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.