Yes, it's been too long since I have posted an update to this blog. It's not as if nothing has transpired, but I just haven't felt the urge to write until now. I'll explain my sudden enthusiasm to express myself later.
Last week I had my annual visit to my dermatologist, Dr. Reohr. I had suspected there would be some issues, as I have had a couple of open sores on my face and right arm that haven't healed over the last couple of months. Sure enough, she found three areas that were worthy of taking biopsies: my face, my arm, and back of my neck. It will be a couple of weeks before the biopsy results are back. If any are positive, I will be back for appropriate surgery. I've been through this more than a few times before, so it's really no big deal. If any of the biopsies are positive, I'm pretty sure they will be either basal cell or squamous cell carcinomas, which are easily treated.
Dr. Reohr had an intern following her around that day, and I think she wanted to impress him with her thoroughness. So she decided to mercilessly attack every possible unexplained protuberance or keratosis on my face. (Keratoses are either benign or pre-malignant growths on the skin.) She grabbed a metal bottle and peppered all over my face with freezing sprays of liquid nitrogen, called "cryogenic surgery". Thanks, doc. Not only was that not a lot of fun, but my face now looks like I stuck it in a meat grinder. Fortunately, the scabs are just starting to fall off. Anyway, with my history of skin cancer, I have to be diligent in keeping on top of this stuff. And yes, I regret all those times I let myself get burned to a crisp on a beach.
In December, I blogged about Betsy and Joel, whom I met at the Patient Symposium at the Farber. Their son, Ethan, has been diagnosed with MM at the tender age of 22, and is scheduled for a stem cell transplant in May. Yesterday, Gretchen and I met the two of them for lunch in Portsmouth, NH. They are a delightful couple and we had a wonderful lunch together. My heart goes out to them for the fear and uncertainty they are dealing with. It's one thing for an old fart like me to contract MM, but a young kid? Not fair! Anyway, he seems to be doing very well with his treatment so far. Betsy and Joel are hosting a fundraiser for the Jimmy Fund next week at a restaurant in Kittery, Maine. Gretchen and I plan to attend, and we hope to meet Ethan there. Just before his bone lesion problems with MM surfaced, Ethan ran a marathon in Spain last summer. As a tribute, his mother, Betsy, is planning to run the Boston Marathon this year to raise money for the Jimmy Fund. Go Betsy! I have to say, with this MM journey, one really meets some wonderful people along the way.
Now I will explain my sudden impulse to update my blog. Today I went to Farber, but it was to nourish my mind, not my body. I attended the monthly meeting of the Writing Workshop, hosted by Amy Boesky, a literature professor at Boston College. This is my third year of going to this workshop. I can't tell you how humble and grateful I am to be able to share this time with this talented and inspirational group of cancer survivors or caregivers. Today, there were about a dozen people there, and I left there feeling very enriched in my life.
The workshop is a challenge, because Amy gives us a prompt, usually based on the premise of a poem, and asks us to write something addressing the prompt in five minutes. Today, the prompt was from a wonderful poem by Billy Collins, entitled, "Consolation". The prompt was to think of something considered pleasant that we don't have to do, and counter it with being that it is enough to be doing what we are doing.
I volunteered to be the first to read what I wrote. I volunteered first for a reason. I didn't want to follow someone with something really good to make a bad comparison. Anyway, here it is:
"How fortunate I am not to be at the indoor golf facility today, launching golf balls into a screen using a simulated golf course. I glad I don't have to be practicing my new golf grip, stance, or follow through that I just learned at my lesson last week.
Instead, I am enjoying the cameraderie of my fellow workshop attendees and was able to catch up with Eric over lunch, rather than trying to figure out why I still can't control my wicked slice.
And too, I am relieved that I don't have to be at the Peabody Essex Museum today viewing the new exhibit featuring birds and guitars, marveling at the musical cacophony that they randomly produce.
It's better that I am sitting here in the comfortable ambiance of Amy's workshop, trying to do the impossible: write something meaningful in five minutes."
I'm glad I went first, because there were some beautiful and inspired writings by some of the others. Most were much deeper more serious than my flippant entry. Some people had offerings that were prepared already. One contribution from a previous seminar was from Phil, who is about to enter Divinity School. He described his journey trying to help people and to understand God. It was so powerful and moving that when he finished, no one could speak: most of us were fighting back tears (me too). And I'm not at all religious. Wow!
Anyway, I learned a lot today and was inspired by this experience to keep writing and to update my blog more frequently. Even if I don't have anything important to say about my MM, maybe I can offer something to those who read my blog that they may find of interest or of value.
Monday, January 27, 2014
Thursday, January 16, 2014
Maintenance Cycle 18
I have now made it almost a year and a half on my maintenance schedule following my ASCT. So far, so good! My blood tests at the Farber last week confirmed that I am still in remission. I also submitted a 24-hour urine sample for the first time in 4 months, and that also showed no monoclonal gammopathy. If I can make it another 18 months without a relapse, then I can go off all medications. That's something to look forward to, but I don't want to get ahead of myself. I'm just going to take this month by month.
