So far, this has been a delightful holiday season. Last weekend, we drove to New Jersey to visit with Brian, Pam, and our grandson, Logan. We had a wonderful time! We were then able to celebrate Thanksgiving at our house with sons Jason and Jeff, along with Jeff's girlfriend Christine and her mom. The only ones missing from this holiday week reunion were our daughter Holly and her boyfriend Ryan, who are in San Francisco. But they are coming back home for Christmas, when the whole family will finally be together, if only for a short while.
Yesterday, my college roommate, Steve, and his wife, Sue, came to visit and stayed over until today. Some of you who follow my blog might recall some of his comments along the way, which he often signs OCRM (Old College Room Mate). Okay, Steve, you've just been outed! We had fun reminiscing about the old days at MIT. For some reason, most of his stories were usually at my expense. Why is that?
Then today, to top it off, we got together with our close friends, Bobby and Cathy, and their family to continue our tradition of going to a local tree farm and cutting down our Christmas trees. After that we celebrated in front of a roaring fire with hot chili and other treats. Not too shabby! I guess the Christmas season is now here. It's time for us to be jolly and don our gay apparel (fa la la), but I don't have any pink shirts!
Monday, Gretchen and I are going into the Farber for my monthly blood test and Zometa infusion. I am excited about being able to meet another MM patient there, Dee, who has an appointment with Dr. Richardson that day. We have communicated before, and I wrote about her story in a previous post: new-twist-on-lyme/mm-connection. She has also suffered from chronic Lyme Disease, and I am anxious to learn more from her about her experiences. I am slowly piecing together some of the stories I have gotten from a number of people about their experiences with Lyme or other autoimmune diseases and MM. Dee has one of the more interesting stories, connecting with a rare disease, NXG.
There was a story in yesterday's Boston Globe North Section about a local State senator, Brad Hill, who has recently been diagnosed with MM. As it turns out, Dr. Richardson is his oncologist, and he is quoted several times in the article. Here is a link to the article: state-rep-brad-hill-stays-job-while-undergoing-cancer-treatment. Paul Richardson is a big fan of metaphors. When I was first diagnosed with MM, Paul described a coordinated attack on MM by the Army, Navy, Air Force, and Coast Guard, which included MLN-9708, Revlimid, Dex, and Zometa. It was a very inspiring story as I sat in his office that first day, stunned with the realization that I had just been diagnosed with Multiple Myeloma. He has also used the metaphor of a mongoose and a python, where aggressive early treatment puts the MM python in a basket, and further maintenance therapy is the mongoose that keeps the python in the basket.
In this Globe article, Richardson adds some more colorful metaphors to his MM repertoir, and I quote: “The metaphor I use is that the stem cells are like salmon,” said
Richardson. “You catch them, and put them in
the freezer, and you give them back to the patient and reinfuse them,
just like a blood transfusion. The miracle of nature is these little
guys, just like salmon, swim back to where they’re born, and regrow in
the bone marrow. Whereas Brad previously had, kind of, crabgrass in his bone marrow
from the myeloma, after this chemotherapy all the crabgrass is wiped
out. Then the little salmon come back, they repopulate the bone marrow
. . . then you get Kentucky bluegrass.”
It's really comforting for me to know that I now have Kentucky bluegrass rather than crabgrass in my bone marrow. I've always liked Kentucky bluegrass.
Saturday, November 30, 2013
Monday, November 18, 2013
Farber Writing Workshop
I followed up my knee rehab appointment with another visit to my PT, Karen, last week. It is quite apparent that the range of motion is noticeably limited in my right knee. She left me with a full set of exercises that I can do at home and/or at the gym to help stretch and rebuild the muscles around my bum knee. It's a good excuse to get back to the gym regularly after my "summer" vacation, which has now extended through most of the fall.
