Kareem

I just came across a number of news articles about Kareem Abdul-Jabbar having cancer and more specifically, leukemia. I quickly discovered that Kareem has CML, just like me. While I would not wish such a diagnosis on anyone, I was relieved to hear that this was the type he had. It was similar to when I heard about my diagnosis and the doctors congratulated me.

I am happy that Kareem came out with this information and happier still that he will be involved with an educational campaign about the topic.

What I found disheartening was the tone that these news stories took. I got the feeling from some that Kareem was on his death bed when that was clearly not the case. He takes the same medication as me which converted this once deadly diagnosis into a chronic and manageable medical condition. Kareem continues to lead a normal life and CML will take a backseat to all of his other activities. I am hoping that Kareem's ordeal and educational will help inform the general public about the miracle of Gleevec.

Light the Night 2009 Wrap Up

I know that the Light the Night Event took place some time ago, but I have not had a chance to write until now. It has been a busy fall. Here are some pictures that we took the night of the event. It was a spectacular evening. We had a very large group of partcipants from Team Gershon and overall, there was a tremendous crowd supporting the whole event.
Our team did a wonderful job with fundraising and we we raised the most money of any private team in the state. Overall, our total was $9238. Although this is less than we have raised in past year, it is a very respectable number given the economy.

I wanted to thank everyone who donated, walked, or helped with this event. It is a powerful evening for me everytime. This was the first year both of my daughters participated. In addition, I finally had to talk to my oldest daughter about why we were doing the walk in the first place. She started asking questions this year and I knew some of her friends knew about me. I wanted to make sure I was the one who told her about my CML.Although it was a difficult conversation, it was easier than most cancer discussions given my prognosis and treatment options.

In other CML news, there was nice article in the New York Times last week about Dr. Druker and Gleevec. You can read it by clicking here.

Thanks again for making the Light the Night Walk 2009 a magical evening.

A Big Weekend

This Saturday night is the annual Light the Night Event. I am very excited for this fun event. It will be the first time my daughter, Ava, will be coming. In addition, I will be meeting one of my CML buddies, Wanda, who I have only corresponded with by email.

Despite the economy, people have been extremely generous. We have raised over $7000 and are quickly approaching $8000. Although this is less than we have raised before, it is still a very impressive amount of money to donate. Some people were so generous, they even donated twice (Thanks Blusteins!).

As a reminder of why such an event is so important, two things happened today. Frist, I received my blood tests results from two weeks ago. I remain PCRU or undetectable. That is as good as it can get in CML language. Thank you Gleevec!

In addition, one of my oncologist, Dr. Brian Druker just one a very prestigious award.

Here is the press release from the Leukemia and Lymphoma Society:

LLS-funded researcher Brian Druker receives the Lasker~DeBakey Award

Posted by Samantha Mills on Sep 15, 2009 12:24:55 PM

The Leukemia & Lymphoma Society (LLS) is proud to congratulate Dr. Brian Druker for receiving the prestigious 2009 Lasker~DeBakey Clinical Medical Research Award. Dr. Druker, along with Dr. Nicholas Lydon and Dr. Charles Sawyers, is receiving the award because of their discovery of and successful clinical trials with Gleevec®, a drug that benefits chronic myelogenous leukemia (CML) patients.

Dr. Druker received critical funding from LLS in 1995 for his research on the tyrosine kinase inhibitor, STI-571, later named Gleevec, through the Translational Research Program. He discovered that CML cells that had been taken from patients were killed by this inhibitor. In 1998, Dr. Druker was able to test Gleevec in clinical trials and 53 of the 54 patients who participated achieved normal blood counts.

Dr. Druker continued to receive funding, and in 2000 was awarded additional funds through LLS’s Specialized Center of Research (SCOR) program. In 2001, Gleevec was approved by the FDA.

Many CML patients, who once may have considered their diagnosis terminal, are now leading normal and healthy lives because of Dr. Brian Druker’s breakthrough research. LLS is proud to have funded this innovative research, and appreciates the valuable work that Dr. Druker continues to provide to our patients and their families.

Visit the Lasker Foundation website to learn more about the Lasker~DeBakey Clinical Medial Research Award, and watch this eight-minute video that highlights the important research of these three doctors.

For more information about this award, you can go to the Lasker Foundation Website. According to an email I received about this, many people who win this award also go on to win the Nobel Prize. Go Dr Druker!

Light the Night Update

I wanted to provide a brief update about where the team stands at this point. As of today, we have raised $3353.00 as a team. There are a few hundred dollars worth of checks that still need to be turned in and counted.

I am hopeful that in the next two weeks, we can increase the donations and walkers on our team and get closer to the goal of raising $12,000.

If you are planning to donate, please do so when you have a chance. If you are planning to walk with the team, please register. You can go to the Light the Night website and register to walk.

Incidentally, I had my 6-month visit to my doctor at Dana-Farber. Since the appointment was scheduled for 9:30, we were lucky enough to hit the rush hour traffic into Boston. It took my wife and I two hours to get there.

