Not alone

So I am in Chicago at a conference that I usually attend every year. Although the conference is not overly intriguing, I usually go in order to catch up with friends from internship days and to visit a city. On this trip, we were also able to schedule visits with some college friends of mine.

Coming to the conference, I was a little hesitant because most of the people I wanted to see, I had not seen in about 2 years. I am not great about keeping in touch with these folks, but when we get together, it is fantastic. I was apprehensive because as far as I knew none of them knew about my diagnosis. I was dreading the awkwardness of the conversation. I anticipated it would go something like this:

"How have you been?"

"Great."

"What's knew with you?"

"Well, I was diagnosed with leukemia."

Talk about a conversation stopper. I did not want this to be the first thing we talked about, but I did want to tell these people about this important change in my life. It just felt weird that I had this burden of a topic to discuss.

Within an hour of starting the conference, I ran into one of my friends, Deb, I was hoping to see. Here it was, the awkward moment. When I asked her how she was doing, she told me she had a tough year and was diagnosed with colon cancer. I was astounded. Here I was worried about disclosing my own cancer diagnosis, and she was dealing with the same issue. I told her that I too had been diagnosed with cancer this year and we both kind of stared at each other in disbelief. We had both joined a club we did not want to belong to in the first place. She told me about her surgeries and chemotherapy, but that she was also in remission. I was relieved to hear her progress, but felt guilty about how relatively easy my treatment had been in comparison.

While hearing Deb's news was a huge shock for me, it also paved the way for a smoother transition with my other friends who did not know. Since Deb and I are both psychologists dealing with cancer, we both had similar notions. How do we make our experiences helpful to others? I tossed around the idea of doing a book together with her or something to help other younger people who are diagnosed with cancer.

Needless to say, although cancer can make you feel very isolated, sharing this news with Deb made me feel much closer to her. I said to her "isn't it annoying that we are even having this conversation?" Oh well, you play with the hand you are dealt and I hope we can make a royal flush out of this one.

Obladi Oblada

It has been quite a long time since my last post. That is for a good reason. Not much has happened to me in regards to CML. There are many days when I don't think about CML or worry about it at all. It is interesting how CML has taken a back burner in many respects. I almost forgot my medication last week. Fortunately, I use a pill case that does not let me forget.

When I was first diagnosed, I went through a similar thought process that I suspect many people go through when diagnosed with a potentially fatal illness. I wanted to live life to the fullest and focus on what is important in life. I think I try to do this anyway, but in reality that is a hard thing to accomplish. I need to take care of my family and work and that takes a lot of time. My wife and I have been better about scheduling time for ourselves and getting a babysitter more often. We are also planning our 10th anniversary trip to Italy in the spring.

In terms of cancer news, I am doing quite well and just waiting for my next blood test. That will take place right after Christmas as I travel up to Dana-Farber in Boston. I am feeling good and my only side effects from the medication are muscle spasms in my legs and mild nausea in the morning.

I reported on my last blog about how proud I was of our Light the Night Team. As a team, we raised over $23,000 for the Leukemia and Lymphoma Society and we were the highest fundraising team in the state of Rhode Island. I was so impressed by the hard work and dedication of my team members and the generosity of the donors. Having such a wonderful support network makes dealing with this cancer nonsense that much easier. Although I am taking a short break from fundraising, I am starting to brainstorm about other creative ideas other than simply asking for donations. Although that seemed to work quite well, I want to find other ideas. I welcome any suggestions.

In the meantime, I am off to Chicago with my family for a conference and to visit with friends.

Oh What a Night!

Light the Night in Providence, RI took place on Saturday, September 30, 2006. It was an incredible event. I did not realize how many people would be there. There were over 1000 registered walkers and many more who were not registered. A sea of red and white ballons lit up the dark skies down Blackstone Boulevard. It was a moving experience.

I was so impressed with my team. We really rallied together and were able to raise a huge sum of money. Prior to the event, our total was over $21,000. More money came in at the event and over the next couple of days. I am awaiting our final tally from the Leukemia and Lymphoma Society.

It was overwhelming to feel the support of my family, friends, and coworkers who have been with me throughout this process. To see a team of 60 or so members walk in my honor was very humbling. It is hard to put into words the meaning of this support and what these fundraising efforts symbolized to me.

