Friday, November 07, 2008

Portland in November

My wife and I are in Portland, OR for my 6 month check up with Dr. Brian Druker. As I was heading out on the plane from Boston, I received an email from Dr. Druker's nurse practitioner, Carolyn Blasdel, with the results of my latest PCR tests. The results showed that my PCR was at 0.007%. For those of you keeping score, this is slightly higher than the 0.002% recently, but according to Dr. Druker, is not statistically significantly different. I remain in molecular remission and I have about a 4 1/2 log reduction from my original PCR score. Keep in mind that the hope is that the PCR goes to a 3 log reduction, so I am overachieving as usual.

Dr. Druker was thrilled with my progress and did not want to make any changes in my treatment protocol. He did want to consider lowering my dose of Gleevec in about a year. I am at the maximum dose of 800mg. Since I am tolerating this well, his only concern is that the long-term side effects are really unknown since they have only been studying the medication for about 10 years. He did think that if there were to be any problems, it is more likely at the higher dose.

In terms of newer developments in the field of CML research, Dr. Druker told me they are starting to use a test to monitor the therapeutic dose of Gleevec. Instead of just basing the dose on your response, he will look at the therapeutic levels of the medication in the bloodstream and then make adjustments accordingly. This makes the treatment much more individualized. In other words, 400 mg might be great for some people, but 800 mg might produce the same effect based on the Gleevec level in the body. Other developments in the CML world are continued efforts on new medications for people who are not responding to Gleevec or have genetic mutations. The major question that still frustrates Dr. Druker is whether this will ever be a curable condition or will it remain a chronic, but treatable disease.

It is always great to meet with the team at OHSU. It is such a different feel then when I go to Dana-Farber. I recognize that they are at different ends of the spectrum (and the country for that matter). At OHSU, everything feels very personable. We spent about 2 hours at the clinic. At Dana-Farber, 15 minutes is a long visit.

For anyone considering whether it is worth it to visit with Dr. Druker, my answer is a loud "Yes". Where else can you get treated by someone who invented the medication you take.

I understand why Phil Knight donated $100 million to this hospital and I hope more people continue to do so. It would be nice to have an east coast location. For now, it forces us to take mini-vacations to the pacific northwest.

Tuesday, November 04, 2008

An Election, a Birthday, and a Trip

Today has been an interesting day. First of all, it is my 36th birthday. I was pleasantly surprised on Facebook when many people apparently saw that it was my birthday and posted something on my Wall. So much for keeping it low key.

Second, as I have done many times, my birthday is shared with an election. Today is one of the most important elections we have ever had. The polling data is just starting to roll in as I write this and we should know in a couple of hours who our next president is.

Third, my wife and I are heading to Portland, Oregon tomorrow for my 6 month check-up with Dr. Druker. Although I recently had a PCR test which was extremely low, I had blood drawn a couple of weeks ago and shipped to Portland. I have my meeting with Dr. Druker on Thursday morning. I was amazed to read that last week, Phil Knight, one of the founders of Nike, donated $100 million dollars to the OHSU Cancer Center. Needless to say, that is an impressive amount of money that will hopefully go a long way to helping cure many cancers.

I will keep you posted about my visit with Dr. Druker.

Monday, October 27, 2008

And the Grand Total Is...

I finally received the report totaling our fundraising efforts for this year's Light the Night campaign. The total amount of money that Team Gershon raised was $15790.14. That is truly an amazing number, especially given the economy this year.

I wanted to sincerely thank everyone who participated, raised money, or donated to the campaign. I am always humbled by these donations and words do not always convey what they mean to me and the support that they represent. I think this is a fantastic organization that not only provides wonderful patient services, but also financing for life saving research.

Thanks to all of you who helped me with this great event!

Monday, September 29, 2008

Wet the Night

Saturday night turned out to be a wet, but fun affair. The whole weekend was rainy, so we were not sure if the Light the Night walk would go on. I later received an email saying that the walk was happening rain or shine. Saturday afternoon were filled with terrible downpours and I was concerned. It cleared up about 2 hours before the walk, however.

I was very proud of my team. They came out in full force despite the weather. We had about 45 walkers at the event. I found it amusing that Bill Koconis, who is the executive director of the RI chapter of the LLS, said over the microphone that "Cancer does not stop when its raining." That was a good point.

