One of the points of argument I had with the neurologist I fired in November was about FDA approval of the MS drug Lemtrada (formerly known as Campath). Just back from a Sanofi/Genzyme sales conference, he was convinced that the drug would be approved in December and that I should wait for it rather than following through with my hsct plans.
My review of the business press had indicated that the drug's approval would be significantly delayed or outright rejected due to safety concerns. The neurologist refused to even look at the article I had found, preferring to believe a drug company sales rep over his own patient. I can only imagine what kind of graft was exchanged with my neurologist and many others who attended that conference.
It is not a happy thing that approval of an MS drug with the potential to help MS patients has been delayed and might not ever be approved. However, it is a travesty that a drug company and a bunch of puppet neurologists who should have known better dangled the hope of Lemtrada's imminent approval to patients who opted to not pursue other available options. For many MS patients like me, timely treatment equals mobility preservation.
I feel somewhat vindicated in my decision to trust my own research and take control of my own healthcare. But I'm also mad as hell at the thought of the many MS patients who have once again been harmed by the drug industry's sowing of false hope.
Today's news:
Lemtrada rejected by FDA
The article my neurologist refused to read:
Report slams Genzyme's MS drug on eve of hearing
Monday, December 30, 2013
The Hair
Both my mother and father have thick, luxurious hair. It doesn't thin, and it didn't really start to gray until they hit their late fifties. Since then, it's been more of a gradual frosting than a graying.
In volume, it's almost too much hair, actually. Without regular haircuts, Dad can start to look a bit insane; a cross between Einstein and the Unabomber, perhaps. Fortunately, Dad's obsession is more with chainsaws than with nuclear physics and blowing things up. So far, this has worked out just fine for the world.
Mom keeps her hair styled just right, so she always looks fabulous. Like Annette Funicello, perhaps. Though Annette died of MS complications at age 70, it looks like my mom is going march past that landmark in good condition. My dad, a county full of farm cats, my sister, and I are quite thankful for that.
It's no surprise that I inherited the genes for thick hair. Like my dad, if I don't get regular haircuts, I start to look crazy. Amongst friends, my hair is a running joke. After a few beers, they've been known to grab hold and tug to see if it's real. When the hair doesn't pop off, laughter ensues.
Now, three weeks after my blast of stem cell-mobilizing chemo, my hair is frazzled and starting to fall out. I knew this would happen, so it's not a shock. But it is still a bit unnerving to watch my best physical attribute now starting to plug the bathtub drain. It may be an illusion, but I'm convinced that the follicles actually hurt. I'm also hesitant to look in a mirror. Grandpa's stories of sheep dying of a heart attack after being sheared creep forward from the back of my mind. He loved telling the tale of a sheep who thought it was a dog and was shocked on shearing day.
But I'm not a sheep or a dog. Just a guy with hair falling into my computer keyboard. It's 10 below zero outside, and I should probably go get a cheap buzzcut at the local stripmall, then maybe get a stylish hat.
If any hair survives into January, it will be fully obliterated by a much higher dose of chemo in mid January. God and science willing, my new immune system will be functioning by early February. The hair should start to grow back by May. More importantly, my MS will be stopped and my walking can start to improve. Leaning on walls and furniture is getting old.
In volume, it's almost too much hair, actually. Without regular haircuts, Dad can start to look a bit insane; a cross between Einstein and the Unabomber, perhaps. Fortunately, Dad's obsession is more with chainsaws than with nuclear physics and blowing things up. So far, this has worked out just fine for the world.
Mom keeps her hair styled just right, so she always looks fabulous. Like Annette Funicello, perhaps. Though Annette died of MS complications at age 70, it looks like my mom is going march past that landmark in good condition. My dad, a county full of farm cats, my sister, and I are quite thankful for that.
It's no surprise that I inherited the genes for thick hair. Like my dad, if I don't get regular haircuts, I start to look crazy. Amongst friends, my hair is a running joke. After a few beers, they've been known to grab hold and tug to see if it's real. When the hair doesn't pop off, laughter ensues.
Now, three weeks after my blast of stem cell-mobilizing chemo, my hair is frazzled and starting to fall out. I knew this would happen, so it's not a shock. But it is still a bit unnerving to watch my best physical attribute now starting to plug the bathtub drain. It may be an illusion, but I'm convinced that the follicles actually hurt. I'm also hesitant to look in a mirror. Grandpa's stories of sheep dying of a heart attack after being sheared creep forward from the back of my mind. He loved telling the tale of a sheep who thought it was a dog and was shocked on shearing day.
But I'm not a sheep or a dog. Just a guy with hair falling into my computer keyboard. It's 10 below zero outside, and I should probably go get a cheap buzzcut at the local stripmall, then maybe get a stylish hat.
If any hair survives into January, it will be fully obliterated by a much higher dose of chemo in mid January. God and science willing, my new immune system will be functioning by early February. The hair should start to grow back by May. More importantly, my MS will be stopped and my walking can start to improve. Leaning on walls and furniture is getting old.
Sunday, December 29, 2013
Bagels and Brunch Reunion
One year after the divorce, what can be said about the end of a 14-year marriage? It is the elephant in the room I have not mentioned in this blog. Suffice to say we chased a dream and woke up when I got diagnosed with MS. Though MS wasn't the only cause of the end, it certainly did not help.
Relationships are hard enough without the stress of an erratic debilitating disease. Despite platitudes about "in sickness and in health," life is more complicated than that. We tried mightily, but in the end we were not making one another better people by staying together. It was truly a no-fault divorce. We cried and parted as civilly as any couple could.
The years were not wasted. We loved, worked hard, played hard, helped raise a delightful young lady and traveled to some very wonderful places. We remodeled and paid off the mortgage on our house in addition to saving a bit of money. When we sold the house and divided the property, it was enough for me to buy a nice condo, pay cash for the expensive hsct treatment in Chicago, and have some left to live on if recovery from chemo takes longer than expected. I'm not rich, but I'm not broke. I expect to continue working for a living. For all of that, I am forever grateful to Jill.
And I thoroughly enjoyed visits from Jill's daughter Anna while I was in Chicago. The girl I've known since she was four is now 19, mature beyond her years, and thriving at Loyola University. Between final exams, Anna took a cross-town bus to visit me with snacks, bagels and good conversation. When Jill connected though Chicago on a business flight, the three of us got together for a very nice brunch. As usual, Anna's enthusiasm was contagious. It made me think about my new MS-free life ahead. If I can muster even a fraction of Anna's energy, single life is going to be better than OK.
Relationships are hard enough without the stress of an erratic debilitating disease. Despite platitudes about "in sickness and in health," life is more complicated than that. We tried mightily, but in the end we were not making one another better people by staying together. It was truly a no-fault divorce. We cried and parted as civilly as any couple could.
The years were not wasted. We loved, worked hard, played hard, helped raise a delightful young lady and traveled to some very wonderful places. We remodeled and paid off the mortgage on our house in addition to saving a bit of money. When we sold the house and divided the property, it was enough for me to buy a nice condo, pay cash for the expensive hsct treatment in Chicago, and have some left to live on if recovery from chemo takes longer than expected. I'm not rich, but I'm not broke. I expect to continue working for a living. For all of that, I am forever grateful to Jill.
