Bonjour to all of you out in Myelomaville! That means 'hello!' to my friends down at the 5 & Dime.
Thanks to the dedicated folks at the International Myeloma Foundation, you can watch an exciting, hopeful, helpful internet video presentation from the 2011 International Myeloma Workshop meetings taking place in Paris this week. C'est magnifique!
This presentation addresses some of the 'novel agents' (cool new drugs) being used in the war against Multiple Myeloma.
If you have Myeloma, or you know and love someone battling this difficult blood/ bone marrow cancer, by all means, watch this presentation.
And as always, check the Myeloma Beacon for the latest news, resources and information breaking in greater Myelomaville, where amazing things have happened in the last 10 years!
You ain't gettin' rid of me yet! Au revoir! That means 'see ya;' to the guys still hanging around the 5 & Dime.
Sean
Thursday, May 5, 2011
Thursday, March 10, 2011
I Still Believe in Miracles... How About You?
Would you please take a brief moment to read this article from Holt's website? Your heart will be moved. Please pass this link on to someone whom might welcome it. You never know when someone you know, or someone they know, can help move a mountain.
THANK YOU out there in Myelomaville!!
Thursday, March 3, 2011
Some of My Memorable Myeloma Moments
Here’s a short list of some of my adventures while being treated for Multiple Myeloma. Best enjoyed with a bit of truth and grain of salt!
Note: Jugular port not pictured- thank goodness., The last time I did that, I had to apologize to my surgeons, the port maker, my grandmother, the FDA, the AMA, the IMF, the Vampires Union, the CDC, and on.
2. Trying to explain to my nosey neighbor that Myeloma is a 'monoclonal' disease and hearing him say: ‘Thank God! You just have a bad case of Mono! Don’t worry, Murray, you’ll have your 2 acre back yard up to community standards in no time!’ Fat chance. I'll be sipping my Port, instead. On non-Velcade days, of course.
3. Hearing the perky, newly matriculated student nurse say: ‘This is my first I.V.! We’re both going to remember this one!’
4. The time when I went in for a two-hour, full-body MRI and the Taiwan-born MRI imaging tech asked me to remove my silver ‘Made in China’ pendant that I picked up during my last visit to The People’s Republic. Curious, I asked how she knew my ‘Double Happiness’ character jewelry piece (I’ve always loved that saying!) was made in China. She told me: ‘Because the boy necklace say ‘Made in China.’ $2.89 doesn’t buy what it used to.
5. Discovering that the highly toxic chemotherapeutic agent doxorubicin, known as the Red Devil, doesn’t taste like cherry Kool Aid. Don’t ask. But I did end up thinking that that big Kool Aid Pitcher Freak was trying to break down my front door.
6. Trying to use the ‘Smiley Face Pain Rating System’ when describing my myeloma-caused vertebral pain that lies somewhere between the discomfort of a slow, over-stuffed, buffet-bound Wildebeest, stumbling through a pride of ravenous Lions and that of a red-hot fondue skewer being indiscriminately pressed into my exposed spinal cord. ‘So about a 3?’ the ER nurse says.
7. Many of my brilliant Myeloma medical professionals are from countries outside the U.S. I love, respect and am grateful for every one of them. I wouldn’t still be here without them. Although speaking in their mother tongue, pointing at me and giggling, does put me on edge.
8. When I last picked up my Oxcycodone my Pharmacist said ‘Here you go – Oxymoron!’ Still trying to figure out if it was an honest mistake or whether Wal-Mart is hiring stand-up comedians.
9. Finding out that the Bernie Madoff Marrow and Myel-High Club for Men was a scam. And to think that I had my card punched for every one of my previous bone marrow and bone biopsies. My next one was supposed to be free. Madoff told me that he wasn’t just the President, he had bone marrow ripped from his hip bones just like the rest of us. It may still happen.
10. My simpleton friend panicked and said that he would take care of telling all of my other friends that I was diagnosed with Melanoma - a cancer of the melon. ‘No, it’s Myeloma – a cancer of the blood’ I shared. ‘Blood! Did you know that there are more than 10 miles of blood in the human body?’ he said. ‘No, there are more than 10 pints of blood in the average adult body. And there are more than 316 million feet of blood vessels. That’s 4 times around the equator! ’ ‘You have cancer in your equator and your feet, should you be sitting? ‘No, I have cancer in my… never mind. I feel fine.’ We’ve set up an appointment to have my friend’s melon checked.