Unfortunately, just as we were getting ready to start the walk, the rain picked up again. It was damp. By the end, almost everyone was completely soaked. My socks needed to be rung out.

Despite all the complications and weather, it was a great event and fundraiser. I was so thrilled and honored to have all of these people there to support me, my family, and the society. People were extremely generous with their donations and it appeared as though our team may have raised the most money again this year. I should know a total fairly soon. Thank you to all of you who supported my efforts.

Thursday, September 25, 2008

A New Doctor

Yesterday my wife and I returned to Dana-Farber for the first time since the spring. It was probably the most crowded I had ever seen the waiting room. There were also many signs up talking about the crowds and wait time. I was thinking about how sad a statement it was that so many people needed cancer treatment. As much as I dislike being there, I know it is an important part of my treatment.

This was an interesting visit. I had learned about a month ago that my primary oncologist, who I had been working with for several years, was leaving the hospital to work for a drug company. I was being assigned to Dr. Richard Stone who is the head of the adult leukemia program at Dana-Farber. Despite a long wait to see him, he was a very nice guy and we had numerous connections both through myself and my wife's family. I liked his bedside manner and I am fairly particular about this since I teach this class at Brown Medical School.

I received my results from a PCR test I had back in August. My level was again at .002% suggesting molecular remission. This was the same number I has earlier in the summer and is quite low. I was happy to maintain this great level of response. I was even happier to learn that Dr. Stone did not think bone marrow biopsies were all that important for me, especially given my results. My plan is to offset my visits with Dr. Druker and Dr. Stone so that I am seen every 3 months. Interestingly, Dr. Druker and Dr. Stone did their fellowships together. Overall, it was a successful trip.

Adding to the overall theme of cancer week, this weekend is the Light the Night Event and a lot of people are walking. I am worried because it is supposed to rain, but what can you do. This has been an interesting fundraising year. It has been harder to raise money with the state of the economy. Despite this, we are already close to $15,000. I am always humbled by the responses of people who donate to such a worthy charity. It is hard to put into thank you notes what those donations mean to me and my family.

Tuesday, September 09, 2008

Light the Night Update

The annual Light the Night Event is quickly approaching. Team Gershon has already raised close to $10,000 and we hope to raise quite a bit more. For those interested in walking, fundraising, or donating, please feel free to visit my Light the Night Page.

The walk is scheduled for Saturday night, September 27th. It is an extremely fun and family friendly event. Please join me, my family, and friends as we try to raise as much money as possible for the Leukemia and Lymphoma Society.

Wednesday, August 20, 2008

A New Side Effect

I woke up yesterday morning and looked in the mirror. This is the image that I saw. Needless to say, I was a little freaked out. The whites of my eyes were all red on my right eye. This is apparently called a subconjunctival hemmorage, which essentially means bleeding in the eye. It looks worse than it actually is and does not hurt. There is also nothing to be done about it, but wait. If you look at my picture, you can also see how puffy my eye is.

My major concern, however, was that I needed to see patients today. Eye contact is an important piece of therapy. However, scaring the patients, is not usually indicated. I bought a pair of sun glasses that allows the patients to see my eye, while covering the redness. So far, my first couple of patients cancelled. I wonder if they had a heads up about what to expect.

Sunday, August 03, 2008

O' Canada

We just returned from a trip to Canada (Niagara Falls and Ontario) where we met our friends the Segalls. We had a wonderful time, not only touring and sightseeing, but also catching up with old friends. One of the highlights of the trip was that we were able to go to Sambo's Island on the Georgian Bay. This is a private island that has been in Caryn Segall's family for many generations. It was like a trip back in time to camp. No television or phone, but there was a beautiful swimming and boating area. We had a blast and felt completely disconnected from the rest of the world. It was a great feeling.

There has been a lot of catching recently. Today, we returned from a trip to the old camp where I used to work, Camp Tevya. I had not been back there since about 1992. It looked exactly the same. The difference was that we were looking to possibly send our daughter for next summer. It brought back a lot of good memories.

The other activity which has consumed a lot of time recently has been Facebook. This has become a bit addictive because I have been able to reconnect with so many people. A friend who I had not seen since 3rd grade contacted me.