In other news, my six months results came back and they were quite good. My PCR test showed an almost 2 log reduction since I started. This is a complicated statistic, but it means that my numbers are heading in the right directions. A 3 log reduction is expected by 18 months on treatment so I am getting close. Also, my cytogenetics test showed that as opposed to March when my cells were 100% leukemic, they are now only 1%. My doctor told me that anything less than 3% was in the normal range. I have not seen the lab results yet, but this is the information my doctor emailed me. This is all great news indicating that Gleevec is working. All the more reason to give to an organization like the Leukemia and Lymphoma Society. They funded some of the research to help develop this medication.

Six months and counting

Today was an exhausting day, both emotionally and physically. I had my 6-month check-up at Dana-Farber. This was my first appointment in 3 months. It was a little scary to have no blood results for a 3 month period. In addition to blood work, I also needed a bone marrow aspiration and biopsy. (More on this in a little bit.)

I have written before about what it is like to be in the outpatient unit at Dana-Farber. In some ways it is truly awful and in other ways it is amazing. The first thing you notice is how packed the place is. The fact that this many people have to deal with cancer is unbelievable. Then you start to look at the people. Many of them have no hair and are wearing masks and gloves. It is a frightening sight because it makes you think that this could be you if treatment does not go well. I always feel a little out of place and guilty since I have not had to go through any of the same treatments that most of these people have had to endure. I am very lucky with the CML diagnosis and the ease of the treatment so far.

My bloodwork came back with almost all counts within the normal range. This is the hematological response that I had within a month of starting Gleevec. One of my oncologists then did a physical exam and everything was normal. Next was the bone marrow work.

A bone marrow aspiration is an important part of monitoring treatment effectiveness. Although much information can be gained from peripheral blood (regular blood draws), much more can be learned by looking at the marrow. The marrow is where new blood cells form. If they are producing more healthy cells than leukemic cells, that is a good sign. There are a lot of complicated tests and statistics associated with these tests, but I will not have results back for a couple of weeks. I will write more about this topic then.

The bone marrow aspiration and biopsy is an uncomforable and somewhat painful procedure. The worst part for me was the novacaine to numb and area on my hip. As I lied on my stomach, the doctor gave me a number of shots of novacaine and then there was a burning sensation soon afterwards. I think that area of the back is particularly sensitive anyway, so the feeling is worse. I never have problems with giving blood or getting shots, but these hurt.

The next step is removal of the marrow. In order to do this, the doctor puts a rather sizable needle through my hip bone and into the area where the marrow is located. Getting through bone is not so easy and he really has to push and twist to get to the right location. The best way to describe this is to think if using a corkscrew to open a wine bottle. When he does reach the right area, he then removes the marrow by suctioning it out. This is the weirdest feeling because it felt like an intense vacuum. My doctor described it as someone pulling on your leg, but I didn't find it that funny (bad joke). After he removed 2 large vials of the marrow (which looks like red blood), he then needed to biopsy a small piece of bone. This felt like a quick pop. Not too bad.

That was the whole procedure. It only takes about 10-15 minutes. Relatively speaking, it was not the worst pain I have ever experienced, but it was not something I am ever going to look forward to either. Now that the procedure is over, the waiting game begins.

Huis Clos

Sorry for the obscure French reference. Huis Clos is a book by Jean-Paul Sartre that translates to No Exit. This was a book I read in high school. I chose this title because I was thinking that sometimes with CML there is no escape. That is not necessarily a bad thing, but there have been a number of circumstances when CML and/or cancer has come up in unexpected ways. Most of the time I don't think about CML and even forget that I have it, but it has a way of sneaking up on me.

A few weeks ago, I was at a weeklong workshop on the treatment of ADHD. The speaker made numerous references to medication treatment for ADHD and how it is going to target the genetic markers similar to the way cancer treatments, like CML now do. CML was the last thing I was expecting to be thinking about during the workshop.

A couple of times over the last few weeks, I have been referred to as ill or sick. It is funny because I never think of myself as sick or ill. This may be denial, but since I never felt sick, to me CML is a condition that I am working hard to control and not a sickness that is threatening me. This may be a naive view, but I think of CML as a part of my life that I deal with like any other stressor I might encounter. Since it often equated to diabetes treatment as a chronic condition, I don't really see myself as a sick or an ill individual. That is why I kind of struggle when people ask me how I am feeling. I am fine and have never felt sick. It is just a natural question for people to ask when they assume you are sick.

