Open Access advocate and 16-year-old Open Scie...

Jack Andraka (Photo credit: Open Science Federation)

Tonight, on 60 Minutes there was a story about a 15-year-old science prodigy who is working on a way to detect early the presence of pancreatic cancer in patients. Most of the time, patients, like myself, discover they have pancreatic cancer after it has already metastasized to another organ in addition to the pancreas.

This young man’s name is Jack Andraka. The story on 60 Minutes focused on how this teenager, who has a long-time love of science, had lost a friend/relative to pancreatic cancer and decided he wanted to develop tools that would help doctors detect pancreatic cancer early before this cancer moved to other organs.

He apparently developed his approach, put it into a proposal and sent it to over 100 cancer research organizations. Only one, MDAnderson in Houston, Texas, decided to give the young man a try.

He has had some remarkable results, which in turn has turned him into a celebrity, of sorts — four times to the White House this year alone. But his approach for early detection is showing some tremendous promise.

If you want to learn more about Jack and how he has proceeded thus far, click on the link below for the story on 60 Minutes Overtime. Congratulations to Jack and his very supportive parents.

http://www.cbsnews.com/8301-504803_162-57607276-10391709/parenting-a-gifted-child-lessons-from-the-andrakas/

My friend, Paul, sent the link below. Seems very inflammatory to mention that we may be seeing the end of chemo, but that seems the nature of cancer research. What is today’s clinical study is tomorrow’s treatment pattern. When you think about the power of the immune system, cancer treatment moving away from chemo and more toward strengthening the immune system sounds like “personalized” treatment.

If you or someone you love is in the throes of a cancer battle, you may want to read the CNN article below. Also, within the article there are links to TIME Magazine articles with additional information. It is very hopeful.

I’ve talked with my oncologist about this latest move toward building a stronger immune system to fight the cancer and he was very informed and looking forward to turning these clinical studies into practical application with great success rates.

 

CNN.com

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Folks, the link below is to an article in the NYTimes today about a cancer conference taking place in Chicago that is touting the importance of the immune system in fighting cancer and some breakthroughs that are happening. This appears to give strong credence to the statement that the immune system can play an important role in fighting cancer. This is what I have been doing for the last 32 months.

A LITTLE BACKGROUND: I was diagnosed with stage 4 pancreatic cancer on September 20, 2010 in Chicago. The very next day, at an appointment with a Chicago oncologist, the doctor told me that if I didn’t start his suggested cocktail of chemo drugs that day, I would be dead by Christmas. Well, it’s June 2013, and I am writing this, not some impersonator.

I got a second opinion from MDAnderson, a cancer center of excellence in Houston shortly thereafter. MDAnderson was not as adamant about the speed for starting the chemo as they were certain that neither surgery nor radiation would help me. Chemo would extend my life perhaps a couple of months or so.

Over the course of the next few weeks or so, Patti and I met with five oncologists. We were living in Dallas by then (having left Chicago behind to be closer to family). Every oncologist recommended chemo, but every one differed on what the chemo drugs should be used. Gemzar was somewhat universal.

My brother-in-law, Bill, suggested that I meet with a holistic practitioner to supplement whatever decision I made about pursuing chemo. Bill was fighting melanoma, using Julia, the holistic practitioner, to supplement his periodic visits to MDAnderson to monitor his fight. Julia said to me after a few initial visits: “If you are so committed to going the chemo route, can you at least give me three months to build up your immune system before you start the process of introducing chemo poisons to your system?” As a holistic provider, Julia was certainly no fan of chemo drugs.

Something about what she asked and the following conversations just made sense to me. I put off the chemo and began pursuing the building up of my immune system and following my faith. This involved quite a variety of vitamin and nutritional supplements, changing nutritional habits (swearing off red meat and carbonated beverages), experiencing a variety of light therapies designed to disrupt cancer cell duplication. Sometimes this meant 4-5 trips to visit Julia a week, some visits lasting from 30 minutes to a few hours. And, absolutely none of this was covered by any insurance.

But, Patti and I were fortunate to have enough to pay for these treatments. We are blessed.

THIS ARTICLE TODAY: At the conference in Chicago, various doctors and researchers are saying that it could be the immune system is more important than originally thought in fighting carcinogenic cell reproduction in the body. Of course, the article mentions that a few of the most powerful drug companies are working on clinical trials with a variety of immuno-related drugs that could replace chemo drugs. One researcher even went so far to mention that immune-related therapies could even replace chemo — certainly not without major pharmaceutical help.