While Facebook is a wonderful social networking tool, it does present an interesting dilemma. Most people I am connecting with do not know about my diagnosis. It is a bit awkward to bring this up, but seems important as well. I kind of feel bad, like I am dropping a bomb out of nowhere. I am a little more relieved when someone has heard about me already. I think the blog is helpful since I don't have to retell the whole story. What I realize is that there is no easy or tactful way to tell someone you have been diagnosed with leukemia. It is a real conversation stopper. Regardless, I love hearing from old friends and look forward to many reconnections.

Tuesday, July 22, 2008

Molecular MD

Last week I took my first blood test at Dr. Druker's lab in Oregon. The company is called Molecular MD and has extremely accurate PCR tests for CML. Dr. Druker and Carolyn Blasdel (his nurse practitioner) were concerned because the general rule of thumb with blood tests and CML is to have it checked every 3 months. My next local appointment was not until September which was closer to 5 months.

I was not sure how this process was going to work, but it turned out to be very easy. Carolyn sent me a slip for a blood test. She and I also spoke with Molecular MD to have a test kit shipped to me. They sent me a box with a test tube, some paperwork, and a prepaid Fedex slip. All I needed to do was to find a lab that would draw the blood and call Fedex to pick it up. Molecular MD had some relationships with labs around the country and the one closest to me was Quest. It was close to my office, so I stopped by during a cancellation one day. The phlebotomist drew my blood, took care of the paperwork, and shipped it overnight to Oregon. It was so easy. The only difference was that I had to pay out of pocket for the actual blood draw.

Today I received an email from Carolyn:

"Good news, your PCR is very, very low at 0.002%. Report attached. This is an excellent response, well below the level of major molecular response (0.1%) and puts you in the group least likely to relapse."

This was my lowest reading by far. It was great to hear before I head off to Niagara Falls tomorrow.

I think this type of blood test option is great for people who have CML. Any doctor can order this type of bloodwork, so it is certainly worth asking about.

In the meantime, Team Gershon continues to raise money for the Light the Night Walk. We have raised $875 and are just getting started. Please let me know if you are interested in joining the team. It is a lot of fun.

Tuesday, July 01, 2008

Light the Night 2008

It is that time of year again. Light the Night is quickly approaching. For those of you who don't know about it, Light the Night is a wonderful fundraiser for the Leukemia and Lymphoma Society (LLS). It takes place every fall in cities across the country. The local event is about a 3 mile walk down Blackstone Boulevard in Providence, RI. Last year, about 1000 people marched down this street holding red and white lit balloons. The red balloons signified blood cancers and the white designated survivors of blood cancers. For those who have not experienced it yet, it is a magical night and a lot of fun as well.

For the past 2 years, I have put together a team to raise money and get people to participate in this charity. Team Gershon has been the top fundraising team in the state for the past 2 years. I was so proud and honored to be able to work on this campaign. Raising money for the Leukemia and Lymphoma Society is near and dear to my heart. The LLS funds researchers who treat and try to find cures for blood cancers. One of my doctors, Dr. Brian Druker, at the Oregon Health and Sciences University in Portland, developed Gleevec with funding coming from the LLS. Without these scientific advances, I would not be in remission now.

I learned a lot more about the LLS and their mission this year. I was invited to attend their annual Mission Days in Washington, DC, this past fall. I made several blog posts about it which you can read below. It was an inspiring trip and I learned that the society is committed not only to finding cures for blood cancers, but also in providing excellent outreach and services to patients and families coping with a blood cancer diagnosis. As such, I want to do my part to help out the society as much as possible.

There are a couple of ways to get involved with this event. First, please join my team. You can click on this link to go to my Light the Night Page. You can then click on Register to Walk. This would mean walking in the event and hopefully trying to raise some money for the LLS. Raising money is fairly easily with an automated system over the internet. All you have to do is enter in email addresses and a letter is sent to those people you might solicit for donations. Second, you could donate directly. Following the link to my page or anyone on my team, you can make a contribution online or you can send a check to me in the mail.

The other nice thing going on this summer is that there is a bonus if you raise money through the LLS website. You can get gas cards for certain amounts. Here is the link. With the price of gas now this is really nice.

The Light the Night Walk is scheduled for Saturday night, September 27, 2008 in Providence. If you cannot make this event, there are local ones all over the country, some on different dates. You can go the the Light the Night Website for more information.

If you need help with fundraising, I am happy to assist you as well.

