One of my loyal readers emailed me yesterday saying she misses seeing frequent updates to my blog, which was a nice way of telling me to get off my lazy ass and start writing. Guilty as charged! I don't why I took this little vacation. It's not that I'm so busy that I can't fit writing this blog into my crammed schedule of meetings and social events. As a matter of fact, as I look over my calendar, it is nearly blank, sad to say. No, just a little laziness and procrastination. Over the years, I have elevated the process of procrastinating to a fine art, sometimes to my chagrin. In any case, I'm back.
When we last left the saga of my thrilling adventures, I had just left the orthopedic doctor's office with a shot of cortisone in my right knee. Wow! That's pretty good stuff. My knee immediately felt better, and it still does. I can now walk and negotiate stairs with minimal pain. I even walked a 9-hole golf course a few days ago with no discernible aftereffects. It's still not perfect, but it's "100% better", as they say.
Now that I think of it, I'm not sure what 100% better is supposed to mean. Better than what? For example, if I started out only 5% good and got 100% better, I would still only be 10% good, right? Conversely, if I started out 90% good, I'd only have to get better by 11.1% to be perfect again. Maybe I just have an odd way of looking at things. Anyway, I digress.
By the way, a cortisone shot in the knee is no walk in the park. However, on a relative scale, it sure beats the shit out a bone marrow biopsy. I'm not sure how long this cortisone shot will last. The physicians assistant said it could last anywhere from 3 weeks to 3 years. Typically, I guess 6 months would be a reasonable expectation. After that, I don't know what might come next. In the mean time, I'll try not to do anything too strenuous with it.
I'm feeling really good, although I still sleep more than I used to. I've pretty much adjusted to that. Yesterday I got my flu shot and next Monday, I go back to the Farber for another monthly checkup and Zometa infusion. That will begin the 15th month of my clinical trial maintenance therapy with the 5 mg of Revlimid daily. If I can stay in remission for another 22 months, then I can go off the Rev completely, and maybe the Zometa as well. I'm looking forward to that. I'm very upbeat about how everything has gone so far. In fact, as a testament to my optimism, I just took the plunge and renewed my AARP membership for another 5 years!
The writing seminar at the Farber has started up again for the fall. Unfortunately, I missed the September workshop because of my knee appointment. I hope to be able to attend the October one on the 28th. I could use a shot in the arm to bolster my inspiration to keep writing..
Tuesday, October 1, 2013
Monday, September 16, 2013
Knee Problems
In my last post, I mentioned the sudden onset of a problem with my
right knee for no reason at all. So I had X-rays and an MRI done, and last week I got the
results. The good news was that all the ligaments are intact. The bad
news was that almost everything else sucks.
The findings were that I have maceration and tears in the medial (inner) miniscus that go from back to front, a possible tear in the lateral (outer) miniscus, joint effusion (aka water on the knee), Baker's cyst and a loose cartilage body behind the knee, and severe osteoarthritis in all 3 joints, with the most serious being chondromalacia (similar to runner's knee). This latter condition is apparent in the attached X-ray picture, which shows that I have almost no cartilage between my knee cap and femur. Normally, there should be about a centimeter of spacing there. Now the bones are practically rubbing together. Creak!
Looking at these findings, I was wondering how I could walk at all! Shouldn't I be in a wheel chair? Surprisingly, however, I've been pretty mobile. I have some pain, mostly going up and down stairs, but especially after walking for a round of golf (I refuse to rent a cart!). However, the pain has been tolerable, and I haven't bothered to take any pain relievers for it.
I was kind of disappointed that this happened, because I had been harboring secret thoughts about trying to get in shape to run in a 5K event some time next year in a cancer fund raiser for Multiple Myeloma or Dana Farber. I had started combining walking with jogging on the treadmill at the gym early in the summer, but I kind of dropped out of the gym over the last couple of months. I was planning to try to get back in shape again once fall rolled around, but ironically, this happened out of the blue, without my putting any stress at all on the knee. Go figure.
Today I met with my osteopathic surgeon, Dr. Mattheos. He was great at treating me after I fell off the ladder last year, although it hurt like hell when he yanked my dislocated finger back into place. Grrrr! But I have forgiven him for that. He seemed a little surprised that I wasn't in more pain than I was. My knee actually feels pretty good, with most of the pain on the inner side where the main meniscus tear is. He explained that he could do arthroscopic surgery to repair the tear, but that could actually make things worse, which was his way of telling me that my knee is pretty fucked up. The main problem is my arthritis, and cartilage repair surgery might actually exacerbate that.
The upshot is that he recommended a cortisone shot to reduce the swelling and let the cartilage try to heal naturally. So that's what I got. Who knows if that will work, but it feels pretty good right now. I also got a prescription for some PT, which I may or may not use. I have a follow-up visit in 4 weeks to see how it's progressing. He thinks it is possible that I could get back to normal activity. Who knows? There might be a 5K run in my future yet. But I don't think I will try running anytime soon.
 |
| Knee X-ray showing severe arthritis |
The findings were that I have maceration and tears in the medial (inner) miniscus that go from back to front, a possible tear in the lateral (outer) miniscus, joint effusion (aka water on the knee), Baker's cyst and a loose cartilage body behind the knee, and severe osteoarthritis in all 3 joints, with the most serious being chondromalacia (similar to runner's knee). This latter condition is apparent in the attached X-ray picture, which shows that I have almost no cartilage between my knee cap and femur. Normally, there should be about a centimeter of spacing there. Now the bones are practically rubbing together. Creak!
Looking at these findings, I was wondering how I could walk at all! Shouldn't I be in a wheel chair? Surprisingly, however, I've been pretty mobile. I have some pain, mostly going up and down stairs, but especially after walking for a round of golf (I refuse to rent a cart!). However, the pain has been tolerable, and I haven't bothered to take any pain relievers for it.
