3-Logs!

I just returned from a visit with my oncologist at Dana-Farber. After being on the 800 mg of Gleevec for about 8 weeks now, my PCR level dropped to 0.02%. This is the lowest it has ever been and suggests that, indeed, the higher dose is working. This reading is more than a 3-log reduction from my initial value of 34.5%. Amongst the discussion boards and scientific literature on CML, the 3-log reduction is considered a positive response and one of the last stages of remission. In other words, I have almost reached the last stage of remission or Molecular Remission. This means that my DNA has changed to stop producing leukemic cells. I joke that it is kind of like the changes that happen to superheros. To be considered in full remission, this level should be less than 0.01. That would be considered PCR undetectable. As you can see, I am not that far away.

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.

Yippee!!!

Light the Night Wrapup 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.

Light the Night 2007

I wanted to update everyone about our team efforts for Light the Night which is quickly approaching. As of this morning, Team Gershon has raised $12,870. Since we have already raised over $10,000 we will again have our own tent at the event.

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 jgers01@gmail.com 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.

The Numbers Game

I just returned from my checkup at Dana-Farber this morning. I was started on 800 mg of Gleevec 4 weeks ago because my PCR test had gone up instead of down over the summer. My doctor became a little concerned and decided he wanted to see me monthly instead of every three months. He also doubled the dose of my medication to see if this would change the direction of this reading.

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:

3/9/06 --34.5%
6/14/06 --10.9%
9/20/06 --1.15%
12/27/06 --0.5%
3/31/07 --0.3%
6/4/07 --0.6%
7/23/07 --0.6%
8/8/07 --0.2%

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.

The Oregon Trail

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.

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 Rhode Island. I was so proud and pleased that my team of 47 walkers and many other contributors were able to support me and the society.

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 Providence, RI. Please follow this link for donation information: http://www.active.com/donate/riltn/2033_jgers01

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: Blackstone Boulevard, Providence, RI

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

jgers01@gmail.com

http://www.active.com/donate/riltn/2033_jgers01

http://jongershon.blogspot.com

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.

A little R & R

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!

#1055

I received an email after my last post from Zavie Miller, a fellow CMLer from Ottawa. He maintains a database of people with CML who have undergone treatment with Gleevec. Zavie wrote to me soon after I was diagnosed as I read the CML discussion boards. He told me about his Zero club. For people who reached a level of zero on a test called PCR, they became members of this club. It essentially indicates that Gleevec is working and you are doing very well with the treatment.

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.

One Year Results

I had my one year checkup a few weeks ago. This included blood work and the ever popular bone marrow biopsy. Interestingly, my primary oncologist performed the biopsy this time and I hardly felt anything.

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.

Cancerversary

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.

A Little Piece of Heaven

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.

A Year to Remember

Happy New Year! So 2006 was not the greatest year for me and my family. Getting a cancer diagnosis can put a damper on even the brightest moments in a person's life such as having a new baby. On top of that, other events happen in your life that you are forced to deal with no matter what your physical and mental health status might be. This year posed all of these challenges for me and my family.

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.

Not alone

So I am in Chicago at a conference that I usually attend every year. Although the conference is not overly intriguing, I usually go in order to catch up with friends from internship days and to visit a city. On this trip, we were also able to schedule visits with some college friends of mine.

Coming to the conference, I was a little hesitant because most of the people I wanted to see, I had not seen in about 2 years. I am not great about keeping in touch with these folks, but when we get together, it is fantastic. I was apprehensive because as far as I knew none of them knew about my diagnosis. I was dreading the awkwardness of the conversation. I anticipated it would go something like this:

"How have you been?"

"Great."

"What's knew with you?"

"Well, I was diagnosed with leukemia."

Talk about a conversation stopper. I did not want this to be the first thing we talked about, but I did want to tell these people about this important change in my life. It just felt weird that I had this burden of a topic to discuss.

Within an hour of starting the conference, I ran into one of my friends, Deb, I was hoping to see. Here it was, the awkward moment. When I asked her how she was doing, she told me she had a tough year and was diagnosed with colon cancer. I was astounded. Here I was worried about disclosing my own cancer diagnosis, and she was dealing with the same issue. I told her that I too had been diagnosed with cancer this year and we both kind of stared at each other in disbelief. We had both joined a club we did not want to belong to in the first place. She told me about her surgeries and chemotherapy, but that she was also in remission. I was relieved to hear her progress, but felt guilty about how relatively easy my treatment had been in comparison.

While hearing Deb's news was a huge shock for me, it also paved the way for a smoother transition with my other friends who did not know. Since Deb and I are both psychologists dealing with cancer, we both had similar notions. How do we make our experiences helpful to others? I tossed around the idea of doing a book together with her or something to help other younger people who are diagnosed with cancer.

