tag:blogger.com,1999:blog-251315972024-03-05T14:04:36.498-05:00Jon's CML DiaryI started this blog to keep my friends and family informed about my progress with Chronic Myelogenous Leukemia (CML). I was diagnosed with CML on March 3, 2006 after having some blood work ordered by my ophthalmologist. I am going to be tracking my progress throughout my treatment. I invite you to comment.Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.comBlogger90125tag:blogger.com,1999:blog-25131597.post-55424919916289825712021-03-03T09:31:00.001-05:002021-03-03T09:31:36.739-05:0015 Years<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj1UfoH9Bqw5W3q2Ii4u70KjlNoFzverZ-SoxUTvrL-P7Z8yq06AE9oAhvAnJLW_ajdH91RpPLKAHvoBSlAeXz2hAIHddYyD-mz7Z4H2GgGYINTwHEbUPk26kvYknHO2xX65A-Wg/s640/IMG_2160.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="606" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj1UfoH9Bqw5W3q2Ii4u70KjlNoFzverZ-SoxUTvrL-P7Z8yq06AE9oAhvAnJLW_ajdH91RpPLKAHvoBSlAeXz2hAIHddYyD-mz7Z4H2GgGYINTwHEbUPk26kvYknHO2xX65A-Wg/s320/IMG_2160.JPG" /></a></div>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. <p></p><p>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. </p><p>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. </p><p></p><p>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. <br /><br /></p>Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com0tag:blogger.com,1999:blog-25131597.post-41851619949899361052020-03-03T09:41:00.002-05:002020-03-03T12:25:03.364-05:0014 Years<div dir="ltr" style="text-align: left;" trbidi="on">
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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. <br />
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Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com0tag:blogger.com,1999:blog-25131597.post-39214564517894076052018-03-03T09:59:00.000-05:002018-03-03T09:59:02.718-05:0012 Years<div dir="ltr" style="text-align: left;" trbidi="on">
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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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. </div>
Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com0tag:blogger.com,1999:blog-25131597.post-62684318380811163152017-03-03T10:21:00.000-05:002017-03-03T10:21:19.916-05:00Eleven Years<div dir="ltr" style="text-align: left;" trbidi="on">
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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.</div>
Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com0tag:blogger.com,1999:blog-25131597.post-10879419465681243532016-10-19T07:20:00.002-04:002016-10-19T07:20:07.838-04:00Back to Dana<div dir="ltr" style="text-align: left;" trbidi="on">
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.<br />
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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.<br />
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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.<br />
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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.<br />
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Cancer is a big equalizer. It does not differentiate your race, wealth, or other health status. Cancer can affect any or all of us.<br />
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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.<br />
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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.<br />
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I will keep you posted when the transition occurs soon. For now, life goes on.</div>
Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com0tag:blogger.com,1999:blog-25131597.post-32844360645293769322016-03-03T10:00:00.000-05:002016-03-03T10:00:08.491-05:00Decade<div dir="ltr" style="text-align: left;" trbidi="on">
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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com0tag:blogger.com,1999:blog-25131597.post-21613416074521014462014-06-04T09:54:00.002-04:002014-06-04T09:54:37.744-04:00Beautiful Portland<div dir="ltr" style="text-align: left;" trbidi="on">
I recently returned to my annual Portland visit with Dr. Druker. This year was going to be a little different since Caroline, his longtime nurse practitioner had recently retired. I was fortunate to have contact with his new NP, Diana Brewer, prior to my arrival. She was very welcoming and accommodating and even facilitated getting my blood work done beforehand. Prior to even leaving for Portland, I had several PCR readings, one at Dana-Farber and the one at Oregon Health and Sciences University. Both were quite good. The Dana-Farber one showed that the CML was undetectable. On the OHSU lab, my results were "weakly positive" indicating that on this more sensitive test, a few cells were found to show some CML. Dr. Druker felt that this was statistically insignificant and essentially equivalent to undetectable. Needless to say, the pressure was off heading out West this year.<br />
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When I arrived, it was one of the nicest springs I had ever seen in Portland.I could see Mt. Hood clearly. The picture below was taken from the OHSU campus. Quite a view they have.<br />
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Often it is rainy or cold, but this felt like summer. I had a nice introduction with Diana. She was super sweet and pleasant and is a good addition to Dr. Druker's team. During my meeting with Dr. Druker, he talked about my excellent results and even after a slight scare last year with numbers going back up, everything is back to where it should be. He talked about some of the research he is conducting taking people off Tasigna who have been undetectable for 2 years. He was waiting on results, but felt optimistic that this might be a course of treatment in the future. Of course, it would mean having to switch medication, but with the possibility of coming off forever. This is likely a conversation for the future.<br />
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I had a nice appointment and then started my Portland adventure. I walked all along the waterfront area which was mobbed with people and the city's Rose Festival being set up. I also borrowed a bike from my hotel and took a ride along the waterfront. The following day, I had booked a biking tour of the Columbia River Gorge and waterfalls (see pictures below). It is truly spectacular as you can see from some of the photos below. Portland is an incredible city and I would recommend a visit to people who have not been there. Aside from the amazing offerings within the confines of the city itself, the outskirts (Mt. Hood, Columbia River Gorge, and Pacific Coast areas) are all so beautiful. I had a nice mini-vacation and things continue to proceed nicely with my health care.<br />