Everything else seems fine except for one thing. Based on my continued anemia, I had an iron blood test done last week. The results weren't great:
Test Result Normal Range
Iron 24 49 - 181 Total Iron Binding Capacity (TIBC) 507 250 - 450
Ferritin 10 20 - 400
As you can see, I'm definitely iron deficient. The puzzling thing is that men don't usually lose iron that much, especially red meat carnivores such as myself. In fact, I just devoured a 12 oz. slab of prime rib for lunch today. Yum! And as Popeye would say, "I eats me spinach". Only 3% of men suffer from iron deficiency, usually caused from some source of bleeding. So Mary and Muriel asked me whether I have had any excessive bleeding. No, not that I have noticed. There are several things that could cause excessive bleeding, such as for instance, colon cancer! That was a scary thought. I then remembered Dr. Richardson telling everyone at last year's Patient Symposium to get a colonoscopy because of the secondary cancer risk from Revlimid.
My memory being what it is, I couldn't remember how recently I had undergone a colonoscopy. They are unpleasant enough that you'd think I'd remember, but duh! Anyway, afterwards I was relieved to find out that I had one just this past April (thanks to Dr. Richardson's prodding), and the results were great--no polyps found. I really should have remembered that, especially since I even blogged about it at the time. But no. In any case, that set my mind at ease on that score.
Anyway, I am now on iron pills. I am taking 150 mg of Ferrex twice a day. It will be interesting to see if this helps to improve my chronic anemia and gives me a little more energy. I'll get tested again in a couple of months to see if there is any improvement.
Last month, I posted an update on the Patient Symposium at the Farber. I included some results showing a need for more aggressive treatment of Smoldering Multiple Myeloma (SMM) based on several clinical factors. I just read an interesting abstract published in this month's issue of Blood, which expands on this topic. Here is a link:
http://www.practiceupdate.com/journalscan/7534?elsca1=emc_enews_expert-insight&elsca2=email&elsca3=practiceupdate_onc&elsca4=oncology&elsca5=newsletter
The bottom line is that using gene expression profiling based on a 70-gene signature can independently predict those SMM patients who have a 67% chance of progressing to active MM within 2 years. So a lot of progress is being made on determining which patients with SMM are candidates for early intervention. This type of screening will soon make it into the main stream and may lead to improved outcomes for those who can be diagnosed early.
Everything else seems fine except for one thing. Based on my continued anemia, I had an iron blood test done last week. The results weren't great:
Test Result Normal Range
Iron 24 49 - 181 Total Iron Binding Capacity (TIBC) 507 250 - 450
Ferritin 10 20 - 400
As you can see, I'm definitely iron deficient. The puzzling thing is that men don't usually lose iron that much, especially red meat carnivores such as myself. In fact, I just devoured a 12 oz. slab of prime rib for lunch today. Yum! And as Popeye would say, "I eats me spinach". Only 3% of men suffer from iron deficiency, usually caused from some source of bleeding. So Mary and Muriel asked me whether I have had any excessive bleeding. No, not that I have noticed. There are several things that could cause excessive bleeding, such as for instance, colon cancer! That was a scary thought. I then remembered Dr. Richardson telling everyone at last year's Patient Symposium to get a colonoscopy because of the secondary cancer risk from Revlimid.
My memory being what it is, I couldn't remember how recently I had undergone a colonoscopy. They are unpleasant enough that you'd think I'd remember, but duh! Anyway, afterwards I was relieved to find out that I had one just this past April (thanks to Dr. Richardson's prodding), and the results were great--no polyps found. I really should have remembered that, especially since I even blogged about it at the time. But no. In any case, that set my mind at ease on that score.
Anyway, I am now on iron pills. I am taking 150 mg of Ferrex twice a day. It will be interesting to see if this helps to improve my chronic anemia and gives me a little more energy. I'll get tested again in a couple of months to see if there is any improvement.
Last month, I posted an update on the Patient Symposium at the Farber. I included some results showing a need for more aggressive treatment of Smoldering Multiple Myeloma (SMM) based on several clinical factors. I just read an interesting abstract published in this month's issue of Blood, which expands on this topic. Here is a link:
http://www.practiceupdate.com/journalscan/7534?elsca1=emc_enews_expert-insight&elsca2=email&elsca3=practiceupdate_onc&elsca4=oncology&elsca5=newsletter
The bottom line is that using gene expression profiling based on a 70-gene signature can independently predict those SMM patients who have a 67% chance of progressing to active MM within 2 years. So a lot of progress is being made on determining which patients with SMM are candidates for early intervention. This type of screening will soon make it into the main stream and may lead to improved outcomes for those who can be diagnosed early.
Monday, January 6, 2014
Cancer Funding Boost
One of the casualties of the budget battles being waged in Washington has been Federal funding for cancer research. Funding has been slashed for a number of research programs, and there is little hope for year-to-year continuity from our disfunctional government to support important research initiatives.
I was heartened to read in today's Boston Globe that the Daniel P. Ludwig Trust has announced a gift of over half a billion dollars to six cancer research organizations in the country. Two of them, Harvard Medical School and MIT, have received $90 million each to sustain cancer research over the next several years. Here is a link to the article: harvard-mit-cancer-research-centers-receive-grants.