Monday, May 19, 2008

Portland Take Two

My wife and I just returned from a trip to Portland Oregon to meet with Dr. Druker. We decided to make it a mini vacation as well. We met our friends Angela and Russ from the Bay Area who we met last year in Italy. It was a wonderful reunion.

Let me talk about the main purpose of the trip which was my second appointment at OHSU. I met with Carolyn, Dr. Druker's nurse and then Dr. Druker himself. We reviewed my symptoms and progress over the last 6 months. They were both pleased with how well I was responding to Gleevec and Dr. Druker even thought I was slightly ahead of where he might expect me to be at this point. I was always a little bit of an overachiever.

The most interesting discussion was about blood testing, and specifically PCR tests. Of all the blood tests I have done, the PCR tests tells me how much my body has changed due to Gleevec. It is such a sensitive test that it can pick up extremely small traces of CML cells in the blood. I started off with a reading of 34% and have gone way down to 0.01%. This was a big drop. The frustration that Dr. Druker noted was that he had a hard time getting all the information he wanted from my lab test results. I have my blood work done at Dana-Farber and faxed to him. Since the PCR is not a FDA approved test, there are no rigorous standards about how to conduct the test. That is why when you start at one lab, you need to keep going to that lab. Otherwise, you are comparing apples to oranges. If you think about when you go for regular blood work, you don't question which lab does it because they should all be getting the basic readings in the same manner. This is not true of the PCR test.

As such, Dr. Druker suggested trying out a new service for CML patients that I had not previously heard about. For fellow CMLers out there, this may be of interest to you as well. I can have my blood drawn at any lab in the country and then shipped to a lab in Oregon for the most extensive type of CML blood work available. For more information about this service, visit the CML Alliance website. The lab that actually performs the test is through a company called Molecular MD. My plan for now is to have the blood test done with the new lab over the summer and return to Portland next fall. In between, I will be at Dana-Farber in September for a bone marrow biopsy.

So much for the CML stuff for now. Portland is a fantastic city and absolutely beautiful. You can go from the beach to the mountains within minutes. There are some pictures of our friends and myself and my wife at the Japanese Garden in Portland. The rocks are from Cannon Beach on the Oregon Coast. Haystack Rock is the most photographed rock in the world. You will probably recognize it from other pictures or from movies you have seen. I also have a picture from Mt. Hood which you can see from the city as well. We went to the top and as you can see, there is snow on it. In fact, you can ski on the mountain all year long. Right behind me where this picture is taken is a famous lodge called the Timberline Lodge. For those of you who have seen the movie the Shining, this is the lodge you see at the beginning. Only the outside is shown. The inside was filmed somewhere else.

I think the most interesting thing I learned on the trip was that the name of the city of Portland came from a coin toss. Apparently a person from Portland, ME and Boston, MA were deciding on the name and they flipped a coin to see what it should be. Obviously Boston did not win, but they did make it to the next round of the NBA playoffs.

Wednesday, April 09, 2008

A Day on the Hill

Wow! Yesterday was an exciting and exhausting day. I was quickly reminded that Capitol Hill is actually a large hill and the place is huge. My feet can attest to the physical efforts of just getting from building to building.

the Executive Director of the RI chapter of The morning began with a trip on the Metro to Union Station. We walked to the Dirksen Senate Office Building where we had a breakfast briefing and heard from two congressmen encouraging our efforts. Then we were off to our meetings. The Rhode Island contingent (myself, Bill Koconis, executive director of the RI chapter of the LLS, and Joe Gildea, a member of the board for the RI LLS and a national member of the Board of Representatives for LLS) had a couple of hours before our first meeting.

Interestingly, it was a busy day in the building we were in since the Senate Armed Forces Committee was grilling General Patreus about when we could start reducing our troop levels from Iraq. There were opponents and proponents of the war, making for some interesting interactions. This hearing did throw us for a bit of a loop because our first meeting scheduled with Senator Jack Reed from Rhode Island was not going to work according to our schedule since he was asking the General questions about Iraq. It turned out, however, that Senator Reed wanted to meet with us and had asked us to come down to the hearing so he could meet us. We were supposed to be escorted there by someone from his staff. When we got to his office, however, we learned that since Senators Hillary Clinton, Barack Obama, and John McCain were all at the hearing, the Secret Service would not allow us in.