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Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com3tag:blogger.com,1999:blog-25131597.post-40416721016330086792014-03-03T08:07:00.000-05:002014-03-03T08:07:38.102-05:008 Years<div dir="ltr" style="text-align: left;" trbidi="on">
It is hard to believe, but it was 8 years ago today that I was diagnosed with CML. Fortunately, as you can tell by my lack of blog entries, there is not too much to report. Last year, I had a bit of a scare as my PCR numbers went up for the first time in many years. As I readjusted my CML medication and cholesterol meds, everything returned to normal. The interaction between the two was apparently helping me. Since then, things have been stable and normal.<br />
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I am thankful that CML is not something I think about every day. I am thankful that Gleevec exists and works wonderfully. I am also thankful to the wonderful doctors whose life mission is to cure and treat this disease. Finally, I am thankful for my family and friends for all the support I have received as I have dealt with this diagnosis.</div>
Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com1tag:blogger.com,1999:blog-25131597.post-33498556952099021972013-10-30T08:15:00.000-04:002013-10-30T08:15:26.422-04:00Undetectable Again!<div dir="ltr" style="text-align: left;" trbidi="on">
I have not posted for some, essentially waiting for test results. As you may recall, my numbers had unfortunately gone in the wrong direction last spring. Soon thereafter, I started on a higher dose of Gleevec and also went back on simvastatin. Over the summer, I had another PCR test revealing scores of about the same from what I had in the spring. The only good news was that the numbers were not going up, but rather staying the same.<br />
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Just a couple of weeks ago, I went for another follow up visit in Boston and to have another PCR done. This was now about 6 months after starting the increased dose and simvastatin. I talked with Dr. Stone about the plans depending on how the results turned out. He felt that if I was no longer responding to Gleevec, my PCR numbers would have gone up, not stayed the same. He also felt that the simvastatin was likely increasing the effectiveness of the Gleevec and coming off may have been the culprit.<br />
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Yesterday, I received my results. As you can tell from the title of this post, I was back in the undetectable range. Needless to say, this was a huge relief. The plan is to continue what I am doing with the dosages and have another test in a few months.<br />
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I am hopeful that CML will return to the back burner of my mind again. </div>
Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com2tag:blogger.com,1999:blog-25131597.post-45146968610942850832013-06-04T23:21:00.000-04:002013-06-04T23:21:30.868-04:00You're going the wrong way<div dir="ltr" style="text-align: left;" trbidi="on">
It has been a long time since I have written anything. For a while, there was little to write about. CML had become something really on the back burner for some time. Other than my 6 month appointments at Dana-Farber and my annual meeting at OHSU, I did not think of CML very much. Of course, I was continuing to take my medication daily, but it became automatic. Perhaps I was getting a little too cocky about this whole CML thing.<br />
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That seemed to change back in March. I had my regular appointment with Dr. Stone and had my blood work done. Since I had no new results, the appointment was fairly uneventful as usual. A couple of weeks later, I received my PCR results from Dr. Stone. For the first time in several years, my PCR was detectable (0.03) at Dana-Farber. While the number was still low and not a major cause for concern, Dr. Stone wanted the PCR repeated sooner rather than later. While I was mildly concerned at this point, Dr. Stone was not. I knew I was heading out to see Dr. Druker in Oregon in May, so I kept this piece of information stowed away until then.<br />
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Right before Memorial Day, I headed out to Portland or my annual visit with Dr. Druker and Carolyn. It was a fairly miserable weather spell, but I did manage to get a bike ride in along the rive. Here are some pictures I took during my ride. This is the famous Portland sign. The other picture is a floating bridge that I rode over.<br />
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My appointment was very good except for the fact that I learned that Carolyn would be retiring in the fall. She has been a crucial part of the team that helps me and Dr. Druker. She will be missed terribly. I spent some time talking about my last PCR with Dr. Druker. He was not overly concerned either and thought that a repeat PCR was in order. I had one drawn that day. We talked about contingency plans if this test result came back higher. Dr. Druker thought the result might just be an anomaly. One of the ideas presented was consideration of a switch to another medication, such as Tasigna, in case I had become resistant to Gleevec. It should be noted that my dosage on Gleevec was lowered to 400 mg last fall.<br />
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I had not known much about Tasigna or the other medications that were now second-generation treatments for CML. I had done so well on Gleevec that I had not really researched any of the other options. Fortunately, for CML patients, there are many other options besides Gleevec. After having this discussion, I did not do any additional research, however, awaiting my latest PCR result.<br />
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Last Friday night I received a call from Carolyn with the results of my PCR. The Molecular MD lab (the one that uses the international scale) found my PCR to be 0.05. This was essentially a 10 fold increase since my last result. It essentially confirmed the finding at Dana-Farber and suggested some action needed to be taken. Carolyn had said that we should now be thinking about a switch to Tasigna.<br />