This was the first time that things were moving on schedule. In fact, I had to delay my vital signs because my bloodwork had not been taken yet. Once we went into the room, my doctor and another woman came in.

The other woman introduced herself to me and my wife and I assumed she was a physician due to her coat. This was not confirmed, however, until I was able to read her name tag. I am a little more sensitive to these seemingly minor issues because I have been teaching a class at Brown Medical School for 7 years on medical interviewing which incorporates bedside manner. I would have expected an explanation of who this new person was and whether I would give her permission to be in the room. None of this occurred.

My appointment was quick and too the point. Since my bloodwork was not back yet, we had little to discuss. I need to check in a week and a half to get my latest PCR value. When I had this done last time in Oregon, it was undetectable, so my doctor was quite pleased.

Overall, the appointment was good, but I certainly get a very different feel in the waiting room in Boston compared to my experience when I go to Portland, Oregon.

In the meantime, I need to focus on the fundraising and living my life as normally as possible.

Please Donate or Walk with Me

Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost.

Team Gershon has been participating in the event for the past 4 years and we have raised an extraordinary amount of money to help fight blood cancers. I have been personally affected by this type of fundraising since the research to develop the medication I take for Chronic Myelogenous Leukemia (CML) was funded in part by the Leukemia and Lymphoma Society. Since I was diagnosed over 3 years ago, my medication, Gleevec, has made the leukemia cells in my body undetectable. CML has gone from a terminal illness to a chronic condition managed by this wonder drug with minimal side effects.

As you can imagine, I think the LLS is such an important organization in many ways. They were the first people I turned to after I was diagnosed and they helped me navigate the confusing world of oncology. I want to make sure I am giving back to them and I hope you will assist me in this request.

You are welcome to help out in a number of ways. Any donation is greatly appreciated. I also invite you to join my team and become a fundraiser yourself and walk with our team. You are also welcome to walk with us on September 26, 2009. Below is some information about the society and how to make a donation or sign up to participate.

Please visit my page at http://pages.lightthenight.org/ri/Providen09/jgers01 to donate or sign up to participate.

The Leukemia & Lymphoma Society (LLS) funds lifesaving research that has contributed to major advances in the treatment of blood cancers and treatments for other types of cancer, such as chemotherapy and stem cell transplants. These treatments have helped patients live better, longer lives. New targeted therapies that kill cancer cells without harming normal tissue are providing drugs and procedures that are improving quality of life.

• A donation of $25 provides patients and their loved ones with FREE booklets that contain up-to-date information on their disease and help them make informed decisions about their treatment options.

• A donation of $50 makes possible a Family Support group with a trained facilitator where comfort can be found and experiences can be shared among patients and family members.

• A donation of $100 helps supply laboratory researchers with supplies and materials critical to carrying out their search for cures.

• A donation of $1,000 makes possible one- on-one conversations with health care specialists who provide patients with information about their disease, treatment options, and helps prepare them with questions for their health care team.
• 
  

Please make a donation to support my participation in the Light The Night Walk and help save lives. Be sure to check my Web site frequently to see my progress, and thanks for your support!

I really appreciate your generosity!!

Light the Night 2009

It is that time of year again and we are starting to plan for the 2009 Light the Night Event. Despite last year's tsunami during the event, we had a blast and raised a ton of money. In fact, we raised $16,660 and were the top fundraising team in Rhode Island for the 3rd time. You can see the link here.

I am hoping we can repeat our effort this year. I am in the early stages of setting up Team Gershon 2009. I am hoping to have a large number of participants, team members, and walkers. Despite the economy last year, we still managed to raise a lot of money.

This is an extremely fun and profound event. It is held all over the country. The Providence, Rhode Island event is scheduled for Saturday, September 26, 2009 at Lippitt Park at the end of Blackstone Boulevard. More specific information about he walk can be found here.

For those of you who have donated or participated before, I sincerely appreciate your generosity. I would love to have a great showing again this year, and, hopefully, the weather will agree with us. It is truly a family event and the walk itself is a 3 mile stroll down Blackstone Boulevard. Everyone holds lit balloons, as you can see in the picture, to represent blood cancers. The Leukemia and Lymphoma Society (LLS) is a wonderful organization that has helped me out in many ways.

I am inviting people to participate in several ways. You are welcome to make a donation. I am looking for people to join my team and do some fundraising. (I know this sounds hard, but with the internet, this is not that difficult.) I am also looking for walkers for the event. Please feel free to email me. You can also look at my Light the Night Website for more details.

Dichotomies

I recently returned from an exhausting, but fun trip to the Pacific Northwest. I had my 6 month check-up with Dr. Druker and Carolyn at OHSU. It was rather anticlimactic because I had received my blood test results several weeks earlier as PCRU (or undetectable). This was obviously great news and they were pleased to see such a great result. The plan is to continue to get these tests done every 3 months and return to OHSU in another year. There will be no reduction of the medication for at least 2 years since I am responding so well with few side effects.

