Yesterday was my monthly visit to DFCI for blood work and Zometa infusion. This is the Cycle that my Revlimid dose was supposed to increase from 10 to 15 mg/day. However, the prescription I got for next month was only for 10 mg. I was going to ask about this, but as you will see below, the question is now moot.
The blood test results could have been better. My platelet count was a low 124 (normal is above 155) and my white blood cell count (WBC) has dropped to 2.2 (normal is above 3.8). Of more concern was my absolute neutrophil count (ANC), which has fallen to 0.96 K/uL (or 960/uL). Anything below 1.0 is considered to be moderate neutropenia. This is not a good thing, as it leads to increased susceptibility to bacterial infection. This is the threshold used for suspending treatment until the ANC recovers.
The last time this happened was when I was on the consolidation therapy back in July. At that time, I stopped taking the Revlimid (as well as the Velcade and dexamethasone) for a week and took a Neupogen shot to stimulate the neutrophils. When I resumed the Revlimid, the dosage was reduced from 15 mg to 10 mg/day for the remainder of the consolidation phase. That experience is one of the reasons I have been concerned about Dr. Richardson's plan to increase my maintenance dose to 15 mg after 3 Cycles.
The neutrophil results didn't come in until after my appointment with Dr. Richardson's nurse, Mary McKenney. I saw the results online later, and I was going to call her today to ask about it, but she beat me to it. Mary said to suspend taking my daily 10 mg dose of Revlimid for the next week. She has scheduled me for another appointment next Tuesday to check my blood counts again. If they are OK, the clinical trial protocol calls for reducing the Revlimid dose from 10 to 5 mg per day. It looks like I won't have to worry about convincing Dr. Richardson not to increase my dose to 15 mg after all.
I was able to finish up my Zometa infusion in time to attend the monthly meeting of the Writer's Workshop at noon. What a pleasant and enriching experience this seminar is! I feel humbled to be in the presence of such intelligent, talented, creative, and interesting people, all of whom are dealing with serious cancer issues, either as patient or caregiver. Most of them are very well read and talk about authors and books that I have never heard of. It makes me feel quasi-literate at times. At least I was the only one in the room who knew the definition of "stanchion", which was used in a poem we were studying by Ted Kooser.
The writing assignments are challenging, and most of the contributions are beautifully written. I am already struggling with our next assignment. The next meeting will be on December 10, which is not my normal appointment day at DFCI. However, I plan to drive into Boston that day anyway just to attend the workshop.
Tuesday, November 20, 2012
Thursday, November 15, 2012
Patriots Game
This year our season tickets are really close to the field, a welcome change from our previous nose-bleed seats at the top of the stadium. As you can see, we get a great view of the action on our end of the field. However, on the other end, not so much. That's where the big video screens come in handy.
During the half-time show, I was pleasantly surprised to see a video of the Patriots donating a large check to the Dana Farber Cancer Institute. I didn't realize this, but the Patriots sponsor a team every year to participate in the Pan Mass Challenge, a charity bicycle ride, all the proceeds of which go to DFCI for cancer research. As you know, I support my friend, Dave Poulin, who rides in this event every year. It's a great fundraiser that donated a record 37 million dollars this year for cancer research. I also didn't know that the Patriots Platelet Pedalers team raises money every year at this event targeted specifically for Multiple Myeloma research. The video showed a huge check for over $719,000 that Patriots Platelet Pedalers raised this year, which was made out to Dr. Ken Anderson to sponsor his research to find a cure for MM. Wow! I was overwhelmed. MM is not a well-known cancer. To see this kind of visibility for MM at a huge sporting event like this was awesome. Spend it wisely, Ken. Go Pats!
I will continue to support Dave in his annual Pan Mass Challenge rides, but I also plan to support the Patriots Platelet Pedalers in their future rides. Who knows, if I can get myself into shape, maybe I will start riding myself. I need to do more to give back to those who have given so generously to help those of us who are fighting cancer.
Next Monday I go in for my monthly checkup and Zometa infusion. I got my prescription yesterday for next month's Revlimid. I was expecting the dose to increase from 10 mg/day to 15 mg/day, but it stayed at 10. I wonder why. I expect to find out what's going on Monday.
This year's ASH Conference is coming up next month. I plan to start researching the abstracts to see what new breakthroughs may be forthcoming at the conference. I also got an invitation today to attend the DFCI Patient Symposium on Saturday, December 15. Last year's event was very informative and I'm looking forward to finding out the latest and greatest news on the MM front. I will certainly share whatever nuggets I can find from these events.
Wednesday, November 7, 2012
WEGO Panel Discussion
After delays due to my disrupted travel schedule last week, we finally held the WEGO Health Network video teleconference panel discussion on Multiple Myeloma today. Three of us participated. I was pleased to note that one of the panelists was Pat Killingsworth. The other panelist was Matt Goldman, an MM patient from California. Here is a link to his blog: http://www.mattvsmyeloma.com/. Although I didn't know him beforehand, he is also a knowledgable and prolific blogger on MM issues. The panel was moderated by Linda Man of WEGO, who asked us a series of questions for us to discuss.