And I thoroughly enjoyed visits from Jill's daughter Anna while I was in Chicago. The girl I've known since she was four is now 19, mature beyond her years, and thriving at Loyola University. Between final exams, Anna took a cross-town bus to visit me with snacks, bagels and good conversation. When Jill connected though Chicago on a business flight, the three of us got together for a very nice brunch. As usual, Anna's enthusiasm was contagious. It made me think about my new MS-free life ahead. If I can muster even a fraction of Anna's energy, single life is going to be better than OK.
Saturday, December 28, 2013
The Forgetting
Halfway done with my hsct immune system reset, and staring down the barrel of 2014 Auld Lang Syne, I'm obliged to remember why it is important to forget. Too much remembering of mistakes, bad luck, good luck, wrongdoing and rightdoing could drive a man insane. So could reliving too vividly all those moments of happiness and bliss that make an entire lifetime seem worthwhile until we mourn their loss. We learn from the past, we dread it, we love it, but we cannot live there.
Immunity is a different kind of memory, but with similar peril. Get exposed to chickenpox as a child, and the immune system remembers how to fight that virus in the future. Same with vaccines; be it polio, flu, tetanus or any other, the injection of a modified live or even a dead virus elicits an immune response that remains on a hair trigger, guarding against exposure to the actual disease for many years.
An autoimmune disorder, such as MS, might just be too much immune system memory. Maybe it was my exposure to Epstein-Barr virus (mono from kissing a pretty girl), or LaCrosse encephalitis (from being bitten by swamp mosquitoes) that set me down the path to MS. Or it could have been exposure to pesticides and solvents on the farm. Whatever, long after the disease or chemical had been purged from my body, my immune system remained hell-bent on attacking where the invading pathogen used to be. It's been open season on the protective myelin sheath of my central nervous system ever since.
I will not let a memory that never fades poison my future. That's true for life in general, and now for my immune system as well. Resetting my immune system and stopping MS with chemo won't be easy, but it's nothing less than another shot at life.
Happy New Year!
Immunity is a different kind of memory, but with similar peril. Get exposed to chickenpox as a child, and the immune system remembers how to fight that virus in the future. Same with vaccines; be it polio, flu, tetanus or any other, the injection of a modified live or even a dead virus elicits an immune response that remains on a hair trigger, guarding against exposure to the actual disease for many years.
An autoimmune disorder, such as MS, might just be too much immune system memory. Maybe it was my exposure to Epstein-Barr virus (mono from kissing a pretty girl), or LaCrosse encephalitis (from being bitten by swamp mosquitoes) that set me down the path to MS. Or it could have been exposure to pesticides and solvents on the farm. Whatever, long after the disease or chemical had been purged from my body, my immune system remained hell-bent on attacking where the invading pathogen used to be. It's been open season on the protective myelin sheath of my central nervous system ever since.
I will not let a memory that never fades poison my future. That's true for life in general, and now for my immune system as well. Resetting my immune system and stopping MS with chemo won't be easy, but it's nothing less than another shot at life.
Happy New Year!
Wednesday, December 25, 2013
Reflection, Rest and Recuperation
With a successful stem cell harvest behind me, I can now reflect a bit on what I just did and why. Logistically, the simple answer is that I now have the stem cells I'll need to build a new immune system after chemo is used to wipe out my defective autoimmune system in mid-January.
The aggressive, inflammatory nature of my relapsing/remitting MS is one of the things that makes me an excellent example of someone who can benefit from Dr. Burt's hsct protocol. I'm not always totally crippled, but when my immune system flares, my central nervous system shorts out and shuts down.
Since June, the flares have been coming on horrifically hard, locking up my legs and causing crucial body system shutdowns. The fact that I can go from wheelchair-bound to getting up and walking around means that most of my issue is with immune system flares and is not yet due to permanent nerve damage. This was confirmed with several MRI scans that showed active enhancing lesions on my brainstem. Allowing the flares to continue would certainly cause permanent disability. This is what convinced Dr. Burt to treat me outside of his Phase 3 study. Getting randomized into the control group of conventional drug treatment would have allowed further attacks and potential nerve damage.
Consulting with Dr. Burt and nurse Amy, we concluded that mild fever from the neupogen is probably what triggered another awful ms relapse with severe spasticity during the injections. It just doesn't take much to exacerbate that weak link.
But I am hale and hearty in other ways. Unlike most other patients, I had no nausea or bone pain from the neupogen.
Getting home on the plane was a piece of cake. But, I found that Christmas eve might be the only day of the year when wheelchair row is the longest line at airport security. 100 grandmas, and me. But, like I said, I'm not totally crippled yet, so I yelled "praise Jesus" got up and wobbled five steps through the Total Recall xray machine. That saved 20 minutes by avoiding a pat down.
Now I'm just resting and nursing the wound from the pic line catheter that was in my neck. Installing that thing hurt a lot more than I expected. I would have said some very bad words, but the surgeon literally had me by the jugular.
The aggressive, inflammatory nature of my relapsing/remitting MS is one of the things that makes me an excellent example of someone who can benefit from Dr. Burt's hsct protocol. I'm not always totally crippled, but when my immune system flares, my central nervous system shorts out and shuts down.
Since June, the flares have been coming on horrifically hard, locking up my legs and causing crucial body system shutdowns. The fact that I can go from wheelchair-bound to getting up and walking around means that most of my issue is with immune system flares and is not yet due to permanent nerve damage. This was confirmed with several MRI scans that showed active enhancing lesions on my brainstem. Allowing the flares to continue would certainly cause permanent disability. This is what convinced Dr. Burt to treat me outside of his Phase 3 study. Getting randomized into the control group of conventional drug treatment would have allowed further attacks and potential nerve damage.
Consulting with Dr. Burt and nurse Amy, we concluded that mild fever from the neupogen is probably what triggered another awful ms relapse with severe spasticity during the injections. It just doesn't take much to exacerbate that weak link.
But I am hale and hearty in other ways. Unlike most other patients, I had no nausea or bone pain from the neupogen.
Getting home on the plane was a piece of cake. But, I found that Christmas eve might be the only day of the year when wheelchair row is the longest line at airport security. 100 grandmas, and me. But, like I said, I'm not totally crippled yet, so I yelled "praise Jesus" got up and wobbled five steps through the Total Recall xray machine. That saved 20 minutes by avoiding a pat down.
Now I'm just resting and nursing the wound from the pic line catheter that was in my neck. Installing that thing hurt a lot more than I expected. I would have said some very bad words, but the surgeon literally had me by the jugular.
Monday, December 23, 2013
Abundant harvest
Stem cell harvest complete! 15 million harvested and I only needed 2 million. Considering how hard it was to get them — from chemo, to harsh drugs, to a painful pickline neck catheter — it's too bad I can't donate or sell the extra. Though they'll help me kick MS ass in January, these cells are quite useless to anyone else. Doc said not even close family members can use them, with the exception of identical twins.