In other CML news, our Light the Night team has raised around $13,000 so far for the Leukemia and Lymphoma Society. I am incredibly impressed and humbled by people's generosity.

Irony

I was just doing an internet search of this blog to see if it would come up in a google search. It did not. Instead, one of my hits was for an article on research I conducted for my dissertation. Here is the link. It shows a picture of me in 2001, 5 years prior to diagnosis working with a leukemia patient. I know I have mentioned the ironies in my diagnosis in the past, but this picture really hit home. I remember working with this boy every time he came in for his treatment. He had a different form of leukemia which required ongoing chemotherapy. He would get so nervous about having the needles inserted, so I would distract him using a virtual reality system during the procedure. It worked so well for him that he would sometimes not realize when the nurses were done. I still use virtual reality, but now I use it to treat people who are afraid to fly, speak in public, or heights.

Sometimes I wonder if there is a reason I have leukemia. Othertimes I think it is just bad luck. Either way, I still have to deal with it. I am lucky to have an easy treatment and great support around me. Hopefully, I will never need distraction like that boy did in my study. Although, I do have a bone marrow biopsy coming up next month. Something to look forward to.

Updates

It has been a while since I last posted. I have been busy working on the Light the Night Fundraising campaign and trying to raise money with Team Gershon. We have a lot of people signed up to participate in the event and we are already raising money. I think in the couple of weeks since we started we have raised about $1500. I am hoping that we can do a lot more, but it is a great start. For more information about the Light the Night event see my previous post.

Last week, a press release linked Gleevec use to heart failure. The articles seemed to imply that using Gleevec increases your chances of heart failure. My poor grandmother was frantic when she saw the information flash by on CNN. I told her I would look into this and find out what I could. I immediately went to my scientific resources. As I was trained to do during graduate school, I never rely on the press to report on scientific findings. Instead, I went to the original article which was published in a journal called Nature Medicine. The study reported on 10 individuals who were taking Gleevec and also had heart failure as well as a mice study. It generally found that these individuals who take Gleevec might have an increased risk for heart problems. This does not mean that anyone should stop taking Gleevec, but heart monitoring might be warranted in addition to other regular testing. I also was in touch with my doctor who said that he was not going to be ordering any additional tests at this time, but we could talk about this at our appointment in September. Needless to say, this was a bit of a scare, but my estimation is that this information was blown a little out of proportion by the press.

In other news, I have written before about Erin Zammett Ruddy who was diagnosed with CML in 2001 and writes a column in Glamour Magazine about her experiences with CML and Gleevec. She has also written a book called My (So-Called) Normal Life, which is excellent. She has just started her own blog called Life with Cancer. You can click on the link to read and comment about her experiences. She is a very honest and funny writer if you have not previously read her columns in Glamour.

Giving Back

It has been a relatively slow summer on the CML front. I do not have another appointment until September. It is almost as if everything is on standstill until then. Fortunately, I have felt very good with minimal side effects.

I have decided to start working on fundraising for the Leukemia and Lymphoma Society through and event called Light the Night. This is an event where a team gets together to raise money for this wonderful society that provides excellent support services for patients and families affected by blood cancers. Possibly more importantly, they invest in research for blood cancers such as CML. Because of this organization and other similar societies, research was funded to develop Gleevec. In fact, such progress has been made recently that a second medication called Sprycel has been approved by the FDA for CML. A third medication Tasigna is slated for approval later this year. Without research funding from the LLS, none of this would be possible. Unfortunately, there are many other blood related cancers with fewer treatment options available. More research money is desperately needed.

Needless to say, I want to give back and I need help from you. There are many ways to help. I am putting together a team called Team Gershon to try to raise as much money as possible for the society. If you are interested in joining my team, you are able to walk in the Light the Night March on September 30, 2006. We will be walking down Blackstone Boulevard in Providence, RI holding lit balloons. My hope is that all my team members will try to raise money on their own to support the team and the efforts of the Leukemia and Lymphoma Society. I would love to have a huge team of walkers. All registered walkers will be able to make their own donation web page and the LLS helps you with seeking donations. They make it very simple and fun.

The other way to help is to contribute directly to the team fundraising campaign. I have a website on the Leukemia and Lymphoma's Society page which explains this is more detail and allows you to donate or become a member of Team Gershon. The web address is http://www.active.com/donate/riltn/1817_jgers01

I thank you in advance for helping me with this effort. Any contribution can be helpful.