It was a very interesting experience. Each of us has a unique viewpoint on issues such as treatment options, how to deal with the disease, and future research directions. We each had an opportunity to address each question. I have no idea how the final video will turn out, but that is now in the hands of the editors. Tomorrow I will have a chance to view some of the videos, but I don't know when the final edited version will be available.
I have to say that while I was making what I thought was my most eloquent and profound point of the session, I realized that my video camera had locked up and wasn't working. Damn! Sometimes technology ain't what it's cracked up to be.
Unfortunately, I sometimes had trouble hearing what the other panelists were saying (especially Matt). I finally realized that often while someone else was talking, my camera was also recording, so there are probably times where I will be shown on a split screen just gaping stupidly at the monitor trying to figure out what they are saying. What else might I have doing then? Picking my nose, scratching my...well you get the picture. I sure hope those editors don't have a mean streak.
After the session, however, Linda said it was one of the best panel discussions they have had, so that's encouraging. If it turns out well, I will post a link to the final product when it's available, If not, well...
I have to give Pat Killingsworth credit for showing up and doing this panel discussion today. He just found out on Monday that his MM has relapsed after less than three months of remission. I discovered that this morning before our session by reading his latest blog post (see the link on the lower right of this screen). What a trouper he is! He faces all of his challenges with courage, optimism, and a can-do spirit that is an inspiration to all of his many followers, including me. Here's to you, Pat. Keep up the good fight.
It was a very interesting experience. Each of us has a unique viewpoint on issues such as treatment options, how to deal with the disease, and future research directions. We each had an opportunity to address each question. I have no idea how the final video will turn out, but that is now in the hands of the editors. Tomorrow I will have a chance to view some of the videos, but I don't know when the final edited version will be available.
I have to say that while I was making what I thought was my most eloquent and profound point of the session, I realized that my video camera had locked up and wasn't working. Damn! Sometimes technology ain't what it's cracked up to be.
Unfortunately, I sometimes had trouble hearing what the other panelists were saying (especially Matt). I finally realized that often while someone else was talking, my camera was also recording, so there are probably times where I will be shown on a split screen just gaping stupidly at the monitor trying to figure out what they are saying. What else might I have doing then? Picking my nose, scratching my...well you get the picture. I sure hope those editors don't have a mean streak.
After the session, however, Linda said it was one of the best panel discussions they have had, so that's encouraging. If it turns out well, I will post a link to the final product when it's available, If not, well...
I have to give Pat Killingsworth credit for showing up and doing this panel discussion today. He just found out on Monday that his MM has relapsed after less than three months of remission. I discovered that this morning before our session by reading his latest blog post (see the link on the lower right of this screen). What a trouper he is! He faces all of his challenges with courage, optimism, and a can-do spirit that is an inspiration to all of his many followers, including me. Here's to you, Pat. Keep up the good fight.
Friday, November 2, 2012
Hurricane Sandy
Last weekend we flew to San Luis Obispo, California to meet with our daughter, Holly, and her boyfriend, Ryan, who drove down from San Francisco. Our son, Jeff, and his girlfriend, Christine, also flew out from Massachusetts to meet us there. We chose it as a vacation spot because of its reputed beauty and because none of us had ever been there before. It was a great weekend with beautiful weather. We rented a house in Oceano Beach within view of the ocean with a fire pit and grill. Delightful! On Friday, we took a dune buggy and ATVs out onto the miles of dramatic dunes along the coast. What an experience! You can't do this stuff anymore around here, so it was quite a thrill.Gretchen and I planned to return to Boston Sunday night while the rest of them drove up to Holly and Ryan's one-bedroom apartment in San Francisco for a few more days, but because of Superstorm Sandy, our flight was cancelled. After spending 3 hours on hold trying to contact United Airlines, I finally figured out that driving to the airport and talking to a real person might work. We eventually talked to a real agent in person and found that the first available flight to Boston was on Thursday, so we scheduled our return from SF and drove up to squeeze in with the others in Holly's apartment near Haight Ashbury.
When we finally got home last night, to our dismay the power was still out! Fortunately, it came back on about 4:00 this morning, so everything is fine here now (except for all the perishables in the fridge and freezer that we had to throw out). In retrospect, our timing couldn't have been any better.
On the down side, we hadn't planned for an extended stay away from home, so we didn't take any extra meds with us. Gretchen was able to get a few days supply of her prescriptions, but I went without all of my mine for 4 days, which included my daily Revlimid doses, as well as my anti-viral (Valacyclovir) and antibiotic (Bactrim) pills. So far, I don't seem to have suffered any ill effects, so I guess it's OK (I hope). Next time I travel, I may plan a little better for unforeseen contingencies.