Abundant harvest is not a given. A gentleman two doors down from me went through the same procedure, but did not make the minimum. He has to try again tomorrow while I get to head home. A tiny woman across the hall got 8 million on her first try. You just never know.
Abundant harvest is not a given. A gentleman two doors down from me went through the same procedure, but did not make the minimum. He has to try again tomorrow while I get to head home. A tiny woman across the hall got 8 million on her first try. You just never know.
Friday, December 20, 2013
Three Friends
Dear Doug, Sylvia and Tony: Despite your contentions that I don't ask for help, you came to Chicago and shepherded me through some difficult medical moments. The ugliness included a cytoxan chemo infusion, another crippling MS attack, and several exotic drug injections.
Now, the worst of my latest MS attack seems to have passed and today's blood test showed all is well on cell counts. Just a few more injections until my stem cells are ready to be harvested on Monday. Then phase 1 of stopping my MS will be complete!
Thank you for remaining calm, attentive caregivers and companions during moments where others might have freaked out or overreacted to the detriment of my quest to see this through. You made my situation better, not worse.
Best,
Wayne
Now, the worst of my latest MS attack seems to have passed and today's blood test showed all is well on cell counts. Just a few more injections until my stem cells are ready to be harvested on Monday. Then phase 1 of stopping my MS will be complete!
Thank you for remaining calm, attentive caregivers and companions during moments where others might have freaked out or overreacted to the detriment of my quest to see this through. You made my situation better, not worse.
Best,
Wayne
Thursday, December 19, 2013
Neupogen Injections
After hundreds of jabbings, stabbings, infusions and blood draws, you might think needles wouldn't bother me anymore. But seven years with MS and its intrusive treatments have done little to ease my needle phobia.
The tiny needles terrorize me as much as the big ones. Perhaps I'm paranoid that they'll break off if I flinch or sneeze. To get by, I've learned meditation tricks. My happy places include warm seas with dolphins, long motorcycle rides, and secret snuggles with Salma Hyek in an arcade photo booth. She laughs, bites my ear, we snap a picture... and the needle is in. Details are important for distracting fantasies.
There's been a lot of needles and not enough Salma this week, but the cute blonde nurses have been very competent and kind as they've attended to me. Everyone at Northwestern is fantastic. Even the hospital food is very good.
Friday and Saturday was an infusion of Cytoxan chemo to shock my bone marrow and begin the release of stem cells into my blood. That required a big needle and a catheter tube into my jugular vein for a few hours , followed by several blood samples with smaller needles to make sure that the Cytoxan was doing its job without wrecking my kidneys. Blood tests showed that white blood cell and other immune cell counts had doubled, just as expected.
I left the hospital on Saturday and checked back into my hotel room with friends Sylvia ands Doug watching over me. Job one has been to stabilize my headache, nausea and muscle spasms with several different meds.
Job two at the hotel has been self injections of Neupogen to release even more immune stem cells into my blood until stem cell harvest on December 23. As the stem cell count rises, my MS symptoms are getting worse. This is expected, and temporary. My hands and legs are very shaky right now. Typing this blog is slow and difficult. Walking with a cane is now almost impossible. I'm grateful to have friends assisting with my injection and mobility issues.
Do not worry if I don't blog much. Getting through the next weeks will be a challenge. I just need to chill and have faith that this is all worth it. Certainly there will be fewer needles as I leave MS and its drugs behind.
Merry Christmas!
Wayne
The tiny needles terrorize me as much as the big ones. Perhaps I'm paranoid that they'll break off if I flinch or sneeze. To get by, I've learned meditation tricks. My happy places include warm seas with dolphins, long motorcycle rides, and secret snuggles with Salma Hyek in an arcade photo booth. She laughs, bites my ear, we snap a picture... and the needle is in. Details are important for distracting fantasies.
There's been a lot of needles and not enough Salma this week, but the cute blonde nurses have been very competent and kind as they've attended to me. Everyone at Northwestern is fantastic. Even the hospital food is very good.
Friday and Saturday was an infusion of Cytoxan chemo to shock my bone marrow and begin the release of stem cells into my blood. That required a big needle and a catheter tube into my jugular vein for a few hours , followed by several blood samples with smaller needles to make sure that the Cytoxan was doing its job without wrecking my kidneys. Blood tests showed that white blood cell and other immune cell counts had doubled, just as expected.
I left the hospital on Saturday and checked back into my hotel room with friends Sylvia ands Doug watching over me. Job one has been to stabilize my headache, nausea and muscle spasms with several different meds.
Job two at the hotel has been self injections of Neupogen to release even more immune stem cells into my blood until stem cell harvest on December 23. As the stem cell count rises, my MS symptoms are getting worse. This is expected, and temporary. My hands and legs are very shaky right now. Typing this blog is slow and difficult. Walking with a cane is now almost impossible. I'm grateful to have friends assisting with my injection and mobility issues.
Do not worry if I don't blog much. Getting through the next weeks will be a challenge. I just need to chill and have faith that this is all worth it. Certainly there will be fewer needles as I leave MS and its drugs behind.
Merry Christmas!
Wayne
Wednesday, December 11, 2013
Positive Reinforcement
The guy in this video had a neurologist who told him to go for it. Now he is five years MS-free. My neuro tried to scare me off with made-up tales of doom. I fired my neuro and will just keep watching this video. My stem cell harvest conditioning begins Friday.
https://www.youtube.com/watch?
https://www.youtube.com/watch?
Tuesday, December 10, 2013
Tests passed, waiting for neupogen
It appears that I have passed all the tests that might have have put my procedure on hold or disqualified me. So now I wait for Friday, when I will get a short blast of cytoxan chemo, then go back to the hotel to inject myself with neupogen for several days. This is supposed to knock stem cells out of my bone marrow and into my blood, where they can be harvested by a dialysis machine.
For cytoxan side effects, I'm told to expect a condition referred to by patients as wasabi nose. I actually like wasabi, so we'll see how accurate the analogy is. Vision problems and nausea may also occur. From the neupogen, I may get achy bones, fever, nausea and possible vision issues. I don't like any of those, so I may have to dip into the goody bag of drugs my nurse has provided.
In Minneapolis I mostly live alone in my fortress of solitude condo, so time alone in a Chicago hotel isn't much different for me. I'm catching up on my book club reading, working a little on the high-speed wifi, chatting with the hotel help, and meeting a few guests who are here for the same reason as me. A remarkable 20-something young man named Daniel has similar MS issues to mine and is a month ahead of me in the procedure. He's handling it all like a champ, but his mom is with him and worries more than she sleeps. How can anyone tell a mom not to worry? I can't be done. She is a lovely lady and I just hope she doesn't get sick from stress and sleep deprivation.
Though I don't mind being alone, I still love to see people. While in Chicago, it's been very nice to see my stepdaughter Anna twice! She's a sophomore at Loyola and well on her way to taking over the world with a tour de force of charm, scholarship and determination. I'm amazed at the fine young lady she has become. Also, my cousin Jennifer and her husband Jamie visited for a day of dining and museum gawking with me. They are delightfully smart, kind people to chat with. And soon, my friends Sylvia, Doug, Tony, Kelly and Marry Bess will be arriving in waves to keep an eye on me and/or cause a ruckus. I'll just have to see what, if any, of their high jinks I'll be up for when the neupogen kicks in.
