Friday, April 14, 2006

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.

4 comments:

Anonymous said...

Thank you my child for putting your thoughts down. We appreciate knowing them and realize it is sometimes too much to say it all.

Lisa Schreier said...

Hi Jon-

I just wanted to let you know that I have been thinking about you and hope that everything continues to go smoothly with the Gleevac.

I hope to visit you and Melissa soon.

Love,
Lisa

Beth & Jeff Kasten said...

Dear Jon,

We just had an opportunity to thoroughly read your thoughtful words. Thank you for your strength and courage. We cannot feel your pain nor can we live in your shoes but please know that we all love and support you. As you continue to express your weekly thoughts, please know that many of us are comforted by your honesty and hope. We pray for you every day.
Lots of love,
Beth and Jeff

Jesse Koslow said...

Jonathan,

It's easy to lose track of what is important to me in these busy times (you have to make it while you can =)). I want you to know that I admire your tenacity and love you, well, like a cousin. I don't think the CML has a chance against you because you know too much about it! What also helps is the support of your beautiful family, your extended family and friends. Thank you for the information, I wasn't sure what you were up against, but now it is a little clearer. Please know that you are in my thoughts and I wish you the best through this trying time.

Love,

Your cousin,
Jesse