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I started doing research that night on Tasigna. It is made by Novartis, the same company that makes Gleevec and is essentially Gleevec on steroids. By all accounts, it is about 30 times more powerful than Gleevec. The downside is that it is not the easiest medication to take. You cannot eat 2 hours before taking the medication and 1 hour afterwards, making it a little tricky. In addition, with greater power comes more side effects. As I read blog posts, there were some alarming side effects noted. I was not overly concerned because I did well on Gleevec with fairly minimal side effects.<br />
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I decided to consult with Dr. Stone and immediately made an appointment to talk to him more. He suggested that we might want to consider other medications as well. Before I met with Dr. Stone, I received a message from Carolyn saying she had consulted with Dr. Druker who said that I might want to consider another PCR test and also an increase in Gleevec before changing meds altogether.<br />
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I met with Dr. Stone this afternoon and we discussed this very scenario. After talking about different medication options and pros and cons of each, the course of action that was decided was to increase my Gleevec to 600 mg and see how my PCR responds.<br />
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Interestingly, we talked about another change in my medications that may have affected things. In the fall, I came off of my cholesterol medication simvastatin since my cholesterol was so low. After about 6 months off, my cholesterol began to increase so I recently went back on a low dose. Dr. Stone commented that Gleevec and simvastatin are known to increase the effectiveness of each other and this might have contributed to my number change.<br />
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Regardless of the reason, I was pleased with this course of action and started taking the increase dose of Gleevec this evening. This was certainly the first scare in this process and it is making me more vigilant. Perhaps I needed a little wake up call to remind me that I am dealing with a serious medical condition. We shall see how my body responds and I will keep posting on the blog with updates.</div>
Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com4tag:blogger.com,1999:blog-25131597.post-44395292418536185542012-11-04T20:45:00.000-05:002012-11-04T20:45:31.793-05:00Reflections on my 40th Birthday<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi89azpIwjIVqsC5FFZQvYhsjU1orOL4zKbDkOGR7XAgdNbutrJ-vcmt8EeaYKr3E9LE2DYhWZxLYtky57u8A6t96LDKpMzWMyVlmWuW6po0nNu0OjLLq2n48Rn7R2X7oFGN5r4Iw/s1600/Linguine.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi89azpIwjIVqsC5FFZQvYhsjU1orOL4zKbDkOGR7XAgdNbutrJ-vcmt8EeaYKr3E9LE2DYhWZxLYtky57u8A6t96LDKpMzWMyVlmWuW6po0nNu0OjLLq2n48Rn7R2X7oFGN5r4Iw/s320/Linguine.JPG" width="239" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_qIOBEx0-n4owZyQgF0H79RPHealcFl6b_HW9lgcWSwQQmzvhnjakLNYYx62P23_d1d_QgOs-fpWnGe3Nkw_dHqIgmS5-A5ksL4HTmbtEk5Wy9l9gG6TtObSC33Q8Kbc56egYMA/s1600/Jon+Mia+Ava.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_qIOBEx0-n4owZyQgF0H79RPHealcFl6b_HW9lgcWSwQQmzvhnjakLNYYx62P23_d1d_QgOs-fpWnGe3Nkw_dHqIgmS5-A5ksL4HTmbtEk5Wy9l9gG6TtObSC33Q8Kbc56egYMA/s320/Jon+Mia+Ava.JPG" width="239" /></a></div>
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So today was my 40th birthday. I had a lot of mixed feelings about my birthday and did not want a big celebration, much to the chagrin of my wife and mother. For some reason, I felt that 40 meant that I was getting old. While nobody likes to get older, I realized I needed to take a different perspective altogether. In many ways, I am lucky to be alive. I was diagnosed with CML over 6 years ago. Not too long ago, the life expectancy of someone with my diagnosis was 5 years. That would have meant that I was not likely to reach 40. That was until Gleevec became available. This medication truly has saved my life and allowed me to reach 40 and be upset about it. How lucky I am.<br />
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I did have a very nice birthday. I did some of my favorite things. I took a long bike ride in the beautiful fall weather. I got to relax and spend time with my family. We even went to my favorite restaurant, Guido's in Providence where I ate my favorite dish of all time, linguine with white clam sauce. You can see the pictures above. Needless to say, a really nice 40th birthday.<br />
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I am thankful for turning 40 and all the wonderful things I have in my life. I am thankful to my family for always supporting me. I am thankful that I can be upset about getting older rather than worrying if I will make it to my next birthday. </div>
Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com3tag:blogger.com,1999:blog-25131597.post-25049008293908465192012-10-15T14:25:00.000-04:002012-10-15T14:25:03.079-04:00Still Undetectable<div dir="ltr" style="text-align: left;" trbidi="on">
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I have not written for quite some time so I thought I would provide an update since a lot of people have asked me about how I am doing. To sum up how things are going, they are really good. I went two weeks ago for my semi-annual check up with Dr. Stone. Last week I received the results from my latest PCR test and they continue to remain undetectable. While I was there I took a picture of the Healing Garden which is located near the cafeteria at the new building at Dana Farber. This was a nice urban oasis and I would recommend checking it out if you happen to visit the hospital.<br />
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The other news is that I dropped my dose of Gleevec back down to its original dose of 400 mg. Some of you may remember that my dose was increased to 800 mg several years back after one of my PCR tests started moving in the other direction. It turned out that there had actually not been an increase, in fact there was a decrease as I had another one taken before I started the increase to 800 mg. The higher dose pushed me into molecular remission pretty fast and wasn't horrible. I did have some side effects from this, however, including GI issues and my eyes were constantly tearing. Almost two years ago, Dr. Druker moved the dose down to 600 mg and last spring down to 500 mg. That was fine until the insurance company changed and started charging me two copays for the meds. Needless to say, Dr. Stone dropped me back to 400 mg and that is what I started doing last week.<br />