I was kind of disappointed that this happened, because I had been harboring secret thoughts about trying to get in shape to run in a 5K event some time next year in a cancer fund raiser for Multiple Myeloma or Dana Farber. I had started combining walking with jogging on the treadmill at the gym early in the summer, but I kind of dropped out of the gym over the last couple of months. I was planning to try to get back in shape again once fall rolled around, but ironically, this happened out of the blue, without my putting any stress at all on the knee. Go figure.
Today I met with my osteopathic surgeon, Dr. Mattheos. He was great at treating me after I fell off the ladder last year, although it hurt like hell when he yanked my dislocated finger back into place. Grrrr! But I have forgiven him for that. He seemed a little surprised that I wasn't in more pain than I was. My knee actually feels pretty good, with most of the pain on the inner side where the main meniscus tear is. He explained that he could do arthroscopic surgery to repair the tear, but that could actually make things worse, which was his way of telling me that my knee is pretty fucked up. The main problem is my arthritis, and cartilage repair surgery might actually exacerbate that.
The upshot is that he recommended a cortisone shot to reduce the swelling and let the cartilage try to heal naturally. So that's what I got. Who knows if that will work, but it feels pretty good right now. I also got a prescription for some PT, which I may or may not use. I have a follow-up visit in 4 weeks to see how it's progressing. He thinks it is possible that I could get back to normal activity. Who knows? There might be a 5K run in my future yet. But I don't think I will try running anytime soon.
Friday, September 6, 2013
One of Those Days
Today is one of those days.
Last week I suddenly had a pain in my right knee while just walking around the house, so I went to the doctor. He sent me to have an x-ray and MRI, which I went to the local hospital for on Tuesday. In the meantime, I have been hobbling around with a knee bandage for the last week. I played 9 holes of golf yesterday walking (I'm too proud and cheap to take a cart), so the knee didn't feel so good today. This morning, my doctor's office called to report that I have a cartilage tear in my miniscus. Great! So I have scheduled an appointment with an orthopedic surgeon to see what happens next. That started my day.
My meds had run out, so I checked with Express Scripts this morning and was told I couldn't get them until October. So I called my doctor's office and had an emergency supply sent to the local pharmacy to last me for a while. When I went to pick them up, I had a flat tire in the parking lot. While trying to change the tire, the lock nut was on so tight that I broke it trying to get it off. So I called AAA (not AA), who came about 45 minutes later, and he couldn't get it off either. So he put enough air in the tire for me to get to the local Midas, where they had to force it off with an air hammer. By then, I realized that I needed new tires, so they put on the spare and I drove to New Hampshire to buy new tires. But in my brute strength (yeah right!) to try to force off the lock nut, I had also broken the key to the lock nut, so they had to also forcibly remove and destroy all the other lock nuts before installing my new tires. No more lock nuts. If anyone wants to steal my tires, just come and get them! After about two hours and a thousand dollars later, I was finally back on the road. That was fun.
When I finally got home about 6:30 after my odyssey adventure to pick up my emergency prescription, Gretchen informed me that they had actually been delivered by Express Scripts last week, but she had put them aside thinking that they were hers. Oops. Some days are like this. Today is one of those days. You just have to laugh about it.
I have been very lazy about updating this blog. I should have updated this days ago, but I wasn't feeling very creative. I went to the Farber on Monday for my monthly checkup, and things are still good. I didn't want to put up a blog post just saying that everything was still fine. Yawn.
Anyway, positive changes include my white blood cell count up significantly to 4.7, and my RBC, HCT, and Hgb have all increased, indicating that my anemia is alleviating somewhat. The only negative number is my bilirubin, which jumped to 1.7 (normal is less than 1.2). This can be indicative of potential liver problems. Hmmm. I wonder if that might have anything to do with the prodigious amount of wine that I consumed during our baccanalian Labor Day weekend bash. I'm not sure I remember all of it, but we had a great time! Oh yes, and don't tell Dr. R.
Last week I suddenly had a pain in my right knee while just walking around the house, so I went to the doctor. He sent me to have an x-ray and MRI, which I went to the local hospital for on Tuesday. In the meantime, I have been hobbling around with a knee bandage for the last week. I played 9 holes of golf yesterday walking (I'm too proud and cheap to take a cart), so the knee didn't feel so good today. This morning, my doctor's office called to report that I have a cartilage tear in my miniscus. Great! So I have scheduled an appointment with an orthopedic surgeon to see what happens next. That started my day.
My meds had run out, so I checked with Express Scripts this morning and was told I couldn't get them until October. So I called my doctor's office and had an emergency supply sent to the local pharmacy to last me for a while. When I went to pick them up, I had a flat tire in the parking lot. While trying to change the tire, the lock nut was on so tight that I broke it trying to get it off. So I called AAA (not AA), who came about 45 minutes later, and he couldn't get it off either. So he put enough air in the tire for me to get to the local Midas, where they had to force it off with an air hammer. By then, I realized that I needed new tires, so they put on the spare and I drove to New Hampshire to buy new tires. But in my brute strength (yeah right!) to try to force off the lock nut, I had also broken the key to the lock nut, so they had to also forcibly remove and destroy all the other lock nuts before installing my new tires. No more lock nuts. If anyone wants to steal my tires, just come and get them! After about two hours and a thousand dollars later, I was finally back on the road. That was fun.
When I finally got home about 6:30 after my odyssey adventure to pick up my emergency prescription, Gretchen informed me that they had actually been delivered by Express Scripts last week, but she had put them aside thinking that they were hers. Oops. Some days are like this. Today is one of those days. You just have to laugh about it.