My visits to rehab have been a bit humbling. First of all, Karen pointed out that I was bow legged, which puts more pressure on the inside of the knees, possibly accounting for my meniscus tear. Okay. Then she further volunteered that one leg is shorter than the other (I forget which one). It seems that I'm coming up a bit short (so to speak). I came out of there feeling like a deformed specimen of humanity. All I need is a hump on my back, and I could pass for Igor from "Young Frankenstein".
Speaking of deformities, one of the things I forgot to ask Karen about is my L1 vertebra
compression fracture, which may have been caused my my MM. Are there specific exercises that would either
help or hurt this condition? I have found that lying flat on my back using a
wooden yoga pillow under my lower back seems to help. Here is what it looks like:
At first, it feels like a medieval torture instrument. It takes a
minute or two to relax into this posture while various vertebrae crack up and down my spine, but then it feels good. It takes me a while to clamber back onto my feet after this contortion exercise, but afterwards, my back feels great. I think this is a really helpful exercise, but I hope I'm not risking permanent disability or paralysis by my self-help therapy approach. If I make to January without incident, I plan to ask Karen's opinion on this.
I went into the Farber today for the monthly meeting of the Writing Workshop that I have been attending for the last two years. It was inspirational! The people there have endured the pain and uncertainty of being either cancer patients or caregivers, and they all bring talent and creativity to the room. They want to write for various reasons: to document their difficult journeys, to help them remember things they might otherwise forget, to find an outlet to express their feelings, or to leave a legacy for their loved ones, to name a few. It's amazing the clarity of purpose and zest for life that comes from knowing that one's time may be running out. I really enjoy interacting with these special people.
Amy, the coordinator, is great at challenging us and giving us guidance. At each workshop, she gives us a prompt, usually inspired by a poem, to write a piece addressing the prompt in only 10 minutes. That's a challenge! And then to read it out loud to the group? Gulp! Today, I couldn't believe the excellent pieces that rose to that challenge. I came away from that workshop filled with energy and inspired to write. I was determined to update my blog today. So I did.
My visits to rehab have been a bit humbling. First of all, Karen pointed out that I was bow legged, which puts more pressure on the inside of the knees, possibly accounting for my meniscus tear. Okay. Then she further volunteered that one leg is shorter than the other (I forget which one). It seems that I'm coming up a bit short (so to speak). I came out of there feeling like a deformed specimen of humanity. All I need is a hump on my back, and I could pass for Igor from "Young Frankenstein".
I went into the Farber today for the monthly meeting of the Writing Workshop that I have been attending for the last two years. It was inspirational! The people there have endured the pain and uncertainty of being either cancer patients or caregivers, and they all bring talent and creativity to the room. They want to write for various reasons: to document their difficult journeys, to help them remember things they might otherwise forget, to find an outlet to express their feelings, or to leave a legacy for their loved ones, to name a few. It's amazing the clarity of purpose and zest for life that comes from knowing that one's time may be running out. I really enjoy interacting with these special people.
Amy, the coordinator, is great at challenging us and giving us guidance. At each workshop, she gives us a prompt, usually inspired by a poem, to write a piece addressing the prompt in only 10 minutes. That's a challenge! And then to read it out loud to the group? Gulp! Today, I couldn't believe the excellent pieces that rose to that challenge. I came away from that workshop filled with energy and inspired to write. I was determined to update my blog today. So I did.
Friday, November 8, 2013
Rehab and Other Gab
I went to our mailbox today to post a letter that I wanted the mailman to pick up when he delivered today's mail. When I checked the box, however, the mail had already come. Drat! So I picked up today's mail and drove to the post office to mail my letter. When I got there, the letter had disappeared! What? I searched the car fruitlessly, so I drove back to the mailbox to see if I had dropped it along the way. When I got there, I found the letter neatly nestled in the mailbox. Duh! Chemobrain? Old age? Some combination of the two?
I read recently that doorways are memory erasers. I can purposefully walk from one room to another to accomplish something, but after going through the doorway, I stand there in bewilderment wondering why am I here in this room? I'm sure this doorway theory has some merit, because I have a lot of experience with it. I think the National Science Foundation should sponsor a study to verify this obvious conclusion. I mean really, it makes sense, doesn't it?