S’Myelomas (wink! wink!) from Myelomaville! Drop me a line to let me know how you’re doing!
Sean
Friday, February 4, 2011
Myeloma: You Give Me Fever!
Latest post from the Myeloma Beacon:
Seans Burgundy Thread: Fevers, Flu.and a Few New Multiple Myeloma Friends
After taking a much-needed break, I will be posting more often. Just thought I'd warn you!
Blessings to you out in Myelomaville.
Sean
Seans Burgundy Thread: Fevers, Flu.and a Few New Multiple Myeloma Friends
After taking a much-needed break, I will be posting more often. Just thought I'd warn you!
Blessings to you out in Myelomaville.
Sean
Wednesday, January 5, 2011
New Year's / Multiple Myeloma Resolutions 2011
Although one of my 2010 New Year's resolutions was to not have any more New Year's resolutions, I couldn't resist offering just a few for 2011. You can see them, unless one of your resolutions is not to read any of my resolutions, by clicking on this link to the Myeloma Beacon website. Happy New Year!!
Friday, December 17, 2010
S'Myeloma Award - Lori Hudson Puente
As we make our way through the helter-skelter maze of the Multiple Myeloma world we all need encouragement, laughter and a liberal dose of hope. In the middle of the dark, torrential downpour of MM, you will meet shining, bright-light people.
Today's S'Myeloma Award goes to caregiver extraordinaire, Lori Hudson Puente, from California. Read about her by clicking on the University of Arkansas for Medical Sciences' website in an interview entitled Myeloma Caregiver Recounts Rewarding Journey .
Lori, whom I met last month during a return trip to Little Rock, is an actively involved, dedicated caregiver to her husband Dave, a Myeloma patient at UAMS. She, like my wife and many other caregivers, are vital to a MM patient's good health and well being.
Do yourself a favor and visit her excellent blog and website Riding The Wave - Multiple Myeloma .
Thank you, Lori, for showing us how it is done!
Keep fighting out there in Myelomaville!
Today's S'Myeloma Award goes to caregiver extraordinaire, Lori Hudson Puente, from California. Read about her by clicking on the University of Arkansas for Medical Sciences' website in an interview entitled Myeloma Caregiver Recounts Rewarding Journey .
Lori, whom I met last month during a return trip to Little Rock, is an actively involved, dedicated caregiver to her husband Dave, a Myeloma patient at UAMS. She, like my wife and many other caregivers, are vital to a MM patient's good health and well being.
Do yourself a favor and visit her excellent blog and website Riding The Wave - Multiple Myeloma .
Thank you, Lori, for showing us how it is done!
Keep fighting out there in Myelomaville!
Thursday, December 16, 2010
Myeloma for a Season
Here is the recent article reprinted from The Myeloma Beacon in my monthly 'Sean’s Burgundy Thread' column.
You can read the article below or at the MB site: Myeloma for a Season
Sean’s Burgundy Thread: Myeloma For A Season
Hello, multiple myeloma friends!
I know that some of you Northern Hemisphere dwellers are getting hit hard with cold temperatures and a snowy, icy mix right about now. While I hope that you are safely weathering the deep freeze, I have to admit, without shame, that I am a Fall Guy. And sorry Mr. Shakespeare, I suffer no discontent in winter.
Now while some folks like to bask in the fun-in-the-sun days of summer and others are jazzed by the new growth of spring, I eagerly await the yearly metamorphosis from late summer into autumn and then autumn into the chillier months.
I long for the days here in the Ozarks to get shorter, when the air becomes cooler and crisper and fireplaces blaze with the burning of native woods. The wisps of smoke sneaking out of the neighbor’s chimneys signal to me that all inside are cozy and warm and well.
Having fractured many bones during my multiple myeloma journey, I do try not to fall prey to any inadvertent slips on the precariously slick walkways. My kids don’t mind my deliberate outdoors pace because I am a much easier target to hit during the family snowball fights! They’re only going to let their old dad get away with so much—even when I try to play the myeloma card for sympathy.
In our family, life in November and December is a whirlwind. The calendar is loaded with family birthdays, school programs and sporting events, job commitments, community projects, church responsibilities, and, of course, Thanksgiving, Christmas, and New Year’s Eve celebrations. We love every mind-numbing minute of it and wouldn’t do anything to interrupt our madcap fun.