For cytoxan side effects, I'm told to expect a condition referred to by patients as wasabi nose. I actually like wasabi, so we'll see how accurate the analogy is. Vision problems and nausea may also occur. From the neupogen, I may get achy bones, fever, nausea and possible vision issues. I don't like any of those, so I may have to dip into the goody bag of drugs my nurse has provided.
In Minneapolis I mostly live alone in my fortress of solitude condo, so time alone in a Chicago hotel isn't much different for me. I'm catching up on my book club reading, working a little on the high-speed wifi, chatting with the hotel help, and meeting a few guests who are here for the same reason as me. A remarkable 20-something young man named Daniel has similar MS issues to mine and is a month ahead of me in the procedure. He's handling it all like a champ, but his mom is with him and worries more than she sleeps. How can anyone tell a mom not to worry? I can't be done. She is a lovely lady and I just hope she doesn't get sick from stress and sleep deprivation.
Though I don't mind being alone, I still love to see people. While in Chicago, it's been very nice to see my stepdaughter Anna twice! She's a sophomore at Loyola and well on her way to taking over the world with a tour de force of charm, scholarship and determination. I'm amazed at the fine young lady she has become. Also, my cousin Jennifer and her husband Jamie visited for a day of dining and museum gawking with me. They are delightfully smart, kind people to chat with. And soon, my friends Sylvia, Doug, Tony, Kelly and Marry Bess will be arriving in waves to keep an eye on me and/or cause a ruckus. I'll just have to see what, if any, of their high jinks I'll be up for when the neupogen kicks in.
Friday, December 6, 2013
Dr. Burt
I met Dr. Richard Burt and his smart head nurse again this week. We talked about my test results and the discomforts and dangers I can expect moving forward in the process of rebooting my immune system with chemotherapy and my own stem cells. When Dr. Burt asked me if I understood what I was in for, I told him I'd already been following his work for more than two years. He's treated more than 100 people without killing them. Yes, I know that's not a guarantee of safety. But I'd fired my neurologist and was moving ahead. To paraphrase Hunter S. Thompson, I already bought my ticket, now it's time to take the ride.
I am not a scientist, but brilliant scientists who change the world excite me. I realized this in the 1990s when I snagged a job as a graduate science writer at the University of Wisconsin. My job was to root out professors from their laboratories, write stories about their research, and popularize their work enough to attract research funding from wealthy non-scientists. The work was science journalism, but it was also PR. I was good enough at it to win a two-year paid fellowship, and then was honored with a trip to the National Press Club to meet Glenn T. Seaborg, winner of the 1951 Nobel Prize in Chemistry and a major contributor to the Manhattan Project. Seaborg died of old age a few years after I met him. By then I was hooked on science writing and on my way to interview more great scientists. My 25-year career, reporting on and promoting corporate research in the rapidly-growing fields of high-tech agriculture, has been a fascinating way to earn a living.
Now multiple sclerosis, and my drive to stop it, has hit life's pause button for me. Looking back, maybe it's not surprising how I responded when standard MS treatments failed me. I found and persuaded Dr. Richard Burt, one of world's most brilliant immunologists, to treat me with his innovative chemotherapy and adult stem cell protocol.
In 2011, Science Illustrated ranked Dr. Burt's stem cell work as one of the Top 10 Advances of the Decade. Burt was also selected for the Scientific American 50.
The odds of me recruiting someone of Dr. Burt's stature to stop my MS seem astronomical. Yet here I am after a long journey on a rocketship to the moon. Many have applied to his program and been rejected. I feel very fortunate. Though the process I'm about to go through is frightening, it helps to remind myself I've got the most competent medical team on the planet working on me.
I am not a scientist, but brilliant scientists who change the world excite me. I realized this in the 1990s when I snagged a job as a graduate science writer at the University of Wisconsin. My job was to root out professors from their laboratories, write stories about their research, and popularize their work enough to attract research funding from wealthy non-scientists. The work was science journalism, but it was also PR. I was good enough at it to win a two-year paid fellowship, and then was honored with a trip to the National Press Club to meet Glenn T. Seaborg, winner of the 1951 Nobel Prize in Chemistry and a major contributor to the Manhattan Project. Seaborg died of old age a few years after I met him. By then I was hooked on science writing and on my way to interview more great scientists. My 25-year career, reporting on and promoting corporate research in the rapidly-growing fields of high-tech agriculture, has been a fascinating way to earn a living.
Now multiple sclerosis, and my drive to stop it, has hit life's pause button for me. Looking back, maybe it's not surprising how I responded when standard MS treatments failed me. I found and persuaded Dr. Richard Burt, one of world's most brilliant immunologists, to treat me with his innovative chemotherapy and adult stem cell protocol.
In 2011, Science Illustrated ranked Dr. Burt's stem cell work as one of the Top 10 Advances of the Decade. Burt was also selected for the Scientific American 50.
The odds of me recruiting someone of Dr. Burt's stature to stop my MS seem astronomical. Yet here I am after a long journey on a rocketship to the moon. Many have applied to his program and been rejected. I feel very fortunate. Though the process I'm about to go through is frightening, it helps to remind myself I've got the most competent medical team on the planet working on me.
Tuesday, December 3, 2013
A day in the life of a lab rat named Wayne
I've been subjected to many medical tests and procedures in recent years, but nothing quite like yesterday, bouncing from one Northwestern med tech to the next. The tests included:
Pulmonary function, EKG, heart and vein ultrasound, chest x-ray, 14 vials of blood and peeing in a cup. I got to skip the MRI scan because I just did one a week earlier in Minneapolis.
Since I'm generally healthy except for MS, I expect that I passed everything just fine. But danged if I still don't know how to tie a hospital gown shut. I personally don't care who sees my backside, but may need to pick up some duct tape later to avoid being banned from the hospital.
After I got my street clothes back on, the final lab rat test of the day was optional and self-imposed. Rather than hail a cab, I rolled my wheelchair around the Northwestern campus, along Lakeshore Drive and back to the hotel. It was a pretty decent arm and ab workout, and somewhat enjoyable to get out on a 50-degree December day. My phone gps said I went a little over a mile. Maybe not impressive, until one considers that the streetward slope of Chicago sidewalks requires braking with one arm and pushing forward with the other to avoid rolling out in front of auto and bus traffic. It was inefficiency in motion, but I made it. Now thinking about ordering a Gino's East deep dish pizza.
Pulmonary function, EKG, heart and vein ultrasound, chest x-ray, 14 vials of blood and peeing in a cup. I got to skip the MRI scan because I just did one a week earlier in Minneapolis.
Since I'm generally healthy except for MS, I expect that I passed everything just fine. But danged if I still don't know how to tie a hospital gown shut. I personally don't care who sees my backside, but may need to pick up some duct tape later to avoid being banned from the hospital.