As the article states, "The gifts are timely for scientific and political reasons. Advances in understanding cancer at a molecular level have given scientists and physicians powerful insights that are helping them develop better and more precise ways to diagnose, treat, and monitor cancers. The money, which will be added to the centers’ endowments and should provide each institution a steady stream of roughly $4 million to $5 million a year, also arrives at a moment when federal funding for biomedical research has been cut and become increasingly uncertain, diverting many scientists’ attention toward trying to raise money to keep their labs afloat."
Each of these centers will have a different research focus. Harvard (which includes Dana Farber), will draw on its network of hospitals and emphasize translating basic research advances into the clinic. The Harvard center will also focus on providing a deeper understanding of the causes of therapy resistance.
Quoting from the article, "At MIT, biologists and engineers will probe metastasis, the process by which cancers spread throughout the body, which accounts for the vast majority of deaths from the disease. Instead of studying one particular type of cancer, scientists at the center will focus on trying to figure out the series of molecular events that cause cancers of all kinds to become aggressive and invasive."
"The other centers will focus on cancer stem cells that may seed tumor growth, therapies that stimulate the body’s immune system to defeat cancer, how to interfere with the spread of cancer, and the use of genomics to detect and prevent cancer."
This is good news! These are exactly the areas of current research that need to be actively pursued to eventually conquer this "Emperor of All Maladies". While these funds aren't specifically allocated to Multiple Myeloma research, recent studies have shown that there are some common features to many cancers, and developments against one type may have crossover benefits to other types.
I expect that Ken Anderson and Paul Richardson will snarf up some of this new funding to continue and expand their MM research at the Farber, both in the lab and in the clinic. I'm optimistic that we will see some further advances in the fight against MM sooner rather than later.
I was heartened to read in today's Boston Globe that the Daniel P. Ludwig Trust has announced a gift of over half a billion dollars to six cancer research organizations in the country. Two of them, Harvard Medical School and MIT, have received $90 million each to sustain cancer research over the next several years. Here is a link to the article: harvard-mit-cancer-research-centers-receive-grants.
As the article states, "The gifts are timely for scientific and political reasons. Advances in understanding cancer at a molecular level have given scientists and physicians powerful insights that are helping them develop better and more precise ways to diagnose, treat, and monitor cancers. The money, which will be added to the centers’ endowments and should provide each institution a steady stream of roughly $4 million to $5 million a year, also arrives at a moment when federal funding for biomedical research has been cut and become increasingly uncertain, diverting many scientists’ attention toward trying to raise money to keep their labs afloat."
Each of these centers will have a different research focus. Harvard (which includes Dana Farber), will draw on its network of hospitals and emphasize translating basic research advances into the clinic. The Harvard center will also focus on providing a deeper understanding of the causes of therapy resistance.
Quoting from the article, "At MIT, biologists and engineers will probe metastasis, the process by which cancers spread throughout the body, which accounts for the vast majority of deaths from the disease. Instead of studying one particular type of cancer, scientists at the center will focus on trying to figure out the series of molecular events that cause cancers of all kinds to become aggressive and invasive."
"The other centers will focus on cancer stem cells that may seed tumor growth, therapies that stimulate the body’s immune system to defeat cancer, how to interfere with the spread of cancer, and the use of genomics to detect and prevent cancer."
This is good news! These are exactly the areas of current research that need to be actively pursued to eventually conquer this "Emperor of All Maladies". While these funds aren't specifically allocated to Multiple Myeloma research, recent studies have shown that there are some common features to many cancers, and developments against one type may have crossover benefits to other types.
I expect that Ken Anderson and Paul Richardson will snarf up some of this new funding to continue and expand their MM research at the Farber, both in the lab and in the clinic. I'm optimistic that we will see some further advances in the fight against MM sooner rather than later.
Monday, December 30, 2013
Year End
This has been a tumultuous year. Gretchen's accident has been the major story of the year for us. Thankfully, she has recovered amazingly well from her terrible injury, but of course things won't ever be quite the same for her. However, she is adjusting to her "new normal", and for those who don't know her well, they would not even notice any difference. Compared to where she was on that terrible day in February, it's a miracle that she has recovered as well as she has. She is very lucky, and so am I.
As for myself, I am grateful that I have continued in remission from MM. It will be two years in March since my stem cell transplant, and so far I feel terrific. Of course, this is month-to-month, and I keep waiting for the "Sword of Damocles" to eventually fall. But until then, yay!
We have had a wonderful Holiday Season, albeit a bit stressful. We were blessed to have the whole family visit us over Christmas. Holly and Ryan flew in from San Francisco on the Saturday before Christmas. Then Brian, Pam, and our 3-year old grandson, Logan, drove up from New Jersey on Christmas Eve.
Friends and family, including Jeff and his girlfriend, Christine, celebrated here on Christmas Eve, as we savored pasta and our traditional ham. It was a real treat to experience the excitement of Christmas morning as Logan opened his gifts from Santa. Everyone, including Jason, was here to enjoy Christmas day. A feast of roast prime rib rounded out the day. It couldn't have been better!