I have been very lazy about updating this blog. I should have updated this days ago, but I wasn't feeling very creative. I went to the Farber on Monday for my monthly checkup, and things are still good. I didn't want to put up a blog post just saying that everything was still fine. Yawn.
Anyway, positive changes include my white blood cell count up significantly to 4.7, and my RBC, HCT, and Hgb have all increased, indicating that my anemia is alleviating somewhat. The only negative number is my bilirubin, which jumped to 1.7 (normal is less than 1.2). This can be indicative of potential liver problems. Hmmm. I wonder if that might have anything to do with the prodigious amount of wine that I consumed during our baccanalian Labor Day weekend bash. I'm not sure I remember all of it, but we had a great time! Oh yes, and don't tell Dr. R.
Monday, August 26, 2013
Squirrels
I hate squirrels. They have bedeviled me for years as we have tried to feed the birds around our houses. We resorted to various squirrel defenses over the years with limited success. One of the most fun ones was a bird feeder that had a battery-operated spinner that would throw the squirrels off the feeder when they stepped on it. It was fun to see them tossed 10 feet or so to the ground, but in the end, they would always win. You see, squirrels are very persistent, and batteries only last so long. So we got to see the squirrels happily throw them selves around until the battery died and then gorge themselves at will. Damn!
At our current house, our bird feeder has a lockout which closes the feeder holes if anything heavy such as a squirrel lands on it, so it seem so work fairly well, although the squirrels don't give up. My new nemeses are the raccoons, which are much more voracious than the squirrels. They simply pull the feeder up from our deck railing with their paws and empty it in a single night. So over the last few years, my emnity has been focused on raccoons rather than squirrels. I won't go into details about how I have battled these perfidious creatures, but to suffice it to say, I have come to some mild accommodation with the squirrels.
Tonight, as I sat on on our Adirondack chair overlooking the Merrimac River at sunset, I noticed a squirrel under my chair. Our cat, Sophie, was lying nonchalantly nearby just observing the squirrel. I saw that it was a baby squirrel, and it kept running back and forth under my chair. After a while, I looked down at it, and it was just looking up at me. How cute! What? I can't believe what I did next. I actually put my hand down and petted this cute little creature. What has come over me? Am I mad? It scampered off into the woods then, but I was sitting there thinking, what the f*ck, I hate these things, don't I? Well, now I don't know what I think. I think perhaps that age has a way of mellowing one into taking a lot of sharp edges off of some of the strong opinions that one once held. Not completely however. I still hate raccoons.
We just came back from a wonderful visit with my college friend, Bob, in Seattle. I'm still feeling really good, although I'm sleeping a lot. Next Tuesday, I go in to the Farber for my monthly checkup and Zometa infusion. I'm keeping my fingers crossed that I will still be in remission. So far, so good.
At our current house, our bird feeder has a lockout which closes the feeder holes if anything heavy such as a squirrel lands on it, so it seem so work fairly well, although the squirrels don't give up. My new nemeses are the raccoons, which are much more voracious than the squirrels. They simply pull the feeder up from our deck railing with their paws and empty it in a single night. So over the last few years, my emnity has been focused on raccoons rather than squirrels. I won't go into details about how I have battled these perfidious creatures, but to suffice it to say, I have come to some mild accommodation with the squirrels.
Tonight, as I sat on on our Adirondack chair overlooking the Merrimac River at sunset, I noticed a squirrel under my chair. Our cat, Sophie, was lying nonchalantly nearby just observing the squirrel. I saw that it was a baby squirrel, and it kept running back and forth under my chair. After a while, I looked down at it, and it was just looking up at me. How cute! What? I can't believe what I did next. I actually put my hand down and petted this cute little creature. What has come over me? Am I mad? It scampered off into the woods then, but I was sitting there thinking, what the f*ck, I hate these things, don't I? Well, now I don't know what I think. I think perhaps that age has a way of mellowing one into taking a lot of sharp edges off of some of the strong opinions that one once held. Not completely however. I still hate raccoons.
We just came back from a wonderful visit with my college friend, Bob, in Seattle. I'm still feeling really good, although I'm sleeping a lot. Next Tuesday, I go in to the Farber for my monthly checkup and Zometa infusion. I'm keeping my fingers crossed that I will still be in remission. So far, so good.
Monday, August 19, 2013
More Research on MGUS/MM Correlation with Other Diseases
A couple of recent articles have highlighted Lyme disease. One article appeared on the front page of yesterday's Sunday Globe. It traces the sad history of one woman who suffered long-term debilitating effects of Lyme disease and was confronted by a medical community which was dismissive and in denial. Familiar story? Then today, the CDC announced that the actual incidence of Lyme is about 10 times more prevalent than previously thought. They now estimate about 300,000 people a year get Lyme. Of course, the article then goes on to suggest preventive measures to reduce the incidence of tick bites. That's nice, but what about doing something about the ones who get bit? No suggestions there. It makes me want to go into a closet, close the door, and let out an inarticulate scream at the top of my lungs.
My last post generated several responses from MM or MGUS patients who have suffered very similar patterns of previous immune system symptoms that I experienced from my untreated Lyme disease. It's disturbing to read how dismissive the medical establishment has been of their (and my) plights. Of course, several anecdotal situations such as these don't constitute evidence that there is a statistical correlation between any of these various autoimmune diseases or infections and myeloma.
I've done a little further online research to uncover any studies that may have addressed this issue. One of the studies analyzing the association between a number of diseases and MGUS was reported by the respected myeloma specialist, Dr. Vincent Rajkumar of the Mayo Clinic. The study included a lot of Minnesota MGUS patients. Here is a YouTube video on this study: Rajkumar video. For the most part, his study dismissed most diseases as not being correlated with MGUS. His conclusion was that any association between certain diseases, such as Rheumatoid Arthritis (RA) and Lupus, was probably incidental. However, when I accessed the full paper, I noticed that Lyme disease was not one of the specific infections investigated. This was a little disappointing, especially since Minnesota is one of the hot beds of Lyme disease.