Soon after the appointment, my wife and I took a train from Portland, OR to Seattle. This was about a 3.5 hour trip through a beautiful part of the country. We met our friends Russ and Angela out there. We had spent last May with them in Portland and the previous May we traveled together in Italy (where we had met). It was great to see them and we explored Seattle together. Seattle is a wonderful and beautiful city. We did a few things that I would highly recommend for people who are going for a visit. For those of you who have been to Pike Place Market, you know how overwhelming it can be. We decided to take a food tasting tour of the market. The Savor Seattle Tour led by Eric (who you can see in the video on their website) was wonderful. We tried foods from all over the world and got to do things other people were unable to see or do. I would highly recommend this. We also took a tour of the Puget Sound on a boat tour of the locks. This was a fun and relaxing experience. We had a blast in Seattle, despite our overall level of fatigue from the time difference.

On the day we were leaving, we received some upsetting news that a cousin on my wife's side had died of Multiple Myeloma. This is a particularly bad blood cancer that does not have a cure. Jeff (the cousin who passed away) had gone through a transplant several months ago, but his body could not fight it any longer. I admired his fight and we unfortunately shared blood cancer together. Jeff would send emails before he went back to the hospital mixed with humor and frankness. He fought a courageous fight and we visited with his family last night.

When we returned from the condolence call, we received a call from a dear friend of ours. Her father had just passed away from esophogeal cancer after a long battle and multiple surgeries, chemotherapies, etc. This awful news was also devastating and we will be heading to the funeral tomorrow.

Unfortunately, my very positive news was mixed with the sad realities of the devastation that cancer can produce. I know I am extremely lucky. When terrible events like this happen, I am reminded of how serious a matter this is. I have mixed feelings of happiness, sadness, and to some extent some guilt. I have not had to endure any of the hardships that these two men encountered. I realize now why I was congratulated when my diagnosis was made.

PCRU

I received a call from Carolyn, the nurse practitioner at Dr. Druker's office last week. She was calling me to let me know that the latest PCR results had come back from a sample I had sent out a couple of weeks prior. The results came back the same as my most recent reading from Boston, undetectable. The technical name for this is PCR Undetectable or PCRU. Since this is such a sensitive test, it continues to be good news.

I am heading to Portland next week for my 6 month check up with Dr. Druker. We will be in town less than 24 hours since we are heading to Seattle from there. It will be a mini vacation. We will be meeting up with our friends from California, Russ and Angela. We can't wait.

Undetectable

I just received my latest PCR test results and they came back as undetectable. My scores had been very low (in this game low scores is a good thing). This was the first time, however, that the scores were so low that they could not even be detected or calculated. PCRU is the jargon game given to this level of remission. It is scary to even say that, but complete molecular remission has been achieved.

As a high achiever, I am obviously pleased to receive such great news. The only problem is I can't go any higher. I have plateaued. I guess I can focus on other challenges now.

Cancerversary

To borrow a phrase from Erin Zammett Ruddy, today is my 3rd Cancerversary. It was three years ago this evening when I received that fateful call from the doctor. "I just got your blood work back. You white count is extremely high. I think you might have leukemia and need to go to the hospital right now." So much for the dinner I had brought home. That is where this journey began.

Three years later, I have a very different perspective from those early days of the unknown. Yes, I still worry about my PCR test values coming back the way they should. In fact, I am waiting on one right now. The main difference is that I do not focus on CML on a daily basis. There are many days when I do not think of it at all. I feel some distance between myself and the devastating potential of this disease. Let's hope it remains that way.

As for the Cancerversary, I am not sure if it is a day to celebrate or to mourn. Regardless, I think it is worth acknowledging that this was an important day in my life and one I will never forget.

Back to Boston

It has been a very long time since I have written on this blog. Many people have asked me about updates and fortunately, there is not much to say on the CML front. Of course that is a good thing, but does not make for very interesting writing. Since November, my life has continued as normally as possible.

Yesterday, I went back to Boston to the Dana-Farber Cancer Institute for my 6 month checkup with Dr. Stone. Despite a lengthy wait, my wife and I eventually met with him and my blood work (just a CBC) all came back within normal limits. The important test, the PCR, I need to wait 2 weeks to find out the results. My last PCR test was quite low and I was having a major molecular response to the medication. I will keep you posted when the results come back. Needless to say, it was a rather uneventful visit since there was no news to discuss. I have since learned that although I may see it as rather mundane, others are more anxious about the meeting. I will do a better job of communicating about these events.

In other news, next week, I will be attending the Bright Lights Event for people who raised money for the Light the Night fundraiser for the Leukemia and Lymphoma Society. In a previous posting, I had commented about our grand total. Apparently, this number was not accurate. Team Gershon actually raised $16,668. That is an amazing number, especially given the economy. We were the top fundraising team in the state. We also had 7 people who raised more than a $1000 from my team including myself. They are my brother and sister-in-law David and Lisa, my parents, my sister-in-law and brother-in-law Beth and Jeff, my father-in-law Bob, my cousins, Julie and John, and my aunt and uncle, Nancy and Paul. I wanted to again extend a huge thank you to all of you who participated and contributed to this event. I hope it will not be as rainy next year and perhaps we can raise even more money.