Because of these travel delays, my video panel discussion has been postponed until Wednesday of next week. I am really looking forward to participating in this.
Wednesday, October 24, 2012
Maintenance Cycle 3 Start
Monday was DFCI day, which began the third cycle of my long-term Revlimid maintenance therapy. My blood test results were generally good, especially as my anemia seems to be getting slightly better. The results of the 24-hour urine test were also good, as there is still no apparent M-Spike and no monoclonal protein detected. Yay! So far, so good.
By the way, having to collect 24 hours of urine every month before my DFCI visit is a bit of a pain. I have had to do this more than once while traveling (just think about trying to take a liter of urine through an airport security check). Then I have to carry the bottle into DFCI disguised in a brown paper bag like a wino on a street corner. Nobody is fooled, however. I can't wait to get rid of it at the first opportunity when I get my blood draw. If I want to grab something to eat before my appointment, I have to lug my unpleasant package through the cafeteria. That's not a lot of fun either. But I digress.
On the down side, my white blood cell count (WBC) was a low 2.3 and my neutrophil count was a marginal 1.08. If my neutrophils fall below 1.0, I will have to take a Neupogen injection to build them back up again. This is a normal side effect of the Revlimid that I take every day. Even at 10 mg/day, my counts are marginal, so I expect I will have more problems when I go up to 15 mg/day, which is scheduled for next month. Furthermore, as we enter flu, cold, and pneumonia season, the last thing I want is to have my immune system suppressed so I won't be able to fight this stuff off. Nurse Mary McKenney confirmed that Dr. Richardson would probably want to try keeping me at 15 mg/day, using Neupogen shots as necessary to keep my nuetrophils up. I hate that idea! I have not met with Dr. Richardson for several months now, but I requested that I meet with him next month to discuss how to proceed with this maintenance protocol going forward.
While I was there, I ran across Tom, the MM patient who had his stem cells collected the same time I did, and his partner, Ellen. I've written about him before (see my May 1, 2012 post) , and we've kept in touch over the intervening months. He has had a much tougher time than I had. His ASCT was much more difficult than mine, and he had a stroke, along with numerous infections, blood transfusions, and setbacks along the way. He is now undergoing radiation to shrink tumors in his sacrum and hip. He wasn't feeling well from the effects of the radiation, so we didn't spend much time together. It was good to see him, however, and I hope the best for him in his therapy. I will continue to keep in touch with him.
Today I worked with Linda from WEGO Health Network (https://www.wegohealth.com/) setting up my computer to do video teleconferencing for my upcoming panel discussion. I have a nice new Logitech webcam that she sent me (even though I probably didn't need it). It took a lot longer than it should have, but she finally got me set up on Adobe Connect. The plan is to record the teleconference some time next week (Tuesday or Wednesday). As I understand it, there may be a panel of three of us discussing some MM topic of interest. I'm not quite sure what that topic will be yet, but I have made some suggestions, and Linda will send me an email with several choices (hopefully sometime before we go online). Here are some topics that we might discuss:
1. introduction/Experience with MM
2. Dealing with the mental part of myeloma, living a normal life while dealing with everything that comes with the disease
3. Early vs. Delayed stem cell transplant
4. Pros and cons of long term maintenance therapy
5. level of response effect on prognosis
6. advice for those dealing with MM after first diagnosed
Their editors will polish up the clips and create a conversational video to post on their website. This should be a lot of fun!
By the way, having to collect 24 hours of urine every month before my DFCI visit is a bit of a pain. I have had to do this more than once while traveling (just think about trying to take a liter of urine through an airport security check). Then I have to carry the bottle into DFCI disguised in a brown paper bag like a wino on a street corner. Nobody is fooled, however. I can't wait to get rid of it at the first opportunity when I get my blood draw. If I want to grab something to eat before my appointment, I have to lug my unpleasant package through the cafeteria. That's not a lot of fun either. But I digress.
On the down side, my white blood cell count (WBC) was a low 2.3 and my neutrophil count was a marginal 1.08. If my neutrophils fall below 1.0, I will have to take a Neupogen injection to build them back up again. This is a normal side effect of the Revlimid that I take every day. Even at 10 mg/day, my counts are marginal, so I expect I will have more problems when I go up to 15 mg/day, which is scheduled for next month. Furthermore, as we enter flu, cold, and pneumonia season, the last thing I want is to have my immune system suppressed so I won't be able to fight this stuff off. Nurse Mary McKenney confirmed that Dr. Richardson would probably want to try keeping me at 15 mg/day, using Neupogen shots as necessary to keep my nuetrophils up. I hate that idea! I have not met with Dr. Richardson for several months now, but I requested that I meet with him next month to discuss how to proceed with this maintenance protocol going forward.
