Saturday, November 17, 2007
This consultation with Dr. Druker was initially set up over the summer. At that time, my PCR values started turning slightly in the wrong direction. This happened on two separate readings. My doctor at Dana-Farber became a little concerned and decided to take a few precautionary measures. First, he wanted to increase my dose of Gleevec from 400mg to 800mg. Second, he ordered a test to see if my body had started rejecting the Gleevec and some of my cells started mutating.
The PCR value that was taken the day before I started the increased dose ended up being the lowest I had ever had at that point, suggesting that the increased readings were possibly false. On the 800 mg, my PCR level jumped way down to a 3 log reduction, further indicating that my body is still responding well to Gleevec and that the increased dose helped move things along faster. This was all encouraging news.
In the meantime, we had scheduled the appointment with Dr. Druker and made flights to go to Portland. Going out here, I thought it would be a little anticlimactic. Instead of a list of questions about alternative treatment options, I really had no new questions to ask him.
We met with Dr. Druker two days ago. OHSU is a beautiful facility on the top of a hill overlooking Portland. When we walked into the clinic, it was a stark contrast to what I am used to at Dana-Farber. We were the only ones in the waiting room. At Dana-Farber, we are lucky to get a seat.
First, we met with his physicians assistant, Carolyn, who was so pleasant and upbeat. She spent a lot of time with me and my family obtaining symptom information for Dr. Druker. She also spent time answering our questions. We never once felt rushed. She was great. Dr. Druker came in a little while later to talk about my history and examine my current readings and treatment. He had a commanding and gentle presence.
Most scientists that I have encountered who are at the top of their field tend to be less than ideal with patient interactions. It is almost as if they feel that this is a necessary evil of their job. Perhaps I am more aware of this because I teach medical students about interviewing skills and good bedside manners. Dr. Druker could not have been more pleasant and professional.
He quickly glanced through my file and wondered about some specific information that he had not obtained. He is a numbers guy and likes the details. As he examined my PCR values, he went through a thorough explanation of how statistically, my numbers had probably not gone up. Because of the sensitivity of the PCR test, the is wide error margin in the values and my numbers were all within that range. He was pleased to see, however, that the 800 mg had bumped my PCR values way down in a significant manner.
He spent so much time with us drawing graphs about the progression and treatment of the disease. He talked about his philosophies about long-term treatment and the possibility of changing the treatment from maintenance to a cure at some point in the future. He answered all of our questions and spent a long time with us. Overall, we were at the clinic for more than 3 hours.
My wife and my parents discussed the appointment and agreed that we were so comfortable with Dr. Druker and Carolyn that we wanted them to be a part of my treatment team. This means going out to Portland every six months. The good news about that is that there is now a direct flight from Boston. I will be returning in May for a follow-up visit.
Needless to say, this visit was much more than I had expected. I understand now why so many people with CML come out to OHSU. As Dr. Druker said, "I only treat patients with CML." If you can go to the world expert, wouldn't you?
I am so grateful to my wife and parents for accompanying me on this long and emotional journey. I know that CML does not just affect me, but everyone around me, especially my family. I think it might be a little harder on them than me. It is too easy to forget that sometimes and I appreciate all of their support and love during this process.
Wednesday, October 17, 2007
Needless to say, this was a huge relief to know that the medication is working and my treatment is not only back on track, but moving at full speed ahead. Due to the positive results, I do not have to return for another visit for 3 months.
Thursday, October 04, 2007
Last Saturday, October 29, 2007, was the Providence Light the Night Walk. It was a beautiful fall night and Team Gershon was well represented. Our team proudly walked down Blackstone Boulevard holding red balloons and a white one for me. Here are some pictures of this great event.
Although our fundraising totals are not all tallied, we were at about $17000 going into the event. I am not sure how much we brought in on the day of the walk. I should know within the next couple of weeks.
I sincerely thank those of you who participated in this event with me and/or made a donation to the Leukemia and Lymphoma Society in my honor. I really love the support from family and friends.
I realize that I never reported about my most recent visit with my oncologist. About a month ago, I returned to Dana-Farber to check the lab results after increasing my Gleevec to 800mg. My last PCR test prior to starting the increased dose was 0.2%, my lowest reading. This reading at 800mg was also 0.2%. A little confusing indeed. Although this is good news because my levels did not go up, they did not go down either. I was anticipating some movement downward with the increased dose, but perhaps 4 weeks is not enough to see this change in my peripheral blood.
On Saturday, I am going for another blood test and will receive the results in about 2 weeks. I am feeling great and the initial side effects I had on the increased dose have dissipated.
In a little over a month, I will be heading out to Oregon for my appointment with Dr. Druker at Oregon Health Sciences University. I am very excited to meet with him and ask him some questions. If anyone has questions they would like me to ask him, please forward them to me.
Anyway, thanks again for the great fundraising effort and support.
Saturday, September 15, 2007
I wanted to provide everyone with the details of the event. It is scheduled for Saturday, September 29th at Lippitt Park at the end of Blackstone Boulevard in Providence. The walk will be 2.5 miles up and down the boulevard. Registration and check in starts at 5:00. The walk starts at 7. Last year there was a long line to pick up balloons so I would suggest doing this early.