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Several people have asked my about the annual Light the Night Walk which took place several weeks ago. My team did not participate this year as we decided to take the year off from fundraising. We have been doing this great event for 7 consecutive years and I felt that it might be time to try something new. I am looking into the possibility of doing Team in Training for bicycling as that has become my latest hobby. I will keep you posted.<br />
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In summary, life continue to be good and CML is in check. Let's hope they both stay that way.</div>
Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com0tag:blogger.com,1999:blog-25131597.post-45500443134470226922012-06-08T19:30:00.001-04:002012-06-08T19:31:19.226-04:00Portland in the Spring<div dir="ltr" style="text-align: left;" trbidi="on">
I recently returned from my annual visit to Portland to visit with Dr. Druker and Carolyn Blasdel. I had gone out by myself this year as schedules did not work out well for an extended visit. I was fortunate to find that JetBlue was now flying directly from Boston to Portland. The only downfall is that the only return flight they had was a red eye. Needless to say, I was pretty tired upon my return.<br />
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My visit was a little different than in past years. The clinic was much busier than I had ever seen it and I was put in a different room. This did not bother me too much. My meetings with the medical team were both excellent as usual. I never felt rushed and could ask as many questions as I wanted. This year, Dr. Druker had an oncologist from another country shadowing him.<br />
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We talked about dropping my Gleevec down a bit since I have remained undetectable based on my tests at Dana-Farber. My tests through Molecular MD have always found trace amounts of cells, but it is an extremely sensitive test. This time, my labs were accidentally run at the OHSU laboratory instead. They rated their lab as somewhere in the middle between Dana-Farber and Molecular MD in terms of sensitivity so I was not sure where it would end up. I received my results this week and the OHSU lab also came back as undetectable. Good news again!<br />
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We decided to lower my dosage to 500 mg from 600 mg and then check my Gleevec level next year when I go out for my visit. I was comfortable with this move.<br />
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On a more fun note, I took a very cool tour of Portland's food carts while I was there. In Portland, they have over 400 of these carts, most of them in permanent pods throughout the city. When I have visited in the past, it has always been hard to decide which one to choose. This tour allowed me to sample many. I would highly recommend it if you are visiting Portland. Here are some pictures.<br />
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<br /></div>Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com0tag:blogger.com,1999:blog-25131597.post-61032037426538784212012-03-03T13:42:00.000-05:002012-03-03T13:42:59.546-05:006 YearsI was doing some errands this morning when I received an email from my CML buddy, Wanda, who let me know she was thinking of me today. At first I thought, what is she talking about. Then I remembered the date. Today is the 6th anniversary of my diagnosis. I am not sure if this is a date worth celebrating or forgetting, but it was certainly interesting that I had totally forgotten about it. <br />
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A lot has changed in 6 years. Fortunately, CML has been placed on the back burner. I will be reminded later this month when I have my 6 month visit at Dana Farber. In May, I will be returning to Portland to visit with Dr. Druker. I continue to be on 600 mg of Gleevec and so far so good. <br />
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I am thankful that CML has not taken over my life, but become a bump in the road. Let's hope it remains this way.Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com2tag:blogger.com,1999:blog-25131597.post-42220824323203356622011-12-27T16:30:00.000-05:002011-12-27T16:30:40.884-05:00A Look Back at 2011CML has started to take a backseat in my life and I hope it stays there. I have had continued to be monitored for my blood work and my numbers remain steady and even. I am having PCR tests done at both Dana-Farber and in Portland, OR. What I find interesting, or perhaps frustrating, is that my numbers at Dana-Farber come back undetectable, but the same test in Oregon is coming up with slight traces of leukemic cells. They are very small amounts and still represent a major molecular response. It almost seems pointless to have the testing done in Boston when the results are more sensitive, and therefore, more accurate in Oregon. <br />
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In other CML news, we had our annual Light the Night Walk again this year. My daughter, Mia, took a more active role in fundraising this year and ended up being the largest fundraiser on our team. The walk took place at a new location, which was a little strange, but still a nice turnout. We raised about $4000 as a team. Mia recently received her award for being a Bright Light (raising over $1000) and she could not have been more proud. I think we found a new team captain for next year.<br />
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I also recently received an interesting letter from the father of a friend of mine from college. A fraternity brother of mine had passed away before his junior year after having a bone marrow transplant for leukemia. This was back in the early 90's before Gleevec was on the scene. Based on the letter from his father, it sounded as though my friend had CML, but was not lucky enough to have this life saving medication. His father was soliciting for a leukemia research foundation and did not know me personally. I sent him a letter back explaining my situation and the similarities between his son and myself. His son Jon, and I, both had an interest in juggling. While we were in the house together, we would often practice together. Little did I know I would struggle with the same diagnosis that eventually took his life. It made me realize how lucky I really am.<br />