On the other hand, another well-respected myeloma expert, Dr. James Berenson, has a different take on this. In his short YouTube video, Berenson video, he acknowledges a correlation between the autoimmune disorders RA and Lupus with MGUS. Jeez, I wish these guys would talk to each other.
The most interesting study that I have come across is a Swedish study that appeared in the journal Blood in December, 2011. This article concluded that a personal and family history of immune-related conditions increase the risk of plasma cell disorders. Here is a link to the paper:
http://bloodjournal.hematologylibrary.org/content/118/24/6284.full
In this large population study, they analyzed over 19,000 MM patients and over 5,000 MGUS patients, along with nearly 100,000 control subjects. They studied the association of a variety immune-related conditions with both MGUS and MM. They addressed four different categories: 1) personal history of autoimmune disease, 2) family history of autoimmune disease, 3) personal history of infections, and 4) personal history of inflammatory conditions.
For those with personal history of autoimmune disease where the autoantibodies are detectable (such as RA and Lupus), there was significant correlation with MGUS, but not MM. (Score one for Berenson!). For those where the autoantibodies are not detectable (such as hemolytic anemia, polymyalgia rheumatica, and giant cell arteritis), a significantly elevated risk of MM was found. Interestingly, there was a negative correlation between RA and MM, unlike with MGUS, although the authors noted that other studies have shown either neutral or a positive correlation between RA and MM.
It was found that a family history of autoimmune disease was associated with a significantly increased risk of MGUS, but not MM.
I was particularly interested in the results for those with a personal history of infections. Overall, infections were associated with a significantly increased risk of both MM and MGUS! A history of pneumonia, septicemia, herpes zoster (shingles), infectious mononucleosis, sinusitis, meningitis, and myocarditis was associated with a significantly increased risk of MM. Many more infections were highly associated with MGUS. One of the highest positive correlations between prior infections and MGUS was Lyme disease! (Interestingly, and somewhat puzzlingly, they did not observe a strong correlation between Lyme disease and MM.)
In the final category, inflammatory conditions were associated with a significantly increased risk of subsequent MGUS, but not MM.
In the authors' discussion, I found the following passage to be of particular interest: "...certain infections and inflammatory conditions can trigger the development of MGUS or MM. Approximately one-half of MGUS patients have clonal plasma cells carrying translocations that involve a locus considered to be of importance for initiation and support of clonal proliferation. It has previously been proposed that infections could be the trigger event for these translocations and thereby generate clonal proliferation, and our findings support this." Wow! Could it be that my t(4;14) translocation was in part triggered by the long-term effect of chronic Lyme disease on my immune system? It sure seems plausible.
The more I look into this, the more I become convinced that assaults on the immune system from various causes, including chronic Lyme disease, lead to elevated risk of subsequently developing MGUS and/or MM.
My last post generated several responses from MM or MGUS patients who have suffered very similar patterns of previous immune system symptoms that I experienced from my untreated Lyme disease. It's disturbing to read how dismissive the medical establishment has been of their (and my) plights. Of course, several anecdotal situations such as these don't constitute evidence that there is a statistical correlation between any of these various autoimmune diseases or infections and myeloma.
I've done a little further online research to uncover any studies that may have addressed this issue. One of the studies analyzing the association between a number of diseases and MGUS was reported by the respected myeloma specialist, Dr. Vincent Rajkumar of the Mayo Clinic. The study included a lot of Minnesota MGUS patients. Here is a YouTube video on this study: Rajkumar video. For the most part, his study dismissed most diseases as not being correlated with MGUS. His conclusion was that any association between certain diseases, such as Rheumatoid Arthritis (RA) and Lupus, was probably incidental. However, when I accessed the full paper, I noticed that Lyme disease was not one of the specific infections investigated. This was a little disappointing, especially since Minnesota is one of the hot beds of Lyme disease.
On the other hand, another well-respected myeloma expert, Dr. James Berenson, has a different take on this. In his short YouTube video, Berenson video, he acknowledges a correlation between the autoimmune disorders RA and Lupus with MGUS. Jeez, I wish these guys would talk to each other.
The most interesting study that I have come across is a Swedish study that appeared in the journal Blood in December, 2011. This article concluded that a personal and family history of immune-related conditions increase the risk of plasma cell disorders. Here is a link to the paper:
http://bloodjournal.hematologylibrary.org/content/118/24/6284.full
In this large population study, they analyzed over 19,000 MM patients and over 5,000 MGUS patients, along with nearly 100,000 control subjects. They studied the association of a variety immune-related conditions with both MGUS and MM. They addressed four different categories: 1) personal history of autoimmune disease, 2) family history of autoimmune disease, 3) personal history of infections, and 4) personal history of inflammatory conditions.
For those with personal history of autoimmune disease where the autoantibodies are detectable (such as RA and Lupus), there was significant correlation with MGUS, but not MM. (Score one for Berenson!). For those where the autoantibodies are not detectable (such as hemolytic anemia, polymyalgia rheumatica, and giant cell arteritis), a significantly elevated risk of MM was found. Interestingly, there was a negative correlation between RA and MM, unlike with MGUS, although the authors noted that other studies have shown either neutral or a positive correlation between RA and MM.
It was found that a family history of autoimmune disease was associated with a significantly increased risk of MGUS, but not MM.