But in 2008, multiple myeloma had no such qualms about doing its level best to bring our end-of-the-year family joy to a grinding halt.
That fall started out as usual. I was serving as the Creative Director for a successful group of companies, writing two original live show synopses on the side (I’ve been in the live entertainment business for nearly 30 years), and was generally keeping my nose to the proverbial grindstone.
In early November, my good friend, Marlyce, and I were producing a big black-tie event commemorating the 233rd anniversary of the United States Marine Corps. Lt. Col. Oliver North (USMC-ret) was the keynote speaker. Several hundred people were in attendance at the ceremony, dinner, and dance. And, most importantly, there were many active duty and retired Marines present. Some of the young leathernecks were to ship out overseas in the weeks to follow.
I had been suffering (I don’t toss around that word lightly) with an increasingly painful backache for a couple of weeks, but I just couldn’t spare a minute to get it looked at. Some of you multiple myeloma-ers know exactly what that backache is like. Some of you male multiple myeloma-ers know what putting off a visit to the doctor is like!
The extremely poignant and powerful event went off without a hitch, and everyone was feeling good. I, however, was in agony. I could barely stand. Ice, heat, Aleve (naproxen), sitting in a chair—none of them offered relief. Marlyce did absolutely everything she could do to get me through the evening.
I suppose my pride had overruled common sense, but what was I going to do? I was surrounded by courageous Marines, the youngest 19, the oldest 84, each of whom were willing to give their all, up to and including their lives, for me, my family, and our country. How was I not going to give them my very best?
It was the next day that I began the process of finding out what the heck was wrong with me and why my health seemed to change so drastically in just a few short weeks. Although I felt bad about canceling some morning meetings, I showed up without an appointment at my local physician’s clinic. My doctor wasn’t in, so his assistant took some x-rays, and we looked at the film together.
‘Do you have arthritis in your family?’ the assistant asked.
‘Yep, both of my parents lived with arthritis. Is it arthritis?’ I responded.
‘Maybe. It’s all up and down your spine. Hmmm. I’m not sure what’s going on in your neck. Any pain in your shoulder?’
‘Uh… yes. For about a year. I thought I’d torn my rotator cuff and was dealing with it until I could, well, deal with it. I can do this with my arm and this, but I can’t do this. Ouch!’
‘A year, huh? I’ll have the doctor take a look at these films and get back to you, okay Sean?’ his lips said. But his eyes, growing as big as saucers, said ‘You bonehead. You’ve got some problems.’
Over the next couple of weeks, I heard shocking words like cancer, shortened life span, incurable, and other terms that I’d never imagined associated with my name. And then I was introduced to the odd foreign language vocabulary of myeloma—which I called melanoma before I figured out that they were two different things. Plasmacytoma. Monoclonal. Immunofixation. Paraprotein. And so on. I wish that I’d studied harder in Latin class!
Long story short, I went into the Total Therapy 4 Phase 3 clinical trial at the University of Arkansas for Medical Sciences in Little Rock, Arkansas, in early December of 2008. I was to spend the better part of the next ten months at the Myeloma Institute undergoing rounds of high-dose chemotherapy, stem cell transplants, surviving blood clots and pulmonary embolisms, kyphoplasties to repair collapsed vertebrae, and more tests and blood work than I ever imagined I could handle.
Myeloma is the grinchiest of grinches. It stole a lot from me that fall and winter.
I missed the school musicals, band concerts, and basketball games. I missed the frenetic activity of a home filled with laughter, singing, rowdy kids, and rambunctious dogs. The Thanksgiving turkey and all of the trimmings were replaced by Ensure and soda crackers. There was to be no gathering with the family and friends for the holidays. No decorating the tree or snowball fights.
In between two doctor’s appointments on Christmas Day, my wife and I called our two daughters on the phone. They were staying with relatives 650 miles away in Chicago. We missed them terribly.
But as we gained our bearings, it eventually dawned on us that I was exactly where I needed to be. I was doing what I needed to be doing. I was immersed in a world where countless people were focused on helping me to get better—helping me to get back to my family.
I navigated through the rigors of treatment a day at a time. Those days turned into weeks, then into months, and before I knew it, it was nearing the fall of 2009 and I was back home. I still didn’t feel like my old self, but my new self was in complete response to treatment. My pain was much less than it had been a year earlier. I was surrounded by my loving family and friends.