While I was there, I ran across Tom, the MM patient who had his stem cells collected the same time I did, and his partner, Ellen. I've written about him before (see my May 1, 2012 post) , and we've kept in touch over the intervening months. He has had a much tougher time than I had. His ASCT was much more difficult than mine, and he had a stroke, along with numerous infections, blood transfusions, and setbacks along the way. He is now undergoing radiation to shrink tumors in his sacrum and hip. He wasn't feeling well from the effects of the radiation, so we didn't spend much time together. It was good to see him, however, and I hope the best for him in his therapy. I will continue to keep in touch with him.
Today I worked with Linda from WEGO Health Network (https://www.wegohealth.com/) setting up my computer to do video teleconferencing for my upcoming panel discussion. I have a nice new Logitech webcam that she sent me (even though I probably didn't need it). It took a lot longer than it should have, but she finally got me set up on Adobe Connect. The plan is to record the teleconference some time next week (Tuesday or Wednesday). As I understand it, there may be a panel of three of us discussing some MM topic of interest. I'm not quite sure what that topic will be yet, but I have made some suggestions, and Linda will send me an email with several choices (hopefully sometime before we go online). Here are some topics that we might discuss:
1. introduction/Experience with MM
2. Dealing with the mental part of myeloma, living a normal life while dealing with everything that comes with the disease
3. Early vs. Delayed stem cell transplant
4. Pros and cons of long term maintenance therapy
5. level of response effect on prognosis
6. advice for those dealing with MM after first diagnosed
Their editors will polish up the clips and create a conversational video to post on their website. This should be a lot of fun!
Friday, October 19, 2012
Opportunity
As I have pointed out in my recent posts, I have been thinking about what direction I should take with my blog, now that I have reached what I hope is a stable state of remission for some period of time. So I was pleasantly surprised to receive a very timely email the other day from Linda, who is a production assistant for an online health website, https://www.wegohealth.com/. This appears to be an enterprise which emphasizes various social media outlets to disseminate information on a variety of health issues.
Linda said they are in the process of building an online video service to provide advice and information on various health topics. She had come across my blog while researching Multiple Myeloma and thinks that I would be a good addition to their MM channel. I immediately jumped at the opportunity. I spoke with her today, and sometime over the next week or so, I plan to participate in a video panel discussion on one of the MM topics that interest me using a webcam on my computer. Their editors will polish up the clips to create a conversational style video to be featured on their TV channel. Here is a link to their TV channel with some videos, one of which addresses MM: http://tv.wegohealth.com/?
This looks like an interesting opportunity to reach a larger audience with some of the issues that I have been struggling with since my diagnosis. I don't know how this will turn out, but I am looking forward to participating in this endeavor. I hope I can make some positive contributions. I will keep you informed.
One of the topics that has concerned me for some time is the question of using Revlimid for long-term maintenance therapy. I have already delineated some of the potential drawbacks, including various side effects, secondary cancer risk, and the potential for MM to become immune to it. Now, it appears that there is another risk.
In today's blog by Pat Killington (see the link on the bottom right of this page), he has been having problems with his Revlimid maintenance therapy. There is a suspicion (hopefully unfounded) that he may have contracted myelodysplastic syndrome (MDS), in which the stem cells in the bone marrow stop producing healthy blood cells. Many of these patients also progress to acute myelogenous leukemia (AML). Both of these diseases are quite commonly acquired by patients with MM. The disturbing thing is that there is some evidence that Revlimid might be an enabler of contracting MDS. I certainly hope that this is not the case, especially in Pat's case, but this seems to be just one more thing to worry about. I plan to do a lot more research on this. This is another discussion I plan to have with Dr. Richardson.
Linda said they are in the process of building an online video service to provide advice and information on various health topics. She had come across my blog while researching Multiple Myeloma and thinks that I would be a good addition to their MM channel. I immediately jumped at the opportunity. I spoke with her today, and sometime over the next week or so, I plan to participate in a video panel discussion on one of the MM topics that interest me using a webcam on my computer. Their editors will polish up the clips to create a conversational style video to be featured on their TV channel. Here is a link to their TV channel with some videos, one of which addresses MM: http://tv.wegohealth.com/?
This looks like an interesting opportunity to reach a larger audience with some of the issues that I have been struggling with since my diagnosis. I don't know how this will turn out, but I am looking forward to participating in this endeavor. I hope I can make some positive contributions. I will keep you informed.
One of the topics that has concerned me for some time is the question of using Revlimid for long-term maintenance therapy. I have already delineated some of the potential drawbacks, including various side effects, secondary cancer risk, and the potential for MM to become immune to it. Now, it appears that there is another risk.