After I got my street clothes back on, the final lab rat test of the day was optional and self-imposed. Rather than hail a cab, I rolled my wheelchair around the Northwestern campus, along Lakeshore Drive and back to the hotel. It was a pretty decent arm and ab workout, and somewhat enjoyable to get out on a 50-degree December day. My phone gps said I went a little over a mile. Maybe not impressive, until one considers that the streetward slope of Chicago sidewalks requires braking with one arm and pushing forward with the other to avoid rolling out in front of auto and bus traffic. It was inefficiency in motion, but I made it. Now thinking about ordering a Gino's East deep dish pizza.
Monday, December 2, 2013
Line Jumper to Chicago
A kid fantasy so common it's a cliche – jump to the head of long lines at Disneyland by riding around in a wheelchair you don't really need.
Fast forward to adulthood, Sunday, Dec 1, 2013 and it's way too real. I've got MS, and the wheelchair is needed. This ain't Disneyland. I must get on a plane to Chicago to start the daunting three-week process of stem cell harvest from my bone marrow. It's phase one of of a stem cell and chemotherapy procedure that I hope will beat this shitty disease and help me live a normal life.
Any number of friends or family members would have gladly driven me to the airport, or all the way to Chicago. I could have hired a cab. But dammit, I bought a condo close to the light rail for a reason. So I roll out of my condo alone at 5:30 am with a backpack on my chair and a suitcase in my lap. It's a brisk eighth-mile roll in the dark to the light rail station. I make it just fine, even if my rig resembles the Clampetts heading off to Beverly Hills.
A lady on the train is eyeing me incredulously, so I strike up a conversation. She's headed to work for her job as a trainer for TSA. I tell her a little bit about the reason for my journey. A few minutes later, we're getting off at the Lindberg terminal and I find that she's temporarily adopted me, going out of her way to guide me up the chutes and ladders maze of wheelchair-friendly elevators that leads from the bowels of the underground light rail station all the way up to airline ticketing.
Throngs of tired, frazzled people are headed home from Thanksgiving, so the lines to ticketing and through security are over an hour long. Fortunately, my new friend from TSA knows everyone who works at the airport. And she has mastered the art of command presence, ordering people out of my way, then jumping me to the front of check-in. I get my ticket and am assigned an airport runner who escorts me to the head of the long line at security, then to my gate.
Anyway, I made it to Chicago alone, but not really alone. It's time for a week of medical testing before my stem cell harvest can begin. Of hundreds of people who applied to this program and were rejected, I was accepted. It's time to rock and roll so I can get rid of the wheelchair. Despite its advantages at the airport, I do not want it.
Wednesday, November 13, 2013
UPDATE:Glad I didn't wait for Lemtrada/Campath/Alemtuzumab
An earlier blog post, Follow the MS Money, explained my reasons for ignoring a neurologist's recommendation to not do HSCT and instead await hoped-for FDA approval of the drug alemtuzumab (Campath/Lemtrada) for treatment of MS sometime in 2014.
A November 11 news item affirms that I made the correct decision to proceed with HSCT. The 2014 launch of Lemtrada is now in doubt because of an unacceptably high risk of thyroid cancer. FDA sorting out the risk/benefit equation for Lemtrada will take longer than expected. I can only imagine how many MS patients will get worse as they await a drug that trades mild improvement in MS symptoms for a high risk of cancer.
A November 11 news item affirms that I made the correct decision to proceed with HSCT. The 2014 launch of Lemtrada is now in doubt because of an unacceptably high risk of thyroid cancer. FDA sorting out the risk/benefit equation for Lemtrada will take longer than expected. I can only imagine how many MS patients will get worse as they await a drug that trades mild improvement in MS symptoms for a high risk of cancer.
I'm glad I did not wait. Though HSCT is not without risk, the potential quality of life benefit is much greater. Whereas Lemtrada has shown a 1 point improvement on the MS disability scale of 1 to 10, HSCT is showing greater than 1 point of improvement, with 2 to 3 points of improvement for highly inflammatory relapsing remitting MS cases like mine.
TOPIC UPDATE:
TOPIC UPDATE:
In the report on Genzyme’s Lemtrada, FDA drug reviewer John Marler detailed a litany of conditions and complications that could be caused by the MS treatment. He also called into question the way clinical trials of the drug were conducted.
“The certainty of the risks of potentially lifelong hypothyroidism [a thyroid condition], serious infusion reactions, melanoma, and other malignancies, Grave’s ophthalmopathy [a thyroid-related eye disease] and other autoimmune disorders and prolonged increased susceptibility to infection may not be balanced by the uncertainty that exists in the limited evidence of potential clinical benefits from clinical trials that were not well-controlled,” Marler wrote. Full article below.
Wednesday, November 6, 2013
People of faith, adult stem cells, and science.
When I first launched this blog on October 27,
2013, many of my friends, colleagues and acquaintances learned for the first
time that I have multiple sclerosis, a disease I have struggled with since 2007. That alone is a big piece of news to
digest.
Bigger still, I piled on additional news with the
word jumble “autologous hematopoieic
stem cell transplant” (HSCT), a procedure I will soon undergo at
Northwestern University in Chicago. Please allow me to define a couple of those
words. Their definition in regard to the type of stem cells involved is important,
and I should have done a better job of defining these words earlier to clarify
that there are no embryonic stem cells involved in HSCT.
AUTOLOGOUS
1: derived from the same individual (me)
2: involving one individual as both donor and
recipient <an autologous stem cell transfusion>
Hematopoietic
refers to organ where blood is formed.
ex. the spongy bone, " a site of the bone where blood is formed" (In
my case, the immune system component of blood, antibodies, lymphocytes and
white blood cells.)
Emotions and Facts
The media has done stems cell science no favors. In
offline conversations, several of my friends, people of faith and science, used
the word “controversy” when referring to stem cells. Online, I have learned
that some people who have already done HSCT try to avoid saying the words “stem
cells” at all, partly because it leads to difficult social situations. I can
understand their reticence. But I believe patients like me must be part of the
solution to an educational problem being grappled with by leaders of both
science and faith institutions, including Northwestern University, the National
Institutes of Health and the Vatican.
Following are two links to demonstrate how
doctors, patients and faith leaders are building bridges of understanding.
After you click the following link, either read the
whole article, or scroll halfway down to read what Dr. Burt had to say at the 2013
Vatican Conference, as well as two of his patients. In December, I will be
another one of Dr. Burt’s patients. Though I am not personally Catholic, I find it very encouraging that the Vatican
is open to listening and learning about stem cell science.
Vatican Conference
Hopes to Promote Truth on Adult Stem Cell Therapy
Following is a
video link to a remarkable young lady who spoke at the 2013 Vatican Conference.
She and her mother describe how horrific disability was stopped and reversed by
the same HSCT procedure I will soon undergo with Dr. Burt. Though her MS attack
started much earlier in life than mine, her MS symptoms and frustrations with
conventional MS drug treatment were very similar to me.