Needless to say, although cancer can make you feel very isolated, sharing this news with Deb made me feel much closer to her. I said to her "isn't it annoying that we are even having this conversation?" Oh well, you play with the hand you are dealt and I hope we can make a royal flush out of this one.

Obladi Oblada

It has been quite a long time since my last post. That is for a good reason. Not much has happened to me in regards to CML. There are many days when I don't think about CML or worry about it at all. It is interesting how CML has taken a back burner in many respects. I almost forgot my medication last week. Fortunately, I use a pill case that does not let me forget.

When I was first diagnosed, I went through a similar thought process that I suspect many people go through when diagnosed with a potentially fatal illness. I wanted to live life to the fullest and focus on what is important in life. I think I try to do this anyway, but in reality that is a hard thing to accomplish. I need to take care of my family and work and that takes a lot of time. My wife and I have been better about scheduling time for ourselves and getting a babysitter more often. We are also planning our 10th anniversary trip to Italy in the spring.

In terms of cancer news, I am doing quite well and just waiting for my next blood test. That will take place right after Christmas as I travel up to Dana-Farber in Boston. I am feeling good and my only side effects from the medication are muscle spasms in my legs and mild nausea in the morning.

I reported on my last blog about how proud I was of our Light the Night Team. As a team, we raised over $23,000 for the Leukemia and Lymphoma Society and we were the highest fundraising team in the state of Rhode Island. I was so impressed by the hard work and dedication of my team members and the generosity of the donors. Having such a wonderful support network makes dealing with this cancer nonsense that much easier. Although I am taking a short break from fundraising, I am starting to brainstorm about other creative ideas other than simply asking for donations. Although that seemed to work quite well, I want to find other ideas. I welcome any suggestions.

In the meantime, I am off to Chicago with my family for a conference and to visit with friends.

Oh What a Night!

Light the Night in Providence, RI took place on Saturday, September 30, 2006. It was an incredible event. I did not realize how many people would be there. There were over 1000 registered walkers and many more who were not registered. A sea of red and white ballons lit up the dark skies down Blackstone Boulevard. It was a moving experience.

I was so impressed with my team. We really rallied together and were able to raise a huge sum of money. Prior to the event, our total was over $21,000. More money came in at the event and over the next couple of days. I am awaiting our final tally from the Leukemia and Lymphoma Society.

It was overwhelming to feel the support of my family, friends, and coworkers who have been with me throughout this process. To see a team of 60 or so members walk in my honor was very humbling. It is hard to put into words the meaning of this support and what these fundraising efforts symbolized to me.

In other news, my six months results came back and they were quite good. My PCR test showed an almost 2 log reduction since I started. This is a complicated statistic, but it means that my numbers are heading in the right directions. A 3 log reduction is expected by 18 months on treatment so I am getting close. Also, my cytogenetics test showed that as opposed to March when my cells were 100% leukemic, they are now only 1%. My doctor told me that anything less than 3% was in the normal range. I have not seen the lab results yet, but this is the information my doctor emailed me. This is all great news indicating that Gleevec is working. All the more reason to give to an organization like the Leukemia and Lymphoma Society. They funded some of the research to help develop this medication.

Six months and counting

Today was an exhausting day, both emotionally and physically. I had my 6-month check-up at Dana-Farber. This was my first appointment in 3 months. It was a little scary to have no blood results for a 3 month period. In addition to blood work, I also needed a bone marrow aspiration and biopsy. (More on this in a little bit.)

I have written before about what it is like to be in the outpatient unit at Dana-Farber. In some ways it is truly awful and in other ways it is amazing. The first thing you notice is how packed the place is. The fact that this many people have to deal with cancer is unbelievable. Then you start to look at the people. Many of them have no hair and are wearing masks and gloves. It is a frightening sight because it makes you think that this could be you if treatment does not go well. I always feel a little out of place and guilty since I have not had to go through any of the same treatments that most of these people have had to endure. I am very lucky with the CML diagnosis and the ease of the treatment so far.

My bloodwork came back with almost all counts within the normal range. This is the hematological response that I had within a month of starting Gleevec. One of my oncologists then did a physical exam and everything was normal. Next was the bone marrow work.

A bone marrow aspiration is an important part of monitoring treatment effectiveness. Although much information can be gained from peripheral blood (regular blood draws), much more can be learned by looking at the marrow. The marrow is where new blood cells form. If they are producing more healthy cells than leukemic cells, that is a good sign. There are a lot of complicated tests and statistics associated with these tests, but I will not have results back for a couple of weeks. I will write more about this topic then.

The bone marrow aspiration and biopsy is an uncomforable and somewhat painful procedure. The worst part for me was the novacaine to numb and area on my hip. As I lied on my stomach, the doctor gave me a number of shots of novacaine and then there was a burning sensation soon afterwards. I think that area of the back is particularly sensitive anyway, so the feeling is worse. I never have problems with giving blood or getting shots, but these hurt.