At Senator Reed's office, we were soon joined by 5 other people from the National Staff of the LLS. This included the President of the LLS, the Vice President of Public Policy, and several other high-ranking members of the society. In addition, Lynn Aronson, the former Executive Director of the Rhode Island Chapter and currently working for the home office on grassroots advocacy also joined us. She knew Senator Reed well. She also happens to be the aunt of one of my best friends.

Needless to say, with this big crowd, I was a little intimidated. It was my first meeting and I had to give my talk in front of all these people. Senator Reed did not attend the beginning of the meeting, but instead we met with one of his legislative staff. He was a nice guy from Rhode Island who listened closely to what we were saying. I eventually told my story of how my life changed several years ago and why I was now in Washington advocating for the LLS.

Soon after, Senator Reed walked in. He had left the hearings to come and meet with us. He was such a nice man and really took charge of the room. I told him that I was from his hometown and we chatted a little about Rhode Island. Senator Reed was clearly in agreement with all of our initiatives so we were preaching to the choir to some extent. After our discussion on LLS matters, one member of our group asked him about the hearing and Iraq. Senator Reed spoke off the cuff about his feelings about the hearings and what is really happening with the Iraqi government. He has been to Iraq several times and as a former Army Ranger, is well versed in military operations. I found this to be fascinating.

This was an invigorating meeting. It made us feel like we were an important part of the legislative process and that our voices were being heard by the people we elect. It seemed that the whole group was quite pleased with our meeting. One person commented that the meeting was one of the best ones they had ever had with a Senator. We were off to a good start.

The Rhode Island contingent broke off from the larger group and went to our next visit with our newest Senator, Sheldon Whitehouse. We were not scheduled to meet with Mr. Whitehouse, but instead, some of his legislative staff. I did not feel as much pressure during this meeting and was able to speak a little more comfortably. About halfway through our discussion, however, Senator Whitehouse walked in to speak with us. He was very friendly and also on board with our agenda. He seemed interested in attending some of the local events, especially the regatta. We felt that this meeting also went quite well. You can see the picture of all of us above.

We took a little break and walked over to the house of representatives office building. We ended up eating in the cafeteria of the Cannon Building with hundreds of young legislative staffers. I was amazed at the young age of the staff. I quickly realized how influential they were, however. It is likely these young staffers do much of the leg work and advise the senators and congressmen about important issues.

After lunch we met with a legislative staff member from Congressman Langevin's office and later Congressman Kennedy's office. We went through our agenda items and they also seemed to agree with our issues and said they would pass on our message to the representatives.

We had a few hours to kill and we walked around the mall. After walking for some time, we decided to make a stop at the National Gallery of Art. We saw some famous impressionist pieces.

Our last event was a Congressional Honors reception in the Capitol Building. This was an interesting event, combining LLS volunteers and staff with legislators. During the event, we met Senator Ted Kennedy. Senator Enzi and Congresswoman Matsui were honored for their efforts to help the causes of blood cancer research.

We flew home late last night completely wiped out but encouraged by the democratic process. As cliche as it may sound, my voice does count and the politicians actually want to hear it. My view of the political process and certainly the federal government has changed drastically.

Today, as I reflected upon the experience, I was overwhelmed by what I had done. I felt strongly about the issues and realized that my story is an important one to tell. It only further emphasized the mission of the LLS and the reasons for asking for the funding changes for research.

My wife and I had time to discuss the events of the past few days as we drove to Dana-Farber to talk about my latest blood test results with my oncologist. Talk about a role change again. I guess I will always be a patient, but I can add advocate to the list as well.

By the way, my bloodwork remained steady. I still remain in molecular remission with a PCR value of 0.008%. I do not have to go back to Dana-Farber until September, but I head to Portland, OR next month to meet with Dr. Brian Druker again.

Monday, April 07, 2008

Mission Days Part 2

The second day of the LLS Mission Days has been quite eventful and educational. It is probably best described as an emotional roller coaster. The day started with a networking session in the morning with other chapters. It was a time to brainstorm about what has worked and what hasn't for the LLS in terms of fund raising efforts. It was interesting to learn about other ideas that chapters use to fund raise. I was sitting at a table with people from California, Delaware, Pennsylvania, North Carolina, and New Mexico. I think I was the only patient volunteer, but could not be sure. This session was motivating, however, because it did provide several great ideas for things that could be done on the local level.