In today's blog by Pat Killington (see the link on the bottom right of this page), he has been having problems with his Revlimid maintenance therapy. There is a suspicion (hopefully unfounded) that he may have contracted myelodysplastic syndrome (MDS), in which the stem cells in the bone marrow stop producing healthy blood cells. Many of these patients also progress to acute myelogenous leukemia (AML). Both of these diseases are quite commonly acquired by patients with MM. The disturbing thing is that there is some evidence that Revlimid might be an enabler of contracting MDS. I certainly hope that this is not the case, especially in Pat's case, but this seems to be just one more thing to worry about. I plan to do a lot more research on this. This is another discussion I plan to have with Dr. Richardson.
Monday, October 15, 2012
Keep On Blogging
After my last post, I have received several comments encouraging me to keep updating my blog and keep people informed of my progress. It's very gratifying for me to hear from people I don't know saying that they find my blog informative and/or interesting. That gives me renewed energy to keep steady on this course for the time being.
The stories that I hear from other MM patients are very poignant. Some are too young to have to endure this disease. Others have been fighting it for years, only to have it rear its ugly head again. Even those of us who have achieved remission for the time being are just waiting for the Sword of Damocles to fall and the inevitable relapse to occur. None of us is very far removed from the next blood test which may tell us that the disease is back. And for those who have relapsed, they are searching for new ways to halt the spread of this pernicious disease.
For those of us who have achieved CR or better after initial chemotherapy and perhaps a stem cell transplant as well, the question of how to proceed with maintenance therapy becomes an issue. I am participating in a clinical trial in which I am scheduled to receive Revlimid maintenance therapy for the next three years. Dr. Richardson is a staunch believer in this approach. However, there are many oncologists and patients who dispute this treatment method.
Revlimid does have some serious potential side effects, one of which is the risk of blood clots, or deep vein thrombosis (DVT), which can result in pulmonary embolisms. That is why I am taking aspirin daily. It is also known that Revlimid increases the risk of developing secondary cancers, as if MM isn't bad enough. One of the biggest concerns, however, is that continued use of Revlimid over a long period may cause one to become refractory, rendering it ineffective once relapse occurs. What then? There are also other side effects of Revlimid, such as lowered white blood cell counts, low neutrophils, and low platelets, which increase the risk of infections, especially as flu season commences (I did get my flu shot last week).
I go back into DFCI next Monday for my monthly blood test and Zometa infusion. After this next month of 10mg/day of Revlimid, Dr. Richardson plans to up the dose to 15 mg. I have every intention of continuing with this clinical trial of Revlimid maintenance, especially since I have the high-risk t(4;14) chromosome abnormality, which seems to respond to Revlimid. However, I plan to carefully monitor the dosage amounts. So far, I seem to be tolerating 10 mg pretty well, but I'm nervous about upping the dose to 15 mg. Nurse Mary McKenney said that Dr. Richardson likes to keep it at 15 mg even if the white blood cell and neutrophil counts drop by injecting Neupogen to boost them back up. I don't like that idea. I'd rather reduce the dose so I don't have to artificially increase my neutrophil count. I have a feeling that Dr. Richardson and I may be heading for a heart-to-heart talk one of these days soon. Want to take any bets as to who will win?
The stories that I hear from other MM patients are very poignant. Some are too young to have to endure this disease. Others have been fighting it for years, only to have it rear its ugly head again. Even those of us who have achieved remission for the time being are just waiting for the Sword of Damocles to fall and the inevitable relapse to occur. None of us is very far removed from the next blood test which may tell us that the disease is back. And for those who have relapsed, they are searching for new ways to halt the spread of this pernicious disease.
For those of us who have achieved CR or better after initial chemotherapy and perhaps a stem cell transplant as well, the question of how to proceed with maintenance therapy becomes an issue. I am participating in a clinical trial in which I am scheduled to receive Revlimid maintenance therapy for the next three years. Dr. Richardson is a staunch believer in this approach. However, there are many oncologists and patients who dispute this treatment method.
Revlimid does have some serious potential side effects, one of which is the risk of blood clots, or deep vein thrombosis (DVT), which can result in pulmonary embolisms. That is why I am taking aspirin daily. It is also known that Revlimid increases the risk of developing secondary cancers, as if MM isn't bad enough. One of the biggest concerns, however, is that continued use of Revlimid over a long period may cause one to become refractory, rendering it ineffective once relapse occurs. What then? There are also other side effects of Revlimid, such as lowered white blood cell counts, low neutrophils, and low platelets, which increase the risk of infections, especially as flu season commences (I did get my flu shot last week).
I go back into DFCI next Monday for my monthly blood test and Zometa infusion. After this next month of 10mg/day of Revlimid, Dr. Richardson plans to up the dose to 15 mg. I have every intention of continuing with this clinical trial of Revlimid maintenance, especially since I have the high-risk t(4;14) chromosome abnormality, which seems to respond to Revlimid. However, I plan to carefully monitor the dosage amounts. So far, I seem to be tolerating 10 mg pretty well, but I'm nervous about upping the dose to 15 mg. Nurse Mary McKenney said that Dr. Richardson likes to keep it at 15 mg even if the white blood cell and neutrophil counts drop by injecting Neupogen to boost them back up. I don't like that idea. I'd rather reduce the dose so I don't have to artificially increase my neutrophil count. I have a feeling that Dr. Richardson and I may be heading for a heart-to-heart talk one of these days soon. Want to take any bets as to who will win?