There are activities and entertainment. You can also drop off any money, pick up shirts and eat snacks. We will provide refreshments for our team. I also need to order Team Gershon shirts. If you are planning to walk, please send me an email firstname.lastname@example.org so I can order the appropriate number of shirts. Also please register online ahead of time if you are planning to walk since the lines can become very long. Last year there were several thousand walkers. You can go to my Light the Night site. Click on Register to Walk. On the search page, select Team Name and type Team Gershon.
I am very excited to see everyone and the generosity has been wonderful. If you have donations, you can bring them on the night of the walk, send them to me, or send them in to the Leukemia and Lymphoma Society directly. I will see everyone on the 29th.
Wednesday, September 05, 2007
I went in today, assuming that things would not have changed all that much. Prior to increasing the dosage a month ago, I had a blood draw to get a PCR level before the change. I received the results of that test today.
Here is a pattern for my tests so far, for those following at home, especially if you like statistics:
Clearly, the pattern was that things were all going well until this summer when the numbers started to go up. This might have been an anomaly, but two tests in a row were more concerning. The strangest part of this whole thing is that my numbers started going down again, even before I increased the medication. I will not know my newest reading for a couple of weeks, but it certainly puts a new perspective on these tests.
I wonder, as cancer patients, whether we overly focus on these statistics and numbers. I recognize that these numbers represent how the treatment is working or the disease progressing, but they may also increase the stress level as well.
Over the summer, my stress level was probably the highest it had ever been since my father and I were opening a new business. Is there any correlation between the change in the numbers and my level of stress? I asked this very question to my oncologist. He shrugged his shoulders. As someone who has examined the role of stress and anxiety on the body, my guess is that it can certainly have an impact. If we look at studies that examine the release of cortisol, (the stress hormone) and what it can do to the body, it would not surprise me to see the potential affect.
What does this suggest? Well, my new goal is to find as many ways as possible to de-stress. Not only is this good for my body, but probably my mental health as well.
After all that good news, I still had to have a bone marrow biopsy. Another two weeks until results are in so the waiting game starts now. For now, I am going to relax a little and enjoy this good news.
Wednesday, August 29, 2007
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.
Thursday, August 09, 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.
When: September 29, 2007, 7:00 pm.
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.
Wednesday, August 08, 2007
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.
Sunday, June 03, 2007
I recently returned from a wonderful vacation in Italy. It was our tenth anniversary for my wife and I so we decided to treat ourselves to a special trip. We visited Rome, Florence, and Venice as well as many small towns along the way. Here we are on a gondola in Venice. It was a wonderful trip and I saw and learned quite a bit, especially about Italian culture.
I was impressed about how important relaxation is in Italy. They take breaks from 1-3 to have a long lunch and nap. Dinner tends to be later than I am used to and lasts much longer. People seem to be much less in a rush than we are in America. It seemed to me that Italians savor the moment, rather than rushing to get to something accomplished. I thought this was a healthy perspective on life. It certainly reduces the stress level. The only thing that really surprised me was the amount of people who were smoking. I guess they don't have the same warning labels as us or are less concerned about cancer.
I returned to the US and resumed my life, but tried to maintain that Italian sentiment of relaxation. Today I went for a blood test prior to my next 3-month check-up in a few weeks. Since it was a Sunday, the normal blood lab in the clinic was not open. Instead I went to the infusion room on the 10th floor at Dana-Farber. I had not been to this unit before. An infusion room is where people who need to receive chemotherapy go to get their medication. Since some of the medications need to be given slowly over a several hours, people sit there for long stretches of time.
On this particular day, the unit was full of people connected to tubes of medication dripping slowly. Here I was in the middle of these people only needing a routine blood test. I was thinking about how toxic the chemotherapy agents can be. While they may be effective at killing off cancerous cells, they also kill off many other things, leading to other complications.
I am very lucky that I have not had to go through this process at all and that the medication I take is targeted to only attack leukemic cells and nothing else. I felt somewhat guilty about how easy my treatment has been relative to these poor people who were sitting in this building on a Sunday morning. I was able to leave after my blood test while they had to sit and receive their treatments.
Even more evidence why we should live for today!
Saturday, April 21, 2007
Zavie wrote me yesterday to let me know that I was member #1055 in Zavie's Zero Club. I was excited to reach this level. I remember writing to him telling him that I hoped to join his club soon.
The CML community is strong and supportive. If you have read my comments, you have also seen comments from Annie who maintains a blog called Living with CML. Annie's son Stephen was diagnosed the same week as me and he has also reached the same milestones.
The good news is that Gleevec works and works well. I am very lucky to not only have this treatment, but to have the social and emotional support to fight this battle.
Wednesday, April 11, 2007
The results have just come back and everything seems to be on track. I continue to be in hematological remission and cytogenetic remission. In terms of molecular remission, I have had a 2 log reduction on my PCR test. I was originally at 30% and have dropped to .3%. This is great news at 12 months. The doctors are hoping to have it drop another log (.03 for those of you who don't remember your high school math).