The Purpose of All This for Me
Despite following standard of care MS drug
treatments and suffering their side effects, my MS advanced from a slow
relapsing remitting form to a more rapid aggressive form in June 2013. It put
me in a wheelchair for awhile. After some extreme temporary treatments with steroids and
blood plasma exchanges, my vision and hand coordination has improved and I am
just now starting to ambulate with a cane. This is a very positive indication
that stopping the immune system attacks with chemo will put me on the road to
recovery.
In Chicago, the plan is for my harvested adult stem
cells to be transplanted back to me after chemo wipes out the defective immune
system that is currently attacking my brainstem. In short, MS is trying to cripple
and kill me, so I am turning to fight back and kill it with chemo first. If all
goes well, my stem cells will be transplanted back to quickly rebuild a new
immune system that will no longer attack my central nervous system.
I could not do this without remarkable advances in
technology that will surely become safer and better over time for future
patients. But for me, the time is now. I am putting my life in the hands of Dr.
Burt and his competent staff. I am being afraid and doing it anyway, with great
confidence and faith that this medical adventure will work and give me my life
back.
Thank you all
for your support, well wishes and prayers.
Wednesday, October 30, 2013
Follow the MS Money
As described in my previous post, I am moving ahead with HSCT, an experimental procedure that uses chemo and stem cells to halt MS. This attempt to stop and perhaps cure my MS will cost me significant time, suffering and treasure. It would be easy to chicken out of what I'm about to do.
Except... In addition to maxing out my health insurance deductible every year since my 2007 MS diagnosis, I've been keeping notes and saving an inch-thick stack of medical records to remind myself of some things that that have hurt my health and just really angered me. To sum up what's wrong with health care, and MS treatment in particular, I defer to the old journalist axiom; follow the money. My story is surely a microcosm of a larger problem. My abbreviated MS treatment 1-year diary follows.
March 2013: How Teva, Biogen and FDA probably put me in a wheelchair
The oral drug BG-12 was supposed to be FDA-approved and ready for me to use by March 2013. I needed BG-12 to help me transition off Biogen Idec's infusion drug, Tysabri. Tysabri had stabilized my MS for two years, but a blood test in August 2012 had showed the drug was seriously threatening to give me a deadly brain infection called PML. My neurologist's plan was to safely wash me out of Tysabri and start BG-12 as a replacement. His logic seemed prudent, so I agreed.
But then Teva Pharmaceuticals gamed the FDA to delay BG-12 approval.
http://www.bloomberg.com/news/2013-01-10/teva-cites-bg-12-safety-in-asking-fda-to-add-ms-reviews.html
The FDA delay preserved another quarter of market share for Teva's old first-line MS drug, Copaxone. Teva made millions of dollars off this gambit. I'm sure they did not care even a little bit that their brilliantly orchestrated delay tactic caused thousands of patients to suffer longer with painful Copaxone injections, or me to become wheelchair-bound from a vicious MS attack.
June 2013: An expensive emergency
The resulting MS attack manifested in my legs and torso being locked up in excruciating spasms. Vision and hand coordination also suffered severely. Ataxia and incontinence became an issue. It was hard to do my job as a freelance PR writer and I lost many billable hours, not to mention an entire summer of Minnesota sailing, camping and summer festivals with friends.
The initial rescue treatment to release the spasms was a drug called Acthar. But why $28,000 for ONE week of what is basically hog adrenaline injections? I needed two weeks of Acthar to start recovering from my MS attack. Wait until you see how much the same drug used to cost.
September 2013: The outrageous remarketing of Campath -- Why I'm not waiting for Lemtrada
Instead of doing HSCT, my neurologist recommended I wait for FDA approval of a "new" MS drug called Lemtrada, expected sometime in 2014. Hmm, wait for FDA approval... where had I heard that before? Then I learned about the drug side effects and where Lemtrada came from and I got angry again. Sanofi thinks it can hold MS patients and their insurers over a barrel for a huge markup of an old drug. And they'll probably get away with it.
http://www.fiercepharma.com/story/sanofi-pulls-campath-clear-way-higher-priced-lemtrada/2012-08-21
Except... In addition to maxing out my health insurance deductible every year since my 2007 MS diagnosis, I've been keeping notes and saving an inch-thick stack of medical records to remind myself of some things that that have hurt my health and just really angered me. To sum up what's wrong with health care, and MS treatment in particular, I defer to the old journalist axiom; follow the money. My story is surely a microcosm of a larger problem. My abbreviated MS treatment 1-year diary follows.
March 2013: How Teva, Biogen and FDA probably put me in a wheelchair
The oral drug BG-12 was supposed to be FDA-approved and ready for me to use by March 2013. I needed BG-12 to help me transition off Biogen Idec's infusion drug, Tysabri. Tysabri had stabilized my MS for two years, but a blood test in August 2012 had showed the drug was seriously threatening to give me a deadly brain infection called PML. My neurologist's plan was to safely wash me out of Tysabri and start BG-12 as a replacement. His logic seemed prudent, so I agreed.
But then Teva Pharmaceuticals gamed the FDA to delay BG-12 approval.
http://www.bloomberg.com/news/2013-01-10/teva-cites-bg-12-safety-in-asking-fda-to-add-ms-reviews.html
The FDA delay preserved another quarter of market share for Teva's old first-line MS drug, Copaxone. Teva made millions of dollars off this gambit. I'm sure they did not care even a little bit that their brilliantly orchestrated delay tactic caused thousands of patients to suffer longer with painful Copaxone injections, or me to become wheelchair-bound from a vicious MS attack.
June 2013: An expensive emergency
The resulting MS attack manifested in my legs and torso being locked up in excruciating spasms. Vision and hand coordination also suffered severely. Ataxia and incontinence became an issue. It was hard to do my job as a freelance PR writer and I lost many billable hours, not to mention an entire summer of Minnesota sailing, camping and summer festivals with friends.
The initial rescue treatment to release the spasms was a drug called Acthar. But why $28,000 for ONE week of what is basically hog adrenaline injections? I needed two weeks of Acthar to start recovering from my MS attack. Wait until you see how much the same drug used to cost.
http://www.fiercepharma.com/story/135m-rights-deal-questcor-locks-rival-its-pricey-acthar-drug/2013-06-17
September 2013: The outrageous remarketing of Campath -- Why I'm not waiting for Lemtrada
Instead of doing HSCT, my neurologist recommended I wait for FDA approval of a "new" MS drug called Lemtrada, expected sometime in 2014. Hmm, wait for FDA approval... where had I heard that before? Then I learned about the drug side effects and where Lemtrada came from and I got angry again. Sanofi thinks it can hold MS patients and their insurers over a barrel for a huge markup of an old drug. And they'll probably get away with it.
http://www.fiercepharma.com/story/sanofi-pulls-campath-clear-way-higher-priced-lemtrada/2012-08-21
http://www.healthline.com/health-news/ms-why-are-ms-drug-prices-so-high-071913
MS is hellishly expensive for patients and very profitable for drug companies. With billions at stake, how hard do you think these companies will actually work for a cure? How hard might they scheme and lobby the FDA to delay a cure? I'm not a crazy conspiracy theorist. I've just watched and experienced MS market dynamics in action, and know that I'm very tired of being a cash cow. Bring on the HSCT chemo.