Over the past ten days, our fireplace has been constantly ablaze, as the winter weather has enveloped us. As in days of yore, the hearth has drawn our family together over these holiday times. We probably went through a half a cord of wood, but it has been so comfortable and satisfying for us to all gather around the fire and savor our time together.
Yesterday, Jeff, Brian, Christine, and I all went to the Patriots
game against the Buffalo Bills. The weather was terrible, but we had a great time tailgating with
Ryan and his family. Despite the torrential downpour of rain during the game, we had a great time, especially since the Pats pulled out another win.
As wonderful as this was, I'm getting a little old to spend a whole day braving the elements to tailgate and watch a Patriots game while freezing my ass off or soaking to the bone and then spending another two hours or more fighting traffic to get back home. Know what I mean? I think I'll pass on trying to go to a playoff game this year. A comfy seat in front of the TV beckons.
Today, everyone returned home, and we are now surrounded by a somewhat blissful silence. Ah, the sounds of silence! Tomorrow is New Years Eve, and we have no plans. There was a time when New Years Eve was a time of great excitement. One year as a child, I wanted to stay up for midnight, but my mom made me go to bed. I lay awake in an excited state until the bewitching hour, when I got up and went downstairs to celebrate somehow. My mother, who was still up, said "So what do you want to do?" So I decided to go outside and celebrate by throwing a snowball at midnight. God! What a dork I was.
As an adult, I used to host New Years Eve parties for many years. Wahoo! But times have changed. Now, I no longer have any desire to stay awake to ring in the New Year. I mean really, what is the difference between 11:59 and 12:01? Nada! I expect we will be in bed long before that witching hour. Goodnight everyone, and have a Happy New Year!
As for myself, I am grateful that I have continued in remission from MM. It will be two years in March since my stem cell transplant, and so far I feel terrific. Of course, this is month-to-month, and I keep waiting for the "Sword of Damocles" to eventually fall. But until then, yay!
We have had a wonderful Holiday Season, albeit a bit stressful. We were blessed to have the whole family visit us over Christmas. Holly and Ryan flew in from San Francisco on the Saturday before Christmas. Then Brian, Pam, and our 3-year old grandson, Logan, drove up from New Jersey on Christmas Eve.
 |
| Logan and Sophie |
Over the past ten days, our fireplace has been constantly ablaze, as the winter weather has enveloped us. As in days of yore, the hearth has drawn our family together over these holiday times. We probably went through a half a cord of wood, but it has been so comfortable and satisfying for us to all gather around the fire and savor our time together.
As wonderful as this was, I'm getting a little old to spend a whole day braving the elements to tailgate and watch a Patriots game while freezing my ass off or soaking to the bone and then spending another two hours or more fighting traffic to get back home. Know what I mean? I think I'll pass on trying to go to a playoff game this year. A comfy seat in front of the TV beckons.
Today, everyone returned home, and we are now surrounded by a somewhat blissful silence. Ah, the sounds of silence! Tomorrow is New Years Eve, and we have no plans. There was a time when New Years Eve was a time of great excitement. One year as a child, I wanted to stay up for midnight, but my mom made me go to bed. I lay awake in an excited state until the bewitching hour, when I got up and went downstairs to celebrate somehow. My mother, who was still up, said "So what do you want to do?" So I decided to go outside and celebrate by throwing a snowball at midnight. God! What a dork I was.
As an adult, I used to host New Years Eve parties for many years. Wahoo! But times have changed. Now, I no longer have any desire to stay awake to ring in the New Year. I mean really, what is the difference between 11:59 and 12:01? Nada! I expect we will be in bed long before that witching hour. Goodnight everyone, and have a Happy New Year!
Monday, December 16, 2013
More on Patient Symposium
One of the interesting presentations at the Patient Symposium (Irene Ghobrial) had to do with considering earlier treatment of Smoldering Multiple Myeloma (SMM) before it develops into full-scale MM. The current standard of treatment is to do nothing until there is progression to MM. On the average, SMM has about a 10% chance annual risk of progressing to MM. However, there is a subset of SMM patients whose risk is much higher. A clinical risk stratification profile has been established where:
Ken Anderson was his usual scintillating self in his presentation, discussing novel MM therapies. He summarized one of the ASH presentations which demonstrated the overwhelming case for using Revlimid maintenance therapy after stem cell transplant, both in time to progression (TTP) and overall survival (OS). Yay! That's me. He also predicted that because of the effectiveness of the new induction therapies, someday it may not be necessary to do stem cell transplants at all!
As to future directions, Ken is really excited about the prospects for the monoclonal antibodies. Trials with daratumumab and elotuzumab have been very promising to date, especially in combination with other drugs. Also, the oral proteasome inhibitor, MLN-9708 (Ixazomib), that I helped to pioneer during its Phase I trial, is entering Phase III trials and may be on target for FDA approval in the next year or so. Trial results continue to be excellent. Because it is an oral drug, Ken feels that one day Ixazomib may become a standard for maintenance therapy. He is also optimistic about the HDAC inhibitor, ACY-1215, which has shown excellent synergistic results in combination with Velcade, Len, and dex.