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Looking ahead to 2012, I have another appointment soon at Dana-Farber and we are heading back out to Portland in May. That is a great time to visit. Mia asked if she could come out with us this year because she wants to hug Dr. Druker. I feel the same way.Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com2tag:blogger.com,1999:blog-25131597.post-52063378360571813052011-09-15T12:45:00.000-04:002011-09-15T12:45:09.958-04:00Light the Night 2011It is that time of year again when we start fundraising for a very important event, the annual Light the Night Walk for the Leukemia and Lymphoma Society. Team Gershon has been participating in this wonderful charity event for 6 years now and we have raised a lot of money thanks to generous donations from people like you.<br />
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As most of you are aware, I was diagnosed with a blood cancer (CML) in 2006 and have been lucky to benefit from a ground breaking medication, Gleevec, whose development was funded by the Leukemia and Lymphoma Society. For this reason, my family, friends, and I have been participating in this event and try to raise as much money as we can for this wonderful cause.<br />
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This year's walk takes place on October 1, 2011 at a new location, The Garden City Center in Cranston, RI. The walk begins at 7:00 pm and is a fun, family-oriented event. Please join us in this walk and fundraising effort. Another change this year is that my oldest daughter, Mia, is trying to do her own fundraising as well.<br />
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The link will take you to her page and you can donate to our team under her name.<br />
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<a href="http://pages.lightthenight.org/ri/Providen11/MGershon">Mia's Light the Night Page</a><br />
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I thank you in advance for your support which will make a difference in the lives of thousands of patients battling blood cancers.<br />
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Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost.<br />
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By joining our team and raising funds for this important cause, you'll be making a real impact on the fight against cancer. On Walk night, you'll join us with other teams and individuals from all over our community in the culmination of our efforts to find cures. Walk night is a family-oriented evening in which participants carry illuminated balloons, raise awareness of blood cancers and come together as a caring community.<br />
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Every walker who raises $100 or more* will be a Champion For Cures and will be recognized on Walk night with:<br />
- A Light The Night t-shirt.<br />
- An illuminated Light The Night balloon in red (supporters), white (survivors) or gold (in memory of a loved one)<br />
- A wristband which entitles the wearer to an array of food and refreshments.<br />
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We all know someone who has been affected by cancer. Please join the team and "walk the talk."<br />
<a href=" http://www.lightthenight.org/register/reg/#action=join_team;teamName=Team%20Gershon;teamID=217063;eventName=Providence%202011;eventLocation=Garden%20City%20Center;eventDate=10/01/2011;walkWithMe=true"><br />
http://www.lightthenight.org/register/reg/#action=join_team;teamName=Team%20Gershon;teamID=217063;eventName=Providence%202011;eventLocation=Garden%20City%20Center;eventDate=10/01/2011;walkWithMe=true</a>Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com0tag:blogger.com,1999:blog-25131597.post-34909533790986965992011-05-19T10:42:00.000-04:002011-05-19T10:42:12.741-04:00Portland in the Spring<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaRRLue35ojBP9rxXUsmyQXZnqHeq4Vls-FscXvEeLCJQIay-X2OBeD-etjaHxobP2Z-banHJ5wtWcD7gDSlccgpa70f-xaHqp1K9TOcoLRJ8vA2zmlIJzNBn_eDbbzA38woWc1A/s1600/Portland.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="200" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaRRLue35ojBP9rxXUsmyQXZnqHeq4Vls-FscXvEeLCJQIay-X2OBeD-etjaHxobP2Z-banHJ5wtWcD7gDSlccgpa70f-xaHqp1K9TOcoLRJ8vA2zmlIJzNBn_eDbbzA38woWc1A/s320/Portland.jpg" /></a></div><br />
So my wife and I recently returned from our annual trip out to Portland to meet with Dr. Brian Druker and Carolyn Blasdel. We usually try to make this an extended trip since it is such a long plane ride. Since we have another trip planned over the summer, we made it a quick two-day mini vacation for us. Portland in the spring is usually quite beautiful. That was not the case for this trip and we hit cold and rainy weather. <br />
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My visit with Dr. Druker and Carolyn went quite well. I am progressing exactly as they had hoped. Due to my low numbers and time since diagnosis (5 years) the chances of any recurrence of the CML is quite low and grows lower with each passing day. They kept me on my dosage of 600 mg of Gleevec for now. Even on this lower dosage, my numbers have been good. <br />
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We had a discussion about a European study where some patients were taken off Gleevec altogether. Although this was a smaller study, about half the patients were able to remain off medication without a return of symptoms. The other half had a return of symptoms and went back on Gleevec. Fortunately, almost all of them went back to a positive response when the medication was restarted. Essentially, what this might indicate is that for some people, Gleevec might be curative, while for others, it might be a maintenance medication. This is a radical shift in how people are thinking about this type of treatment. Due to the lack of research at this point, no changes were proposed, but it is interesting to watch the next phase of research in this field.<br />
