M.D. Anderson declared me to be in remission in 2016. Life is good, and I have had no further signs of disease. Thank you to all my family, friends, and doctors. Best wishes to you all.
Wednesday, December 27, 2023
2023 Update
Monday, April 29, 2013
I can't believe it's been over three years since my last post. I apologize to anyone who might have been following my blog who got the mistaken impression that the worst may have happened to me. It hasn't, I'm glad to say! I'll see if I can briefly summarize the last three years.
The rest of 2010 (the year of the last post) was okay, I think, but in 2011 things definitely took a turn for the worse. I developed MF patches and plaques on my calves and on my left wrist, and they slowly grew. I also began to have difficulty walking again. Treatment continued to be topical steroid cream and antifungal cream. Didn't help. Dr. Duvic then put me on oral Targretin, which she said was particularly effective for MF of the feet. I got a lot of relief for my feet, but the wrist and calf spots kept slowly growing. Some time around the middle of 2011, Dr. Duvic and her team began to try to persuade me to sign up for a drug trial she was in charge of running. Since I seemed to be making some progress with Targretin, I was reluctant to abandon it. However, by the end of the year, it seemed clear that the Tagretin just wasn't doing anything for the calves and wrist, so I signed on to the study. I had to go without the Targetin for three weeks to get it out of my system. They didn't want me taking anything other than the test drug in order to try to ensure that any change in my condition was due to the test drug. So in January 2012 I began to go to Houston every three weeks to get an infusion of Brentuximab vedotin. The actual infusions lasted 45 minutes to an hour, with me either in a bed or a chair. Although they referred to it as chemo, it had none of the immediate unpleasantness of my previous chemo treatments. Except for the first treatment, when they kept for an extra hour to make sure I was okay, we were able to immediately get in our car and head back home. I was to have up to 8 treatments, over about 6 months, at which time I would be evaluated for another possible 8 treatments. After the first treatment, my spots turned even redder than usual, which we had been told might happen. We took it as a sign that the drug was doing it's thing. It was. Those first months of treatment were astounding. As I recall, by some time in April my symptoms had been reduced by about 90%. The main side effect that I noticed was increasing fatigue as treatment progressed. Noticeable, but I continued most daily activities. At first I also had an increase in ocular migraines. I normally have one a year, at most. But at one point during treatment I had three or four in a short period of time. That stopped. I also had some intestinal upset. Otherwise, we just sat back and were amazed at the efficiency of the drug. Toward the end of spring, though, progress slowed. I completed the 8 rounds, and they approved me for 8 more, of which I completed four before they halted my participation in the study in October or November 2012, having decided that they drug had done what it was going to do for me. They pronounced me to be Stage 1A and in partial remission. My existing spots were knocked back about 95%, in my unscientific estimation, and during the course of treatment (and since) I have had no new spots develop, knock on wood. I had hoped for complete remission, but I'll take what I can get! I need to stress that this drug is still in the testing stages for MF. It is FDA-approved for use with three other lymphomas, but NOT MF. So as I understand it, you can't just go ask your doctor to treat you with this, yet. It still needs FDA approval for treating MF. Google "brentuximab" if you want to learn more about its mechanism of action. It' quite amazing.
Good health to all!
Mike
The rest of 2010 (the year of the last post) was okay, I think, but in 2011 things definitely took a turn for the worse. I developed MF patches and plaques on my calves and on my left wrist, and they slowly grew. I also began to have difficulty walking again. Treatment continued to be topical steroid cream and antifungal cream. Didn't help. Dr. Duvic then put me on oral Targretin, which she said was particularly effective for MF of the feet. I got a lot of relief for my feet, but the wrist and calf spots kept slowly growing. Some time around the middle of 2011, Dr. Duvic and her team began to try to persuade me to sign up for a drug trial she was in charge of running. Since I seemed to be making some progress with Targretin, I was reluctant to abandon it. However, by the end of the year, it seemed clear that the Tagretin just wasn't doing anything for the calves and wrist, so I signed on to the study. I had to go without the Targetin for three weeks to get it out of my system. They didn't want me taking anything other than the test drug in order to try to ensure that any change in my condition was due to the test drug. So in January 2012 I began to go to Houston every three weeks to get an infusion of Brentuximab vedotin. The actual infusions lasted 45 minutes to an hour, with me either in a bed or a chair. Although they referred to it as chemo, it had none of the immediate unpleasantness of my previous chemo treatments. Except for the first treatment, when they kept for an extra hour to make sure I was okay, we were able to immediately get in our car and head back home. I was to have up to 8 treatments, over about 6 months, at which time I would be evaluated for another possible 8 treatments. After the first treatment, my spots turned even redder than usual, which we had been told might happen. We took it as a sign that the drug was doing it's thing. It was. Those first months of treatment were astounding. As I recall, by some time in April my symptoms had been reduced by about 90%. The main side effect that I noticed was increasing fatigue as treatment progressed. Noticeable, but I continued most daily activities. At first I also had an increase in ocular migraines. I normally have one a year, at most. But at one point during treatment I had three or four in a short period of time. That stopped. I also had some intestinal upset. Otherwise, we just sat back and were amazed at the efficiency of the drug. Toward the end of spring, though, progress slowed. I completed the 8 rounds, and they approved me for 8 more, of which I completed four before they halted my participation in the study in October or November 2012, having decided that they drug had done what it was going to do for me. They pronounced me to be Stage 1A and in partial remission. My existing spots were knocked back about 95%, in my unscientific estimation, and during the course of treatment (and since) I have had no new spots develop, knock on wood. I had hoped for complete remission, but I'll take what I can get! I need to stress that this drug is still in the testing stages for MF. It is FDA-approved for use with three other lymphomas, but NOT MF. So as I understand it, you can't just go ask your doctor to treat you with this, yet. It still needs FDA approval for treating MF. Google "brentuximab" if you want to learn more about its mechanism of action. It' quite amazing.