When I read this article, I was near tears. When I was going through the immune build-up with Julia, it just seemed obscene that I could not get any of her treatments approved by insurance. Don’t get me wrong, I believe there is a role for the drug companies, but there are roles for a variety of different approaches. I am just ecstatic that these clinical trials, while self-promoting drug company solutions, may soon find a place nestled comfortably among cancer-ridding solutions. Thank you, Lord!

I am also including here some links to some other recent articles about this latest development,

If you read the NYTimes article below, be sure to read the comments about “cancer tails.” God bless you all and your families

Promising New Cancer Drugs Empower the Body’s Own Defense System

By ANDREW POLLACK

The drugs work by unleashing the immune system to attack cancer cells, much as it attacks bacteria or other foreign invaders in the human body

Related articles

For the past several months I have been taking chemo dosages to stem the growth of tumors I have in the liver and pancreas. So far, the chemo seems to be helping. Taking chemo is not without trepidation. The sheet they gave me to review BEFORE I took a chemo dose was so damned intimidating. The side effects seem to be never-ending, but the benefits appear to be just one — slow or reduce the growth of tumor cells. Nothing more than that.

The fog of chemo can be a good thing ...

The fog of chemo can be a good thing …

One of the items on the list of  potential side effects was the “fog” of chemo. Sounds a bit like fog of war, doesn’t it? Well, it is a bit like fog of war. Every time I hear fog of war, I tend to think of the Vietnam war, LBJ, Robert McNamara and any of those other folks where that term may have derived. Plus that term seemed to be used to avoid any prosecution for any decisions made during wartime. At least, that’s what it seemed to me.

Well, I am no politician, but I think I have a handle on fog of chemo. I think it is a good excuse for cancer-boy here to get out of something he doesn’t want to do. Kinda like — just plain forgetting! It’s on the sheet and Patti read the sheet just like I did. So, when the trash needs to be taken out and I don’t feel like doing it, I can just give everyone this blank stare, like I am a little dizzy, or a little distracted on my feet, and one of the kids will jump pretty quickly to dispense with the trash.

As they say about Momma not raising any fools, well, my fog of chemo excuse has worked just once — with the trash. Other times when I truly felt some fog (like not being able to come up with a fact or use the correct word or finish a story) none of the family members seemed to think I was foggy. They just figured I was using the excuse of just plain getting older. “Dad’s telling that story about JD and Casey again!” “Honey, you have a glass of water right there next to you.” “Your pills are where they always are — in the cabinet. Duh.”

I say this just to offer a sage bit of advice who may be taking chemo. Fog of chemo will likely work, maybe, once, but there is an even more likelihood that fog of senioritis will never work at all.

Folks, the Chemosabe gang is at it again.

I started chemo again today. You may recall that I had chemo with the very popular pancreatic cancer drug, Gemcitabine, back in November. At the same time docs put a stent in my bile duct. Since the two chemo doses came so close to when I had the stent placed, it was hard at the time to tell whether the side effects I was feeling at the time were from the stent placement, or the chemo.

So, I stopped the chemo at the time to see if I could improve my strength, which I have.

I went off hospice on Friday. The people at Hospice Austin could not have been any better. But since hospice is designed to help the patient who has less than six months to live, the hospice doctors said that I no longer fit into that category.

Carlos Santana

Carlos Santana (Photo credit: Wikipedia)

Coincidental with all this is that during 2012 there was a long of talk in the pancreatic support groups about some great results coming from clinical trials with a drug called Abraxane. When I first heard the name, I thought it was the name of an album by Carlos Santana. I was slightly off; it’s called “Abraxas.”

Abraxane is very popular with breast cancer patients because it has helped those patients for their treatment and recovery. Fourth quarter 2012 I started hearing much more buzz about how Abraxane was showing strong results in clinical trials for pancreatic cancer treatment. It was not yet approved for pancreatic cancer patients, though. Then shortly after dawn of 2013, it was approved by FDA for treatment for pancreatic cancer patients after years of developing good results for breast cancer patients.

Meanwhile, after the stent placement I started getting stronger and putting some weight back on. I was feeling stronger.

So, the first three Tuesdays of every month going forward I will be getting chemo with Gencitabine and Abraxane. The only pain associated with the chemo is that applying the needle to my port hurts for that quick moment of insertion, but the chemicals don’t hurt during infusion. But, as we go forward and I get more doses under my belt, who knows what effect the chemo will have. Every treatment is different for every patient.