Paul Richardson also gave an excellent presentation. He reported on the latest ASH stem cell transplant research showing updated results from RVD induction, ASCT, and RVD consolidation, followed by Rev maintenance. The results showed that consolidation therapy before maintenance upgraded the response rate by 26%! That's the path I am on in my ASCT clinical trial. Obviously, Paul must have known this when I got randomized for the trial, as he told me when I was selected that I was on the best arm of the trial. I wonder if he had anything to do with my getting selected for this arm. Hmmm. In any case, thank you Paul!
Richardson also expounded on the continued proven benefits of carfilzomib (Kyprolis) and pomalidomide (Pomalyst) presented at ASH for relapsed MM, even for those who became refractory to Velcade and/or Revlimid. This is great news to those of us looking forward to the options that may be available to us when we eventually relapse. Results with these agents have been so good that future regimens may evolve so that carfilzomib/pomalidomide/dexamethasone (Car/Pom/dex) may someday become the standard front-line treatment for MM.
Paul also presented detailed followup on the latest Ixazomib trials, which continue to show outstanding results. I'm really happy to have had the privilege of participating in the initial Phase I trials of this amazing drug. He also presented results bolstering his bias to early ASCT rather than waiting until first relapse. Finally, he presented excellent recent clinical trial results using the monoclonal antibody daratumumab along with Len and dex in relapsed or refractory MM patients. The results are very encouraging, suggesting further clinical development.
Sorry for the plethora of technical details in this blog post, but I wanted to do a data dump of what I learned on Saturday before it all faded from my memory and/or I could no longer decipher my cryptic notes.
- bone marrow plasma cells > 10%
- M-protein > 3 g/dl
- Free Light Chain Ratio (FLC) <.125 or >8
Ken Anderson was his usual scintillating self in his presentation, discussing novel MM therapies. He summarized one of the ASH presentations which demonstrated the overwhelming case for using Revlimid maintenance therapy after stem cell transplant, both in time to progression (TTP) and overall survival (OS). Yay! That's me. He also predicted that because of the effectiveness of the new induction therapies, someday it may not be necessary to do stem cell transplants at all!
As to future directions, Ken is really excited about the prospects for the monoclonal antibodies. Trials with daratumumab and elotuzumab have been very promising to date, especially in combination with other drugs. Also, the oral proteasome inhibitor, MLN-9708 (Ixazomib), that I helped to pioneer during its Phase I trial, is entering Phase III trials and may be on target for FDA approval in the next year or so. Trial results continue to be excellent. Because it is an oral drug, Ken feels that one day Ixazomib may become a standard for maintenance therapy. He is also optimistic about the HDAC inhibitor, ACY-1215, which has shown excellent synergistic results in combination with Velcade, Len, and dex.
Paul Richardson also gave an excellent presentation. He reported on the latest ASH stem cell transplant research showing updated results from RVD induction, ASCT, and RVD consolidation, followed by Rev maintenance. The results showed that consolidation therapy before maintenance upgraded the response rate by 26%! That's the path I am on in my ASCT clinical trial. Obviously, Paul must have known this when I got randomized for the trial, as he told me when I was selected that I was on the best arm of the trial. I wonder if he had anything to do with my getting selected for this arm. Hmmm. In any case, thank you Paul!
Richardson also expounded on the continued proven benefits of carfilzomib (Kyprolis) and pomalidomide (Pomalyst) presented at ASH for relapsed MM, even for those who became refractory to Velcade and/or Revlimid. This is great news to those of us looking forward to the options that may be available to us when we eventually relapse. Results with these agents have been so good that future regimens may evolve so that carfilzomib/pomalidomide/dexamethasone (Car/Pom/dex) may someday become the standard front-line treatment for MM.
Paul also presented detailed followup on the latest Ixazomib trials, which continue to show outstanding results. I'm really happy to have had the privilege of participating in the initial Phase I trials of this amazing drug. He also presented results bolstering his bias to early ASCT rather than waiting until first relapse. Finally, he presented excellent recent clinical trial results using the monoclonal antibody daratumumab along with Len and dex in relapsed or refractory MM patients. The results are very encouraging, suggesting further clinical development.
Sorry for the plethora of technical details in this blog post, but I wanted to do a data dump of what I learned on Saturday before it all faded from my memory and/or I could no longer decipher my cryptic notes.
Sunday, December 15, 2013
Patient Symposium
Yesterday I attended the annual MM Patient Symposium at the Farber. As usual, it didn't disappoint. The Farber staff updated us all on the latest developments in the battle against MM, including the latest results from the ASH meeting last weekend in New Orleans. There were a lot of encouraging developments that I would like to share with you.
But first, I want to talk about the people I met at my table. Tom sat next to me, and his wife was in Brigham and Women's Hospital (BWH), having just got her ASCT on Tuesday. He was from upstate New York (Lake George) and was staying here while his wife went through this ordeal. She was recently diagnosed last summer, and she also shares my t(4;14) high-risk factor. We talked about how scared she is and all the bad stuff she reads online about how little time she may have to live. He was really upset that she is terrified about what she's read on the internet and worries that she won't be alive to see her newly born grandson learn to walk. I told him to tell her that as long as she's on Velcade, her worries are overblown. "Look at me", I said. "I'm going on over 2 and 1/2 years, in remission, and doing great." I suggested that she ask her doctor (Schlossman) about his prognosis. I guess she's been afraid to ask the question up to now. I told Tom that Paul Richardson told me on my first visit that I would live into my eighties. She needs to think positive! I directed him to my blog to share with her. I hope she finds encouragement from my experience.