I then went to a talk on Comprehensive Cancer Care presented by someone from the American Society of Clinical Oncology. She talked about efforts to improve treatment plans for cancer. It was not totally relevant to the LLS. What was most frustrating was that this presenter spoke to the audience as if everyone knew about her references. For example, she said something like I know you have all read the IOM report. I am not even sure what the IOM is, let alone their report. Needless to say, this was not the most useful talk.

An awards luncheon followed where we sat with other people from North Carolina, Illinois, and California. Across from me sat another woman who was a volunteer from North Carolina. She was introduced to me as a survivor. When I was asked by someone at the table how I became involved, I started going into my story of being diagnosed with CML. It turned out that Dorothy from North Carolina also has CML and was diagnosed in 2001. She also takes Gleevec. I spent some time talking with her after the lunch. She was in some of the early trials of Gleevec and goes to MD Anderson for treatment. It was great to see someone who has been PCR negative so long. Our conversation was quite interesting because she was so knowledgeable about CML and the latest findings. It was great to have the opportunity to compare notes and discuss what it is like to have CML. As the day went on, I heard numerous people talk about having CML and taking Gleevec, but it was so busy, I did not get to speak with them directly.

As interesting as it may seem, I have not spoken to many people with CML. Although I write this blog, I do not spend much time talking about CML. Today, I talked quite a bit about my experience and it did feel a little awkward. What I have learned, however, is that I have a powerful story to tell and that will be important tomorrow as we meet with the congressional delegation.

The final events of the day was legislative boot camp. We learned about the initiatives we are trying to talk to the congressmen and senators about tomorrow. For each agenda item, a speaker talked about a personal experience about why these initiatives were so important. These were extremely emotional. One woman spoke about access to clinical trials for her mother. Despite having good health insurance, her mother was denied access to a clinical trial for her diagnosis of multiple myeloma. Traditional therapies did not work and her doctors suggested and experimental medication. Although the treatment is generally covered, routine care is not. Her insurance company denied the request for a long time, leading to even more expensive traditional care. Her mother helped introduce legislation on Capitol Hill so that others would have better access to clinical trials. Her mother passed away in December. After this woman spoke, she was given a standing ovation for being so brave to tell this sad, but important story. It reminded us all of why we were here and how powerful a personal story can be.

Tomorrow I head to Capitol Hill to speak with legislators and explain the initiatives set forth by the LLS. I imagine I will be telling my personal story rather frequently. Let's hope it is useful in pushing for the funding that is needed.

Sunday, April 06, 2008

Dr. Gershon Goes to Washington

I arrived this afternoon in Washington DC (well technically Alexandria, Virginia) as part of Mission Days for the Leukemia and Lymphoma Society (LLS). I was honored to be asked to represent the Rhode Island contingent of the society as a volunteer and advocate. The idea of Mission Days is to meet with the congressional delegation from my state in order to advocate for programs that are important to the LLS. People from all over the country have come to Washington to advocate for blood cancer research. I will receive training tomorrow, and on Tuesday, I spend the day on Capitol Hill meeting with the Rhode Island Senators and Congressmen. I received the schedule today and my group has meetings with Senator Jack Reed and Congressman Patrick Kennedy. We will also be meeting with legislative staff for Senator Sheldon Whitehouse and Congressman James Langevin.

This is very exciting for me and represents a significant role change as well. While I have worked hard at fund raising for the LLS, I am now going to be advocating their agenda. Apparently I have a strong voice as someone who has been treated for a blood cancer and has been the beneficiary of the research that has been crucial to me. Perhaps this is where my experience can be most useful to others. I remember when we met with Dr. Druker in the fall we asked him what would be important for fund raising for his research. He said that more money is needed for the National Institutes of Health and National Cancer Institute.

The legislative agenda includes 4 important issues, increased funding for the National Institutes of Health and the National Caner Institute, the creation of a Blood Cancer Research Program at the Department of Defense, and Access to Clinical Trials. I was a little unclear about the last one, but apparently when someone enrolls in a clinical trial (e.g., testing a new medication) insurance companies can deny routine costs such as blood work, doctors visits, etc. During normal treatment (like I have undergone), the insurance company has paid for everything. If the clinical trials did not exist, however, the development of Gleevec and other treatments never would have occurred.

I will be writing as much as possible about the Mission Days, particularly after the day on Capitol Hill.