The next step is removal of the marrow. In order to do this, the doctor puts a rather sizable needle through my hip bone and into the area where the marrow is located. Getting through bone is not so easy and he really has to push and twist to get to the right location. The best way to describe this is to think if using a corkscrew to open a wine bottle. When he does reach the right area, he then removes the marrow by suctioning it out. This is the weirdest feeling because it felt like an intense vacuum. My doctor described it as someone pulling on your leg, but I didn't find it that funny (bad joke). After he removed 2 large vials of the marrow (which looks like red blood), he then needed to biopsy a small piece of bone. This felt like a quick pop. Not too bad.

That was the whole procedure. It only takes about 10-15 minutes. Relatively speaking, it was not the worst pain I have ever experienced, but it was not something I am ever going to look forward to either. Now that the procedure is over, the waiting game begins.

Huis Clos

Sorry for the obscure French reference. Huis Clos is a book by Jean-Paul Sartre that translates to No Exit. This was a book I read in high school. I chose this title because I was thinking that sometimes with CML there is no escape. That is not necessarily a bad thing, but there have been a number of circumstances when CML and/or cancer has come up in unexpected ways. Most of the time I don't think about CML and even forget that I have it, but it has a way of sneaking up on me.

A few weeks ago, I was at a weeklong workshop on the treatment of ADHD. The speaker made numerous references to medication treatment for ADHD and how it is going to target the genetic markers similar to the way cancer treatments, like CML now do. CML was the last thing I was expecting to be thinking about during the workshop.

A couple of times over the last few weeks, I have been referred to as ill or sick. It is funny because I never think of myself as sick or ill. This may be denial, but since I never felt sick, to me CML is a condition that I am working hard to control and not a sickness that is threatening me. This may be a naive view, but I think of CML as a part of my life that I deal with like any other stressor I might encounter. Since it often equated to diabetes treatment as a chronic condition, I don't really see myself as a sick or an ill individual. That is why I kind of struggle when people ask me how I am feeling. I am fine and have never felt sick. It is just a natural question for people to ask when they assume you are sick.

In other CML news, our Light the Night team has raised around $13,000 so far for the Leukemia and Lymphoma Society. I am incredibly impressed and humbled by people's generosity.

Irony

I was just doing an internet search of this blog to see if it would come up in a google search. It did not. Instead, one of my hits was for an article on research I conducted for my dissertation. Here is the link. It shows a picture of me in 2001, 5 years prior to diagnosis working with a leukemia patient. I know I have mentioned the ironies in my diagnosis in the past, but this picture really hit home. I remember working with this boy every time he came in for his treatment. He had a different form of leukemia which required ongoing chemotherapy. He would get so nervous about having the needles inserted, so I would distract him using a virtual reality system during the procedure. It worked so well for him that he would sometimes not realize when the nurses were done. I still use virtual reality, but now I use it to treat people who are afraid to fly, speak in public, or heights.

Sometimes I wonder if there is a reason I have leukemia. Othertimes I think it is just bad luck. Either way, I still have to deal with it. I am lucky to have an easy treatment and great support around me. Hopefully, I will never need distraction like that boy did in my study. Although, I do have a bone marrow biopsy coming up next month. Something to look forward to.

Updates

It has been a while since I last posted. I have been busy working on the Light the Night Fundraising campaign and trying to raise money with Team Gershon. We have a lot of people signed up to participate in the event and we are already raising money. I think in the couple of weeks since we started we have raised about $1500. I am hoping that we can do a lot more, but it is a great start. For more information about the Light the Night event see my previous post.

Last week, a press release linked Gleevec use to heart failure. The articles seemed to imply that using Gleevec increases your chances of heart failure. My poor grandmother was frantic when she saw the information flash by on CNN. I told her I would look into this and find out what I could. I immediately went to my scientific resources. As I was trained to do during graduate school, I never rely on the press to report on scientific findings. Instead, I went to the original article which was published in a journal called Nature Medicine. The study reported on 10 individuals who were taking Gleevec and also had heart failure as well as a mice study. It generally found that these individuals who take Gleevec might have an increased risk for heart problems. This does not mean that anyone should stop taking Gleevec, but heart monitoring might be warranted in addition to other regular testing. I also was in touch with my doctor who said that he was not going to be ordering any additional tests at this time, but we could talk about this at our appointment in September. Needless to say, this was a bit of a scare, but my estimation is that this information was blown a little out of proportion by the press.

In other news, I have written before about Erin Zammett Ruddy who was diagnosed with CML in 2001 and writes a column in Glamour Magazine about her experiences with CML and Gleevec. She has also written a book called My (So-Called) Normal Life, which is excellent. She has just started her own blog called Life with Cancer. You can click on the link to read and comment about her experiences. She is a very honest and funny writer if you have not previously read her columns in Glamour.