Monday was my monthly Farber day. Originally, I was scheduled to see Richardson, but the appointment was changed to see his nurse, Mary. I did have a couple of questions for Paul about the potential Lyme Disease connection, so I was a bit disappointed. On the other hand, I'm grateful that I'm doing so well that he doesn't need to see me on a regular basis. That puts things into the proper perspective.
My pathology results from last month's serum electrophoresis and immunofixation tests continue to show no M-spike and no gammopathy, which is great! So far, so good. Some of my other numbers have slipped a bit, however. My WBC dropped from 4.2 to 3.0, below the normal range, and my neutrophil count plummeted from 2.45 to 1.56, but still above the threshold of 1.0 where I would have to suspend taking the Revlimid. My hematocrit also fell to 33.9, the lowest level in more than a year. I just can't seem to shake this persistent anemia. Oh well, at least I feel good, except for needing more sleep than I used to.
I asked Mary how long I should keep taking monthly Zometa (bisphosphonate) infusions. She indicated at least two more years before moving to a 3-month schedule, because I need to build back my bones. I knew I had severe osteopenia at the the time of my MM diagnosis, but I didn't realize until Monday that I actually have a compression fracture of the L1 vertebra. That might explain why my lower back doesn't always feel so good. Do ya think?
I finally went to the physical therapist for my knee on Tuesday. I'm glad I went. Karen, the PT, gave me a number of exercises to keep limber and build up the muscles around my knee. I can do these exercises at home and at the gym. I have to admit that I have been slightly remiss about going the gym lately. By "slightly remiss", I mean I haven't been to the gym in about 4 months. OK, OK...20 lashes with a wet noodle, as Ann Landers used to say. Anyway, this should motivate me to get off my lazy ass and get back into the groove. Fortunately, the cortisone shot is still working, and I don't even notice my knee most of the time.
I want to thank the goodly number of my readers who responded to my posts about the possible connection between Lyme Disease or other autoimmune maladies and monoclonal gammopathies (MGUS/SMM/MM). There seem to be a lot of patients out there who have suffered the symptoms of chronic Lyme Disease some years before contracting MM or its precursors, some of whom have contracted other maladies along the way. Of course, these anecdotal cases don't show a definitive connection, but I smell enough smoke to think that there's a fire there somewhere. The real question is what is the mechanism for an overloaded immune system to trigger the mutations leading to myeloma? Perhaps understanding this could help lead to better treatments or at least increased vigilance leading to earlier diagnosis. I'm still soaking some of this in. I'll update this blog with my conclusions, assuming I come up with any.
I read recently that doorways are memory erasers. I can purposefully walk from one room to another to accomplish something, but after going through the doorway, I stand there in bewilderment wondering why am I here in this room? I'm sure this doorway theory has some merit, because I have a lot of experience with it. I think the National Science Foundation should sponsor a study to verify this obvious conclusion. I mean really, it makes sense, doesn't it?
Monday was my monthly Farber day. Originally, I was scheduled to see Richardson, but the appointment was changed to see his nurse, Mary. I did have a couple of questions for Paul about the potential Lyme Disease connection, so I was a bit disappointed. On the other hand, I'm grateful that I'm doing so well that he doesn't need to see me on a regular basis. That puts things into the proper perspective.
My pathology results from last month's serum electrophoresis and immunofixation tests continue to show no M-spike and no gammopathy, which is great! So far, so good. Some of my other numbers have slipped a bit, however. My WBC dropped from 4.2 to 3.0, below the normal range, and my neutrophil count plummeted from 2.45 to 1.56, but still above the threshold of 1.0 where I would have to suspend taking the Revlimid. My hematocrit also fell to 33.9, the lowest level in more than a year. I just can't seem to shake this persistent anemia. Oh well, at least I feel good, except for needing more sleep than I used to.
