20 Years

It is hard to believe, but twenty years ago today, I was diagnosed with CML. It feels like a lifetime ago and so much has changed in my life. Clearly, CML is not as prominent as it once was in my life. My last blog post was 5 years ago. Today, CML is primarily on the backburner in my life. I do have a couple of visits per year to my oncologist. I take my Gleevec daily as well. My symptoms have been in check for a long time with minimal side effects. 

The only more recent development in my CML journey has to do with the long-term effects of Gleevec. More recently over the past several years, my phosphorous levels have been rather low. The concern about this finding is that it relates to bone health and potential osteoporosis down the line. I am now working with an endocrinologist who has ruled out other causes for the low phosphorous and is quite convinced it relates to the long-term use of Gleevec. Fortunately, the treatment is rather simple. I take a calcium supplement (which helps produce more phosphorous) and I take phosphorous supplements. While I don't love adding more medications to my daily regimen, if this helps fight osteoporosis, it is worth it.

I sometimes think back to beginning of my CML journey from the day I was diagnosed, when I was having multiple tests done, talking about some scary treatment options, and eventually starting on Gleevec. Once my PCRs started to decrease, so did the anxiety. I no longer feel the angst of waiting for test results since my numbers have been quite steady for so long. 

I am grateful for all the support I have received over the years. I am even more grateful for the fact that people no longer ask me how I am feeling. I always struggled with that as I never felt sick. I am so lucky to have been diagnosed after an incredible medication was developed that changed CML from a death sentence into a manageable chronic condition. It has been unbelievable to watch the progress in the field and the many treatment options now available to CML patients. I hope that CML remains a slight distraction in my life and nothing more.

15 Years

I vividly recall the phone call from the doctor. "Your numbers came back and I think you might have leukemia." Not the best way to start a weekend. I had just walked in from work with some take out Chinese food for the family. My instructions were simple. Go straight to the hospital. I would soon learn that indeed I did have leukemia, but I had the "good" kind. I was diagnosed with CML fifteen years ago, but it really seems like a lifetime ago. 

So many things have happened since then. My youngest daughter had been born about 8 months prior. As you can see from the picture, my kids are teens now. I opened a new business the year after I was diagnosed. For the most part, however, life has been fairly normal. 

I was so lucky that I received this diagnosis when I did as Gleevec was now an option. Prior to this scientific breakthrough, the average life expectancy for someone with CML was only 5 years. I am now three times beyond that number and thankful for every day. 

I love how CML has taken a back seat to the rest of my life and it is no longer something I think about very often. I started this blog to keep my family and friends updated with my treatment. Fortunately, I have had little to say for a long time. I take my medication daily and get tested every three months. My number are consistently low and I remain in major molecular response. I am reminded of my cancerversary every year by my CML buddy, Wanda. I really appreciate this.

14 Years

I have not posted in a very long time which is really a testament to how well things are going. As the title of the post says, I was diagnosed with CML on 3/3/2006. That seems like an eternity ago. I recall those first few weeks and the anxiety that ensued after getting that fateful phone call. I remember analyzing every little test result, hoping for progress. I remember the countless trips to Dana-Farber.

While in some ways, life has changed from a CML perspective, some things have not changed at all. I still go to Dana-Farber twice a year for check-ins with my doctor. I also go an extra time just for bloodwork to check my PCR. I also continue to fly out to Oregon once a year to meet with Dr. Druker. While my meetings have generally been shorter and less eventful than they used to me, they are still reassuring both for me and my family.

I did have a minor scare with my numbers a month or two ago when I went from a very low PCR to a 1 log increase. This had happened with multiple readings. I was able to get a kit to send bloodwork out to OHSU and the next result showed the scores were back to where they had been. This was likely more of a statistical anomaly than an actual difference in scores.

I remain on 500 mg of imatinib. I have very few side effects other than some muscle cramping and occasional eye bleeds. Otherwise, the meds are just part of my normal routine. I don't think all that much about CML anymore. Perhaps this is the beauty of what Gleevec and subsequent meds have meant to those diagnosed with this disease.

I think about how lucky I am to have been diagnosed after the discovery of Gleevec and how it has afforded me a normal life.

12 Years

I was reminded this morning of my cancerversary by my CML buddy, Wanda. I had actually forgotten all about it, as I often do. Not to say that CML has disappeared from my life, it hasn't. In fact, last night my wife and I were working on our annual trip to Portland to meet with Dr. Druker.

The recent months caused a slight scare. I received my PCR test from Dana-Farber about 6 weeks ago. To my surprise, my numbers had increased about 10-fold. When you are used to dealing with logs and PCR test, 10-fold is a large jump. It was the highest number I had received in about 8 years. Needless to say, I was quite concerned and called my oncologist at Dana-Farber. He let me know that the laboratory had made some adjustments to their scaling and not to worry. He said he was receiving many similar calls.

Not thrilled with this answer, I contacted Diana at OHSU, who works with Dr. Druker. She said I could have my blood tested through their lab for comparison. Diana shipped me a kit and I sent off my blood. Last week, the results came back and were as low as they had ever been. Major Molecular Remission (MMR) still. Repeat in three months.