And now fast-forward to today. I have a year of maintenance therapy behind me, and I am still in complete response. If I am feeling well enough, I never miss a school or church activity. I speak to groups about myeloma and offer support to newly diagnosed patients.
I am slowly getting back into the rhythm of normal life – something I couldn’t even imagine doing two years ago. I am blessed to be able to continue fighting the good fight, and I’m excited that there is more hope in the myeloma world now than ever before.
Myeloma takes so much from us. I’m busy taking it back. And by the way, I’m getting much better at dodging snowballs!
Warm wishes and peace to all of you this holiday season!
Sean
For in-depth information, news and features about multiple myeloma visit The Myeloma Beacon
You can read the article below or at the MB site: Myeloma for a Season
Hello, multiple myeloma friends!
I know that some of you Northern Hemisphere dwellers are getting hit hard with cold temperatures and a snowy, icy mix right about now. While I hope that you are safely weathering the deep freeze, I have to admit, without shame, that I am a Fall Guy. And sorry Mr. Shakespeare, I suffer no discontent in winter.
Now while some folks like to bask in the fun-in-the-sun days of summer and others are jazzed by the new growth of spring, I eagerly await the yearly metamorphosis from late summer into autumn and then autumn into the chillier months.
I long for the days here in the Ozarks to get shorter, when the air becomes cooler and crisper and fireplaces blaze with the burning of native woods. The wisps of smoke sneaking out of the neighbor’s chimneys signal to me that all inside are cozy and warm and well.
Having fractured many bones during my multiple myeloma journey, I do try not to fall prey to any inadvertent slips on the precariously slick walkways. My kids don’t mind my deliberate outdoors pace because I am a much easier target to hit during the family snowball fights! They’re only going to let their old dad get away with so much—even when I try to play the myeloma card for sympathy.
In our family, life in November and December is a whirlwind. The calendar is loaded with family birthdays, school programs and sporting events, job commitments, community projects, church responsibilities, and, of course, Thanksgiving, Christmas, and New Year’s Eve celebrations. We love every mind-numbing minute of it and wouldn’t do anything to interrupt our madcap fun.
But in 2008, multiple myeloma had no such qualms about doing its level best to bring our end-of-the-year family joy to a grinding halt.
That fall started out as usual. I was serving as the Creative Director for a successful group of companies, writing two original live show synopses on the side (I’ve been in the live entertainment business for nearly 30 years), and was generally keeping my nose to the proverbial grindstone.
In early November, my good friend, Marlyce, and I were producing a big black-tie event commemorating the 233rd anniversary of the United States Marine Corps. Lt. Col. Oliver North (USMC-ret) was the keynote speaker. Several hundred people were in attendance at the ceremony, dinner, and dance. And, most importantly, there were many active duty and retired Marines present. Some of the young leathernecks were to ship out overseas in the weeks to follow.
I had been suffering (I don’t toss around that word lightly) with an increasingly painful backache for a couple of weeks, but I just couldn’t spare a minute to get it looked at. Some of you multiple myeloma-ers know exactly what that backache is like. Some of you male multiple myeloma-ers know what putting off a visit to the doctor is like!
The extremely poignant and powerful event went off without a hitch, and everyone was feeling good. I, however, was in agony. I could barely stand. Ice, heat, Aleve (naproxen), sitting in a chair—none of them offered relief. Marlyce did absolutely everything she could do to get me through the evening.
I suppose my pride had overruled common sense, but what was I going to do? I was surrounded by courageous Marines, the youngest 19, the oldest 84, each of whom were willing to give their all, up to and including their lives, for me, my family, and our country. How was I not going to give them my very best?
It was the next day that I began the process of finding out what the heck was wrong with me and why my health seemed to change so drastically in just a few short weeks. Although I felt bad about canceling some morning meetings, I showed up without an appointment at my local physician’s clinic. My doctor wasn’t in, so his assistant took some x-rays, and we looked at the film together.
‘Do you have arthritis in your family?’ the assistant asked.
‘Yep, both of my parents lived with arthritis. Is it arthritis?’ I responded.
‘Maybe. It’s all up and down your spine. Hmmm. I’m not sure what’s going on in your neck. Any pain in your shoulder?’
‘Uh… yes. For about a year. I thought I’d torn my rotator cuff and was dealing with it until I could, well, deal with it. I can do this with my arm and this, but I can’t do this. Ouch!’