Then there was this delightful couple from Worcester, Betsy and Joel. They were there because their 22-year old son, Ethan, a senior in college, was just diagnosed in July with MM. Really! He in undergoing the usual RVD induction therapy and is scheduled for a stem cell transplant next month at BWH. I think it sucks that I have MM, but come on now, for a young kid like that to have MM, that's beyond the pale! Betsy and Joel were very concerned about the ASCT and wanted to know what my experience was like. I shared my story and told them how great BWH is and that I had no problems at all. I also reassured them that this should be a piece of cake for someone as young and strong as he is. I also shared my blog address with them so they could check out my experience.
Today I got an email from Betsy. They checked out my blog and found that they had already read some of it! As it turns out, Ethan was very ill with Lyme disease several years ago, and they thought that somehow the Lyme disease might somehow be related to the MM. Join the club! They had asked Schlossman about the potential relationship between Lyme and MM. His response was that that question has been raised but there is not enough data to validate it. It's interesting that this interaction seems to come full circle. The Lyme/MM connection just doesn't seem to want to go away.
I have lots of notes from yesterday's session. There are great results from continuing clinical trials with Kyprolis, Pomalyst, and MLN-9708, as well as with monoclonal antibodies (elotuzumab, daratumumab) and HDAC inhibitors (panobinostat) . Recent advances may lead to potential immunization therapies in the future. Research also continues to connect genetic profiles with potential treatment regimens, with the goal of providing individualized treatments. These latter developments may be years away, but in the meantime, the multi-drug therapy options continue to expand and show dramatically improved results for both newly-diagnosed and relapsed patients. It's a very promising landscape for future treatment options.
I'll expand on some of these in a future blog post unless I forget. You know how it is at my age.
But first, I want to talk about the people I met at my table. Tom sat next to me, and his wife was in Brigham and Women's Hospital (BWH), having just got her ASCT on Tuesday. He was from upstate New York (Lake George) and was staying here while his wife went through this ordeal. She was recently diagnosed last summer, and she also shares my t(4;14) high-risk factor. We talked about how scared she is and all the bad stuff she reads online about how little time she may have to live. He was really upset that she is terrified about what she's read on the internet and worries that she won't be alive to see her newly born grandson learn to walk. I told him to tell her that as long as she's on Velcade, her worries are overblown. "Look at me", I said. "I'm going on over 2 and 1/2 years, in remission, and doing great." I suggested that she ask her doctor (Schlossman) about his prognosis. I guess she's been afraid to ask the question up to now. I told Tom that Paul Richardson told me on my first visit that I would live into my eighties. She needs to think positive! I directed him to my blog to share with her. I hope she finds encouragement from my experience.
Then there was this delightful couple from Worcester, Betsy and Joel. They were there because their 22-year old son, Ethan, a senior in college, was just diagnosed in July with MM. Really! He in undergoing the usual RVD induction therapy and is scheduled for a stem cell transplant next month at BWH. I think it sucks that I have MM, but come on now, for a young kid like that to have MM, that's beyond the pale! Betsy and Joel were very concerned about the ASCT and wanted to know what my experience was like. I shared my story and told them how great BWH is and that I had no problems at all. I also reassured them that this should be a piece of cake for someone as young and strong as he is. I also shared my blog address with them so they could check out my experience.
Today I got an email from Betsy. They checked out my blog and found that they had already read some of it! As it turns out, Ethan was very ill with Lyme disease several years ago, and they thought that somehow the Lyme disease might somehow be related to the MM. Join the club! They had asked Schlossman about the potential relationship between Lyme and MM. His response was that that question has been raised but there is not enough data to validate it. It's interesting that this interaction seems to come full circle. The Lyme/MM connection just doesn't seem to want to go away.
I have lots of notes from yesterday's session. There are great results from continuing clinical trials with Kyprolis, Pomalyst, and MLN-9708, as well as with monoclonal antibodies (elotuzumab, daratumumab) and HDAC inhibitors (panobinostat) . Recent advances may lead to potential immunization therapies in the future. Research also continues to connect genetic profiles with potential treatment regimens, with the goal of providing individualized treatments. These latter developments may be years away, but in the meantime, the multi-drug therapy options continue to expand and show dramatically improved results for both newly-diagnosed and relapsed patients. It's a very promising landscape for future treatment options.
I'll expand on some of these in a future blog post unless I forget. You know how it is at my age.
Wednesday, December 11, 2013
ASH Conference
This past weekend, the American Society of Hematology (ASH) held its annual meeting in New Orleans. The buzz leading up to the conference indicated that there wouldn't be any new blockbuster breakthroughs in treating MM to announce. Unfortunately, that proved to be the case. Not to say that there hasn't been significant progress, however. Some of the new therapies continue to show positive results, and they are moving closer to the point of being able to provide targeted therapies for individual cases. In the meantime, a number of new drug therapy options are being explored, which should provide a variety of future options for those of us who will eventually relapse.