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I did receive my PCR from the Oregon lab after we got back. My number was 0.004. This was consistent with my previous findings at this lab and remains a major molecular response. I always find it interesting that my blood work at Dana-Farber comes back undetectable, but the Oregon lab seems to find a couple of cells. This has to do with the sensitivity of the PCR test and the particular lab where it is performed. <br />
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Anyway, towards the end of our brief trip, my wife and I did the Chocolate Walking Tour of Portland. We had a fun time, although it was raining and freezing. We tasted a lot of chocolate and I never realized the varieties of chocolates out there. The most interesting was a chocolate flavored balsamic vinegar. Who would have thought that this would taste good.Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com3tag:blogger.com,1999:blog-25131597.post-60611487829540361672011-04-24T19:27:00.000-04:002011-04-24T19:27:24.342-04:00Great article abot Gleevec and Dr. Druker in Smithsonian<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiNDPHDH5a8OPUrJahhcw5pPjUl4tVhT9sD4b8hQ8GK9EShqKziqNdHgIp0AouPIjWNfYqb9ouCjx0QrRXYh4k3tXxfzU3eWm88-0xbo5jYv0pWELBSgHslkndOJxdOOSQHjtVgw/s1600/Druker-cancer-with-patient-631.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="152" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiNDPHDH5a8OPUrJahhcw5pPjUl4tVhT9sD4b8hQ8GK9EShqKziqNdHgIp0AouPIjWNfYqb9ouCjx0QrRXYh4k3tXxfzU3eWm88-0xbo5jYv0pWELBSgHslkndOJxdOOSQHjtVgw/s320/Druker-cancer-with-patient-631.jpg" /></a></div><br />
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Great article in Smithsonian Magazine talking about the history and development of Gleevec as well as the crucial role that Dr. Brian Druker had in treating CML. We are approaching the 10 year anniversary of FDA approval of Gleevec. It was a great read and highlights what an incredible individual Dr. Druker is. I am looking forward to seeing him in a few weeks.<br />
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Click on <a href="http://www.smithsonianmag.com/science-nature/A-Victory-in-the-War-Against-Cancer.html#">this link</a> to see the article.Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com1tag:blogger.com,1999:blog-25131597.post-37328635220322659792011-04-14T12:48:00.000-04:002011-04-14T12:48:28.125-04:00Still undetectable<div dir="ltr" style="text-align: left;" trbidi="on">Good news that my latest results from Dana-Farber came back as undetectable. I have had 5 straight reading of my PCR at Dana-Farber as undetectable. What is less clear is whether this would be the case at the other blood lab I use in Oregon. I go back and forth between the labs. Regardless, the numbers are all good.<br />
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I did want to share a video from the National CML Society that my CML buddy, Wanda, told me about. It is a talk by Dr. Michael Mauro from the Oregon Health and Science University about the latest in CML research. He is apparently speaking this weekend in New York City as well. <br />
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<iframe src="http://player.vimeo.com/video/16463593" width="400" height="225" frameborder="0"></iframe><p><a href="http://vimeo.com/16463593">An Evening with the CML Experts</a> from <a href="http://vimeo.com/ncmls">The National CML Society</a> on <a href="http://vimeo.com">Vimeo</a>.</p></div>Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com0tag:blogger.com,1999:blog-25131597.post-59182731927893046532011-03-30T10:01:00.000-04:002011-03-30T10:01:32.794-04:00The New Dana-Farber<div dir="ltr" style="text-align: left;" trbidi="on"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEtpIjEH4crvgnLomPDcNsSh9msSdk8n3a2u0dTHcIwM8ZyoZ2OBHbyarEBHOccJiOgPn6VzvIcae40qhw5CTR3b_WXIi8JadEQe3Ny0UsmCMkRhaxKR9lMDs-ie2REfhBkd-wnQ/s1600/yawkey-center-day.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEtpIjEH4crvgnLomPDcNsSh9msSdk8n3a2u0dTHcIwM8ZyoZ2OBHbyarEBHOccJiOgPn6VzvIcae40qhw5CTR3b_WXIi8JadEQe3Ny0UsmCMkRhaxKR9lMDs-ie2REfhBkd-wnQ/s1600/yawkey-center-day.jpg" /></a>So I am sitting in the waiting room at the new Yawkey Building at Dana-Farber for my 6 month visit. It is already an incredibly different experience and more reminiscent of my experiences at Oregon Health and Sciences University. First, the parking lot was much larger and there were plenty of spots. I am sure that arriving at 7:30 AM helped with this. I then went to the laboratory on the second floor. That is all that was there. It was quick, clean, and efficient. I also noticed that privacy was much more of a factor. They called patients by their first name and last initial rather than their full names which had always bothered me in the past.<br />
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After my blood work was done, I went up to the 8th floor where there was a leukemia and lymphoma clinic. It was not crowded, wide open with plenty of seating. There was even a "nourishment" stand where I was able to get a nice tea. There is even a nice monitor with announcements for the hospital. One notice just said that if you have time, you can borrow an ipad to keep busy. A man even came around offering me a newspaper which I gladly accepted.<br />
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I was quickly taken into have my vital signs done as well. This was efficient and a much nicer set up.Then things started to get messy. The power went out in the whole building and the staff had to scramble to figure out what to do. Since all the records, lab results, and scheduling are computer-based, they were pretty much helpless. I ended up being taken to see my doctor about 45 minutes late and he had no information about me other than my name. I had to give him a brief synopsis. He was able to find my lab results which were normal. I am waiting for my PCR results which take about 2 weeks. No significant changes.<br />
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As I was about to leave, the power went back on. Despite the technical difficulties, it was still a much more pleasant experience than what I was used to at Dana-Farber. I happened to stop on the 3rd floor where I found the healing garden and the dining pavilion. Not bad.</div>Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com2tag:blogger.com,1999:blog-25131597.post-51286434633252936502011-03-03T12:35:00.000-05:002011-03-03T12:35:50.701-05:00Five Years<div dir="ltr" style="text-align: left;" trbidi="on">It is hard to believe that I have reached the milestone of 5 years past initial diagnosis, but I have. I guess time flies when you are having fun. It really is a poignant moment to reflect however. It was not that long ago that people with my diagnosis were told they may only have 5 years to live. I am so thankful that I was lucky enough to be a recipient of ground-breaking medical treatment.<br />