‘A year, huh? I’ll have the doctor take a look at these films and get back to you, okay Sean?’ his lips said. But his eyes, growing as big as saucers, said ‘You bonehead. You’ve got some problems.’
Over the next couple of weeks, I heard shocking words like cancer, shortened life span, incurable, and other terms that I’d never imagined associated with my name. And then I was introduced to the odd foreign language vocabulary of myeloma—which I called melanoma before I figured out that they were two different things. Plasmacytoma. Monoclonal. Immunofixation. Paraprotein. And so on. I wish that I’d studied harder in Latin class!
Long story short, I went into the Total Therapy 4 Phase 3 clinical trial at the University of Arkansas for Medical Sciences in Little Rock, Arkansas, in early December of 2008. I was to spend the better part of the next ten months at the Myeloma Institute undergoing rounds of high-dose chemotherapy, stem cell transplants, surviving blood clots and pulmonary embolisms, kyphoplasties to repair collapsed vertebrae, and more tests and blood work than I ever imagined I could handle.
Myeloma is the grinchiest of grinches. It stole a lot from me that fall and winter.
I missed the school musicals, band concerts, and basketball games. I missed the frenetic activity of a home filled with laughter, singing, rowdy kids, and rambunctious dogs. The Thanksgiving turkey and all of the trimmings were replaced by Ensure and soda crackers. There was to be no gathering with the family and friends for the holidays. No decorating the tree or snowball fights.
In between two doctor’s appointments on Christmas Day, my wife and I called our two daughters on the phone. They were staying with relatives 650 miles away in Chicago. We missed them terribly.
But as we gained our bearings, it eventually dawned on us that I was exactly where I needed to be. I was doing what I needed to be doing. I was immersed in a world where countless people were focused on helping me to get better—helping me to get back to my family.
I navigated through the rigors of treatment a day at a time. Those days turned into weeks, then into months, and before I knew it, it was nearing the fall of 2009 and I was back home. I still didn’t feel like my old self, but my new self was in complete response to treatment. My pain was much less than it had been a year earlier. I was surrounded by my loving family and friends.
And now fast-forward to today. I have a year of maintenance therapy behind me, and I am still in complete response. If I am feeling well enough, I never miss a school or church activity. I speak to groups about myeloma and offer support to newly diagnosed patients.
I am slowly getting back into the rhythm of normal life – something I couldn’t even imagine doing two years ago. I am blessed to be able to continue fighting the good fight, and I’m excited that there is more hope in the myeloma world now than ever before.
Myeloma takes so much from us. I’m busy taking it back. And by the way, I’m getting much better at dodging snowballs!
Warm wishes and peace to all of you this holiday season!
Sean
For in-depth information, news and features about multiple myeloma visit The Myeloma Beacon
Friday, November 12, 2010
Myeloma Maintenance Anniversary
Time flies when you’re having fun!
And time, as we Multiple Myeloma patients know all-too-well, is a precious commodity. We all want more of it! And some of us are picky enough to want a good quality of life, too.
I wouldn’t characterize fighting Multiple Myeloma as a fun-filled joyride to a picnic, but the two years that I’ve squared-off against this formidable foe have passed rather quickly. Maybe it’s my quirky attitude which has allowed me to see the highlights among the low lights.
Or maybe it’s the Oxycodone! Just kidding – it’s probably a combination of a lot of things…and the Oxycodone. Hey, ibuprofen hasn't worked well on my collapsed vertebrae and other broken bones!
If I’ve learned anything while being the protagonist in this chaotic, life-changing mess that I’ve gotten myself into, it’s been to grab hold of and celebrate the seemingly small, positive things that happen along the way.
Yesterday, I quietly commemorated my first annual anniversary of weekly Velcade® infusions, a 21 days per month regimen of Revlimid® capsules and once-per-week dexamethasone tablets taken to chase the Velcade®. This Velcade® infusion is administered with high hilarity and pomp and circumstance (and great skill) by the terrific oncology nurses at Skaggs Cancer Center in Branson, Missouri.
As Dr. Barlogie, Dr. Nair and the world-class MIRT team guided me into a complete response (CR) through high-dose chemotherapy and stem cell transplants, I knew that everything wasn’t a ‘done deal’. I saw the wisdom in continuing to batter MM with the VRD arsenal.
After roughly 16 or 17 months in CR, we continue to use this combination of novel chemotherapeutic maintenance agents, and quarterly infusions of the bisphosphonate Zometa®, to keep up the onslaught. These guys are trying to find a cure for my MM. I love them for it.