A special note: Those of you who have been following this fight with damien know that Patti and I have forged through this fight with a lot of logical thinking but a larger part of faith and prayers. I know there are family and friends who pray for us, and I made the decision to try again after a lot of prayer. This does not in any way mean that I have lost my faith. After considerable thought and prayer, I felt like this was an answer to prayer.

It wasn’t an easy decision. The sheet the doctor gave us about Abraxane shows about a 10:1 side effect ratio. Potentially, lots of the suckers. Things like appetite loss (who cares about that, I never have had one any way?), nausea, lose my hair (you can use this space to enter your joke about my potential hair loss), and others. I don’t want to bore you with other potential things we’ll be looking for.

As always, thank you all for your prayers and well wishes. We really do appreciate them. God bless you all.

Here are just a few odds and ends from a busy week of treatments. Sorry, for its length, folks.

__________

damian

Since Patti and I have started this posting about my battle with pancreatic cancer, loads of friends and family will tell us to “kill that snotty little bastard damian” or some other such directive. I still don’t like giving the respect that a capital D would do.

After waging this war with the snotty little bastard, I would like to weigh in with a bit of a”postscript.”

I believe damian has already lost this war. The snotty little bastard is a loser. Here’s why. This whole cancer fight is really a fight between good and evil. And damian sure doesn’t represent good. What damian really wants me to do is lose faith in God, or blame God for this cancer, or be angry with God because I have this cancer. In short, lose faith in a loving God.

That is just not going to happen.

I believe in a loving God that is happiest when we are happy, worry-free, care-free and feel His presence all around us. Here’s an example from 1 John 5:14:

“This is the confidence that we have in our relationship with God: If we ask for anything in agreement with His will, He listens to us. If we know that He listens to whatever we ask, we know that we have received what we asked from Him.”

__________

A favorite song — Asleep the Snow Came Flying

I don’t think it is new to say that the way we live our lives can be called the music of our life. Look at any good song and life is woven through its melodies, lyrics and notes.

While I certainly agree with this, I also believe that music stirs the soul, moves the body and affixes itself to our atoms and corpuscles. It becomes us.

imagesTo set the stage for one of my favorite songs, let me take you to Beartown Lakes Park, near Chagrin Falls, Ohio. It’s a very small park. Blink twice and you miss it.  First you go down one gravel road, then you turn down a dirt road and when you get to the end of the dirt road, you are there. It has a beautiful tranquil lake, loads of surrounding trees of a wandering variety but loads of maples, a dike at one end that serves as a great sliding surface for the little buggers in late Spring and Winter. It has a meandering hiking trail that goes around the lake and a good portion of one side of the lake is covered by a wooden walkway. In short, it’s one of my favorite places on earth. When Patti and I lived there, we’d go to Beartown at least once every season.

One year, Patti and I were kidless — they were away with friends — and we headed to Beartown. It had been snowing outside, sky was completely covered and the snow was the slow falling kind that seems to put a muffled blanket on any sound. When we got there, we noticed that all the trees were somewhat bare, but starting to get a gentle covering of slow, lightly touching snow. The ground was white. No breeze to speak of. We could see each other’s breath.  By this time in Winter, the lake was frozen. Our footprints were the only ones showing on the trail and the only sound anyone could hear was the crunch of booted feet on the snow path.

We had a great visit to the lake that afternoon, sat on a bench to watch the quiet snow come to rest on the ground. While we were talking, I couldn’t help but throw in a verse or two of Robert Frost’s Stopping By the Woods On a Snowy Evening. I just love that poem. Because of that day, whenever I hear this following song from Tim Story, I am overwhelmed with the beautiful sentimentality that Patti and I experienced when we went for that walk along Beartown Lakes. While some may say it’s a bit dark, I don’t think so. I think it accurately reflects the quiet stillness of an overcast day when the snow falls in abundance, but steadily quiet and, perhaps, timid.

So, here’s Asleep, the Snow Came Flying

__________

First chemo treatment and stent placement

Last Wednesday, we spent about an hour with Sharon at Texas Oncology. She basically gave us a pep talk about what chemo can do, what it can’t do, what some side effects could be and the impact on quality of life. She was very direct and very good. There was no question we had that she did not have an answer. After learning all we needed to know about Gemzar, we moved to the infusion center, where I was to get my first round, along with many others who were already in their infusion process.

