Save on your Christmas Gifts and Help Leukemia Patients!

The Gap, Inc. is offering their Give and Get special again this month between Nov 12th and 15th.  You get 30% off your purchase at the Gap, Banana Republic, or Old Navy AND they will give 5% of your purchase to the Leukemia and Lymphoma Society.  That's a win/win in my book!

Go to the website below for the coupon to use in store:
http://www.gapinc.com/giveandget/lls/
Please help us maximize this gift by passing this message along to everyone you know!

Another Great Athlete affected by Leukemia

Today, Kareen Abdul-Jabbar announced that he has been diagnosed with CML.  As I read the article on CNN, I was very pleased to see that he is working with Novartis (manufacturer of Gleevec and Tasigna) to launch an educational program focused on getting treatment and following your treatment plan.  We had also learned that many cancer patients do not take their medication as prescribed, which leads to lower success in treating the disease.

While I'm sad for Mr. Abdul-Jabbar to have to face this diagnosis, I'm pleased to see that he has chosed to get out there educating others about Leukemia and I look forward to seeing the good works he is able to accomplish.

The Birth of a Miracle

If you have ever wondered how a wonder drug like Gleevec gets developed, here is more ifnormation from one of the oncologists behind that drug.  This article made me think about the trial that Hans is entering for Ariad and the impact it may have on the future of CML treatment.

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November 3, 2009
A Conversation With Brian J. Druker, M.D.
Researcher Behind the Drug Gleevec
By CLAUDIA DREIFUS

Dr. Brian J. Druker, 54, an oncologist at Oregon Health and Sciences University and a Howard Hughes Medical Investigator, is one of three winners this year of the Lasker-DeBakey Clinical Medical Research Award, often called the “American Nobel Prize.” Dr. Druker shared the honor with Nicholas B. Lydon, a former researcher for Novartis, and Charles L. Sawyers of Memorial Sloan-Kettering Cancer Center, “for the development of molecularly targeted treatments for chronic myeloid leukemia, converting a fatal cancer into a manageable chronic condition.” Here is an edited version of a conversation that took place last month in New York:

Q. WHAT WAS LIFE LIKE FOR PEOPLE WITH CHRONIC MYELOID LEUKEMIA, OR C.M.L., PRIOR TO YOUR RESEARCH?
A. Life was pretty miserable. If you were over 40, the main therapy was interferon, which prolonged life for maybe a year in perhaps 20 to 30 percent of patients. Interferon made the patients feel awful — like the worst flu. The only other hope was a bone-marrow transplant for younger patients. The problem there was that the death rate in the first year was 25 to 50 percent.
C.M.L. patients were always difficult to see because both of us knew that the clock was ticking and there was virtually nothing that we could do about it.



Q. It must have been depressing to be an oncologist under those circumstances.
A. When I started my training in the 1980s, you rarely cured people. You felt, “if I can give my patient extra time, I’ve been successful.” But I could see there was a transformation of cancer treatment on the horizon thanks to breakthroughs in biochemistry and genomics. I wanted to be part of that, which is why I was a physician-researcher.
The way I’d been trained, cancer was seen as something like a light switch that was stuck in an “on” position. You were given a baseball bat, which was chemotherapy, and told to knock the light out with the bat. I thought, “Why don’t we just try to figure out why the light is stuck on, then we can fix it without breaking everything.”
So I started my laboratory career studying the regulation of cell growth — what turns the switch on, what helps it shut down. And that’s how Gleevec is different from earlier chemotherapies, which basically poisoned every cell in the body in an attempt to kill the cancer. Gleevec turned off the light switch and only killed the cancer cells.



Q. How did the idea behind Gleevec first come up?
A. By the late 1980s, C.M.L., though rare, was a cancer that scientists knew a lot about. We knew, for instance that a chromosomal abnormality existed in every C.M.L. patient. We knew that this abnormality created an enzyme that caused the uncontrolled growth of cancer cells. If you put this enzyme into animals, they got leukemia.
So in 1988, Nick Lydon, who led a drug discovery group at a pharmaceutical company that eventually became Novartis, came to talk to me. He was interested in developing drugs to block a family of cellular enzymes implicated in several cancers. I said to him: “If you want to develop targeted chemotherapies, C.M.L. is the disease to study. We know the most about it — and, if we can figure out a way to block this enzyme, we can turn off the cancer switch.”
So in Nick’s lab at the pharmaceutical company, he began screening for agents that worked on C.M.L. He’d send me his best compounds. I found one, STI571, that was better than the others; it would kill every C.M.L. cell in a petri dish. By 1995, STI571 was a lead compound set for clinical development.