Despite the anxiety of waiting for test results, I have not been particularly anxious about the results. I have been feeling good physically so I was anticipating a positive response. Perhaps I am too distracted by my non-cancer life that CML moves to the back burner. It is nice not to dwell on this issue.
I also just received notice about next fall's Light the Night Event. I am going to start working on this fundraiser soon so stay tuned.
Saturday, March 03, 2007
Today is the day. It is one year since I was diagnosed. I remember the day well. I had been at work all day and stopped on the way home to pick up Chinese food for dinner. As I walked in the door, my wife said that the ophthalmologist who I saw that week had called and told me to call him as soon as I got in. I was expecting bad news, but not what he told me. Needless to say, he said I had leukemia and told me to go to the hospital. I was admitted that night and spent the next five days trying to confirm which type of leukemia.
I am not sure if this is a day to celebrate or to mourn. I certainly feel a little odd. I was supposed to be in New York celebrating my cousin's Bat Mitzvah. Instead, I am home because my oldest daughter has strep throat and is feeling very sick.
Anyway, one year has passed quickly and my adventure continues. Thanks to all of the people who have supported me during the past year and made this situation as easy to deal with as possible. Let's hope that this year brings complete remission and CML might be something I can start thinking about in the past tense. Not that it ever goes away, but at least if it is fully in check, I will hopefully think about it even less.
Here is a recent picture of my daughters and nephew since some of you have asked for a recent picture.
Thursday, March 01, 2007
Let me start by apologizing for not writing for some time. I have received complaints (rather suggestions) to update my blog. It has been almost 2 months since I have written. There are a number of reasons. Not much has happened with me in terms of CML. I have not had a doctor's appointment or blood work since December. I am going in later this month for my 3 month check-up and the ever so exciting bone marrow biopsy. The other thing that will happen in 2 days is my Cancerversary (to borrow a phrase from Erin Zammett Ruddy). March 3rd will be the one year anniversary since I was diagnosed. That is kind of amazing to me that the time has gone by so quickly. The good news is that I continue to feel very healthy and as far as I can tell, the CML seems to be in control. After my last check-up, my counts were all excellent and I was ahead of schedule in terms of where the doctors wanted me to be at this point (then again, I have always been an early bird).
I find it interesting that I have not been thinking about CML very much at all. Whereas last year at this time, it was dominating my life, it has taken a back seat to other, potentially more important things. That is not to say I forget about having CML, I just don't dwell on it. I used to spend a lot of time reading the CML discussion groups. I am doing that less and less. Perhaps it is denial, but I will be reminded again later this month during my trip to Dana-Farber.
So what have I been doing to occupy my time. The picture above should give you a clue. I just spent an incredible week with my family (wife and kids, brother, sister-in law and nephew, and parents) in beautiful Colorado. Some of you may not know this, but I was actually born in Colorado, so I guess you could say I was a native.
The picture is of Beaver Creek where we stayed and skied for a week. It was so sunny and warm that I came home with a sunburn. A big thank you to the Horvitz family for letting us stay with them and enjoy this little piece of heaven. We were not that far anyway, since we were 10,000 feet up. It took a little while to get adjusted to the altitude and the time difference, but it was worth it. I have found that taking time for myself and my family is essential. That is good advice no matter what you are dealing with.
Tuesday, January 02, 2007
Fortunately, CML has become less of an issue everyday. At my most recent checkup after Christmas, my doctors were very pleased with my progress and felt that I was ahead of where they were hoping I would be at this point. Technically, I have had a complete hematological and cytogenetic remission. I am working on the final remission which is molecular. I am almost there.
Needless to say, I am thrilled with the news and the progress that Gleevec has allowed me to attain. Interestingly, the effects I am now feeling most are related to coping with the diagnosis. I think I have had a bit of a delayed reaction to CML. Initially, I was so focused on fighting this disease, learning about it, and raising money for research, that I did not focus on what having cancer has meant.
Last week I went to Dana-Farber for a checkup. I took the train to the hospital for the first time and had a lot of time to think about cancer and the hospital. I find that before going to the hospital, I become very irritable. I am not nervous about my appointments, because I know I am doing well. Instead, I feel angry that I have to deal with any of this nonsense. I love Dana-Farber, but when I sit in the waiting room, I think to myself, why should I have to be here. I am sure everyone around me in the waiting room is having the same thought.
Perhaps it was distraction or denial before, but I must now face the fact that I have cancer and will have to live with it for the rest of my life. It reminds me of the email I received when I first signed up for a CML discussion group. "Welcome to the club that nobody want to belong to." I think they lifted that line from Gilda Radner, but it is certainly appropriate.
Despite all the emotional impact CML has had over the past year, I have certainly learned a lot about myself, my family, friends, and cancer. My hope for this New Year is that it will be a lot less stressful with no major bad news to try to cope with. May I also reach molecular remission so cancer take a back-burner to more important things like living and enjoying life.