Over the past few weeks, there have been a number of changes. First, I have been on 800 mg of Gleevec instead of 400mg. This is to examine whether an increase in the dosage will help push my PCR level down. If not, it might suggest that I have become resistant to Gleevec and may need to try another medication. I go back to Dana-Farber next week for blood work and a bone marrow biopsy.
I have been having weekly blood tests on the 800 mg to look at my blood in general. Specifically, the fear is that too much of the Gleevec can make my white and red blood counts drop too much which is not safe either. So far, they have dropped a little below the normal range, but not enough to concern my oncologist. I had more blood drawn this morning so we shall see what happens.
In the meantime, I have decided to visit Dr. Druker at Oregon Health Sciences University in Portland. Dr. Druker is known as the preeminent CML doctor and helped develop the medication I am currently taking. Following the advise of some fellow CML buddies (Annie (Stephen's mom) and Lori (my fellow RI CMLer)), I will see Dr. Druker on November 15, 2007. My wife and my parents will be joining me for a trip to Oregon. I am hoping this consultation can assuage some of the fears with the recent non-responsiveness to the medication. If I need to make a change, he can help with this decision as well. For those who have met with him, they have said that this is a great experience.
In the scientific community, my experience has been that the more well-known a researcher is, the poorer their clinical skills tend to be. This is particularly true in their interactions with patients. I may be too aware of bedside manner since I teach this at Brown Medical School. From what I can gather, Dr. Druker is able to balance these skills well. I am looking forward to meeting with him.
In other news, our Light the Night Campaign is in full swing. Although we are a little later in getting started, the donations are starting to come in. So far we have raised $4411. If you would like to walk with Team Gershon or make a donation, please visit my Light the Night page. If you want to register to walk, you click the button on the top left. The event is scheduled for September 29th in Providence.
Wednesday, August 29, 2007
Thursday, August 09, 2007
Light The Night 2007
Dear Family and Friends,
As many of you know, it has been over a year since I was diagnosed with Chronic Myelogenous Leukemia (CML). I have been fortunate to benefit from the groundbreaking research that was supported by the Leukemia and Lymphoma Society. Not everyone with blood cancer is so lucky, and more money is needed to help fund research to cure these diseases and to support the patients and families who are living with these diagnoses.
Last year, our Light The Night team called Team Gershon raised $23,615! We were the top fundraising team in
In our second year of fundraising, I have again organized a team called, Team Gershon. I am inviting you to join this team and help me raise funds or to help contribute to the team. You can also participate by making a donation yourself or volunteering at the event on September 29th in
Light The Night® Walk. This is an opportunity for us to do something good in our community. It is an opportunity for you to help fight cancer by:
• Joining the Light the Night team
• Making a personal contribution
• Raising funds for the Society to use for critical cancer research and services for patients and their Families
Light The Night is an evening walk to celebrate and commemorate the lives of people touched by cancer. Walkers hold illuminated balloons—white for survivors, red for supporters—and light the night with hope. The Walk culminates in a community celebration with music, refreshments and entertainment—where friends, family members, neighbors, co-workers and others come together to demonstrate their support for cancer patients.
Team members raise funds by encouraging others to contribute. Funds will be used for research to find cures for blood cancers—leukemia, lymphoma, and myeloma—and improve the quality of life of patients and their families.
As Team Captain, I encourage you to become involved in this worthwhile endeavor, and to give yourself the experience of helping others. You will be glad you joined us. You can learn more about this event online at www.lightthenight.org or go to my direct link and register for the team or donate online. The address is http://www.active.com/donate/riltn/2033_jgers01. You are also invited to hear more about my story on my blog at http://jongershon.blogspot.com.
Walk Information:
When: September 29, 2007, 7:00 pm.
Where:
Who: Anyone who wants to fight cancer is invited to join. No particular level of fitness is required.
How: We encourage every walker to beat the national average amount ($100) by setting their individual goal to at least $150. I’ll give you information on how to go about it. Our team goal is to try to match or exceed last year’s donations.
Why: The need for cures is critical: Every five minutes, someone in this country is diagnosed with blood cancer. Every ten minutes, someone dies. Leukemia is the leading cause of cancer death among children and young adults under the age 20.
Fundraising Rewards: All participants raising $100 or more will receive an illuminated balloon and a T-shirt to wear during the Walk. Walkers raising $300, $500, $1,000, $2,500 or more can receive other exciting gifts. Visit www.lightthenight.org for more gift information. Please join us for this very special evening. Be a part of our team. You’ll enjoy yourself. And you’ll make an important difference in the lives of others.
Light The Night and brighten the future for millions touched by cancer.
Thanks,
Jon Gershon
http://www.active.com/donate/riltn/2033_jgers01
http://jongershon.blogspot.com
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.
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.
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