Q. So Gleevec was on its way?
A. Not quite. Gleevec was a completely different class of drugs than what was used against cancer. Most researchers thought it wouldn’t work. Then, in 1996, before we were about to go to trials, Nick’s company merged with another, and he left. Gleevec was now caught in the changeover. I lobbied with the new executives. After some ambivalence, they agreed to go forward with Phase 1 trials. I think they felt it wouldn’t work and they could get rid of us afterwards.
But during clinical trials we saw this miracle: Once the patients were up to effective doses, we got a 100 percent response rate.



Q. Had that ever happened before in a clinical trial?
A. No. Never. You’d see patients where interferon wasn’t working, and they’d been issued a death sentence. Suddenly, all their hopes for the future were restored, and, with minimal side effects! This was around 1999, and the Internet chat rooms were just beginning. Patients in the trials began talking to each other like they’d never done before. I’d see a patient, and I’d read about it on the Internet that night: “few side effects,” “100 percent response.” Patients would come to me and say, “My doctor has never heard of this drug.” I’d never written it up. I hadn’t presented the data. Their doctors thought I was a charlatan. For a lot of people, Gleevec was simply too good to be true. But these once-dying patients were getting out of bed, dancing, going hiking, doing yoga. The drug was amazing.
Now the drug company had to make another decision. They hadn’t made enough drugs for a large-scale Phase 2 trial. But patients knew about Gleevec, and many more wanted to be included in the trials. Through the Internet, they generated a petition that landed on the C.E.O.’s desk, asking for greater access. That’s how Phase 2 was rapidly expanded.



Q. YOUR FRIEND AVICE MEEHAN OF THE HOWARD HUGHES MEDICAL INSTITUTE SAYS THAT YOU HAVE THE MOST AMAZING PERSEVERANCE. IS THAT WHAT IT TOOK TO MAKE GLEEVEC HAPPEN?
A. I think I’m more perseverance than smarts. There’s a basketball player who says, “Hard work beats talent when talent doesn’t work hard.” Well, I work hard. I understood that this project was too good to give up on. My patients needed me to do something to help them. I did everything I could by getting them a drug I thought would work.
When the drug looked like it was finally going to be approved, I was interviewed by a reporter from People magazine, Alexandra Hardy. She asked, “Who are your good friends?” I said: “I don’t have any. I work, eat, sleep, go to the gym.” She said: “You’re pathetic. You’ve got no balance in your life.”
Well, there is now. Alexandra and I got married, and we have three wonderful children.


Q. Gleevec was ultimately proved effective against two cancers, right?
A. Ten. It’s now F.D.A.-approved for 10. Gleevec went to market for a small disease, 50,000 patients, and it later got tested for other things. It’s now used by 200,000 patients worldwide.


Q. Do you see any of that?
A. I don’t see a penny, though that never was an issue for me. When I obtained the compound, it was already patented. I wasn’t going to get to test it if I tried to put my mark on it. I wanted to work on it because I thought it was going to be the way to treat C.M.L.



You know, my patients were people who’d been told “to get their affairs in order” because they were going die soon. And now some of them play with grandchildren they’d thought they’d never live to see. That’s worth more than money.

Hans update

For those of you who are also following the story of our friend Hans, he is beginning a clinical trial for a new drug created by Ariad.  I believe this is a Phase 1 trial, meaning it is at the very early stages of testing the drug, but it has shown a very good response for CML patients who are resistant to Gleevec and Sprycel.  Even more importantly, it is one of the first drugs to have an impact on the T315I mutation of leukemia.  Hans's most recent mutation testing showed that he has that mututation, so continuing with Gleevec or Sprycel doesn't really make sense.

He will have to travel to Portland for some of his treatment, but thankfully it is not further away.

Tyler and I would ask that our friends join us in praying for Hans to receive successful treatment.  The trial certainly looks like a promising option, but a little extra help is always worthwhile!

Old Guys Rule

Tyler celebrated his 43rd birthday yesterday, although he insists it is the first of many.  He's actually planning to celebrate his Dad's birthday (in honor of his donated marrow) and his transplant date as birthdays as well.  I'm thinking that I might go broke with that many birthdays, but Tyler certainly deserves some fun this year.

Actually, he decided to spend his day golfing with his brother (a round of golf is an outstanding gift idea for Tyler!) and then we had a movie night. Tyler had chosen some classic movies to watch for his birthday, so we enjoyed The Way We Were (although a week early because it arrived before his birthday and he didn't want to wait), Fast Times at Ridgemont High, and Monty Python's Search for the Holy Grail.