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I remember that day 5 years ago vividly. I actually ripped the day off in the calendar in the hospital as some sort of memento. All I wanted to do was eat the Chinese food I had picked up after work. Instead, I got "the call". and reported to the ER immediately. It was all surreal what happened over the next couple of weeks.<br />
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I really have been so lucky to continue to respond well to Gleevec and essentially live almost symptom free. I am so thankful to my family and friends that have supported me and continue to do so.<br />
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I head back to Dana-Farber at the end of the month. I also go to OHSU in Portland in May. Let's hope the good results continue.<br />
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My award was the second from the last. I had brought my family including my two daughters, wife, mother, and and mother-in-law. My girls kept wondering when I would be going up to accept the award. When it was finally my turn, it was a bit of an out-of-body experience to hear Bill Koconis (the executive director of the LLS) read a description about me and why they were giving me this award.<br />
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I have been an active fundraiser for the LLS for 5 years now and he noted that our team had raised over $75,000 for the society during that time. In addition, I had participated in their advocacy trip to Washington, DC several years ago and thus was seen as an ambassador for the society. He also mentioned this blog which I found interesting. As I write these posts, I never quite know who reads them.<br />
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When I went up to accept the award, I didn't quite realize how big the audience really was until I looked out. I don't mind public speaking, but this felt a little different. I had not prepared anything to say. I had a flashback to the Oscars for a moment. I started talking about how much I valued the society and why I chose to work hard to raise money for this organization.<br />
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As I looked out at my family, I saw them all crying. I became emotional myself. It was a touching moment. I also realized that it was one of the only times I had discussed my diagnosis in front of a live audience. My girls did not quite understand why I was crying, nor did I.<br />
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I left the event with mixed emotions. Every time I do something for the LLS, it is a reminder of my diagnosis that I am fortunately able to forget easily. Despite this, the organization is such a worthy one, that my own discomfort is worth it to keep them functioning to help find cures for blood cancers and support patients and families affected by these diseases.<br />
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In other news, I did receive another PCR test result from Molecular MD in Oregon. The results were again quite good. Although the scores from this lab are not undetectable, they are extremely low. It is quite likely that the same reading at Dana-Farber would have been undetectable due to the sensitivity of the test. Needless to say, I am plugging along.Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com3tag:blogger.com,1999:blog-25131597.post-46644246419623925122010-10-18T18:10:00.000-04:002010-10-18T18:10:56.802-04:00Light the Night 2010 Final Results<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikEeI2dNw6Wo2-QtAJOIe0lhLM7qsLNPTAVuBJU6tmIdqjGMe_SIzcYncdGiNqXth-UZYrtv6aoo263Ox0wftTg4rR1_mPDnG8fWVTykvRg0RgBeTRRVt6nFNfQX9OFY-JBGKmdQ/s1600/P1000503.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br />
</a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHKhftgh_MJGMzbrAuQL6kiX3iXY0kRIw3VPmnV-Bu1rrcmqSsbpRY_BD2CuH-e3_sSSDzt9TMKhaXfUe5pZWsLfjuj3fMPDfMNXHvgv9ZK8ebxmG7Ym61aI0I0i6WolBsDCEz5Q/s1600/P1000494.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHKhftgh_MJGMzbrAuQL6kiX3iXY0kRIw3VPmnV-Bu1rrcmqSsbpRY_BD2CuH-e3_sSSDzt9TMKhaXfUe5pZWsLfjuj3fMPDfMNXHvgv9ZK8ebxmG7Ym61aI0I0i6WolBsDCEz5Q/s400/P1000494.JPG" width="400" /></a></div><br />
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The final tally is in and the team did quite well again. We raised nearly $7500 for the Leukemia and Lymphoma Society's Light the Night Campaign. This was our fifth year raising money for this wonderful charity and we are pleased with the results. The walk took place on a beautiful fall night and we had a great time. I am grateful for all of you who donated money and appreciate the support.<br />
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In other news, later that week, I had another PCR test done at Dana-Farber. Fortunately, it came back as undetectable again. I have now been on the lower dose of Gleevec for about 3 months. I have noticed that my eyes are swelling less, and therefore, I am tearing less than before.<br />
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I did learn some sad news during the fundraising. Back in 2006, I had written a post called <a href="http://jongershon.blogspot.com/2006/11/not-alone.html">Not Alone</a>. I had written about a friend of mine from internship who had been diagnosed with colon cancer. Deb and I had talked about writing a book together about the psychosocial aspects of cancer.<br />
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I had been out of touch with Deb and her husband, Todd, for about a year. I had sent them a donation request and that is when I learned that Deb had passed away last winter. I was pretty devastated. Deb and I had a really good connection as colleagues, but an even stronger one as cancer patients. I was so sorry to hear of her passing and the impact that it will have on her family and friends. As sad as I am, it also reminded me about how lucky I was to be doing as well as I am.Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com0tag:blogger.com,1999:blog-25131597.post-54454484008610790552010-08-30T16:14:00.001-04:002010-08-30T20:45:44.497-04:00Light the Night 2010 and updates<div class="separator" style="clear: both; text-align: center;"><a href="http://etools.lightthenight.org/mission360assets/default/fundraising/docs/LTN_Web_2C_hires.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="243" src="http://etools.lightthenight.org/mission360assets/default/fundraising/docs/LTN_Web_2C_hires.jpg" width="320" /></a></div><br />
