Wednesday, August 08, 2007

A Minor Glitch

It has been a nice, but busy summer for myself and my family. My father and I opened a new private practice in July and have been working hard to get this new business up and running. As such, I have had little time to think about CML, let alone write about it. That does not mean that nothing has happened in regards to treatment. In fact, quite a bit has happened.

In late June, I went for my three month appointment and the doctor who was assisting my primary doctor came into the room asking me if anyone had spoken to me about my test results. Immediately, I knew this was not a good sign. Of course, no one had spoken with me. He told me my PCR test went up for the first time. It has jumped slightly from the previous count erasing my 2-log reduction that I had previously achieved. It was not exactly clear what this meant. It could have been a small spike or an abnormal reading. It could also have meant that the Gleevec was no longer working and I might need another treatment option. My doctors asked me to take another blood test in a month and return in 6 weeks.

This was a bit of a shock for me. Until this point, my treatment had gone extraordinarily well. I has not expected any bad news whatsoever. I was angry at myself for getting almost too cocky about how easy this treatment was.

I remained upset for that day, but made a conscious decision that I would not dwell on this information. What good would it do me and who knows whether it was anything to be concerned about anyway.

A couple of weeks ago, prior to a party, I stopped at Dana-Farber for some blood work. This morning I returned for the results. My oncologist told me that the results had been the same as the last test, although it did go down a minuscule amount. He was somewhat concerned, but decided that he wanted to increase the dosage of my Gleevec to 800mg from 400mg. He also wanted me to have weekly blood counts to make sure my regular blood work is not affected by the increased dosage. The other exciting news is that I get to return for a check up in 1 month and also get to have a bone marrow biopsy. Yippee!

Obviously this was some disappointing news, but hopefully the increased dose will take care of the problem. If not, there are other treatment options available.

At the same time that all of this is going on, I am about to start soliciting again for the Light the Night Campaign for the Leukemia and Lymphoma Society. I have been a little slower this year about this process for two reasons. First, I have been so busy with the new business. Second, I was more concerned about my own health for the time being. This campaign, however, is extremely important to me and I hope that any friends and family that want to walk or participate with me will please join me. I will write more about this in my next entry which should be posted soon.

4 comments:

Anonymous said...

This is a disease that seems to be right on the verge of cure or lifetime management and you will be one of the beneficiaries of all the work that is going into it. Gleevec is the first of many drugs - even by the same company - that we hope will drive this tough disease into the company of many others - chronic but manageable. We're optimistic and look forward to seeing you and your family soon. Love, Fran and David

Living With Cml said...

Sending hopeful and healthy thoughts and vibes. Keep smiling.
love and light
Annie
Steven's mom

Deb Rhatigan said...

Jon:

Just saw your blog...sorry to hear the news, but keep strong as I know you will. I got some upsetting news myself, more treatment and another surgery in my future.

I was angry too, not so much as myself (for being too cocky) but more at the situation. Doing better now as it sounds like you are...

BTW, you amaze me.

lbailes said...

I've been thinking about you a lot since we spoke a couple of days ago and you told me this news. Let me know when you want to get together for coffee soon. We all need a CML buddy every once in a while.