I was particularly interested in the results for those with a personal history of infections. Overall, infections were associated with a significantly increased risk of both MM and MGUS! A history of pneumonia, septicemia, herpes zoster (shingles), infectious mononucleosis, sinusitis, meningitis, and myocarditis was associated with a significantly increased risk of MM. Many more infections were highly associated with MGUS. One of the highest positive correlations between prior infections and MGUS was Lyme disease! (Interestingly, and somewhat puzzlingly, they did not observe a strong correlation between Lyme disease and MM.)
In the final category, inflammatory conditions were associated with a significantly increased risk of subsequent MGUS, but not MM.
In the authors' discussion, I found the following passage to be of particular interest: "...certain infections and inflammatory conditions can trigger the development of MGUS or MM. Approximately one-half of MGUS patients have clonal plasma cells carrying translocations that involve a locus considered to be of importance for initiation and support of clonal proliferation. It has previously been proposed that infections could be the trigger event for these translocations and thereby generate clonal proliferation, and our findings support this." Wow! Could it be that my t(4;14) translocation was in part triggered by the long-term effect of chronic Lyme disease on my immune system? It sure seems plausible.
The more I look into this, the more I become convinced that assaults on the immune system from various causes, including chronic Lyme disease, lead to elevated risk of subsequently developing MGUS and/or MM.
Thursday, August 15, 2013
LInk between Lyme and IgA MM?
I've beaten on this poor horse before, but I don't think it's dead yet. So I'm going to whack away some more.
I just got a comment from someone with MGUS (Monoclonal Gammopathy of Undetermined Significance) who responded to my previous June 10 post about Lyme Disease: More on Lyme. This person suffered from Lyme Disease in 2011, which went untreated for months, until the symptoms became significant. She (I think it is a she, but I'm not sure, since the post response was anonymous) finally got on some serious antibiotics, which brought the symptoms under control. But then in 2012, she was diagnosed with IgA MGUS.
This is a familiar story. It's my story, complete with the IgA diagnosis. She wonders if there is any connection between Lyme and MGUS/MM, particularly the IgA type. Hello! In her comment, she makes a rather serious accusation, and I quote, "one of the oncolog i saw said they know amongst themselves that lyme can trigger mgus but since lyme is so politicized and polarized they all keep their mouths shut while people suffer." Wow! I really hope this is not the case, but based on my past experience with the medical community on Lyme, it wouldn't surprise me at all.
As you know from reading my past blog posts, I have been fixated on the possible connection between Lyme Disease and myeloma for a long time. The commenter asked a pertinent question that I have been asking myself for a while: "I have wondered whether the assault on my immune triggered the IGA MGUS that I have or whether I had the iga mgus first and the lyme made it express itself when attacked." I have a gut feeling that contracting Lyme Disease suppresses the immune system to the point that any latent monoclonal gammopathy might be unleashed. My blog commenter theorizes that it might specifically trigger IgA-type gammopathy. I don't know. Maybe so.
I have a favor to ask of those reading my blog. If any of you have contracted MGUS, SMM or MM, I would appreciate it is you could respond either to my blog or directly to me by email (wfohalloran@gmail.com) whether you have ever previously had Lyme Disease or suffered from undiagnosed Lyme Disease type symptoms prior to your diagnosis. Please include your type of gammopathy (IgG, IgA, etc.). This is an informal survey, as I'm trying to determine if there is any discernible pattern that would connect Lyme to MGUS, SMM, or MM. Any anecdotal stories would be of interest. I would like to compile some information that might possibly shed some light on this issue.
Thank you in advance for your cooperation. I promise to keep any information you send me strictly confidential. What happens in Vegas stays in Vegas!
I just got a comment from someone with MGUS (Monoclonal Gammopathy of Undetermined Significance) who responded to my previous June 10 post about Lyme Disease: More on Lyme. This person suffered from Lyme Disease in 2011, which went untreated for months, until the symptoms became significant. She (I think it is a she, but I'm not sure, since the post response was anonymous) finally got on some serious antibiotics, which brought the symptoms under control. But then in 2012, she was diagnosed with IgA MGUS.
This is a familiar story. It's my story, complete with the IgA diagnosis. She wonders if there is any connection between Lyme and MGUS/MM, particularly the IgA type. Hello! In her comment, she makes a rather serious accusation, and I quote, "one of the oncolog i saw said they know amongst themselves that lyme can trigger mgus but since lyme is so politicized and polarized they all keep their mouths shut while people suffer." Wow! I really hope this is not the case, but based on my past experience with the medical community on Lyme, it wouldn't surprise me at all.
As you know from reading my past blog posts, I have been fixated on the possible connection between Lyme Disease and myeloma for a long time. The commenter asked a pertinent question that I have been asking myself for a while: "I have wondered whether the assault on my immune triggered the IGA MGUS that I have or whether I had the iga mgus first and the lyme made it express itself when attacked." I have a gut feeling that contracting Lyme Disease suppresses the immune system to the point that any latent monoclonal gammopathy might be unleashed. My blog commenter theorizes that it might specifically trigger IgA-type gammopathy. I don't know. Maybe so.
I have a favor to ask of those reading my blog. If any of you have contracted MGUS, SMM or MM, I would appreciate it is you could respond either to my blog or directly to me by email (wfohalloran@gmail.com) whether you have ever previously had Lyme Disease or suffered from undiagnosed Lyme Disease type symptoms prior to your diagnosis. Please include your type of gammopathy (IgG, IgA, etc.). This is an informal survey, as I'm trying to determine if there is any discernible pattern that would connect Lyme to MGUS, SMM, or MM. Any anecdotal stories would be of interest. I would like to compile some information that might possibly shed some light on this issue.
Thank you in advance for your cooperation. I promise to keep any information you send me strictly confidential. What happens in Vegas stays in Vegas!
Friday, August 9, 2013
Chemo Brain
For a number of months now, Gretchen has suggested that I am suffering from Chemo Brain. Well, what does she know? Pshaw! Up until now, I have dismissed her suggestions as being somewhat unwarranted.