I asked Mary how long I should keep taking monthly Zometa (bisphosphonate) infusions. She indicated at least two more years before moving to a 3-month schedule, because I need to build back my bones. I knew I had severe osteopenia at the the time of my MM diagnosis, but I didn't realize until Monday that I actually have a compression fracture of the L1 vertebra. That might explain why my lower back doesn't always feel so good. Do ya think?
I finally went to the physical therapist for my knee on Tuesday. I'm glad I went. Karen, the PT, gave me a number of exercises to keep limber and build up the muscles around my knee. I can do these exercises at home and at the gym. I have to admit that I have been slightly remiss about going the gym lately. By "slightly remiss", I mean I haven't been to the gym in about 4 months. OK, OK...20 lashes with a wet noodle, as Ann Landers used to say. Anyway, this should motivate me to get off my lazy ass and get back into the groove. Fortunately, the cortisone shot is still working, and I don't even notice my knee most of the time.
I want to thank the goodly number of my readers who responded to my posts about the possible connection between Lyme Disease or other autoimmune maladies and monoclonal gammopathies (MGUS/SMM/MM). There seem to be a lot of patients out there who have suffered the symptoms of chronic Lyme Disease some years before contracting MM or its precursors, some of whom have contracted other maladies along the way. Of course, these anecdotal cases don't show a definitive connection, but I smell enough smoke to think that there's a fire there somewhere. The real question is what is the mechanism for an overloaded immune system to trigger the mutations leading to myeloma? Perhaps understanding this could help lead to better treatments or at least increased vigilance leading to earlier diagnosis. I'm still soaking some of this in. I'll update this blog with my conclusions, assuming I come up with any.
Friday, November 1, 2013
Richardson's Talk Radio Interview
While I was away last week, I missed Dr. Richardson's blog talk radio panel discussion. Fortunately, I was able to access it when I got back and it did not disappoint. He clearly established why he is one of the preeminent MM specialists in the world! He addressed the question of when or if to do stem cell transplants in very direct and compelling terms. He also addressed a number of related issues, such as consolidation and/or maintenance therapy after transplant. For anyone who is interested in the entire episode, here is a link: http://www.blogtalkradio.com/curepanel/2013/10/24/dana-farbers-dr-paul-richardson-discusses-myeloma
One of the major contributing factors to my decision to have an early ASTC vs. waiting until first relapse was Paul's reference to Dr. Polumbo's research from Torino, Italy, showing some benefit for early transplant vs. waiting until first relapse. I blogged about that visit with Richardson on December 29, 2011: yesterday-was-very-good-day-at-dfci. Now, almost two years later, he still refers to that study as being relevant. That's good news, as there have not yet been any data to contradict that presumption, although clinical trials are still underway to answer that question. In my mind, the answers may never be definitive, and either choice may be fine. In any case, I'm happy I made the decision I did, and I certainly can't complain as I am still in remission a year and a half later.
On the issue of consolidation and maintenance therapy, Dr. Richardson strongly recommended at least following a maintenance regimen after a transplant or even after successful initial drug therapy. While all studies show a Progression Free Survival (PFS) benefit of maintenance (usually Revlimid), some studies don't show any Overall Survival (OS) benefit, which of course is the bottom line. Paul suggested that the reason is that many studies only continued maintenance for 2 years and then discontinued it. He reasons that this is a mistake. A Polumbo study showed OS benefits for maintenance until first relapse. Paul's take is that 2 years isn't long enough. Revlimid has a slight risk of inducing a secondary cancer, but that risk is almost always in the first 2 years. Why take the risk of the secondary cancer without continuing the therapy after the risk is no longer a factor?
Here's the thing. Unlike most cancers, MM is a cytogenetically active disease, where individual patients undergo mutations of the monoclonal proteins over time. I have blogged about this in the past. High-risk patients, such as myself, are even more prone to mutations that will create another monoclonal spike, which accounts for our more pessimistic prognoses. Continuous treatment with an IMID (Immunomodulatory Drug) , such as Revlimid, helps keep these mutated clones under control. Especially after a stem cell transplant, Revlimid helps the new immune system keep an active eye on these mutations as they occur and keep them at bay. This makes a lot of sense to me.