Good health to all!
Mike
Saturday, January 2, 2010
The New Year
My only excuse for not having posted since June is laziness. Sorry.
There have been no big developments in my status since then. We've been back to Houston many times, of course, and the doctors seem fairly satisfied with my progress. Ideally, I would be cancer-free, but I am not. I still have a few lesions scattered around, most of which seem to be slowly getting better. Again, the doctors seem to think this is acceptable for the time being. The hope is that as my immune system slowly develops, it will do a better job of fighting the disease. We return to Houston soon for a series of tests and doctor appointments. That will be just after the one-year anniversary of my transplant, so it's a big milestone.
My energy level has gone up and down over the months, which is normal. I've been back at work for months now, working, on average, about three-fourths of the time. We still live with all of the hygienic and other restrictions, but things are so incredibly much better than they were a year ago that we count our blessings daily.
My thanks to all who have followed this blog and offered my wife and I much needed support and well-wishes. We wish you all a very happy 2010!
There have been no big developments in my status since then. We've been back to Houston many times, of course, and the doctors seem fairly satisfied with my progress. Ideally, I would be cancer-free, but I am not. I still have a few lesions scattered around, most of which seem to be slowly getting better. Again, the doctors seem to think this is acceptable for the time being. The hope is that as my immune system slowly develops, it will do a better job of fighting the disease. We return to Houston soon for a series of tests and doctor appointments. That will be just after the one-year anniversary of my transplant, so it's a big milestone.
My energy level has gone up and down over the months, which is normal. I've been back at work for months now, working, on average, about three-fourths of the time. We still live with all of the hygienic and other restrictions, but things are so incredibly much better than they were a year ago that we count our blessings daily.
My thanks to all who have followed this blog and offered my wife and I much needed support and well-wishes. We wish you all a very happy 2010!
Wednesday, June 17, 2009
We returned to Houston June 15 for appointments at MDACC that day and on the 17th.
On the 15th, we saw the physician assistant for my cardiologist for a followup for various heart tests I had taken previously. He said that my heart shows improvement as a result of the drug (coreg) that I've been taking to counteract the slight damage done by the chemo I had last summer. It's basically an electrical problem that can lead to arrhythmias (and worse, if untreated). In January I tested 45 to 50%, just below normal. Now I'm 50-55%, which is low normal. I believe the percentage represents the percentage of blood expelled from the left ventricle per contraction, but don't quote me.
The second appointment of the day was with my dermatologist, Dr. Duvic. This was the visit we were most worried about, because in the six or seven weeks since we'd last been there, I've had several more lesions appear. Other lesions that had been present at the last visit have faded or disappeared, but we just weren't sure how concerned we should be that new ones were still appearing. Fortunately, the doc says it's not at all unusual for me to still be developing some new lesions. After evaluating me, she said that I was maintaining about the same overall coverage as in April, so not to worry. That was a huge relief for us. She said that my immune system is still very far from being as strong as it can be, so, theoretically, it will be more efficient in the months and years to come in combating the disease.
Tuesday the 16th we had no appointments, so we went to Bayou Bend, the former home of Ima Hogg, daughter of Texas' first native-born governor, Jim Hogg. Interesting family and an interesting and beautiful place.
On the 17th they drew blood and gave me a full pulmonary test. I passed the pulmonary test, and later in the morning I had an appointment with the physician assistant for my bone marrow transplant doctor, who evaluated the blood tests for us. All the news was good. She reinforced Dr. Duvic's assertion that it wasn't unusual to still be cranking out new lesions.
So it was a pretty great visit, really. We'd been very apprehensive, but all our fears were allayed by the tests and the physicians' evaluations.