Sunday, October 27, 2013
Chemo, Stem Cells, MS and Me
In December, 2013, I will become one of the relatively few people with multiple sclerosis to undergo an exciting and unconventional autoimmune disease treatment called autologous hematopoieic stem cell transplant (HSCT) at Northwestern University in Chicago. Out of the roughly 2 million people globally who have MS, just over 100 patients have received this treatment under the supervision of Dr. Richard Burt, one of the world's top experts in the field of immunology.
MS is an autoimmune disease where the immune system mistakenly attacks the myelin sheath that insulates and protects nerves in the spinal cord and brain. As MS attacks continue, the body's central nervous system starts to short out and bad things happen to coordination, mobility, vision and other basic body functions. Early research trials have shown great promise in HSCT stopping this immune system attack. Because research data continues to be collected, Dr. Burt will not yet use the word "cure" to describe HSCT. However, results so far indicate that HSCT is the closest thing to a cure that exists today. I am very excited to be part of this research.
The HSCT process, which requires chemotherapy and stem cell harvest over two months, is NOT quick or easy. You can see a complete overview of the procedure, here. The transplant roadmap at that link outlines what will be my time commitment to medical procedures in Chicago. I am thankful for my supportive family as well as my my friends Anna, Tony, +Doug Rohde and +Sylvia Bachmann who will be accompanying me as caregivers and sources of sanity during parts of my treatment journey.
Why me, why now?
Chemo
Though "stem cells" is the trendy term that jumps out in the title of this treatment, high-dose chemotherapy, similar to what cancer patients receive, is actually the thing that will be used to stop my aggressive, nerve-flaring MS autoimmune attacks.
The high-dose, punctuated chemo used in HSCT is somewhat risky, but ultimately more effective and less damaging to the human body than the extended periods of low-dose chemo that neurologists sometimes prescribe for aggressive hard-to-treat MS like mine. The higher-dose chemo with HSCT is made possible by first harvesting adult stem cells from the patient's own bone marrow. Infection is a danger after chemo wipes out the immune system, so patient isolation and antibiotics are key to survival until the stem cells can be transplanted to rapidly build a new, properly functioning immune system.
Cure me, kill me, or somewhere in-between
What, me worry? I could die from this procedure, but probably won't. As of yet, HSCT patient numbers represent a small sample size to base any medical statistics on. But I am an optimistic lab rat. So far, about 85% of people who have done HSCT had their autoimmune diseases halted, and, like the young man in the earlier video, many regained functional mobility to the point of feeling they are cured. Odds of mortality from HSCT are debatable; different experts with different agendas say anywhere from 0.5% to 5% mortality. Putting it into perspective, MS itself could kill me if it's allowed to keep attacking my brainstem.
MS is an autoimmune disease where the immune system mistakenly attacks the myelin sheath that insulates and protects nerves in the spinal cord and brain. As MS attacks continue, the body's central nervous system starts to short out and bad things happen to coordination, mobility, vision and other basic body functions. Early research trials have shown great promise in HSCT stopping this immune system attack. Because research data continues to be collected, Dr. Burt will not yet use the word "cure" to describe HSCT. However, results so far indicate that HSCT is the closest thing to a cure that exists today. I am very excited to be part of this research.
The HSCT process, which requires chemotherapy and stem cell harvest over two months, is NOT quick or easy. You can see a complete overview of the procedure, here. The transplant roadmap at that link outlines what will be my time commitment to medical procedures in Chicago. I am thankful for my supportive family as well as my my friends Anna, Tony, +Doug Rohde and +Sylvia Bachmann who will be accompanying me as caregivers and sources of sanity during parts of my treatment journey.
Why me, why now?
No doctor directed me to seek HSCT. In fact, my neurologist tried to discourage me when I sought the procedure on my own. Seven years of faithfully following his FDA-approved standard of care with MS drugs had failed me. I was in pain, crippled, scared and mad as hell. I couldn't legally punch him in the nose or key his Porsche, so I turned my anger into motivation to find better options. After screening out much online quackery and unhelpful advice to live on a paleo diet of free-range yak cheese, Tibetan prayer flags, quinoa and kale, I found legitimate technical white papers like this one and this one. I also started finding amazing stories like the young man in this video who was part of an early HSCT research program. The video includes an excellent description of the HSCT procedure. These findings directed my successful letter-writing campaign to Dr. Burt and his staff
In June 2013, months before my first scheduled face-to-face meeting with Dr. Burt in Chicago, a vicious MS attack put me in a wheelchair and caused other severe neurological problems. But I did make it to Chicago in a borrowed wheelchair. Thanks to Goodwill for the wheelchair and Delta Airlines for accommodating the accessibly needs of a disabled solo traveler who did not know how to be disabled. Also thanks to Doug for straining his back getting my spasm-crippled body in and out of his truck. Every hope I had was hinged on making it to that meeting. The meeting was a success, perhaps partly because it was clear to Dr. Burt that I would have crawled to get there.
When I got back to Minneapolis, I faced the daunting prospect of stabilizing my condition until my HSCT treatment could begin. The best my neurologist had to offer was plasmapheresis, a dialysis plasma exchange process that temporarily removes the nerve-attacking antibodies in my blood plasma. It sort of works, so I guess I'm glad I left his Porsche alone. Though plasma exchange is now preventing nerve damage and has helped me start tenuously walking again, it is basically like bailing out a boat with a hole in it – new defective antibodies just keep flowing in from my defective, hyperactive immune system. Until I reset my immunity with HSCT, I am stuck with a semi-permanent catheter in my chest and weekly trips to a dialysis center. Through summer and fall, I have seen the dialysis nurses so much that they're starting to seem like family. Perhaps I should marry one of them... Wait, no, then she would not have to be nice to me.
Sobering realities and hope
MS severity varies widely from one person to the next. Correct treatment for one person is not necessarily right for another. Aggressive MS like mine often ends with the person permanently disabled and stuck in a wheelchair until they die. Though I pray for and admire the people I know who have come to terms with that fate, I will still fight to the last to try and avoid it myself. I am fortunate to have an audacious plan and something more than hope allowing me to think this is possible. And I hope this research will somehow help the larger MS population too.
One key to success with HSCT is not waiting until the disease progresses past the point of causing permanent nerve damage. Though my MS is severe and apparently drug-resistant, the good news is that my disease is still in an active inflammatory stage and has not yet progressed to an irreversible degenerative condition. This puts me at a balance point where the risk of treatment with HSCT is offset favorably by the odds that the procedure will halt the disease and improve my condition, perhaps to the point of total remission. My window of opportunity and time to act is now. Waiting helplessly for another year, hoping for the next MS drug that may or may not work, is no longer a forced option for me.