When I walked into the room, the first thing that came to mind was riding alone on a train through Europe in 1972, reading Alexandr Solzhenitsyn‘s Cancer Ward. The novel tells the story of a small group of cancer patients in Uzbekistan in 1955, in the post-Stalinist Soviet Union. It explores the moral responsibility — symbolized by the patients’ malignant tumors — of those implicated in the suffering of their fellow citizens during Stalin’s Great Purge, when millions were killed, sent to labor camps, or exiled.

So, as you can imagine, the description of the wards was dire, grim, ghastly. That was not what I saw at Texas Oncology. There were small units of five chairs in a semi-circle, attended by one nurse each. Everyone appeared comfortable. Either a friend or family member sat next to many patients. It was mostly very quiet except for the nurses behind a counter that served as a gathering spot for all the nurses tending to patients. It was so good to see people who did not feel uncomfortable or in any pain. One man lay next to me and he pulled his skull-cap down over his eyes and slept through his treatment. A woman next to him was noticeably shivering. Her lips were quivering and her body soon followed suit. But very quickly, attendants brought her a warmed blanket and she quickly stopped the quiver and seemed to fall asleep quickly.

Patti and I waited and soon the nurse administered the lead wire to the port in my right upper chest. Most nurses who deal with my port “gingerly” administer the leads, or flush the port, but gingerly indeed. Thomas, my nurse who has been doing this work since 1985, just rammed the needle into the port. It so shocked me that I forgot it hurt for a moment.

When the chemo was complete an hour later, we simply got up and left. No drama, but as I left the infusion room, I turned around to notice other patients coming in, others leaving. Cancer is just as much a part of life as laughing or weeping. We will see if any side effects manifest themselves. We pray not.

The stent — On Friday, I was admitted to Seton hospital to have a stent placed in my bile duct to eliminate my yellow cast and to allow for easier discharge of waste naturally through the bile duct. An hour on the table and an hour in recovery and I was on my way home. They were successful, but they had to be “aggressive.” That’s short for: “It’s gonna hurt like hell afterwards.” Which it did.

First couple of days, no sleep because I could not find a comfortable position since my chest hurt. But it’s Monday and I’m starting to feel better and the chest pain has, for the most part, subsided.

My good friend, Joe, said it better than anyone: “There is something to be thankful for every day, not just one day a year.”

"The First Thanksgiving at Plymouth"...

“The First Thanksgiving at Plymouth” (1914) By Jennie A. Brownscombe (Photo credit: Wikipedia)

Thank you, Joe, for keeping this day in perspective. After all, the cynic in me believes that Thanksgiving was devised by the American Turkey Growers Association, or some such lobby. Of course, my cynicism is probably borne by a certain amount of truth

And, to evidence of Joe’s belief, this week has proven what he said. As a cancer patient with a current bile obstruction, I was hoping the doctors could remove the obstruction and place a stent Sunday. However, the doctor at the hospital could not complete the procedure, and suggested I meet with an oncologist for further instructions. Does that sound like someone wanting to avoid being the bearer of bad news and force that role on someone else? Yeah, I thought so, too.

Then, we met with Dr. Jerry on Tuesday and walked away from that meeting with a vastness of hope. Mind you, not the kind of hope that our current acting president offers to those who swallow his Kool-Aid.  But real defining hope.

Just this next week we have a meeting with another gastroenterologist, and low-dose chemo starts Wednesday. So, there is hope.

But, as a cancer patient, my list of things to be thankful for may be slightly different from the average Joe, and they are in no particular order:

  • A loving God who shows me His presence in a soft breeze, a whisper, a slow stream, a beautiful sunset or a quiet room
  • Having choices because they help us to appreciate the array of care that God has for each and every one of us
  • Understanding about “windows and doors,” in that God doesn’t close a door but what he opens a window and what that means to my life right now
  • Seeing brightness every morning through the window next to my bed
  • Having a wonderfully supportive family that is there 100 percent of the time, including my wife who calls me “cancer boy” — and that always makes me smile
  • A growing stable of good, close friends who are enlisted troops to help fight that snotty bastard damien, and they know the best way to win the fight is through humor (God bless each and every one of you)
  • A growing, almost insatiable, need for the emotional satisfaction that a really good song brings to my senses
  • That I can still weep every time I hear Louis Armstrong sing “What a Wonderful World,” or that I can jump up and dance whenever I hear Frankie sing “I’ve Got You Under My Skin”
  • Over the years, I was fortunate to travel often, and I have a quiver of vacation memories to last a lifetime
  • In summary, I am thankful that the universe still seems boundless to me, and I can find something to feel good about every single day.

Thank you for allowing me the opportunity to share these with you. God bless you and your families. Be safe in your travels over this holiday weekend.