On the 15th, we saw the physician assistant for my cardiologist for a followup for various heart tests I had taken previously. He said that my heart shows improvement as a result of the drug (coreg) that I've been taking to counteract the slight damage done by the chemo I had last summer. It's basically an electrical problem that can lead to arrhythmias (and worse, if untreated). In January I tested 45 to 50%, just below normal. Now I'm 50-55%, which is low normal. I believe the percentage represents the percentage of blood expelled from the left ventricle per contraction, but don't quote me.
The second appointment of the day was with my dermatologist, Dr. Duvic. This was the visit we were most worried about, because in the six or seven weeks since we'd last been there, I've had several more lesions appear. Other lesions that had been present at the last visit have faded or disappeared, but we just weren't sure how concerned we should be that new ones were still appearing. Fortunately, the doc says it's not at all unusual for me to still be developing some new lesions. After evaluating me, she said that I was maintaining about the same overall coverage as in April, so not to worry. That was a huge relief for us. She said that my immune system is still very far from being as strong as it can be, so, theoretically, it will be more efficient in the months and years to come in combating the disease.
Tuesday the 16th we had no appointments, so we went to Bayou Bend, the former home of Ima Hogg, daughter of Texas' first native-born governor, Jim Hogg. Interesting family and an interesting and beautiful place.
On the 17th they drew blood and gave me a full pulmonary test. I passed the pulmonary test, and later in the morning I had an appointment with the physician assistant for my bone marrow transplant doctor, who evaluated the blood tests for us. All the news was good. She reinforced Dr. Duvic's assertion that it wasn't unusual to still be cranking out new lesions.
So it was a pretty great visit, really. We'd been very apprehensive, but all our fears were allayed by the tests and the physicians' evaluations.
Saturday, April 25, 2009
On April 14 we returned to Houston for tests and other appointments. The 14th was tests only -- CAT scan, bone marrow aspiration and biopsy, x-rays, and blood tests. Except for the blood tests, all of these were for a follow-up visit with the stem cell doctor on the 21st. On the 15th we saw Dr. Duvic. She basically said my skin looked pretty good, and she doesn't want to see me again until mid-June. She also removed some of what she thought was a squamous cell carcinoma on my forearm. (This week they told us that it is a squamous, and that I'll need to find a Mohs surgeon to finish the surgery. They think they can fix me up with a surgeon here in town without needing to return to Houston.) We also saw Dr. Plana, my cardiologist, and he ordered an echocardiogram and cholesterol tests.
We drove home on the 15th, and returned to Houston on the 21st. They did the echocardiogram, and I also got my quarterly infusion of Boniva. (I don't know if I've mentioned this before, but I'm involved in a Boniva study. Apparently bone loss is a big issue for transplantees. So I'm in a group taking Boniva along with Vit. D and calcium. Another group is just on D and calcium. They did a bone density on me before my first dose in February. They'll take others at six and twelve months.) Then we saw Dr. Hosing, my transplant doctor. She said the CAT scans looked good, as did the x-rays. Unfortunately, the marrow analyses still weren't in, even though they were done a whole week earlier. We still haven't heard. But the news we did get was all good, so we were pretty happy.
We drove home on the 15th, and returned to Houston on the 21st. They did the echocardiogram, and I also got my quarterly infusion of Boniva. (I don't know if I've mentioned this before, but I'm involved in a Boniva study. Apparently bone loss is a big issue for transplantees. So I'm in a group taking Boniva along with Vit. D and calcium. Another group is just on D and calcium. They did a bone density on me before my first dose in February. They'll take others at six and twelve months.) Then we saw Dr. Hosing, my transplant doctor. She said the CAT scans looked good, as did the x-rays. Unfortunately, the marrow analyses still weren't in, even though they were done a whole week earlier. We still haven't heard. But the news we did get was all good, so we were pretty happy.
Saturday, April 4, 2009
We're Back Home!
We got back to our hometown this afternoon (Saturday) about 1. We're pretty much wiped out. I think that has more to do with the emotional release of getting back than with the effort involved. We're extremely happy to be back, and I expect we'll be even happier tomorrow after a good night's sleep. Thanks again to Susan, our house-sitter, who kept the place looking great. It was a tremendous relief to feel that our house was in good hands. And thanks again to all who sent messages and thoughts of goodwill during our Houston sojourn.
Tuesday, March 31, 2009
I had a question in the comments to one of the posts about second- and third-hand smoke. I'm very strongly urged by the survivorship nurse to avoid both. One consequence of the chemo and radiation that I've undergone in order to kill as much of my cancer as possible (and to wipe out my original immune system) is that I'm forever more vulnerable to cancer than the average person. So avoiding the known carcinogens in tobacco smoke is pretty much a no-brainer. If, like me until a few weeks ago, you're unfamiliar with the concept of third-hand smoke, it's the residue that smokers have on their breath and clothing and, for smokers who smoke indoors, the residue in the carpet and furniture of their homes.
Subscribe to:
Posts (Atom)