This Saturday, I will be attending a patient conference at the Farber, where Drs. Anderson, Richardson, and others will summarize some of the recent advances, including those presented at ASH. I hope to get a better feel about the more promising developments in trying to control or cure this disease. I will provide an update on what I learn at this symposium.
I just read an interesting article in the Myeloma Beacon about MM risk classification. The International Myeloma Working Group (IMWG), recently released a consensus statement on risk stratification for patients with multiple myeloma. Here is a link to the article: risk-stratification-multiple-myeloma. Here is a quote summarizing the gist of the article:
"In the new system, determination of a patient’s risk classification is based on three factors: a patient’s disease stage according to the International Staging System (ISS); the presence of certain chromosomal abnormalities in the patient’s myeloma cells based on results of so-called FISH testing; and patient age.
Patients who are ISS stage II or III and whose myeloma cells contain the translocation t(4;14) or the deletion del(17p13) are classified as high-risk. About 20 percent of patients are expected to fall in this category at the time of diagnosis, with median overall survival of two years from diagnosis.
Patients who are ISS stage I or II, under the age of 55 years, and whose myeloma cells do not contain t(4;14), del(17p13), or 1q21 gain are classified as low-risk. About 20 percent of patients also are expected to fall in this category at diagnosis, with median overall survival of more than 10 years from diagnosis.
The remaining 60 percent of patients are classified as standard-risk, with median overall survival of seven years from diagnosis."
When I was first diagnosed, I was classified as ISS Stage I, which puts me into the standard risk category. However, my b2-microglobulin was just a fraction below and my albumin was just a fraction above the thresholds of my being classified as ISS Stage II. As you can see from the above, with my t(4;14) translocation, had I been classified as ISS Stage II, I should be dead by now!
But I take heart from a number of considerations. First, I believe I caught my MM just in time. Just two months earlier, I had been diagnosed with Smoldering MM. Fortunately, I managed to get an appointment with Richardson just as my MM was rapidly developing. If I had waited a few more months, I may have been a solid Stage II and my prospects might have dimmed considerably. Second, I was fortunate to nail the right induction therapy with the clinical trial using MLN-9708, which put me into a stringent Complete Response (sCR) after 7 cycles. Third, recent studies have shown that use of Velcade (and I assume MLN-9708) along with Revlimid help to mitigate the high-risk effects of the t(4;14) translocation, which further helps push me into the standard risk category. Because of the rapid advances in treatment options, I consider the current standard-risk 7-year Overall Survival (OS) to be low. So I'm projecting at least 10 years for myself, the way I look at it. The bad new for you is that you may be subjected to my blog for an interminable length of time. So there!
On another positive note, the latest research shows that resveratrol, one of the major active compounds in red wine, may effectively kill myeloma cells! Here's a link to the article in the Myeloma Beacon: red-wine-resveratrol-and-multiple-myeloma-the-evidence-is-promising-but-needs-further-study. I just poured myself a glass of red wine. Cheers!
This Saturday, I will be attending a patient conference at the Farber, where Drs. Anderson, Richardson, and others will summarize some of the recent advances, including those presented at ASH. I hope to get a better feel about the more promising developments in trying to control or cure this disease. I will provide an update on what I learn at this symposium.
I just read an interesting article in the Myeloma Beacon about MM risk classification. The International Myeloma Working Group (IMWG), recently released a consensus statement on risk stratification for patients with multiple myeloma. Here is a link to the article: risk-stratification-multiple-myeloma. Here is a quote summarizing the gist of the article:
"In the new system, determination of a patient’s risk classification is based on three factors: a patient’s disease stage according to the International Staging System (ISS); the presence of certain chromosomal abnormalities in the patient’s myeloma cells based on results of so-called FISH testing; and patient age.
Patients who are ISS stage II or III and whose myeloma cells contain the translocation t(4;14) or the deletion del(17p13) are classified as high-risk. About 20 percent of patients are expected to fall in this category at the time of diagnosis, with median overall survival of two years from diagnosis.
Patients who are ISS stage I or II, under the age of 55 years, and whose myeloma cells do not contain t(4;14), del(17p13), or 1q21 gain are classified as low-risk. About 20 percent of patients also are expected to fall in this category at diagnosis, with median overall survival of more than 10 years from diagnosis.
The remaining 60 percent of patients are classified as standard-risk, with median overall survival of seven years from diagnosis."
When I was first diagnosed, I was classified as ISS Stage I, which puts me into the standard risk category. However, my b2-microglobulin was just a fraction below and my albumin was just a fraction above the thresholds of my being classified as ISS Stage II. As you can see from the above, with my t(4;14) translocation, had I been classified as ISS Stage II, I should be dead by now!
