A little late with this update . . .
It just dawned on me that I failed to post an update following John and Marian's most recent checkups with Dr. Flinn. Although I will never take for granted this stretch of uneventful exams and normal bloodwork, I have gotten used to getting good news every eight weeks. And I never have anxiety prior to our doctor visits these days. Based on the way they both feel and the absence of swollen lymph nodes, I assume all is well and their bloodwork will only confirm the obvious.
John has been receiving CAL-101 for 27 months. Marian's clinical trial began a little more than four months after John's. And they are both doing great! Blood and lymph nodes remain normal for each of them. And they are both feeling good. Although John still has minor fatigue at times and often falls asleep while trying to watch television at night, I have noticed that his energy level has improved since our move to West Virginia. I think being a Honda dealer again really agrees with him! We have made many wonderful new friends and we are both loving life in the mountains. I am not even dreading the snow as much as I thought I would be. (I'm sure I'll be tired of it by February, but it's a small price to pay for the beauty of four distinctly beautiful seasons and the mild summers.)
I often stop what I'm doing at random moments and just thank God for the life He has blessed us with. In February of 2010, John failed chemotherapy for his CLL. Had it not been for the phase one trial of CAL-101, we would have been facing a stem cell transplant. Only patients who had failed treatment or relapsed were eligible for that first clinical trial. So our disappointing results from FCR qualified him for the first round of study and he was able to start at the lowest dose given. Had he not been in that first trial, he probably wouldn't have had the opportunity to try 50 mg. because he is now the only patient receiving that low dose. He is the only patient who did not have to increase the dosage. And now the drug company does not even make a 50 mg. capsule. The lowest dose currently is 100 mg. So John takes a 100 mg. capsule once a day instead of 50 mg. twice per day. Since that dose worked so beautifully for him, I'm thankful he is not taking more than he needs to control his CLL. He has had no short term side effects or toxicity from CAL-101, but if any longterm issues develop, he will probably be at a lower risk because of his dosage. Marian started at 150 mg. twice a day and was able to decrease her dosage to 100 mg. twice per day. You may recall that she developed the side effect of lung inflammation and suffered a serious case of pneumonia in January 2011. But part of that ordeal was a result of her primary care physician diagnosing her with bronchitis instead of pneumonia. Therefore, she went untreated for pneumonia prior to Dr. Flinn admitting her in Nashville.
So many things could be different today. Marian could have died in January of 2011 had we not gotten her to Dr. Flinn in Nashville to be properly diagnosed and treated. She spent three weeks in the hospital and three nights in ICU. John would probably have undergone SCT by now and I'm thankful we don't know what his outcome or complications might have been. Instead, both John and his mom are enjoying smooth sailing and good quality of life on CAL-101. Instead of sitting for hours with an IV in their arm, they only have to take a pill and see Dr. Flinn every eight weeks to confirm their continued remissions. Marian says she feels so good it's scary (I have to remind her not to buy into superstitious thoughts). LOL. And John has been up to the challenge (physically and mentally) of a major move and taking over a new dealership. These are blessings I am so very thankful for. I never lose sight of the treasure each day is. Although I have my ups and downs, like everybody does, I am so aware of my blessings and humbled by God's goodness.
Although John still works hard (and probably always will), he has taken more time to smell the roses since he failed chemo a little over two years ago and regained his health with CAL-101. Since moving to West Virginia, we have spent more time doing fun things and enjoying the company of friends. Cancer is not something anyone hopes for, but there are always silver linings and lessons learned by going through life's storms. I've heard other patients talk about the perspective they gained through facing cancer and their mortality. I can see many ways that God has worked through our CLL journey to transform us and use us in the lives of others. And I live each day under the banner of Romans 8:28. I have seen the evidence of this promise (that God is working all things for our good) manifested in my life so many times. And I believe I will see further evidence in the future of what is unseen today.
