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.