But I take heart from a number of considerations. First, I believe I caught my MM just in time. Just two months earlier, I had been diagnosed with Smoldering MM. Fortunately, I managed to get an appointment with Richardson just as my MM was rapidly developing. If I had waited a few more months, I may have been a solid Stage II and my prospects might have dimmed considerably. Second, I was fortunate to nail the right induction therapy with the clinical trial using MLN-9708, which put me into a stringent Complete Response (sCR) after 7 cycles. Third, recent studies have shown that use of Velcade (and I assume MLN-9708) along with Revlimid help to mitigate the high-risk effects of the t(4;14) translocation, which further helps push me into the standard risk category. Because of the rapid advances in treatment options, I consider the current standard-risk 7-year Overall Survival (OS) to be low. So I'm projecting at least 10 years for myself, the way I look at it. The bad new for you is that you may be subjected to my blog for an interminable length of time. So there!
On another positive note, the latest research shows that resveratrol, one of the major active compounds in red wine, may effectively kill myeloma cells! Here's a link to the article in the Myeloma Beacon: red-wine-resveratrol-and-multiple-myeloma-the-evidence-is-promising-but-needs-further-study. I just poured myself a glass of red wine. Cheers!
Monday, December 2, 2013
Birthday Boy
Gretchen and I spent my birthday today at the Farber. Woohoo! One might think that there would be better places to celebrate one's birthday, but I don't think so. Without the Farber, I might not even have been around for this occasion, so perhaps it's fitting that I could celebrate it at the place that has gifted me with more birthdays. It has been almost two and a half years since my diagnosis with MM, and I am still going strong. The next milestone will be March 20, the 2-year anniversary of my "second" birthday, the day of my stem cell transplant.
The blood test results today were good again. Some of the numbers I was concerned about last month have bounced back, and there is still no sign of any monoclonal gammopathy. I'm still feeling good, and I haven't been quite as tired lately. Maybe that's because my anemia numbers showed some improvement this month. In any case, I am grateful for my continued remission. Happy Birthday to me!
Today, we had the pleasure of meeting with fellow patient, Dee, for lunch in the Farber cafeteria before her appointment with Dr. Richardson. It was really helpful to exchange our stories. Her expertise in scanning electron microscope (SEM) imaging is intriguing. As a previous sufferer of chronic Lyme Disease (as was I), she thinks she has found evidence of the Lyme bacteria Borrelia burgdorferi (Bb) in her bone marrow samples using SEM. Bb doesn't stay in the blood stream, as it burrows into various tissues in the body. The available blood tests for Lyme can only check for antibodies that have been mobilized to fight the bacterial infection. The only way to actually find the bacteria itself is to biopsy tissue samples, which has been done in some cases. I think it would be really interesting and important to test bone marrow biopsy (BMB) samples for the possible presence of Bb in MM patients, as Dee has tried to do for herself. There may be more sensitive means to do this than SEM, such as focus floating microscopy (FFM), but it would be worth trying to explore this potential connection in more detail.
It's intriguing to think that Bb can find its way into the bone marrow for Lyme Disease sufferers. It's also intriguing to postulate that once it's there, this bacteria could trigger potential genetic mutations leading to MM. Hmmm. I'm just thinking out loud here (of course this is a figure of speech, as I'm writing not speaking, or would that be a "figure of text"?).
I know the medical community in general poo poohs any discussion or research into Lyme Disease for mysterious reasons that I'm sure have a lot to do with money. But my prejudices aside, it might be difficult to have insurance companies pay for testing tissue samples for Bb without any established connection, so patients may have to shell out of their own pockets to have such a test done.
So the plot sickens.
The blood test results today were good again. Some of the numbers I was concerned about last month have bounced back, and there is still no sign of any monoclonal gammopathy. I'm still feeling good, and I haven't been quite as tired lately. Maybe that's because my anemia numbers showed some improvement this month. In any case, I am grateful for my continued remission. Happy Birthday to me!
Today, we had the pleasure of meeting with fellow patient, Dee, for lunch in the Farber cafeteria before her appointment with Dr. Richardson. It was really helpful to exchange our stories. Her expertise in scanning electron microscope (SEM) imaging is intriguing. As a previous sufferer of chronic Lyme Disease (as was I), she thinks she has found evidence of the Lyme bacteria Borrelia burgdorferi (Bb) in her bone marrow samples using SEM. Bb doesn't stay in the blood stream, as it burrows into various tissues in the body. The available blood tests for Lyme can only check for antibodies that have been mobilized to fight the bacterial infection. The only way to actually find the bacteria itself is to biopsy tissue samples, which has been done in some cases. I think it would be really interesting and important to test bone marrow biopsy (BMB) samples for the possible presence of Bb in MM patients, as Dee has tried to do for herself. There may be more sensitive means to do this than SEM, such as focus floating microscopy (FFM), but it would be worth trying to explore this potential connection in more detail.
It's intriguing to think that Bb can find its way into the bone marrow for Lyme Disease sufferers. It's also intriguing to postulate that once it's there, this bacteria could trigger potential genetic mutations leading to MM. Hmmm. I'm just thinking out loud here (of course this is a figure of speech, as I'm writing not speaking, or would that be a "figure of text"?).
I know the medical community in general poo poohs any discussion or research into Lyme Disease for mysterious reasons that I'm sure have a lot to do with money. But my prejudices aside, it might be difficult to have insurance companies pay for testing tissue samples for Bb without any established connection, so patients may have to shell out of their own pockets to have such a test done.
So the plot sickens.
Saturday, November 30, 2013
Thanksgiving
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.
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.
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.
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