Whether you believe in the maintenance therapy scheme (some practitioners don’t), it has kept my M-spike at 0.0 and my side effects have been tolerable. While Revlimid® and Velcade® have lowered some of my blood counts, I generally feel good, not 100% like when I was 21 or 31 or 41 for crying out loud, but not too bad at 51. I have very mild neuropathy, not enough to dictate a dosage or medication change. What we in the Myeloma world don’t yet know is whether maintenance will impact my overall survival time.
Clinical trials and errors (that’s what I said!) will get us ever closer to the answers we seek about all aspects of Myeloma treatment. I’m happy to help, in my small way, to ensure that we keeping moving ahead.
I am grateful to the pharmaceutical companies and their researchers (and the FDA oversight!) that have developed the drugs I use in maintenance. Thanks to the Celgene Corporation for Revlimid®, Roxane Laboratories Inc. for the generic Dexamethasone and to Millennium: The Takeda Oncology Company for VELCADE®.
Do I wish the medicines were less expensive? Yep! Am I grateful to my insurance companies for working with me to be able to better afford these wonder drugs? Absolutely! Am I aware that they both want to make money? You bet! If they don’t make money, they don’t develop Myeloma drugs and cover these orphan cancers.
Anyway, one year of maintenance down, two more to go! Maybe by then we will have discovered that diet coke and pizza, consumed in exacting quantities, will provide a cure for MM. I want in on that trial. At least I hope that they don’t find that that magic novel gastric agent combo is what caused it!
Back to Little Rock next week for my latest three month check-up. MRI, bone & bone marrow biopsy, gene array, blood work and a Dr.'s appointment.. Maybe I'll run into some of you there.
Be good out in Myelomaville! Keep fighting!
Sean
And time, as we Multiple Myeloma patients know all-too-well, is a precious commodity. We all want more of it! And some of us are picky enough to want a good quality of life, too.
I wouldn’t characterize fighting Multiple Myeloma as a fun-filled joyride to a picnic, but the two years that I’ve squared-off against this formidable foe have passed rather quickly. Maybe it’s my quirky attitude which has allowed me to see the highlights among the low lights.
Or maybe it’s the Oxycodone! Just kidding – it’s probably a combination of a lot of things…and the Oxycodone. Hey, ibuprofen hasn't worked well on my collapsed vertebrae and other broken bones!
If I’ve learned anything while being the protagonist in this chaotic, life-changing mess that I’ve gotten myself into, it’s been to grab hold of and celebrate the seemingly small, positive things that happen along the way.
Yesterday, I quietly commemorated my first annual anniversary of weekly Velcade® infusions, a 21 days per month regimen of Revlimid® capsules and once-per-week dexamethasone tablets taken to chase the Velcade®. This Velcade® infusion is administered with high hilarity and pomp and circumstance (and great skill) by the terrific oncology nurses at Skaggs Cancer Center in Branson, Missouri.
As Dr. Barlogie, Dr. Nair and the world-class MIRT team guided me into a complete response (CR) through high-dose chemotherapy and stem cell transplants, I knew that everything wasn’t a ‘done deal’. I saw the wisdom in continuing to batter MM with the VRD arsenal.
After roughly 16 or 17 months in CR, we continue to use this combination of novel chemotherapeutic maintenance agents, and quarterly infusions of the bisphosphonate Zometa®, to keep up the onslaught. These guys are trying to find a cure for my MM. I love them for it.
Whether you believe in the maintenance therapy scheme (some practitioners don’t), it has kept my M-spike at 0.0 and my side effects have been tolerable. While Revlimid® and Velcade® have lowered some of my blood counts, I generally feel good, not 100% like when I was 21 or 31 or 41 for crying out loud, but not too bad at 51. I have very mild neuropathy, not enough to dictate a dosage or medication change. What we in the Myeloma world don’t yet know is whether maintenance will impact my overall survival time.
Clinical trials and errors (that’s what I said!) will get us ever closer to the answers we seek about all aspects of Myeloma treatment. I’m happy to help, in my small way, to ensure that we keeping moving ahead.
I am grateful to the pharmaceutical companies and their researchers (and the FDA oversight!) that have developed the drugs I use in maintenance. Thanks to the Celgene Corporation for Revlimid®, Roxane Laboratories Inc. for the generic Dexamethasone and to Millennium: The Takeda Oncology Company for VELCADE®.