However, there have been a number of recent incidents that have set me to wondering. Maybe I do have Chemo Brain. Chemo Brain is a descriptor covering a broad collection of symptoms of those who have undergone chemotherapy, such as myself. They usually involve memory loss, difficulty concentrating, difficulty multitasking, being disorganized, etc.
Something happened today that could be a symptom. We have an electric Sunsetter awning over our deck that protects us from both sun and rain. It was one of the first things we got when we bought our house about 10 years ago, and it has been a wonderful asset. We use it almost constantly. Well, today it stopped working. Hmmm. This has happened before, so I was pretty sure about the cause. Any outdoor outlet must be GFCI protected. However, the outlet on the deck is not a GFCI outlet, but I was 100% sure that this outlet was coupled with the GFCI outlet in the upstairs bathroom. I checked that outlet and found it wasn't working properly, as I couldn't test or reset it. Aha! So I went to the hardware store and got a new GFCI outlet for the bathroom, confident that this would solve the problem.
I won't go into the details of my installation process. Needless to say, I decided not to spend a half hour or so trying to run repeatedly from the basement to the second floor to find what circuit breaker the outlet was on, so I decided to do it while it was live. For the most part it worked fine, although I did get a jolt once (ouch!). Anyway, I got the new GFCI outlet installed. Problem solved, right? NOT!
OK, now what? I scratched my head for a while, checked wiring in the basement, rewired the outlet on the deck, all with no results. I was crestfallen. (I want you to take a minute to think about how I must have looked and felt in my crestfallen state.) I mean it's really important to us that this awning works. We had to leave the house because a potential buyer was coming to see it. Just before leaving, I went into the downstairs half bath and noticed that the GFCI outlet that I had recently installed there had been tripped and the light was on. Could this be the problem? I reset the outlet and went out to check the awning. Voila! It worked! All's well that ends well, right?
Maybe not. Now my brain is very confused. I was absolutely sure that the GFCI outlet controlling the awning was in the upstairs bath. How could I be so wrong? This is very disturbing to me. When one thing that I am absolutely sure of turns out to be wrong, what about all the other things that I think I am sure of? I think I am sure that I cooked pork chops for dinner last night, but maybe we actually went out and had a pizza. How am I to really know? There seems to be a blurring between memory and reality that is hard to fathom.
This is only one instance. Gretchen has been telling me recently about things she says I have said that I have no memory of saying. My first impulse is to deny having said whatever it was (unless it was something quite brilliant, which never happens). But maybe she's right. Maybe my memory is getting a bit foggy. Shit! Maybe I need to record all my conversations to be able to keep the record straight. That would really suck though. I don't ever want to have to go there. A journal maybe? I don't know.
And another thing. I usually tend to be rather controlled and am seldom clumsy, unlike Gretchen, who often drops or breaks things. Until recently, that is. A few days ago, I knocked an empty glass off our counter and it smashed on the floor. OK, that's one. The next day at a restaurant in Newburyport, I knocked over my wine glass, spilling it spectacularly all over myself, the floor, and diners at the next table. Really cool. That's two. Then today, I kicked over another glass and broke it. That's three. WTF? I now consider myself a spastic. Oh yes, and tonight while weeding in the yard, I lost my balance and fell into a rose bush. (The scratches are healing just fine, thank you.) I don't know if that couples in with the Chemo Brain, but those are just more disturbing recent symptoms that don't make me too happy.
As you know from my last post, my medical condition continues to be excellent. All my test results (except anemia) are great. However, there appear to be some mental (and perhaps physical) deficiencies that I have to deal with. With Gretchen's brain damage from her accident, she also has lingering deficiencies to deal with. Hopefully, we can help each other through these times, and it will all work out for the best for both of us. Let's hope.
However, there have been a number of recent incidents that have set me to wondering. Maybe I do have Chemo Brain. Chemo Brain is a descriptor covering a broad collection of symptoms of those who have undergone chemotherapy, such as myself. They usually involve memory loss, difficulty concentrating, difficulty multitasking, being disorganized, etc.
Something happened today that could be a symptom. We have an electric Sunsetter awning over our deck that protects us from both sun and rain. It was one of the first things we got when we bought our house about 10 years ago, and it has been a wonderful asset. We use it almost constantly. Well, today it stopped working. Hmmm. This has happened before, so I was pretty sure about the cause. Any outdoor outlet must be GFCI protected. However, the outlet on the deck is not a GFCI outlet, but I was 100% sure that this outlet was coupled with the GFCI outlet in the upstairs bathroom. I checked that outlet and found it wasn't working properly, as I couldn't test or reset it. Aha! So I went to the hardware store and got a new GFCI outlet for the bathroom, confident that this would solve the problem.
I won't go into the details of my installation process. Needless to say, I decided not to spend a half hour or so trying to run repeatedly from the basement to the second floor to find what circuit breaker the outlet was on, so I decided to do it while it was live. For the most part it worked fine, although I did get a jolt once (ouch!). Anyway, I got the new GFCI outlet installed. Problem solved, right? NOT!
OK, now what? I scratched my head for a while, checked wiring in the basement, rewired the outlet on the deck, all with no results. I was crestfallen. (I want you to take a minute to think about how I must have looked and felt in my crestfallen state.) I mean it's really important to us that this awning works. We had to leave the house because a potential buyer was coming to see it. Just before leaving, I went into the downstairs half bath and noticed that the GFCI outlet that I had recently installed there had been tripped and the light was on. Could this be the problem? I reset the outlet and went out to check the awning. Voila! It worked! All's well that ends well, right?