Why had the score changed so drastically at Dana? Apparently, until recently, the PCR test was not standardized. That is the reason that CML patients have to keep going back to the same lab, otherwise, they would have different results. Fortunately, over the past few years, there has been a standardization that has taken place using and international scale. Dana-Farber had switched to this several years ago, but apparently made another adjustment recently. For those of you who go to Dana-Farber for bloodwork, just be aware of this change and do not be so alarmed.

 In reflecting on my 12 years, it is really hard to fathom this amount of time. I feel like I am a different person in many ways. Three Olympics have passed during that time. My kids are getting older and life moves forward.

While CML will always be present and a part of my life, it is wonderful that it no longer occupies a large section of my thoughts.

Eleven Years

As I was sitting at my desk at work this morning. I had a glance at the date and thought to myself that I was forgetting something. Soon thereafter, my CML buddy, Wanda, sent me a wonderful email congratulating me on battling CML for 11 years. I had totally forgotten. It had not even crossed my mind today. I wrote her about how amazing it was that I was so surprised by her email and I had completely blocked CML from my mind. Perhaps it is denial. Perhaps it is just living life.

That is not to say that I do not think about CML. I am working on a trip to see Dr. Druker in Oregon over the summer. I have an upcoming appointment in May with my oncologist at Dana-Farber. I also have blood work every three months. It has generally been undetectable and barely detectable.

The biggest change since last year has been the switch to the generic version of Gleevec, imatinib. I was certainly worried about this change given Wanda's bad experience. I am happy to report that there seems to be almost no difference other than that the pills look a little different in color.

I recently has an imatinib level with Dr. Druker both before and after the switch. Interestingly, the generic appears to be somewhat more potent for me than the brand name version. A lower dose may be in order in the future. Fortunately, no additional side effects have been found.

Anyway, on this 11 year anniversary of my diagnosis, I am glad that I forgot all about it. May I continue to have many cancer anniversaries that are not in the front of my mind.

Back to Dana

I visited Dana-Farber for the first time in about 6 months. I always try to get the first appointment in the morning just in case my doctor is running late, which has been known to happen. This means an early departure around 5:15, arriving in Boston around 6:30.

Today, the traffic was fine and I arrived without incident. When I checked in on the laboratory level, the place was packed. They must have just opened when I arrived because they quickly started calling out names. I was amazed at the nearly 100 or so people waiting at 6:30 for a blood draw prior to the appointment.

I seldom have reminders about CML or cancer, but being at Dana-Farber is a huge one. I remember as I sit in this crowd that I am one of many fighting cancer. It reminds me that I am lucky enough to have the "good kind" but nonetheless, it is a constant battle.

In many ways, I hate coming to Dana-Farber. Don't get me wrong, it is a wonderful and incredible facility that provides ground breaking and amazing treatment to so many people. What I hate is the reminder.

Cancer is a big equalizer. It does not differentiate your race, wealth, or other health status. Cancer can affect any or all of us.

When I come here, I am reminded that I am part of this club that I never wanted to join. Interestingly, on most days, my only reminder is my medication. I don't get too many side effects. Last night, however, (perhaps as a cruel reminder about the appointment) I was awoken in pain with a severe muscle cramp. My pain was loud enough to wake my wife. Fortunately, this is really the only side effect I tend to get.

Today, with my doctor, I am discussing the generic version of Gleevec, imatinib. I am on my last couple of weeks of the brand version. While I recognize the enormous costs of taking the brand name (around $12,000 per month), I am cautiously optimistic that the generic will provide the same level of efficacy as the original. I have already taken a blood test to determine my imatinib levels while on the brand name. Once I switch, I will have another blood test to examine how effective the generic medicine is in comparison.

I will keep you posted when the transition occurs soon. For now, life goes on.

Decade

It is hard to believe, but today is 10 years since I was diagnosed with CML. That, in itself, is an incredible thing. Given the life expectancy of someone diagnosed with CML in the days before Gleevec and other medications that are now available was only 5 years, I have now doubled that. Needless to say, I am thankful for Gleevec giving me this opportunity to live life with CML deep in the background.

As you can see by my lack of posts, I have not been writing much about CML. Frankly, there is not too much to say. I have been in Major Molecular Remission for many years now. While I have some fluctuations in my numbers here and there, for the most part, CML has mostly disappeared from my body. The amazingly sensitive tests (PCR) designed to find CML cells in the body, may find a cell occasionally. More often than not, however, my numbers say undetectable. I used to be overly focused on my numbers. Now, I sometimes forget to share my results with my family.

Other than my daily medication, my CML monitoring takes place four times per year. I have two appointments with my oncologist at Dana-Farber. I have one blood test at Dana-Farber in between. Once a year, I fly out to OHSU in Portland to meet with Dr. Druker. We try to make a trip out of it while there. I have come to really love Portland when I visit. Other than these 4 times, I really don't think about CML all that much.

It is hard to imagine being at this place when a diagnosis like this comes about. It was a very stressful time 10 years ago when this all happened. I suspect my family and friends were probably more affected than even I was. Today, we are more relaxed, about this, however.

When I think about it, I am so lucky to have diagnosed when I did. The fact that CML has shifted from a fatal illness to a chronic medical condition just speaks volumes about the advances in modern medicine.