And the Winner is...

I am reporting on my 3-month blood results which I received yesterday from my oncologist. I feel like I am revealing the winner of American Idol, but really all I am doing is telling you who made it to the quarterfinals. This is a long and slow process and my results are only a glimpse into how well the medication is working.

Without further ado, the results were quite good. Several tests were repeated from when I was initially diagnosed. At diagnosis, my blood cells showed that 100% were called Philadelphia Chromosome Positive (PH+). My 3-month results shows that only 22% of my cells were Ph+. That is a big drop and anything under 35% is generally considered a cytogenetic response. The other test I had was called a PCR (Polymerase Chain Reaction) test. This one measures my RNA and something called the BCR-ABL transcripts (thanks to Anjana for this information). The PCR test is a very sensitive test and my understanding is that it measures the molecular response to the medication. My initial score on this one was 34.56%. Now it is at 10%. That is going in the right direction. A fantastic result would have been a 1-log reduction or 3.45%, but it is not far off. My doctors are much more concerned about the 6 month data. Right now, it is like peeking at the results before the study is complete.

I apologize for the technical jargon and I know that it can be hard to understand. I certainly do not understand much of this. That is why I rely on the CML support groups to help me interpret this information.

Needless to say, my 3-month results are very good and suggest that I am responding well to the Gleevec. At 6 months, these numbers should be even better. By then, I hope to make it to the semifinals.

The Waiting Game

I had my 3 month appointment yesterday at Dana-Farber. It was just a routine visit other than the fact they did additional blood work to see how effective the Gleevec has been over the first course of the treatment. What they are looking for is a cytogenetic or chromosomal response. I have already had a hematological or blood response with my blood work returning to the normal range. These next tests look to see how things have changed in the chromosomes. The final thing that will eventually be examined is the molecular or DNA response. I know this sounds very scientific, which it is. The major implication is to see how well the medication is working at this point and can it eradicate the CML. They don't talk in terms of a cure, but rather molecular remission.

The annoying news is that I have to wait for about 2 weeks to hear the results. I have no other lab work or another appointment until September. At that time, I will have my next bone marrow biopsy. This is certainly something to look forward to. Not to be too graphic, but this means that they will stick a large corkscrew-like needle into my back and take out some bone marrow from my hip bone. When I had this done the first time it was one of the most bizarre sensations I have ever experienced. It was not incredibly painful, but there was intense pressure, especially when they removed the needle. The doctors explained to me that there was a vacuum created by removing the needle which led to the pressure. The worst part of the whole thing was the novacaine shots.

During graduate school, while I was working on my dissertation trying to distract pediatric cancer patients during medical procedures, the nurses and the doctors on the unit asked me to help them out with a patient. A teenage boy was diagnosed with a form of cancer which produced a very large tumor on his lungs. He needed to have the same bone marrow biopsy, except that he could not have novacaine. They were worried that if they did this, his lungs could collapse or he would not be able to breathe. They asked me to use my virtual reality distraction to help this boy out. This was the first time I had witnessed this procedure.

During the procedure, I was trying to focus on the boy and trying to get him to play the virtual reality game. His pain was so intense, however, that he could not focus or even look at the screen. He was screaming and crying. I could hear the doctors trying to work as quickly as possible. I recall this awful sound of bone cracking as they pushed the needle through his hip bone. I also remember seeing them twist the needle, like a corkscrew, to extract the bone marrow. Needless to say, my distraction was not very successful since the pain intensity was too much for him. He managed to get through the procedure, but not because I was able to do much for him.

When I was first told about the bone marrow biopsy in the hospital, I vividly recalled the experience this boy had when I tried to distract him. I knew that it would not be as intense for me with novacaine, but nonetheless it was still an ordeal. Now I have three months reprieve before having to do it again.

A Rose is a Rose

I have been writing fewer updates since there has been little to report. Of course that is a good thing, but it just intensifies the waiting game. Next month, I will have my first blood test to determine whether I am having a cytogenetic response to the Gleevec.