Although we had to interrupt the movies for trick or treaters, we really enjoyed a chance to get back to one of our favorite things.  One of our very first dates was a movie night, so we always enjoy a chance to relive that!

Happy Halloween!

An Answer To Prayer

The following was written by my father Scott Bledsoe, on February 28, 2009....about one month after my bone marrow transplant. We have meant to put this in our blog for quite some time now, and after reading it for the first time today.......I really wish we would have posted it sooner!! But....better late than never! 

First of all, I want to thank God for my son Tyler and his wonderful wife Mandy. They have been married for three years and have already faced more challenging life and death circumstances than most marriages face in fifty years. Thank God for their exemplary love.

I want to share a short personal testimony about my involvement in Tyler's bone marrow transplant operation. Our family had been aware of the eventual need for some life changing work to be done to save Tyler's life. A miracle complete healing, a continuous effective use of wonder-drugs, or some heroic medical procedure, or some combination of all of the above.

In the summer of 2008 I realized I was given the privilege of being Tyler's donor after four family members were tested for bone marrow compatibility. The first thing I thought about was thanking God for this opportunity. At that point I received an answer to an unspoken prayer. I received an incredible peace about being the donor. This peace is described in Philippians 4:7 "and the peace of God which transcends all understanding, will guard your hearts and your minds in Christ Jesus". I was being protected from all anxiety. If it was just for me, I may have been worried about the operation like I had been five years ago when I became really anxious about a simple knee operation. God was giving me a joy to give Tyler new life. There have been other times when I can say God spoke his approval into this whole healing work. Once when Tyler was at Steven's hospital for a week I found a bible in the hallway outside his room and read Romans 5:1-5 to Tyler. The message is we have access to God through faith in Jesus Christ and that we can rejoice even in suffering. Suffering produces great things for our spiritual growth, like pruning can produce more fruit, suffering produces perseverance, perseverance....character, and character produces hope. And hope does not disappoint us, because God has poured out his love into our hearts by the holy spirit, whom he has given to us. This short section of scripture was confirmed later when I picked up a book Tyler was reading when he was at the U of W hospital later on. I turned to the first page somewhere in the middle of Tyler's book and the first thing I noticed was Romans 5:1-5 quoted as an exhortation for hope.

As far as the actual operation itself goes, we had some setbacks that kept us from the original Oct. 7th, 2008 target date. Even so, I was ready! Testing, testing, and more testing for Tyler. He's my biggest hero. Then January 27, 2009 arrives and Kate takes me to the U of W hospital. We check in at 6:30 am. I go to sleep soon thereafter and wake up three hours later after contributing two liters of my bone marrow. The nurse caring for me had been there assisting these types of procedures for 25 years, and told me this was the most bone marrow she has seen taken out of someone! I was woozy and very sore all day, but they let me go home at 6:30 pm. I was very sore for about a week, black and blue for about two more weeks, and slowly healing for another week plus. I can truly say it's a wonderful thing to be able to give up your life to gain not only your life but to give life to others. In John 15:13, Jesus says, "greater love has no one than this, that he lay down his life for his friends". I consider this whole operation a major joy event for everyone in our family, especially for my dear son and his loving wife Mandy. 

Am I concerned about the outcome? The full healing of Tyler? There is nothing sweeter than to watch him improve. Slowly but surely I keep praying with hundreds of others committed to asking our father to give Tyler a new life.

 

All along I keep this one simple prayerful thought going, "be joyful always, pray continually, give thanks in all circumstances, for this is God's will for you in Christ Jesus". My body feels fairly normal again with very little pain, and if need be......I will do it again!!

My faith is based on what Jesus did for me at the cross (laying his life down for me). I believe that my good works in life would mean nothing without realizing that my salvation is based on his ultimate sacrifice, and that salvation produces good works. In Romans 2:6, Paul writes, "God will give to each person according to what he has done. To those who by persistence in doing good seek glory, honor, and immortality, he will give eternal life".

 

From my perspective, I see Tyler and Mandy diligently working out and seeking God's favor in a real life resurrection experience.

In Jesus precious name

C. Scott Bledsoe

Reflection and GVHD update

Today, I had my second GVHD evaluation at SCCA. I arrived at SCCA this morning around 8am for a routine blood draw and another GVHD eval. After my blood draw, I sat upstairs in the floor 6 waiting area looking out at the amazing view of Lake Union and Seattle. I had about 45 minutes until my 9am appt. and I started thinking about where I was at about one year ago. I had just begun radiation treatment at the UW to try and get rid of the Leukemia in my spinal fluid. This was a 12 day treatment schedule with about a half-hour of radiation each day. Needless to say looking back now, this was effectively the beginning of an extremely demanding stretch of time. The biggest demands were in the physical changes that occurred during and following radiation treatment.