Maybe not. Now my brain is very confused. I was absolutely sure that the GFCI outlet controlling the awning was in the upstairs bath. How could I be so wrong? This is very disturbing to me. When one thing that I am absolutely sure of turns out to be wrong, what about all the other things that I think I am sure of? I think I am sure that I cooked pork chops for dinner last night, but maybe we actually went out and had a pizza. How am I to really know? There seems to be a blurring between memory and reality that is hard to fathom.
This is only one instance. Gretchen has been telling me recently about things she says I have said that I have no memory of saying. My first impulse is to deny having said whatever it was (unless it was something quite brilliant, which never happens). But maybe she's right. Maybe my memory is getting a bit foggy. Shit! Maybe I need to record all my conversations to be able to keep the record straight. That would really suck though. I don't ever want to have to go there. A journal maybe? I don't know.
And another thing. I usually tend to be rather controlled and am seldom clumsy, unlike Gretchen, who often drops or breaks things. Until recently, that is. A few days ago, I knocked an empty glass off our counter and it smashed on the floor. OK, that's one. The next day at a restaurant in Newburyport, I knocked over my wine glass, spilling it spectacularly all over myself, the floor, and diners at the next table. Really cool. That's two. Then today, I kicked over another glass and broke it. That's three. WTF? I now consider myself a spastic. Oh yes, and tonight while weeding in the yard, I lost my balance and fell into a rose bush. (The scratches are healing just fine, thank you.) I don't know if that couples in with the Chemo Brain, but those are just more disturbing recent symptoms that don't make me too happy.
As you know from my last post, my medical condition continues to be excellent. All my test results (except anemia) are great. However, there appear to be some mental (and perhaps physical) deficiencies that I have to deal with. With Gretchen's brain damage from her accident, she also has lingering deficiencies to deal with. Hopefully, we can help each other through these times, and it will all work out for the best for both of us. Let's hope.
Thursday, August 8, 2013
One Year on Maintenance
My Farber appointment this month was Monday, which marked a full year on this Clinical Trial using maintenance therapy with Revlimid. The news continues to be positive, as my latest SPEP pathology results continue to show no M-spike or monoclonal gammopathy. It also shows a dramatic jump into the normal range for my immunoglobulins IgM, IgG and IgA. I wouldn't be too upset if the IgA slowed down a little bit, since that is the one that went cuckoo and caused my MM. It's currently at 263, which is OK. When I was diagnosed with MM, it was over 3,000. As long as it stays under 400 (normal range), I'll be comforted.
Furthermore some of my other blood test numbers have also shown improvement. Two big improvements are my white blood cell count (WBC), which jumped to 4.2 (normal range) after hovering around 2.9 for the last year, and my absolute neutrophil count (ANC), which jumped from 1.36 to 2.19, which is in the normal range for the first time in a year! Woohoo! Mary and Muriel told me that these results show that I am continuing to show a good recovery from my ASCT.
All of this is really good news. The only turds in the punch bowl are my RBC, HCT and Hgb readings, which continue to show that I am still anemic. I don't know when or if that will improve, but I have been told that that is a very slow process, and it might be hindered somewhat by my continued use of Revlimid. You know what? If that's the only thing I have to complain about, well shut me up!
I have to thank my lucky stars every day that I can continue to enjoy life's adventures such as this one. If and when a relapse of my MM happens and I can no longer enjoy doing such things, at least I will have memories such as this to comfort me.
Monday, July 29, 2013
More on Celgene and Richardson
Today's Boston Globe has an interesting article about Celgene investing $100 million into the Boston-based biotech start-up, Acetylon Pharmaceuticals. Drs. Ken Anderson and James Bradner from the Farber are co-founders of the company.
I've blogged about James Bradner before. He starred in a YouTube video last year espousing the benefits of the small molecule, JQ1: jq1: miracle molecule. The video was quite inspiring. While JQ1 hasn't shown any promise yet against MM, it now seems to be a promising candidate for a male contraceptive and an anti-HIV drug. Who knew? Anyway, Acetylon's leading drug candidate is an anti-myeloma drug ACY-1215, which also goes by the moniker rocilinostat.
Rocilinostat, which is among the class of anti-myeloma drugs known as histone deacetylase (HDAC) inhibitors, has undergone promising Phase I clinical trials. Other HDAC inhibitors currently in clinical trials include Zolinza (vorinostat) and panobinostat. ACY-1215 differs from the others in that it is more selective in its HDAC targets (it specifically targets HDAC6). So far, it has shown good preliminary results with fewer side effects than the other broader-based HDAC inhibitors.
Future trials will involve combination therapies, including Celgene's Revlimid, Velcade, and dexamethasone, to extract the maximum synergistic benefits of the combinations. It is research like this and ongoing clinical trials like these that give enormous hope to us MM patients that a breakthrough to a cure of this disease may not be far off.
Of course, this is only a small subset of the research into MM treatments. I've written about the promise of monoclonal antibodies as another means of attack against MM. And there are other lines of research as well. If you throw enough darts at a dart board, one of them will finally hit the bulls eye. From my own experience with darts, it takes a lot of them, but hey, who knows when the magic cure will be found? I have a sneaking suspicion that when and if that happens, Dana-Farber will be heavily involved.
Yesterday, Pat Killingsworth blogged about the great research team at Dana-Farber. He referred to a recent article that appeared on the Dana-Farber blog: new-therapies-bring-progress-against-multiple-myeloma/. As Pat wrote about this team, "Ken Anderson and Paul Richardson are two of the most renowned myeloma specialists in the world. If they made sets of baseball cards featuring myeloma docs instead, their cards would be most sought after; like Micky Mantle and Willie Mays!".