Monday, March 03, 2008

2nd Cancerversary

It is hard to believe, but two years ago today, I received that awful phone call from my eye doctor. I returned a couple of weeks ago for a check of my eyes and all of the scarring was gone.

Over the two years, a lot has changed. In terms of CML, things are going well. I am in molecular remission with few if any side effects. I am working with my oncologist at Dana-Farber and also Dr. Druker at OHSU. My next appointment in Boston is next month and then in May, we are off to Portland Oregon again.

As I reflect on the past two years, I want to give thanks. I am well aware that a diagnosis of cancer affects everyone surrounding an individual. I think it is probably harder for those around me than it is for myself to deal with. I have received the most wonderful support from family and friends. It is at times of need when we really see the true nature of people. I have been so impressed by the responses I have received. I may not say it enough, but I love and thank you for all that you have done for me.

My journey in the CML world takes an interesting turn next month as I head to Washington, DC to lobby our congressmen and senators on behalf of the Leukemia and Lymphoma Society. I am looking forward to this adventure and will keep you posted with details.

Wednesday, January 16, 2008

Molecular Remission

I had my regular visit with my oncologist at Dana-Farber. I was pleasantly surprised to hear the latest results of my most recent blood test. For those of you keeping notes at home, my original PCR value at diagnosis almost 2 years ago was 34.5%.

The PCR test is defined as the following from the Leukemia and Lymphoma Society Website:

The short name for a lab test called "polymerase chain reaction," a very sensitive test that can measure the presence of a blood cancer cell marker in the blood.

This meant that at diagnosis 34.5% of my blood cells showed the presence of the BCR-ABL cancer gene that produces CML. My previous reading in October 2007 showed that this number had dropped to 0.02%. This was more than a 3-log (or three fold) reduction since diagnosis.

As of December 2007 when my blood was last drawn, the number had dropped even further to 0.0038%. This is another 10-fold reduction. In total, that means a 4-log reduction since diagnosis. Although my wife thinks it is funny that I focus on these numbers, it helps to think of this in context. Otherwise, these numbers are meaningless. When you have cancer, numbers mean everything.

Upon meeting with my doctor today and reviewing the numbers, he said that he would consider me in Molecular Remission. This was essentially the last stage of remission and a huge relief. I have included a definition of molecular remission below.

Molecular response
A treatment response is called a complete molecular remission if no leukemia cells in the blood and/or marrow can be detected by PCR.

Needless to say, this is great news and I am still processing what this means. In the meantime, I can relax a little and enjoy life.

Tuesday, January 15, 2008

Role Reversal

It has been some time since my last blog entry. That is for a pretty good reason. I have not thought too much about CML or cancer for some time. Not that it ever disappears, but it is not in the forefront of my mind at all moments of the day. I am reminded when I take my pill in the morning and at night, but that is pretty much it. I am a hell of a lot more concerned about being a good father, husband, son, brother, psychologist, teacher, and business owner. If it is possible, CML has taken a seat on the back burner for the time being.

That is until tomorrow. Every few months, I am blessed with the opportunity to be thrown back into the world of cancer and visit Dana-Farber. It is not that I mind going there (not that I particularly like it either), but it is a weird role for me to be in. I spend my days at work being the provider of mental health services. I give out advice and help people deal with problems. I teach medical students how to interact with their patients and have a good bedside manner. I love being the doctor. I am a lot less comfortable being a patient. It is hard to be on the other side.

Tomorrow will be the first time that I visit Dana-Farber in several months, other than to get some blood drawn. I have not yet spoken to my oncologist about my meeting with Dr. Druker in Portland. I will also be getting the results of my most recent blood work. Although I am not too worried about this, the whole process is stressful and overwhelming at times. The only positive thing about tomorrow is that I get to spend some time alone with my wife. We have a date to the cancer unit. Fortunately, we usually go for a nice lunch afterwards.

I have also booked a plane ticket for our next trip out to Portland to visit with Dr. Druker in May. The best part is that friends we made while on vacation in Italy will be meeting us there. In other words, it will not be just a cancer trip, but a chance to relax and have some fun with friends we have not seen in a while. Actually, it will be exactly one year since we met Russ and Angela at the Vatican. Quite ironic and interesting since I am not Catholic.

I will provide more updates after tomorrow's appointment. In the meantime, here are some recent pictures of my girls from a New Year's trip to Vermont.