Wednesday, October 10, 2012
What's Next?
It's been over a week since I've updated this blog. One reason is that I spent the last long "guys" weekend up at the family farm in Champlain, New York, on the Canadian border relaxing and playing golf with my son, Jeff, and good buddy, Bobby. The fall foliage was on full display, and we barbecued steaks, chickens, and veggies on the grill. Afterwards, as night fell, we sat around the roaring fire pit looking at the stars, smoking cigars, sipping wine or beer, and just talking. (Don't tell Dr. Richardson about the cigars.) It doesn't get much better than that. Sadly, we had to close the place up for the winter, so we won't be back until next spring. Sigh. These are the times that memories are made of. When one's time may be limited, one collects and treasures whatever memories one can.
I have been struggling a little bit lately about how to proceed with this blog. As of now, I seem to have reached a plateau in my response to therapy, and with any luck, I may stay in my current state of IR remission for some time. If that is the case, I may not have much exciting new news to report on my progress or lack thereof in the near future. (I really hope it stays that way!)
I really enjoy writing this blog. It is a cathartic outlet for me, and I enjoy telling the stories of my progress and that of others whom I encounter. I also enjoy delving into the MM research and commenting on what I think are important discoveries or conflicts on how to approach treatment options. I also know that when I start to get too technical, I turn some people off, so I try to insert some humorous asides to keep my readers from falling asleep.
I also treasure those other MM patients that I have met through this blog, and I am following their situations with hope and concern. I want to learn from their experiences as well as share my journey with them. I don't want to lose those connections.
Where to I go from here? I would like to find a way to keep updating this blog at least once or twice a week, as I have been for many months now. But my own MM story is getting a little stale at that pace. I could make it a little bit more research oriented, but I don't want it to get too dry and boring. Besides, there are other blogs (such as Pat Killingsworth's) and news feeds ( such as the Myeloma Beacon) that keep up with the latest and greatest news reports. I could opine on what I think are the best options out there, but I'm not a doctor, so what gives me the right to have an opinion? As a patient, however, I may have a valid opinion on some matters that doctors might not appreciate.
There are some issues that I would like to continue to pursue, such as the effects of long-term maintenance therapy with Revlimid, how to decide if and when to do a stem cell transplant, and how best to deal with high-risk cytogenics, such as my t(4;14) translocation, among others. One of my strengths is that I have a technical bent, and I think I know how to wade through a lot of the bullshit gobbledegook out there to cull some of the more relevant facts. However, I don't see how to continue posting on these subjects at the same rate that I have been up until now.
I solicit inputs from you, my readers. What would you like me to continue writing about? If you want me to just shut up, let me know that too. I would like to keep this blog to be informative, helpful, and entertaining. The last thing I would want is for this to be like a Facebook page (to which I do not belong) describing the minutia of my incredibly boring life.
You may respond online to this blog or email me directly with your suggestion. In the meantime, I will continue to plod along this same path, hopefully with something interesting or informative to share.
I have been struggling a little bit lately about how to proceed with this blog. As of now, I seem to have reached a plateau in my response to therapy, and with any luck, I may stay in my current state of IR remission for some time. If that is the case, I may not have much exciting new news to report on my progress or lack thereof in the near future. (I really hope it stays that way!)
I really enjoy writing this blog. It is a cathartic outlet for me, and I enjoy telling the stories of my progress and that of others whom I encounter. I also enjoy delving into the MM research and commenting on what I think are important discoveries or conflicts on how to approach treatment options. I also know that when I start to get too technical, I turn some people off, so I try to insert some humorous asides to keep my readers from falling asleep.
I also treasure those other MM patients that I have met through this blog, and I am following their situations with hope and concern. I want to learn from their experiences as well as share my journey with them. I don't want to lose those connections.
Where to I go from here? I would like to find a way to keep updating this blog at least once or twice a week, as I have been for many months now. But my own MM story is getting a little stale at that pace. I could make it a little bit more research oriented, but I don't want it to get too dry and boring. Besides, there are other blogs (such as Pat Killingsworth's) and news feeds ( such as the Myeloma Beacon) that keep up with the latest and greatest news reports. I could opine on what I think are the best options out there, but I'm not a doctor, so what gives me the right to have an opinion? As a patient, however, I may have a valid opinion on some matters that doctors might not appreciate.
There are some issues that I would like to continue to pursue, such as the effects of long-term maintenance therapy with Revlimid, how to decide if and when to do a stem cell transplant, and how best to deal with high-risk cytogenics, such as my t(4;14) translocation, among others. One of my strengths is that I have a technical bent, and I think I know how to wade through a lot of the bullshit gobbledegook out there to cull some of the more relevant facts. However, I don't see how to continue posting on these subjects at the same rate that I have been up until now.