Some have argued that by continuing to give maintenance therapy over a long period of time, one can become resistant (refractory) and it won't work anymore. That used to be a big problem when there were few options to replace the resistant drug. But fortunately that's not the case these days. For example, the IMID Pomalyst has now been approved by the FDA for relapsed MM, which can substitute for Revlimid. Yay! Now I don't have to worry that if Rev someday stops working, I have no other options.
I am currently on a clinical trial, which involves continuing my Rev maintenance therapy for 3 years. If I am fortunate enough to still be in remission at the end of that trial, I will have a decision to make about whether to stop treatment all together or continue on some maintenance therapy. That decision is a long way off, and I hope that all the ongoing research will give me good insight as to what path I should take going forward. Right now, I just hope that is a decision I get to make.
I have other issues to blog about, including more on the Lyme Disease connection and other potential MM links, but I'll put that off until another day. I have an appointment with Dr. Richardson on Monday. I may have something to report about on that.
One of the major contributing factors to my decision to have an early ASTC vs. waiting until first relapse was Paul's reference to Dr. Polumbo's research from Torino, Italy, showing some benefit for early transplant vs. waiting until first relapse. I blogged about that visit with Richardson on December 29, 2011: yesterday-was-very-good-day-at-dfci. Now, almost two years later, he still refers to that study as being relevant. That's good news, as there have not yet been any data to contradict that presumption, although clinical trials are still underway to answer that question. In my mind, the answers may never be definitive, and either choice may be fine. In any case, I'm happy I made the decision I did, and I certainly can't complain as I am still in remission a year and a half later.
On the issue of consolidation and maintenance therapy, Dr. Richardson strongly recommended at least following a maintenance regimen after a transplant or even after successful initial drug therapy. While all studies show a Progression Free Survival (PFS) benefit of maintenance (usually Revlimid), some studies don't show any Overall Survival (OS) benefit, which of course is the bottom line. Paul suggested that the reason is that many studies only continued maintenance for 2 years and then discontinued it. He reasons that this is a mistake. A Polumbo study showed OS benefits for maintenance until first relapse. Paul's take is that 2 years isn't long enough. Revlimid has a slight risk of inducing a secondary cancer, but that risk is almost always in the first 2 years. Why take the risk of the secondary cancer without continuing the therapy after the risk is no longer a factor?
Here's the thing. Unlike most cancers, MM is a cytogenetically active disease, where individual patients undergo mutations of the monoclonal proteins over time. I have blogged about this in the past. High-risk patients, such as myself, are even more prone to mutations that will create another monoclonal spike, which accounts for our more pessimistic prognoses. Continuous treatment with an IMID (Immunomodulatory Drug) , such as Revlimid, helps keep these mutated clones under control. Especially after a stem cell transplant, Revlimid helps the new immune system keep an active eye on these mutations as they occur and keep them at bay. This makes a lot of sense to me.
Some have argued that by continuing to give maintenance therapy over a long period of time, one can become resistant (refractory) and it won't work anymore. That used to be a big problem when there were few options to replace the resistant drug. But fortunately that's not the case these days. For example, the IMID Pomalyst has now been approved by the FDA for relapsed MM, which can substitute for Revlimid. Yay! Now I don't have to worry that if Rev someday stops working, I have no other options.
I am currently on a clinical trial, which involves continuing my Rev maintenance therapy for 3 years. If I am fortunate enough to still be in remission at the end of that trial, I will have a decision to make about whether to stop treatment all together or continue on some maintenance therapy. That decision is a long way off, and I hope that all the ongoing research will give me good insight as to what path I should take going forward. Right now, I just hope that is a decision I get to make.
I have other issues to blog about, including more on the Lyme Disease connection and other potential MM links, but I'll put that off until another day. I have an appointment with Dr. Richardson on Monday. I may have something to report about on that.
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