Do I wish the medicines were less expensive? Yep! Am I grateful to my insurance companies for working with me to be able to better afford these wonder drugs? Absolutely! Am I aware that they both want to make money? You bet! If they don’t make money, they don’t develop Myeloma drugs and cover these orphan cancers.
Anyway, one year of maintenance down, two more to go! Maybe by then we will have discovered that diet coke and pizza, consumed in exacting quantities, will provide a cure for MM. I want in on that trial. At least I hope that they don’t find that that magic novel gastric agent combo is what caused it!
Back to Little Rock next week for my latest three month check-up. MRI, bone & bone marrow biopsy, gene array, blood work and a Dr.'s appointment.. Maybe I'll run into some of you there.
Be good out in Myelomaville! Keep fighting!
Sean
Tuesday, November 9, 2010
Myeloma Beacon Total Therapy Article
My Myeloma Beacon article thoughts on Total Therapy at UAMS.
http://www.myelomabeacon.com/news/2010/11/02/seans-burgundy-thread-my-adventures-through-total-therapy/
See you around in Myelomaville!
http://www.myelomabeacon.com/news/2010/11/02/seans-burgundy-thread-my-adventures-through-total-therapy/
See you around in Myelomaville!
Reliving the Old Days... Sort Of
I received a warm, beautifully written note via a Facebook personal message a couple of weeks ago.
John described his new home on the Atlantic coast of Florida and how well his kids were doing in their young work lives. Theresa, his wife, had taken early retirement from many years as an executive assistant with a marketing company and was looking forward to volunteering in their new community. John said that she was even prettier than she was in college.
He went on to express how sorry he was that I had been battling Multiple Myeloma. He looked MM up on the internet and he lamented how difficult it must be to face a situation like this, but if anyone could get through it, it would be me. I was always the strong one in the group.
He then recounted that I was the instigator of the practical jokes (remember the Sigma Nu party?) and good times we had in our undergraduate days at Florida State University and how much he had thought.....
WAIT!!
I didn't go to Florida State University! Come to think of it, John and Theresa's names didn't at all ring a bell. Sigma what? I know that chemo brain did interesting things to me, but as far as I know, I haven't suffered any amnesia or loss of identity.
I sent a message to John thanking him for his thoughtful note recounting the 'good old days' and how much fun it was to read, but...
I also gave him the good news that his friend from yesteryear, Sean Murray, most likely didn't have MM.
A couple of days later I got nice follow-up message from John and, apparently, Theresa thought that my picture looked a lot like John's old buddy, Sean. The mix-up was put squarely on the shoulders of a friend-of-a-friend-of-a-friend. John thinks that Theresa has too much time on her hands. A good laugh was shared by all!
The good news is that the other Sean Murray does, indeed, not have Myeloma. Looking forward to hearing those same words about this Sean Murray some day!
Stay connected out there in Myelomaville!
John described his new home on the Atlantic coast of Florida and how well his kids were doing in their young work lives. Theresa, his wife, had taken early retirement from many years as an executive assistant with a marketing company and was looking forward to volunteering in their new community. John said that she was even prettier than she was in college.
He went on to express how sorry he was that I had been battling Multiple Myeloma. He looked MM up on the internet and he lamented how difficult it must be to face a situation like this, but if anyone could get through it, it would be me. I was always the strong one in the group.
He then recounted that I was the instigator of the practical jokes (remember the Sigma Nu party?) and good times we had in our undergraduate days at Florida State University and how much he had thought.....
WAIT!!
I didn't go to Florida State University! Come to think of it, John and Theresa's names didn't at all ring a bell. Sigma what? I know that chemo brain did interesting things to me, but as far as I know, I haven't suffered any amnesia or loss of identity.
I sent a message to John thanking him for his thoughtful note recounting the 'good old days' and how much fun it was to read, but...
I also gave him the good news that his friend from yesteryear, Sean Murray, most likely didn't have MM.
A couple of days later I got nice follow-up message from John and, apparently, Theresa thought that my picture looked a lot like John's old buddy, Sean. The mix-up was put squarely on the shoulders of a friend-of-a-friend-of-a-friend. John thinks that Theresa has too much time on her hands. A good laugh was shared by all!
The good news is that the other Sean Murray does, indeed, not have Myeloma. Looking forward to hearing those same words about this Sean Murray some day!
Stay connected out there in Myelomaville!
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