can ever hope for. “In my bones, they said they were 87% affected and now it’s down to 5%,” he added. “And the tumour in my stomach that was the size of the grapefruit is all but gone.” He has put all his weight back on and is back to 184 pounds.

“I just feel great,” he said. “I feel terrific but I think it’s even better for my family.” Yes, Eleanor, the kids and grandkids’ prayers have been answered.

It’s a Christmas Miracle!

“The Lord be good,” was Don Cherry’s reaction.

Henderson said the good news is also that most of the people in his clinical trial have had similar results and that one day Canadians may be able to gain access to this yet-to-be approved treatment.

He is hopeful it could mean that chemotherapy could become a thing of the past.

“When people say it’s a miracle I just say I will wait until I get to heaven and ask,” teased a smiling and upbeat Henderson.

He feels fantastic and looks even better.

“My wife joked she wants to take some of those pills because they must have Botox in them,” he said.

The Hendersons are realistic that with cancer, every day is special.

“I am told that this drug will work, they think for two years, so we don’t know what is going to happen after that.”

But what he does know is Henderson is feeling positive about enjoying Christmas with his family and even his 71st birthday on Jan. 28.

“I feel blessed because my dad died at 49,” he said. “I have never been worried because when you have hope and peace, you can handle anything.”

Henderson said he wouldn’t change a thing.

“I think having the cancer allowed me to be able to freely talk about my faith,” he said.

And, this Christmas, he is also able to reflect on another remarkable do-or-die moment he pulled out from suspected defeat and turned into victory just in the nick of time. 

Interview at Niagara Falls

Interview with Andrew Schorr at Niagara Falls, April, 2012

CLLPAG Niagara Falls Conference and Survey

Paul Henderson and Me

Every Canadian knows Paul Henderson. He is the hockey player who scored the most famous iconic winning goal ever, finding the back of the net in the dying seconds of the Summit Series in 1972 against the Russians, a defining event in Canadian identity.  For non Canadians, think Olympic Gold, the Word Cup, Wimbledon, the Masters, the SuperBowl and the World Series all wrapped into one. His goal surpassed all that. Turns out Paul is a sweet guy who is not shy about using his fame to help others who share his diagnosis of CLL. We met at the CLLPAG conference.

The CLLPAG conference in Niagara Falls was wonderful in so many ways, and not just for meeting a hockey idol.

First it was great to see so many old friends and make new ones in the CLL community.

As I have said before, if it wasn't for the downside, everyone would want cancer.

People may have left with different levels of understanding of their disease, but everyone left with a clear and strong sense that they were not in this alone. It was an enormous group hug for everyone involved.

That said, it was not just about feeling good. The world class and world wide faculty presented both the medical basics and the latest for a crowd of over 200 that included many newbies and more than a few pros.

Patients and patient advocates addressed the cold and complex psychological, social, financial, and political realities of the disease and its cost in the broadest sense of the word.

Still, the overall sense was hopeful. The CLL world is changing very fast, for the better.

Thanks to Deborah and all the volunteers and faculty who all donated their time. Amazing success.

I will leave for my next post an update on the promising new science, my vision for the future, and a reprise of my own presentation. Actually, that will take a few posts.

Before that I need your help.

As part of an effort to bring together an more informed and participatory patient group, I am surveying fellow cancer patients and their caregivers  about what they would want on their smart phone or IPAD or computer in an app to have with them at all times when dealing with their malignancy.

So please, please complete a very brief online form at http://www.virtualcancerbuddy.com/ if you didn't do one already at the conference. You don't need to have been to CLLPAG or even have CLL to share your needs. You just need to be a cancer patient or a caregiver of a cancer patient.

We are truly and eternally all in this together.

Coping with Cancer: Living with Leukemia and Lymphoma

Friends,

Like my hero, Chaya Venkat at http://updates.clltopics.org/ I have avoided selling anything through my website or promoting anything more than a bone marrow drive or a worthy charity.

I am now going break that rule to make a heartfelt sales pitch for a project that I was involved with in an effort to help fellow CLLers or those with other cancers.

For the last several months I have been working with my friend, Dr. Larry Deutsch an international renowned hypotherapist.

Like me, Dr Larry is a Canadian family doctor. Like me he teaches other doctors. Like me, Dr. Larry has needed to change the nature and scope of his practice because like me Dr. Larry Deutsch has CLL.

We have been collaborating on an audio file that uses his expertise and empathy and my knowledge of the disease from the inside out to help patients cope and maintain a calm sense of control with the diagnosis of leukemia and lymphoma in particular and cancer in general.

I believe that the MP3 that we produced is strong medicine. Larry is a powerful hypnotherapist with an important message.

Let me be clear. We are not promising a melting away of your cancer by a sheer act of will. We are not promising any cures. We are simply trying to build your confidence in dealing with a process that can often feel overwhelming.

Dr Deutsch did the heavy lifting on this project, but I am very proud of the part I played and very happy with the final result.

Please listen to a sample on this webpage.

Please download the MP3.

You will be glad that you did.

Every sale will generate a donation to CLLPAG in Canada and LRF in the USA, two important organizations that help the CLL and lymphoma community. I have worked with them both. Their conferences are first rate and important to many patients and caregivers, but they could do so much more with more support.

We all do so much better when we can get some help that allows us to slow down, and let go of the stress.

As I have been known to say, we are all in this together.

Hope my readers are OK with this bit of a commercial, but I am a believer in getting behind what you believe in and I do believe that how we cope with our cancer plays a role in how we do with our cancer.

I will publish more links to ASH videos over the next few days, and some stuff on 11q deletion, but tomorrow I leave for a conference on CME in Orlando for a few days.