In the meantime, I was thrown for a bit of loop over the past couple of days. My side effects have now been minimal to nonexistant. Two days ago, I became really tired in the morning and took a 2-hour nap. I am not a napper and throughout this process, I have never felt tired. This was a little worrisome. Was I now getting a new side effect? The other strange development was that I started having a couple of bad leg cramps again. I had not had this side effect in about 6 weeks. I took some tonic water as suggested by my doctor. The next morning, I woke up with intense abdominal problems. I won't go into much detail here although you can use your imagination. It turns out that I caught the stomach bug that my youngest daughter had last week.

I guess when you have CML, you become hypervigilant to any physical symptom you might have. I am now over the bug within 24 hours and back at work. Sometimes a stomach bug is just a stomach bug.

Twelve for Twelve

Several weeks have gone by with little to nothing to report. It is funny how life continues and how cancer can be on the backburner. I received a call this week from the search coordinator of the bone marrow tranplant (BMT) team at Dana-Farber. She let me know that they had found a 24 year-old male whose HLA typing (I need to research more about what this means) matched me on 12 of the 12 items. That was as good as it could get for a BMT donor match. Ironically, this news came a day after I received a $1900 bill for lab tests which I assumed was related to this search. Cancer is expensive undertaking. She told me that they will do some further health screening to ensure that this donor is healthy. In the meantime, they will continue the search to have a backup.

This "insurance" of a donor gave me some mixed emotions. I was certainly happy and relieved to have match, but the more I learn about BMT, the more scared I am to have to ever have one. If all goes well with the medication, this whole search process could be a moot point. Also, with all the medications on the horizon and the current research trends for CML, it is quite possible that a medication that cures CML may be out sooner rather than later. In the meantime, I need to give Gleevec a chance to work its magic.

I have also been keeping myself busy corresponding with numerous people who have been affected directly or indirectly by CML. There is a vast community that is quite supportive of each other and I have been impressed and reassured by my correspondences. I have even been on the other end, despite my recent diagnosis, of giving advice to someone who was just diagnosed. In two months, I have developed an expertise in CML. My wife and I were just talking about how we couldn't believe it has only been 2 months.

I wanted to recommend a book to people that I am almost finished with. I have been reading Erin Zammett's My (So-Called) Normal Life. She is an editor with Glamour magazine who was diagnosed with CML at age 23. She writes in a very matter-of-fact manner about her experiences with this disease both in a column for Glamour as well as in her book. You can read her diary at the LLS website or at Glamour magazine. I have found this to be extremely useful information, especially for someone who is newly diagnosed. I believe her book is coming out in paperback next month.

Later this week, I am back at Dana-Farber for my monthly checkup. I am not expecting any big news at this visit, but it is always a bit of an ordeal when I take a trip up there with my wife. My youngest daughter will be there as well. The waiting room at the outpatient clinic is a hard place to be. I always feel a little strange since I have my hair (well most of it anyway) and I am not wearing a mask to keep out the germs. In some ways, I feel out of place like I am in the wrong building altogether. Despite this strange sensation, it is a wonderful hospital and I am very pleased with my treatment and team of people who help me there.

All Quiet on the Eastern Front

I have not posted an update for a couple of weeks since not much has changed. I have learned that much of the treatment is a waiting game and I really won't know any definitive answers until my 6 month check-up in September. At that time, I will have a bone marrow biopsy which will help determine if the Gleevec is working on a molecular level. I continue to have weekly blood counts and the numbers seem to have stabilized. My side effects have been quite minimal. I am down to about 15 minutes of mild nausea in the morning. The muscle cramps have gone away for now.

In terms of other updates, the transplant team has made progress in their search. An initial search yielded 46 potential unrelated bone marrow donor matchs. The next step is to test these people again and check their health. Currently, there are 3 people being tested. This could take some time to hear back.

I contacted the Rhode Island Blood Center to find out more information about gettting on the bone marrow registry. They told me it is a very simple process which essentially involves giving some blood and filling out some health form. I was told that in Rhode Island insurance will cover this, and if not, there is apparently a charitable donation that picks up any noncovered fees. Anyone can walk in to one of the centers or to a blood drive to donate. Here is the information about locations Rhode Island Blood Center. For people outside of Rhode Island, you can go to the National Marrow Donor Program's website to find donation centers near you. The guidelines are typically that you must be between 18 and 60 and in decent health. You also have to be willing to donate your marrow to anyone who might need it.