I solicit inputs from you, my readers. What would you like me to continue writing about? If you want me to just shut up, let me know that too. I would like to keep this blog to be informative, helpful, and entertaining. The last thing I would want is for this to be like a Facebook page (to which I do not belong) describing the minutia of my incredibly boring life.
You may respond online to this blog or email me directly with your suggestion. In the meantime, I will continue to plod along this same path, hopefully with something interesting or informative to share.
Monday, October 1, 2012
Biopsy Followup
In my penultimate post, I reported on the results of my recent bone marrow biopsy, which included Multiparameter Flow Cytometry (MFC) results. The MFC test can determine whether there are any measurable MM cells in the bone marrow. The test is much more accurate than the standard blood serum immunofixation test. If no MM cells are detected by MFC, it indicates that there is no more than one myeloma plasma cell for every ten thousand normal cells. A negative MFC result is called an Immunophenotypic Response (IR). Say that fast 6 times. I know that sounds like a big word, but it has only half as many syllables as supercalifragilisticexpialidocious.
I was pretty excited to find that I have now achieved IR, which is a deeper response level than CR or sCR. Of course, it's obvious that the better the response level I achieve, the better prognosis I am likely to have. The question, however, is how much better?
Investigators have been analyzing this question, and there are several important published results. One particularly relevant 2008 study by Bruno Paiva et al tracked MM patients who had an initial induction therapy using novel agents followed by autologous stem cell transplant (ASCT): http://bloodjournal.hematologylibrary.org/content/112/10/4017.abstract. Their conclusion was that "Multiparameter flow cytometric remission is the most relevant prognostic factor for multiple myeloma patients who undergo autologous stem cell transplantation".
The results were dramatic. Those that did not achieve IR had a median Progression Free Survival (PFS) of 37 months, while the IR group had a PFS of 71 months! Furthermore, the median Overall Survival (OS) was 89 months for the non-IR patients, but still had not been reached after 10 years for the those who had achieved IR. (That means that more than half of them were still alive after 10 years.)
All of this sounds very encouraging for me, but there is a fly in the ointment or turd in the punch bowl (take your pick). This same researcher also published a subsequent paper that analyzed the effect of both IR and high-risk cytogenic abnormalities on Progression Free Survival after stem cell transplants: http://www.myelomabeacon.com/news/2011/06/17/residual-disease-and-chromosomal-abnormalities-may-predict-early-multiple-myeloma-relapse-eha-2011/
One of the high-risk cytogenic abnormalities included was my t(4;14) translocation. These results were not so encouraging. They showed that even for those who achieved IR after transplant, high-risk patients were likely to relapse much sooner than normal-risk patients (2-3 years vs. 6 years). The recommendations from this study were that high-risk patients should consider consolidation therapy following transplant.
Well, that's just what I did, and I am planning to continue maintenance therapy as well, which I hope will mitigate the high-risk effect of my t(4;14) translocation. The known fact that Revlimid seems to contain the risk of the t(4;14) abnormality gives me some hope that I might still achieve a prognosis similar to those with a normal risk. It remains to be seen.
In any case, I have decided to spend less time analyzing this and more time enjoying my life in remission. (I can already hear the collective sigh of relief from my readers.) So tomorrow, I'm going to go play golf. Fore!
I was pretty excited to find that I have now achieved IR, which is a deeper response level than CR or sCR. Of course, it's obvious that the better the response level I achieve, the better prognosis I am likely to have. The question, however, is how much better?
Investigators have been analyzing this question, and there are several important published results. One particularly relevant 2008 study by Bruno Paiva et al tracked MM patients who had an initial induction therapy using novel agents followed by autologous stem cell transplant (ASCT): http://bloodjournal.hematologylibrary.org/content/112/10/4017.abstract. Their conclusion was that "Multiparameter flow cytometric remission is the most relevant prognostic factor for multiple myeloma patients who undergo autologous stem cell transplantation".
The results were dramatic. Those that did not achieve IR had a median Progression Free Survival (PFS) of 37 months, while the IR group had a PFS of 71 months! Furthermore, the median Overall Survival (OS) was 89 months for the non-IR patients, but still had not been reached after 10 years for the those who had achieved IR. (That means that more than half of them were still alive after 10 years.)
All of this sounds very encouraging for me, but there is a fly in the ointment or turd in the punch bowl (take your pick). This same researcher also published a subsequent paper that analyzed the effect of both IR and high-risk cytogenic abnormalities on Progression Free Survival after stem cell transplants: http://www.myelomabeacon.com/news/2011/06/17/residual-disease-and-chromosomal-abnormalities-may-predict-early-multiple-myeloma-relapse-eha-2011/
One of the high-risk cytogenic abnormalities included was my t(4;14) translocation. These results were not so encouraging. They showed that even for those who achieved IR after transplant, high-risk patients were likely to relapse much sooner than normal-risk patients (2-3 years vs. 6 years). The recommendations from this study were that high-risk patients should consider consolidation therapy following transplant.