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The annual Light the Night Walk in Providence is quickly approaching. This is the 5th year of our participation and it has been a wonderful experience. The Leukemia and Lymphoma Society is a great organization. It has helped me and many other with blood cancers in incredible ways.<br />
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This year's event will be held on Saturday night, September 25, 2010 at Lippitt Memorial Park in Providence, RI. The opening ceremony starts at 6:30 and the walk begins at 7. It is about a 3 mile course. For those who have not seen it before, it is very powerful. There are about one thousand people walking down Blackstone Boulevard with lit balloons all in an effort to raise money for this great organization.<br />
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There are a number of ways to participate. You are welcome to donate to me or any of my team mates. You may go to my site (<a href="http://pages.lightthenight.org/ri/Providen10/JGershon">Light the Night Page</a>). Any donation is appreciated.<br />
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If you are interested in walking, you may sign up as a walker on the same site. On the top banner, it reads "Walk with Us". Please feel free to email me with any questions as well.<br />
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In terms of other news, my PCR test came back with excellent results again. My number keeps going down. The level was 0.0008. Excellent news even on a lower dose of medication.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeegMdFlUXM9JYfk2MT8Ra0aNYAefMNIwtRbhXXBCPIFYxzlnYfgDm0fEctmt2NXQY0x2A1dUvRNavNicMqpLzVRm8xkwWviTEo57d-Knq_sFCwr5pb_iHS-7M8soxpQYDrkJsfQ/s1600/PCR+August+2010.bmp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeegMdFlUXM9JYfk2MT8Ra0aNYAefMNIwtRbhXXBCPIFYxzlnYfgDm0fEctmt2NXQY0x2A1dUvRNavNicMqpLzVRm8xkwWviTEo57d-Knq_sFCwr5pb_iHS-7M8soxpQYDrkJsfQ/s320/PCR+August+2010.bmp" /></a></div>Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com1tag:blogger.com,1999:blog-25131597.post-68120296692601385572010-07-08T12:42:00.000-04:002010-07-08T12:42:05.232-04:00The Summer of 2010<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7Twhx3AAOFrLEUxTp6j25U3MoEsUf6SJRrhzYQ06NOPOfzlyJASgiaUmtv64T-t_EPLWdggUFpV9LRHZEdOhLyhYpiFdEwRKyfaTYXTXThD1dvPP1kKXxBS0qe-_FL8-uOEF6tg/s1600/IMG_2780.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7Twhx3AAOFrLEUxTp6j25U3MoEsUf6SJRrhzYQ06NOPOfzlyJASgiaUmtv64T-t_EPLWdggUFpV9LRHZEdOhLyhYpiFdEwRKyfaTYXTXThD1dvPP1kKXxBS0qe-_FL8-uOEF6tg/s320/IMG_2780.JPG" /></a></div>It has been a long time since I have written on this blog and many people have been requesting an update. It is not that nothing has been happening, but just that my spring was encompassed by a disastrous flood that ruined my office. Fortunately or unfortunately, I happened to be in Disney World when this happened. I returned to an awful mess and some crisis management to keep the business running. The picture is what happened to our computer equipment when 3 feet of water invade your office.<br />
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Soon after this disaster, I headed out west to meet with Dr. Druker for my annual visit. Earlier that same week, he was on the Dr. Oz show. Here is the clip below. <br />
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Dr. Druker said that he was receiving calls from all over the world because the show seemed to indicate that Gleevec was a miracle pill for many types of cancer.<br />
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Anyway, my visit went smoothly and calmly. I had blood drawn and we talked about longer term plans. Dr Druker wanted me to have a Gleevec Level test conducted because he suspected that I might be on too high a dose of the medication and could likely come down from the 800 mg. In order to do this, I needed another kit that was shipped to me and was sent off to the CML Alliance. Unfortunately, due to a dispute with the FDA, the information from the CML Alliance had to be removed from the web.<br />
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After our visit to Portland, we jumped on a plane and headed to the Bay Area to meet up with our friends Angela and Russ. We visited Napa Valley and San Francisco and had a wonderful time.<br />
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When I returned home, I had the blood work done. I received a call from Carolyn at OHSU letting me know that my PCR level was still extremely low and only barely detectable based on the ultra sensitive tests that they use at Molecular MD. My Gleevec level also came back as quite high indicating that I needed to come down off the 800 mg to 600 mg.<br />
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Interestingly, this posed some logistical issues. First, I would need a new prescription which is usually not a big deal under normal circumstances. Due to the high cost of this medication, there is an extensive pre-certification process that has to occur. Also, the pill comes in 400 mg tablets or 100 mg tablets. That would mean I would break the 400 into 2 or get a bunch of 100 mg tablets. The problem with breaking the 400 mg into 2 is that it is released quicker in your body and may produce some side effects.<br />
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I took the plunge last night and took my first 600 mg dose of Gleevec. I will have another PCR test in August to monitor my progress and make sure my numbers don't change.<br />
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Dr. Druker also talked about some potentially encouraging research out of Europe. Some people with CML and taking Gleevec have been able to come off the medication and have no return of symptoms. Others have tried the same thing and symptoms did return, but disappeared again once Gleevec was restarted. This might suggest that Gleevec could be curative in nature, but there is not yet enough research to determine this.<br />
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The other good news is that my office was fixed and we moved back in. This allows me to breathe a small sign of relief.Jon Gershonhttp://www.blogger.com/profile/08634355302177050978noreply@blogger.com2