In June 2013, months before my first scheduled face-to-face meeting with Dr. Burt in Chicago, a vicious MS attack put me in a wheelchair and caused other severe neurological problems. But I did make it to Chicago in a borrowed wheelchair. Thanks to Goodwill for the wheelchair and Delta Airlines for accommodating the accessibly needs of a disabled solo traveler who did not know how to be disabled. Also thanks to Doug for straining his back getting my spasm-crippled body in and out of his truck. Every hope I had was hinged on making it to that meeting. The meeting was a success, perhaps partly because it was clear to Dr. Burt that I would have crawled to get there.
When I got back to Minneapolis, I faced the daunting prospect of stabilizing my condition until my HSCT treatment could begin. The best my neurologist had to offer was plasmapheresis, a dialysis plasma exchange process that temporarily removes the nerve-attacking antibodies in my blood plasma. It sort of works, so I guess I'm glad I left his Porsche alone. Though plasma exchange is now preventing nerve damage and has helped me start tenuously walking again, it is basically like bailing out a boat with a hole in it – new defective antibodies just keep flowing in from my defective, hyperactive immune system. Until I reset my immunity with HSCT, I am stuck with a semi-permanent catheter in my chest and weekly trips to a dialysis center. Through summer and fall, I have seen the dialysis nurses so much that they're starting to seem like family. Perhaps I should marry one of them... Wait, no, then she would not have to be nice to me.
Sobering realities and hope
MS severity varies widely from one person to the next. Correct treatment for one person is not necessarily right for another. Aggressive MS like mine often ends with the person permanently disabled and stuck in a wheelchair until they die. Though I pray for and admire the people I know who have come to terms with that fate, I will still fight to the last to try and avoid it myself. I am fortunate to have an audacious plan and something more than hope allowing me to think this is possible. And I hope this research will somehow help the larger MS population too.
One key to success with HSCT is not waiting until the disease progresses past the point of causing permanent nerve damage. Though my MS is severe and apparently drug-resistant, the good news is that my disease is still in an active inflammatory stage and has not yet progressed to an irreversible degenerative condition. This puts me at a balance point where the risk of treatment with HSCT is offset favorably by the odds that the procedure will halt the disease and improve my condition, perhaps to the point of total remission. My window of opportunity and time to act is now. Waiting helplessly for another year, hoping for the next MS drug that may or may not work, is no longer a forced option for me.
Though "stem cells" is the trendy term that jumps out in the title of this treatment, high-dose chemotherapy, similar to what cancer patients receive, is actually the thing that will be used to stop my aggressive, nerve-flaring MS autoimmune attacks.
The high-dose, punctuated chemo used in HSCT is somewhat risky, but ultimately more effective and less damaging to the human body than the extended periods of low-dose chemo that neurologists sometimes prescribe for aggressive hard-to-treat MS like mine. The higher-dose chemo with HSCT is made possible by first harvesting adult stem cells from the patient's own bone marrow. Infection is a danger after chemo wipes out the immune system, so patient isolation and antibiotics are key to survival until the stem cells can be transplanted to rapidly build a new, properly functioning immune system.
Adult stem cells
The term "stem cells" tends to freak some people out, but before engaging me in a Bible verse duel, you should know that the HSCT procedure uses adult stem cells, not embryonic stem cells. Really, check out the link. The science is fascinating and there is no ethical controversy surrounding adult stem cells.
HSCT also has nothing to do with the fraudulent easy-peasy stem cell mills in Latin America that have been exposed as snake oil ripoffs by investigative journalists. Contrary to claims from the unregulated banana republic clinics, stem cells won't produce lasting autoimmune disease remission without first stopping the autoimmune response with chemo.
HSCT also has nothing to do with the fraudulent easy-peasy stem cell mills in Latin America that have been exposed as snake oil ripoffs by investigative journalists. Contrary to claims from the unregulated banana republic clinics, stem cells won't produce lasting autoimmune disease remission without first stopping the autoimmune response with chemo.
Cure me, kill me, or somewhere in-between
What, me worry? I could die from this procedure, but probably won't. As of yet, HSCT patient numbers represent a small sample size to base any medical statistics on. But I am an optimistic lab rat. So far, about 85% of people who have done HSCT had their autoimmune diseases halted, and, like the young man in the earlier video, many regained functional mobility to the point of feeling they are cured. Odds of mortality from HSCT are debatable; different experts with different agendas say anywhere from 0.5% to 5% mortality. Putting it into perspective, MS itself could kill me if it's allowed to keep attacking my brainstem.
Pay it forward
Despite MS, I've been fortunate to have the determination, energy, social support and available resources to pursue HSCT treatment. Though I'm still battling with my insurance provider and may have to pay for the entire treatment with my own money, I do not need or desire a fundraiser for myself.
However, I have been so surprised and delighted by the many friends, colleagues and family members who have reached out and offered to help me during these past few very difficult months. I feel it would be a shame to waste all the goodwill and awareness of so many remarkable people, some of whom have family or friends also suffering from MS and other autoimmune diseases. So, please, please consider making a tax deductible donation to HSCT research.
Donating directly to the HSCT program is important because most existing MS Society fundraisers are sponsored by large pharmaceutical companies with an agenda to sell very expensive MS drugs. Moreover, the vast majority of MS research is funded by pharmaceutical companies. HSCT is a procedure, not a drug, so it does not benefit from drug company research funding. HSCT research at Northwestern is funded primarily by grants from the National Institutes of Health, patients and donations. Donations lower the cost of treatment for future patients.
Thanks!
Wayne
*DISCLAIMER: Nothing in this blog constitutes medical advice. Nor should any of it be considered a credible source of facts or attribution for journalists. I am merely a self-educated patient pursuing MS treatment and sharing some of what rolls around in my addled brain along the way. The blogosphere is populated by lunatics, sages and fools. I may be one of them or all three. Believe and proceed at your own risk.
**My thanks to George Goss, Barb Yoder Coppins and all the participants in their moderated discussion groups for sharing information resources, encouragement, experiences and knowledge about HSCT.
However, I have been so surprised and delighted by the many friends, colleagues and family members who have reached out and offered to help me during these past few very difficult months. I feel it would be a shame to waste all the goodwill and awareness of so many remarkable people, some of whom have family or friends also suffering from MS and other autoimmune diseases. So, please, please consider making a tax deductible donation to HSCT research.
Donating directly to the HSCT program is important because most existing MS Society fundraisers are sponsored by large pharmaceutical companies with an agenda to sell very expensive MS drugs. Moreover, the vast majority of MS research is funded by pharmaceutical companies. HSCT is a procedure, not a drug, so it does not benefit from drug company research funding. HSCT research at Northwestern is funded primarily by grants from the National Institutes of Health, patients and donations. Donations lower the cost of treatment for future patients.
Thanks!
Wayne
*DISCLAIMER: Nothing in this blog constitutes medical advice. Nor should any of it be considered a credible source of facts or attribution for journalists. I am merely a self-educated patient pursuing MS treatment and sharing some of what rolls around in my addled brain along the way. The blogosphere is populated by lunatics, sages and fools. I may be one of them or all three. Believe and proceed at your own risk.
**My thanks to George Goss, Barb Yoder Coppins and all the participants in their moderated discussion groups for sharing information resources, encouragement, experiences and knowledge about HSCT.
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