Well, that's just what I did, and I am planning to continue maintenance therapy as well, which I hope will mitigate the high-risk effect of my t(4;14) translocation. The known fact that Revlimid seems to contain the risk of the t(4;14) abnormality gives me some hope that I might still achieve a prognosis similar to those with a normal risk. It remains to be seen.
In any case, I have decided to spend less time analyzing this and more time enjoying my life in remission. (I can already hear the collective sigh of relief from my readers.) So tomorrow, I'm going to go play golf. Fore!
Thursday, September 27, 2012
Writer's Workshop
I have completed my first month of maintenance therapy on 10 mg/day of Revlimid. Monday, we went back to DFCI for blood tests and my monthly dose of the bisphophonate, Zometa, to help build up my bones. The blood tests results were fine, so I am doing well so far on the maintenance. My white blood cell and neutrophil counts are still low, but those are normal side effects of the Revlimid.
I am no longer meeting with Dr. Richardson, but rather with his nurse, Mary McKenney, along with the clinical trial nurse, Muriel. I miss not seeing Dr. Richardson on these visits, but the good news is that I'm doing well, so I don't need his expert intervention at this point in my treatment. Furthermore, I don't miss whiling away the extra two hours or so in the waiting room every visit because he always runs late.
I verified with Mary and Muriel that my latest pathology results confirm that I have not only reached sCR, but also IR based on the flow cytometry results. This is extremely good news, as I will explain further in a future post.
While at DFCI, I had the opportunity to attend the first fall meeting of the Writer's Workshop, which took a hiatus over the summer. I am finding this to be a very rich and stimulating experience. Amy Boesky, a professor of writing at BC, skillfully directs the discussions. There were about a dozen attendees for the two-hour session, including three "old timers" from last year.
What interesting people and what stories they have to share! Most are either battling cancer or are caring for a loved one who is. Their stories are wrenching and compelling, from the woman who was recovering from breast cancer only to find out she has lung cancer, to the wife whose life has been upended by her husband's brain tumor, to the mother who suffers as her young daughter endures prolonged chemotherapy. For most of them, writing gives them a means of catharsis and a chance to share their pain. I feel humbled to be in their presence. I am learning a lot from each of them, not only about writing, but about dealing with adversity.
I began attending this workshop in the hope of becoming a better writer as I embarked on publishing this blog. While that is still a goal, I am finding that it is an enriching experience in its own right. So far, I have combined attending this workshop with my appointments at Dana Farber, but I think I will make the monthly trip to Boston even if it doesn't coincide with my appointment schedule.
Our next writing assignment is to pick a place or a photograph that is particularly important to us, and write about what makes it meaningful. I have no idea what I am going to write about, but I'll think of something...I hope.
I am no longer meeting with Dr. Richardson, but rather with his nurse, Mary McKenney, along with the clinical trial nurse, Muriel. I miss not seeing Dr. Richardson on these visits, but the good news is that I'm doing well, so I don't need his expert intervention at this point in my treatment. Furthermore, I don't miss whiling away the extra two hours or so in the waiting room every visit because he always runs late.
I verified with Mary and Muriel that my latest pathology results confirm that I have not only reached sCR, but also IR based on the flow cytometry results. This is extremely good news, as I will explain further in a future post.
While at DFCI, I had the opportunity to attend the first fall meeting of the Writer's Workshop, which took a hiatus over the summer. I am finding this to be a very rich and stimulating experience. Amy Boesky, a professor of writing at BC, skillfully directs the discussions. There were about a dozen attendees for the two-hour session, including three "old timers" from last year.
What interesting people and what stories they have to share! Most are either battling cancer or are caring for a loved one who is. Their stories are wrenching and compelling, from the woman who was recovering from breast cancer only to find out she has lung cancer, to the wife whose life has been upended by her husband's brain tumor, to the mother who suffers as her young daughter endures prolonged chemotherapy. For most of them, writing gives them a means of catharsis and a chance to share their pain. I feel humbled to be in their presence. I am learning a lot from each of them, not only about writing, but about dealing with adversity.
I began attending this workshop in the hope of becoming a better writer as I embarked on publishing this blog. While that is still a goal, I am finding that it is an enriching experience in its own right. So far, I have combined attending this workshop with my appointments at Dana Farber, but I think I will make the monthly trip to Boston even if it doesn't coincide with my appointment schedule.
Our next writing assignment is to pick a place or a photograph that is particularly important to us, and write about what makes it meaningful. I have no idea what I am going to write about, but I'll think of something...I hope.
Subscribe to:
Posts (Atom)