I began to develop mucositis on or around the 6th or 7th treatment.....at least I started noticing a change with my esophagus and my ability to swallow. Pain began to set in slowly at first.......and then about a week later around the end of treatments it was getting "very" painful. I was developing a lot of nausea at that time, and I started to become unable to eat solid food.

About 2 or 3 days after my treatment ended, the pain was so unbearable that I begged Mandy to take me to the hospital at around midnight. I was admitted to UW at that time, and was not discharged until about 7 weeks later!! This stretch of time was physically and mentally the "most" difficult period of time for me. I could not eat.....swallow pills, and upon finding out that the radiation didn't even work I was trying to figure out what I could possibly look at for positives. Things seemed extremely bleak, and the main reason I was able to forge on was my wife by my side. Now I have many people that I drew strength from during "all" of my recovery, but during this time specifically....... Mandy was my everything!...... and the main reason I was able to wake up each day and fight against this brutal disease. Seeing her by my side....constantly.....reminded me why I needed to beat this!

During this time my food was pumped in through my Hickman line into my bloodstream. My food was called TPN, and it was a 24 hour supply of liquid with nutrients. This for all intents and purposes is what I lived on during that time......the nurses, nutritionists, Mandy, my mom, etc.... all urged me on to eat other things but for me it was so difficult and I was not able to eat much of anything. This was the start of losing about 40+ pounds over 3.5 months, and I will never forget the intensity both physically and mentally!

Also during this time is when I developed a "foot neuropathy"...called Foot Drop. About my 3rd night at UW, I fell asleep in an awkward position on a morphine drip, and woke up about 6 hours later in a lot of pain! I also noticed I could not feel my left foot. As I began to search through the fogginess of discovery.......I noticed that I could not lift my foot upwards. I also noticed that my foot was numb on top, and the numbness ran all the way up the outside of my left leg to my calf. Walking became difficult at that time and a physical therapist was able to get me a brace which allowed my foot to lift automatically for me. It held my foot at a 90 degree angle with my shin, and every step the brace allowed the front of my foot to "lift".

I could go on..........but the memories seem endless.........anyways it was about time to concentrate again on today and my GVHD evaluation. I was able to see the Long Term Follow Up specialists at SCCA today around 9am, and they inspected my skin, eyes, mouth, mobility, and we all came to the conclusion that my GVHD symptoms have not progressed and had in fact improved slightly. However, this GVHD is something that even if you have just mild symptoms.....you need to pay extremely close attention to any changes. I have received my instructions for things to watch for, and will be paying very close attention to any changes specifically with my eyes, mouth, and skin. The doctor had a good analogy for me to think about. GVHD is like a burning house.........if the fire is only in the fireplace, its all good........but if the fire is spitting out cinders, its time to call for action! GVHD treatment can prevent damage, but GVHD damage cannot be repaired. An example is your eyes ability to produce "tearing". If you lose that ability due to GVHD damage, it is unfixable..........and your eyes will be dry and uncomfortable always. With all of this in mind.........I left SCCA very happy that my GVHD had not progressed, but very thoughtful about "all" I need to pay very close attention to.

I hope all of those reading this find themselves doing well, forging on, and are looking forward to all of the positive things that surround each of us every single day! I care about all of you and hope things are going well!

Take care.....Tyler

My Heart Breaks a Little

Today, I heard the very sad news that another friend of mine has been diagnosed with a blood cancer.  Each time I have heard this kind of news, my heart breaks a little bit more.  It seems that the speed of this news is increasing, which makes me nervous.  I am thinking more and more about my environment and whether or not I have increased my risks through choices there....

In any case, I ask you to join me in praying for my friend, a truly beautiful woman, as she and her family learn to accept this difficult news and begin her treatment.

Road Trip

I was fortunate yesterday to be able to spend a full day with Hans, as we traveled down to Portland to ask some important questions about his CML. We were able to catch up quite a bit, and rehash good times and bad times. Hans and I have known each other for the better part of 10 years now, and been through quite a bit......especially recently. We met through soccer years ago, and have shared many good times. I think most everyone that visits this site probably knows by now, that Hans was diagnosed with CML last fall when I was at the beginning of my transplant preparation.

When Mandy told me that Hans had CML, I was completely dumbfounded......and it felt like a train had just driven through me! I instantly and for quite a long time thought about everything Mandy and I had gone through about hearing the news at my diagnosis, as well as thinking about everything Hans, Cynthia and his family must be feeling upon hearing that news. It was really quite devastating, especially considering I was in pretty bad shape psychologically at the time anyway. It was so strange that now along with our friend Darren Rozendaal who had gone through a transplant about 5 years ago now, we now have 3 guys from the same soccer team facing the challenge of cancer at such a young age. It seemed and still does seem unreal to me!

