A Look Back at 2011

CML has started to take a backseat in my life and I hope it stays there. I have had continued to be monitored for my blood work and my numbers remain steady and even. I am having PCR tests done at both Dana-Farber and in Portland, OR. What I find interesting, or perhaps frustrating, is that my numbers at Dana-Farber come back undetectable, but the same test in Oregon is coming up with slight traces of leukemic cells. They are very small amounts and still represent a major molecular response. It almost seems pointless to have the testing done in Boston when the results are more sensitive, and therefore, more accurate in Oregon.

In other CML news, we had our annual Light the Night Walk again this year. My daughter, Mia, took a more active role in fundraising this year and ended up being the largest fundraiser on our team. The walk took place at a new location, which was a little strange, but still a nice turnout. We raised about $4000 as a team. Mia recently received her award for being a Bright Light (raising over $1000) and she could not have been more proud. I think we found a new team captain for next year.

I also recently received an interesting letter from the father of a friend of mine from college. A fraternity brother of mine had passed away before his junior year after having a bone marrow transplant for leukemia. This was back in the early 90's before Gleevec was on the scene. Based on the letter from his father, it sounded as though my friend had CML, but was not lucky enough to have this life saving medication. His father was soliciting for a leukemia research foundation and did not know me personally. I sent him a letter back explaining my situation and the similarities between his son and myself. His son Jon, and I, both had an interest in juggling. While we were in the house together, we would often practice together. Little did I know I would struggle with the same diagnosis that eventually took his life. It made me realize how lucky I really am.

Looking ahead to 2012, I have another appointment soon at Dana-Farber and we are heading back out to Portland in May. That is a great time to visit. Mia asked if she could come out with us this year because she wants to hug Dr. Druker. I feel the same way.

Light the Night 2011

It is that time of year again when we start fundraising for a very important event, the annual Light the Night Walk for the Leukemia and Lymphoma Society. Team Gershon has been participating in this wonderful charity event for 6 years now and we have raised a lot of money thanks to generous donations from people like you.

As most of you are aware, I was diagnosed with a blood cancer (CML) in 2006 and have been lucky to benefit from a ground breaking medication, Gleevec, whose development was funded by the Leukemia and Lymphoma Society. For this reason, my family, friends, and I have been participating in this event and try to raise as much money as we can for this wonderful cause.

This year's walk takes place on October 1, 2011 at a new location, The Garden City Center in Cranston, RI. The walk begins at 7:00 pm and is a fun, family-oriented event. Please join us in this walk and fundraising effort. Another change this year is that my oldest daughter, Mia, is trying to do her own fundraising as well.

The link will take you to her page and you can donate to our team under her name.

Mia's Light the Night Page

I thank you in advance for your support which will make a difference in the lives of thousands of patients battling blood cancers.

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.

By joining our team and raising funds for this important cause, you'll be making a real impact on the fight against cancer. On Walk night, you'll join us with other teams and individuals from all over our community in the culmination of our efforts to find cures. Walk night is a family-oriented evening in which participants carry illuminated balloons, raise awareness of blood cancers and come together as a caring community.

Every walker who raises $100 or more* will be a Champion For Cures and will be recognized on Walk night with:
- A Light The Night t-shirt.
- An illuminated Light The Night balloon in red (supporters), white (survivors) or gold (in memory of a loved one)
- A wristband which entitles the wearer to an array of food and refreshments.

We all know someone who has been affected by cancer. Please join the team and "walk the talk."

http://www.lightthenight.org/register/reg/#action=join_team;teamName=Team%20Gershon;teamID=217063;eventName=Providence%202011;eventLocation=Garden%20City%20Center;eventDate=10/01/2011;walkWithMe=true

Portland in the Spring

So my wife and I recently returned from our annual trip out to Portland to meet with Dr. Brian Druker and Carolyn Blasdel. We usually try to make this an extended trip since it is such a long plane ride. Since we have another trip planned over the summer, we made it a quick two-day mini vacation for us. Portland in the spring is usually quite beautiful. That was not the case for this trip and we hit cold and rainy weather.

My visit with Dr. Druker and Carolyn went quite well. I am progressing exactly as they had hoped. Due to my low numbers and time since diagnosis (5 years) the chances of any recurrence of the CML is quite low and grows lower with each passing day. They kept me on my dosage of 600 mg of Gleevec for now. Even on this lower dosage, my numbers have been good.