In response to one of the comments on Pat's post yesterday about Richardson, Pat replied, "He is one of the smartest, most creative and caring myeloma docs I know…" Amen! Dr. Richardson is all of that. He is an amazing human being. I have to keep pinching myself to make sure that I really am lucky enough to have him as my doctor.
I guess I've gotten a bit complacent about my status. I'm embarrassed to admit that I forgot to note that July 13 was the 2-year anniversary of my initial meeting with Dr. Richardson when he diagnosed me with MM. How could I have let that milestone slip by unnoticed without so much as a how-do-you-do? I know that one of these days I'm going to have to face the reality of a relapse. That will certainly be a slap in the face to wake me up. In the meantime...party on!
I've blogged about James Bradner before. He starred in a YouTube video last year espousing the benefits of the small molecule, JQ1: jq1: miracle molecule. The video was quite inspiring. While JQ1 hasn't shown any promise yet against MM, it now seems to be a promising candidate for a male contraceptive and an anti-HIV drug. Who knew? Anyway, Acetylon's leading drug candidate is an anti-myeloma drug ACY-1215, which also goes by the moniker rocilinostat.
Rocilinostat, which is among the class of anti-myeloma drugs known as histone deacetylase (HDAC) inhibitors, has undergone promising Phase I clinical trials. Other HDAC inhibitors currently in clinical trials include Zolinza (vorinostat) and panobinostat. ACY-1215 differs from the others in that it is more selective in its HDAC targets (it specifically targets HDAC6). So far, it has shown good preliminary results with fewer side effects than the other broader-based HDAC inhibitors.
Future trials will involve combination therapies, including Celgene's Revlimid, Velcade, and dexamethasone, to extract the maximum synergistic benefits of the combinations. It is research like this and ongoing clinical trials like these that give enormous hope to us MM patients that a breakthrough to a cure of this disease may not be far off.
Of course, this is only a small subset of the research into MM treatments. I've written about the promise of monoclonal antibodies as another means of attack against MM. And there are other lines of research as well. If you throw enough darts at a dart board, one of them will finally hit the bulls eye. From my own experience with darts, it takes a lot of them, but hey, who knows when the magic cure will be found? I have a sneaking suspicion that when and if that happens, Dana-Farber will be heavily involved.
Yesterday, Pat Killingsworth blogged about the great research team at Dana-Farber. He referred to a recent article that appeared on the Dana-Farber blog: new-therapies-bring-progress-against-multiple-myeloma/. As Pat wrote about this team, "Ken Anderson and Paul Richardson are two of the most renowned myeloma specialists in the world. If they made sets of baseball cards featuring myeloma docs instead, their cards would be most sought after; like Micky Mantle and Willie Mays!".
In response to one of the comments on Pat's post yesterday about Richardson, Pat replied, "He is one of the smartest, most creative and caring myeloma docs I know…" Amen! Dr. Richardson is all of that. He is an amazing human being. I have to keep pinching myself to make sure that I really am lucky enough to have him as my doctor.
I guess I've gotten a bit complacent about my status. I'm embarrassed to admit that I forgot to note that July 13 was the 2-year anniversary of my initial meeting with Dr. Richardson when he diagnosed me with MM. How could I have let that milestone slip by unnoticed without so much as a how-do-you-do? I know that one of these days I'm going to have to face the reality of a relapse. That will certainly be a slap in the face to wake me up. In the meantime...party on!
Thursday, July 25, 2013
Celgene/Richardson Team
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| Jason and admirers |
After the show, Jason was mobbed by a number of women wanting to get their pictures taken with the new celebrity. He seemed to enjoy the attention, but Jessica...not so much. After a few minutes of watching his female admirers fawning over him, she finally announced, "OK, we're outta here!"
All in all, it was a once in a lifetime experience for us all. Jason will now have to endure the long process of growing his hair back again, but I'm sure it will be worth it. As he emailed us afterwards, "I wanna jump thru a ten foot poster of myself every time I enter a building!"
Thursday morning we drove back to Boston in time to re-pack and head to the airport to board a plane to San Francisco. We had a delightful weekend with Holly and Ryan. Friday, Ryan and I played 18 holes at the Presidio Golf Club trying to prove to each other who was the worse golfer (it was a tie), while Gretchen spent the day at Holly's school. Some delicious meals, sightseeing, Farmer's Market, a ferry ride to Tiburon, and just hanging together out all made for a wonderful time.
On my last visit to the Farber, I picked up a copy of their house organ "Impact", which has a very interesting article about Celgene and Dr. Richardson. There has been a lot of discussion over the years about the close ties between big Pharma and the medical establishment, and whether these relationships constitute some sort of conflict of interest. While there may be instances where such ties work to the disadvantage of patients, this case is certainly not one of them. Dr. Richardson is on the Advisory Board of Celgene, and has been active in clinical trials with Celgene products, most notably, Revlimid. It is Richardson's ground-breaking trials that have resulted in the RVD (Revlimid/Velcade/dexamethasone) drug combination that is now the gold standard treatment for treating Multiple Myeloma. Obviously, this partnership has benefited everyone.
Recently, Celgene's newest MM drug, Pomalyst, received FDA approval, for which Richardson had a leading role. Specifically, he demonstrated Pomalyst's efficacy in both Phase I and Phase II trials, with the Phase II study providing the basis for accelerated approval.
This article reports that Celgene has just donated a $1.1 million gift to support Dr. Richardson and his team in future clinical trials. "Celgene's extraordinarily generous support helps make essential early-stage studies possible," said Richardson. "Results from our studies suggest that our approach is likely to have an enormous impact on our ability to better fight multiple myeloma at its various stages, an so further improve patient outcome." As Celgene put it, "This makes the work done over the years by Dr. Richardson the leading edge, and Dr. Richardson a powerful force who has been an ideal partner for Celgene."
Hmmm. Maybe I should buy some stock.
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