Back to the road trip...........Hans had scheduled a visit with a doctor in Portland who is the author of a clinical trial with a 3rd generation CML drug that is currently being tested in approximately 40 patients with some very good signs. He wanted to discuss the trial with this doctor and not only see if he would be a good candidate, but get some thoughts on his journey with cancer so far. Hans is very much ahead of the game when it comes to this battle, as he has done an amazing job researching, tapping into others experiences, joining CML groups online, and anything he can to be at the forefront of the battle against CML. I was so impressed with his questions, his candor, and his preparation for the meeting with this doctor. I'm not sure why, because I should expect it from him. His reasons for checking on this are that he has not shown a cytogenetic response to Gleevec or Sprycel, and must now consider his next direction.

We really do hate that we have this in common, but there is nothing we can do about that but fight on together with our family and friends. I think in some ways it has made the challenge of fighting cancer easier to deal with, but in other ways it has made it more difficult. Sometimes too much information can weigh heavily on the mind. I know what he, Cynthia, and his family are going through right now and it is very unpleasant to deal with. We discussed yesterday that everyone in one way or another has, is having, or will have to deal with something similar or much worse in their lifetime. With that in mind we choose to move forward and deal with each challenge as it comes.

I am very confident that Hans will recover from CML, and join Darren and I and countless others as "Survivors". I would like to ask everyone that reads this post to send positive thoughts to Hans and his family as they deal with these challenges.

Next week I will be going to my one month check-up for signs of GVHD at SCCA. At that time they will probably determine if the GVHD is progressing and whether or not we need to treat it with immunosuppressants. Prednizone was mentioned as a drug I may be taking, and I will have an update next week after I find out the next steps. It is good in many ways that I have some GVHD, because it means that my father's bone marrow is prepared to battle anything foreign to it.....not only my body, but any Leukemic cells that may try to come back. It is a fine line treating GVHD, because you dont want to treat it so strongly that your immune system becomes too weak again but you must treat it some to prevent it from getting out of hand and damaging organs, eyes, and other important body parts.

I also had a visit with my oncologist at Puget Sound Cancer Care (so nice being back with them)........and my blood results(white blood cell count, red blood cell count, and platelets) look great........my chemistry panel, Potassium, Magnesium, etc.... all look great. Some other things that have been slightly out of whack are normalizing, and overall things are looking really good. The amount of medicine I have to take has been getting less and less, and I've been feeling good overall for awhile now. My visits to the doctor are approximately every 2-3 weeks now, and I will be having my one year checkup (post transplant)at SCCA in mid-January. At that time they will do a full inspection, and I believe a bone marrow aspiration to see if Im still 100% my donors bone marrow and cancer free. They did do a couple of these post transplant already, and I am at this point "cancer free", and 100% my father's bone marrow! I know I am repeating myself, but it is still very exciting! Next I am looking forward to becoming a contributing citizen again, and returning to work hopefully a couple months from now. Fingers crossed!

Sorry to be so long winded, but yesterday really rekindled many thoughts past and present!

Tyler

Light the Night 2009 Photos

Our 2009 Light the Night team was out in force on Saturday, September 26th.  It was a beautiful evening and an amazing opportunity for us to celebrate how far we've come.  Tyler's original transplant date was around this time last year, so we were focused on the pre-transplant tests and the massive fundraising effort during last year's walk.

This year, I was delighted to celebrate how far we have come!  Tyler is in remission and looking much like his old self.  As promised, I have finally posted a picture of him with his new crop of hair!  He and I carried a Gold balloon at the walk in honor of Cathy Frank, who lost her battle to leukemia several years ago.

We had participants of all ages, which added to my enjoyment of the evening.  Mark and Vicki told their son that he was going to be in the Light the Night "parade" which was just about perfect.

Our team has raised over $4600 so far, which is FANTASTIC!  I have set some personal goals that will prompt me to keep working a little bit longer on my fundraising, so I am going to be sending out some e-mails with more details when I have them.  If you wanted to donate, but haven't you can click here to contribute the Leukemia and Lymphoma Society on behalf of our team.  I'm also collecting wine for an upcoming wine raffle, so you can send any spare bottles my way!

Both Tyler and I are appreciative that so many friends and family members were able to join us for a lovely evening walk.  We could not have asked for better weather or better company!

Thanks again to everyone who helped to make the evening a success for us!