We had a discussion about a European study where some patients were taken off Gleevec altogether. Although this was a smaller study, about half the patients were able to remain off medication without a return of symptoms. The other half had a return of symptoms and went back on Gleevec. Fortunately, almost all of them went back to a positive response when the medication was restarted. Essentially, what this might indicate is that for some people, Gleevec might be curative, while for others, it might be a maintenance medication. This is a radical shift in how people are thinking about this type of treatment. Due to the lack of research at this point, no changes were proposed, but it is interesting to watch the next phase of research in this field.

I did receive my PCR from the Oregon lab after we got back. My number was 0.004. This was consistent with my previous findings at this lab and remains a major molecular response. I always find it interesting that my blood work at Dana-Farber comes back undetectable, but the Oregon lab seems to find a couple of cells. This has to do with the sensitivity of the PCR test and the particular lab where it is performed.

Anyway, towards the end of our brief trip, my wife and I did the Chocolate Walking Tour of Portland. We had a fun time, although it was raining and freezing. We tasted a lot of chocolate and I never realized the varieties of chocolates out there. The most interesting was a chocolate flavored balsamic vinegar. Who would have thought that this would taste good.

Great article abot Gleevec and Dr. Druker in Smithsonian

Great article in Smithsonian Magazine talking about the history and development of Gleevec as well as the crucial role that Dr. Brian Druker had in treating CML. We are approaching the 10 year anniversary of FDA approval of Gleevec. It was a great read and highlights what an incredible individual Dr. Druker is. I am looking forward to seeing him in a few weeks.

Click on this link to see the article.

Still undetectable

Good news that my latest results from Dana-Farber came back as undetectable. I have had 5 straight reading of my PCR at Dana-Farber as undetectable. What is less clear is whether this would be the case at the other blood lab I use in Oregon. I go back and forth between the labs. Regardless, the numbers are all good.

I did want to share a video from the National CML Society that my CML buddy, Wanda, told me about. It is a talk by Dr. Michael Mauro from the Oregon Health and Science University about the latest in CML research. He is apparently speaking this weekend in New York City as well.

An Evening with the CML Experts from The National CML Society on Vimeo.

The New Dana-Farber

So I am sitting in the waiting room at the new Yawkey Building at Dana-Farber for my 6 month visit. It is already an incredibly different experience and more reminiscent of my experiences at Oregon Health and Sciences University. First, the parking lot was much larger and there were plenty of spots. I am sure that arriving at 7:30 AM helped with this. I then went to the laboratory on the second floor. That is all that was there. It was quick, clean, and efficient. I also noticed that privacy was much more of a factor. They called patients by their first name and last initial rather than their full names which had always bothered me in the past.

After my blood work was done, I went up to the 8th floor where there was a leukemia and lymphoma clinic. It was not crowded, wide open with plenty of seating. There was even a "nourishment" stand where I was able to get a nice tea. There is even a nice monitor with announcements for the hospital. One notice just said that if you have time, you can borrow an ipad to keep busy. A man even came around offering me a newspaper which I gladly accepted.

I was quickly taken into have my vital signs done as well. This was efficient and a much nicer set up.Then things started to get messy. The power went out in the whole building and the staff had to scramble to figure out what to do. Since all the records, lab results, and scheduling are computer-based, they were pretty much helpless. I ended up being taken to see my doctor about 45 minutes late and he had no information about me other than my name. I had to give him a brief synopsis. He was able to find my lab results which were normal. I am waiting for my PCR results which take about 2 weeks. No significant changes.

As I was about to leave, the power went back on. Despite the technical difficulties, it was still a much more pleasant experience than what I was used to at Dana-Farber. I happened to stop on the 3rd floor where I found the healing garden and the dining pavilion. Not bad.

Five Years

It is hard to believe that I have reached the milestone of 5 years past initial diagnosis, but I have. I guess time flies when you are having fun. It really is a poignant moment to reflect however. It was not that long ago that people with my diagnosis were told they may only have 5 years to live. I am so thankful that I was lucky enough to be a recipient of ground-breaking medical treatment.

I remember that day 5 years ago vividly. I actually ripped the day off in the calendar in the hospital as some sort of memento. All I wanted to do was eat the Chinese food I had picked up after work. Instead, I got "the call". and reported to the ER immediately. It was all surreal what happened over the next couple of weeks.

I really have been so lucky to continue to respond well to Gleevec and essentially live almost symptom free. I am so thankful to my family and friends that have supported me and continue to do so.

I head back to Dana-Farber at the end of the month. I also go to OHSU in Portland in May. Let's hope the good results continue.