I continue to feel quite good and it is somewhat amazing how life continues on. I don't have any doctor's appointments for a few weeks. Life is as normal as it can be for now. Let's hope it stays that way. I am very comforted by all the messages of support I receive from people.

The Eyes Have It

I just came from an appointment with my opthalmologist. This is the person who first suggested that I might have Leukemia after he found retinal hemorraging in my eyes. When he looked at my retinas today, the bleeding had cleared up considerably, but was still present. He expects that this will go away in time. In the meantime, my vision has been much better, especially in terms of light sensitivity. I continue to feel good with minimal side effects.

The other major change has been my involvement with the online world of CML. There are many communities on the internet and each diagnosis has its own message boards and discussion groups. I have been very impressed with the boards I have read. I posted a link to this blog on one of the sites and received some great messages of support from people who I have never met before. I have also received many messages of support from friends and family who have read this blog. That really lifts my spirits a lot.

I received an email from a mom of a CML patient who was diagnosed the same week I was. Her blog is very insightful from the mother's perspective. I put a link on my site since I found her writing very profound. The site is Living with CML.

On a more technical note, some people have asked me how they get updates of this blog. I put a couple of links on the page. You can add it to a Google Home Page and it is like a newsreader. If you follow the Google button on the side, it will take you through the process. Also, there is a site feed link if you use a newsreader program. Essentially, the site can be an RSS feed, just like adding any content you might already check regularly. I really like the way the Google Homepage works for this purpose.

A pretty good week

I have now been taking Gleevec for about a month. Besides a little mild nausea and some awful muscle cramps, things seem to be going well. I went to Dana-Farber this week for a check-up with my oncologist. My blood count stayed about the same as last week with my white blood count now slightly below normal. There was some concern about it dropping too much (below 1000) in which case I would have to come off the Gleevec for a little. So far, it appears as though the counts may have stabilized.

We spent time talking about some of the original tests that confirmed my diagnosis and questions I had based on discussing CML with others and reading bulleting boards about CML. It turns out I am in the chronic phase of the disease. This is essentially the first phase when people often do not have other symptoms. The next two phases are called acute and blast. I also wanted to see what my percentage of leukemic cells were. I was told that they were 100% at the time of these tests. My doctor said the goal was to have them at around 35% at 6 months. That would help us determine whether the Gleevec was making the cytogenetic changes it is supposed to.

At this point, it is a waiting game. I continue to take my medication, have weekly blood work, and monthly check-ups. I have also been working with the transplant team to find potential donorfor bone marrow if I should ever need this procedure. I found out that this process can cost between $5000 up to $100,000 since any potential match needs extensive screening to make sure the donor is healthy. Fortunately, the charitable organizations that so many people give money to are helping with these costs.

I am quickly becoming an expert in this disease. There is an incredible amount of information to learn. If anyone is interested in learning more, the Leukemia and Lymphoma Society (www.lls.org) has free courses online to learn about CML and many other blood diseases. I also check the daily blogs of CML Hope (cmlhope.com) which provides the latest scientific and news stories as well as patient experiences with CML.

A lot of people have been asking me about becoming bone marrow donors. This is a relatively simple process that involves a blood test. Essentially, it is a matter of finding a blood donation center near you. Here is a link with some information from the Bone Marrow Foundation (http://www.bonemarrow.org/index.cfm?action=test&area=13). What is nice about these registries is that you can become potential donors for anyone needing a bone marrow transplant.

No match

I found out today from the transplant nurse that my brother's bone marrow is not a match for my own. I have mixed feelings about this. I am somewhat disappointed that he does not match since it would have been easier if I ever needed a transplant. At the same time, I feel like everyone is jumping the gun about doing a transplant in the first place. We are not sure if the Gleevec is working and the risks of a transplant are quite high. The nurse let me know that the next step was to look at the registries for a match.

I also spoke to a genteleman last night who was a volunteer from the Leukemia and Lymphoma Society. They have a nice program called first connections where they put you in touch with someone close to your age who has the same diagnosis. I spoke to this person last night and it was great to hear from someone who has been through this process. He has been dealing with this for 6 years and takes Gleevec. He is not having symptoms of CML currently.

The impact that this diagnosis has had on my life has been astounding. At times, I forget that I have CML. At other times, it is all I can think about.