I am enjoying a wonderful life. I've been saying this ever since I first met John, but I truly believe I am living the best years of my life right now. I know I am going to look back on these years with such fondness as I grow older. And I'm so thankful. If my life ended today, I have already been blessed so much more than I could ever deserve or dream of.
John has been receiving CAL-101 for 27 months. Marian's clinical trial began a little more than four months after John's. And they are both doing great! Blood and lymph nodes remain normal for each of them. And they are both feeling good. Although John still has minor fatigue at times and often falls asleep while trying to watch television at night, I have noticed that his energy level has improved since our move to West Virginia. I think being a Honda dealer again really agrees with him! We have made many wonderful new friends and we are both loving life in the mountains. I am not even dreading the snow as much as I thought I would be. (I'm sure I'll be tired of it by February, but it's a small price to pay for the beauty of four distinctly beautiful seasons and the mild summers.)
I often stop what I'm doing at random moments and just thank God for the life He has blessed us with. In February of 2010, John failed chemotherapy for his CLL. Had it not been for the phase one trial of CAL-101, we would have been facing a stem cell transplant. Only patients who had failed treatment or relapsed were eligible for that first clinical trial. So our disappointing results from FCR qualified him for the first round of study and he was able to start at the lowest dose given. Had he not been in that first trial, he probably wouldn't have had the opportunity to try 50 mg. because he is now the only patient receiving that low dose. He is the only patient who did not have to increase the dosage. And now the drug company does not even make a 50 mg. capsule. The lowest dose currently is 100 mg. So John takes a 100 mg. capsule once a day instead of 50 mg. twice per day. Since that dose worked so beautifully for him, I'm thankful he is not taking more than he needs to control his CLL. He has had no short term side effects or toxicity from CAL-101, but if any longterm issues develop, he will probably be at a lower risk because of his dosage. Marian started at 150 mg. twice a day and was able to decrease her dosage to 100 mg. twice per day. You may recall that she developed the side effect of lung inflammation and suffered a serious case of pneumonia in January 2011. But part of that ordeal was a result of her primary care physician diagnosing her with bronchitis instead of pneumonia. Therefore, she went untreated for pneumonia prior to Dr. Flinn admitting her in Nashville.
So many things could be different today. Marian could have died in January of 2011 had we not gotten her to Dr. Flinn in Nashville to be properly diagnosed and treated. She spent three weeks in the hospital and three nights in ICU. John would probably have undergone SCT by now and I'm thankful we don't know what his outcome or complications might have been. Instead, both John and his mom are enjoying smooth sailing and good quality of life on CAL-101. Instead of sitting for hours with an IV in their arm, they only have to take a pill and see Dr. Flinn every eight weeks to confirm their continued remissions. Marian says she feels so good it's scary (I have to remind her not to buy into superstitious thoughts). LOL. And John has been up to the challenge (physically and mentally) of a major move and taking over a new dealership. These are blessings I am so very thankful for. I never lose sight of the treasure each day is. Although I have my ups and downs, like everybody does, I am so aware of my blessings and humbled by God's goodness.
Although John still works hard (and probably always will), he has taken more time to smell the roses since he failed chemo a little over two years ago and regained his health with CAL-101. Since moving to West Virginia, we have spent more time doing fun things and enjoying the company of friends. Cancer is not something anyone hopes for, but there are always silver linings and lessons learned by going through life's storms. I've heard other patients talk about the perspective they gained through facing cancer and their mortality. I can see many ways that God has worked through our CLL journey to transform us and use us in the lives of others. And I live each day under the banner of Romans 8:28. I have seen the evidence of this promise (that God is working all things for our good) manifested in my life so many times. And I believe I will see further evidence in the future of what is unseen today.
I am enjoying a wonderful life. I've been saying this ever since I first met John, but I truly believe I am living the best years of my life right now. I know I am going to look back on these years with such fondness as I grow older. And I'm so thankful. If my life ended today, I have already been blessed so much more than I could ever deserve or dream of.
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