Gleevec

I started taking Gleevec (www.gleevec.com)on March 17, 2006. This medication has been called a wonder drug since it has changed the way CML is treated. Prior to its approval in about 2001, there were few options for CML treatment. The primary option was a bone marrow transplant which in the long-term could potentially cure CML. In the short-term, however, there are severe risks during the procedure itself. Other medications that were used had significant side effects were not as successful as Gleevec.

Based on my readings about Gleevec, it is really an incredible medication. As one of my doctors suggested, it is the poster child for the way we target treating some diseases in the future. What makes Gleevec so different is the fact that it is supposed to produce chromosomal changes to reverse some of the effects of CML. In addition, the side effects are fairly minimal compared to many chemotherapy medications.

So far, after about 3 weeks, I have had a few side effects. Initially, I had nausea for about an hour after taking the medication. That has slowly gone away. The other side effect I have noticed is muscle cramps, particularly at night. In my left foot, it almost feels like someone has put a vice around my foot. This does not last too long, but can be very painful. Those have really been the only side effects I have experienced so far.

The Gleevec has lowered my blood count into the normal range within 2 weeks. The doctors are monitoring my white blood count to make sure it does not go too low too quickly. I will have a bone marrow biopsy at 6 months to determine whether the chromosomal changes have started. That seems like an eternity to wait, but what else can you do.

Quite a month

March 2006 will not go down as my favorite month on record. On March 3, 2006, after coming home from work and bringing home Chinese food for the family, I received that dreaded phone call. My wife let me know that the doctor had called with the results of my blood work and left his cell phone. I knew this could not be good news. He told me that my blood work showed that my white blood count was very high. I might have leukemia and he suggested I go to the hospital. The crazy thing about this situation was that I had very few symptoms other than some vision problems. I never felt ill. As I left to go to the hospital, I commented to my wife that I did not even have a chance to enjoy my wonton soup.

Needless to say, we were all freaking out. My parents came over to watch our children while my wife and my father went to the emergency room. I knew things were serious, but I was able to skip the whole waiting process in the ER and go right to a room. They put a mask over me to protect me from any infection. This was my first stigmatizing experience. Once I was in an ER room, the doctors ordered a lot of blood work and I eventually met with the oncology team that was on call that night.

Several ironies should be pointed out before I continue. First, the hospital where I was at also happens to be where I teach a class at Brown Medical School. This time, however, I was not the doctor interviewing the patient, but rather in this uncomfortable role of a sick person. The class I teach is to help medical students learn about bedside manners. I was very impressed by the demeanor and treatment I received by the oncology team. The other irony in this situation is that I was a little too familiar with leukemia. For my dissertation in graduate school, I worked on a pediatric oncology unit, primarily with leukemia patients. Knowing some information is good. Knowing too much is not always so good.

After my bloodwork came back, the doctors told me that indeed I had some form of leukemia and now they needed to confirm which kind, the chronic or the acute version. The course of treatment would be quite different for each so making this determination would be crucial. Their suspicions were that I had the chronic version or CML. I was told that the treatment would be substantially different. With AML or the acute version, I would be in the hospital for the next month. For CML, a new "wonder drug" called Gleevec had been introduced about 5 years ago that had changed the way CML patients recieve treatment. Prior to 2001, the primary option was a bone marrow transplant. This medication, however, has been so effective in reducing and/or eliminating symptoms that the protocols had changed. The best part was that this medication had few side effects and was taken in pill form at home.

At this point my mindet shifted and I starting praying for CML. How weird is that? Anway, after waiting for a few days to get test results back from a bone marrow biopsy ( I will save that discussion for another post), I was lucky enough to have the CML diagnosis confirmed. In fact, my doctors presented it in such a way that we were celebrating that I now had CML. I was discharged from the hospital that day. Later that week I went to the Dana-Farber Cancer Insitute for a second opinion and to find out about treatment options.

On March 3, 2006, my life changed forever. Finding out news like this can either make or break a person. While I am still in the early stages of this process and still trying to comprehend what this diagnosis means for me and my family, I am cautiously optomistic as well. In some ways it has kicked me in the ass, but in another way, it is forcing me to live life to the fullest. Without sounding too cliche, I am thankful for every moment I have. As I sat this morning feeding my daughter and staring into her eyes, I realized how lucky I was and that CML was not going to keep me from seeing my children grow up. As one of my doctors said, you should be planning on going to your grandchildren's weddings. I think that is a good outlook for now.