"were trace M-Proteins detected with immunofixation"
When I had this they called it VGPR since my FLC were normal. I stayed there until 5th cycle and it became CR.
I have since read/learned that the SPEP lags behind FLC because of the half life. The half life of IG's is longer than the free light chains, thus it takes awhile longer for the immunofixation to show negative vs. free light chain assay, as those light chains have shorter half-life.
As a math scientist you might enjoy plotting exponential decay, Kevin...to see how much longer it takes. But probably cycling would be more fun...lol
Forums
Re: Biking with multiple myeloma
Hi Eric,
"According to the European Group for Blood and Marrow Transplantation (EBMT) criteria for evaluating response, CR is defined by a negative immunofixation plus a normal bone marrow evaluation. Patients with a normal electrophoresis but a positive immunofixation are considered as having near-CR (n-CR). Because n-CR is sometimes difficult to assess, in the case of very small spikes (Figure 1A-B) or in the case of post-ASCT oligoclonal gammopathies (Figure 1C), the Intergroupe Francophone du Myelome introduced the concept of very good partial remission (VGPR). In the International Myeloma Working Group (IMWG) uniform criteria that have been adapted from the EBMT criteria and are currently proposed as a new standard, n-CR and VGPR have been brought together in the VGPR category and the level of stringent CR has been introduced. Currently used definitions of CR are shown in Table 2."
http://bloodjournal.hematologylibrary.org/content/114/15/3139.full
Table 2:
http://bloodjournal.hematologylibrary.org/content/114/15/3139/T2.expansion.html
"According to the European Group for Blood and Marrow Transplantation (EBMT) criteria for evaluating response, CR is defined by a negative immunofixation plus a normal bone marrow evaluation. Patients with a normal electrophoresis but a positive immunofixation are considered as having near-CR (n-CR). Because n-CR is sometimes difficult to assess, in the case of very small spikes (Figure 1A-B) or in the case of post-ASCT oligoclonal gammopathies (Figure 1C), the Intergroupe Francophone du Myelome introduced the concept of very good partial remission (VGPR). In the International Myeloma Working Group (IMWG) uniform criteria that have been adapted from the EBMT criteria and are currently proposed as a new standard, n-CR and VGPR have been brought together in the VGPR category and the level of stringent CR has been introduced. Currently used definitions of CR are shown in Table 2."
http://bloodjournal.hematologylibrary.org/content/114/15/3139.full
Table 2:
http://bloodjournal.hematologylibrary.org/content/114/15/3139/T2.expansion.html
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Biking with multiple myeloma
I have signed up to ride in the MS 150 this weekend as part of team KPMG. This is for a good cause - cure Multiple Screlosis. The ride is two days covering 150 miles with 84 miles on Saturday and 66 on Sunday. I normally don't try to do long rides on back to back days due to my need for a day of recovery. (Between the treatments and multiple myeloma my body rebels if I go long on back to back days.) Plus I have a scheduled Velcade injection and 20 mg of Dex on Thursday not to mention the 10 mg of Revlimid I am on. So this will be interesting to see how I handle it.
I rode in the Muenster Rally this past Satruday and for me it was a real test. It was 63 miles (100k) with a number of hill climbs. The total climbing on my Garmin was over 2,700 ft., which is a lot for North Texas. I cramped after the ride in my hamstings in the drive back to my home. Trying to drive a car with hamstring cramps is no fun! I did not ride again until yesterday when I went for a 20 mile spin (low gears but at high cadence) to loosen my legs. I will not ride again before the MS 150.
Ron
I rode in the Muenster Rally this past Satruday and for me it was a real test. It was 63 miles (100k) with a number of hill climbs. The total climbing on my Garmin was over 2,700 ft., which is a lot for North Texas. I cramped after the ride in my hamstings in the drive back to my home. Trying to drive a car with hamstring cramps is no fun! I did not ride again until yesterday when I went for a 20 mile spin (low gears but at high cadence) to loosen my legs. I will not ride again before the MS 150.
Ron
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Biking with multiple myeloma
Ron, just ran across your thread. Rigorous exercise can make you a statistical outlier, as I have certainly found after my multiple myeloma morphed into Plasma Cell Leukemia. Felt ok but anemic. Everyone said game over, get my affairs in order, plan the funeral. As I used to run professionally and bike raced when I turned 50, I continue to ride for my mental well-being. The doc's are shaking their heads at how the leukemia and multiple myeloma have disappeared with simple RVD and now maintenance therapy.
Check out the Workout Cancer site for encouraging research.
Check out the Workout Cancer site for encouraging research.
-
Van Townsend
Re: Biking with multiple myeloma
Van,
Thanks for the post. I have had my setbacks, including a bout with Meningitis this past summer that set my biking back. However, I recovered and rode on a 3 man team 24 time trial at the end of September. My team won. I just turned 60 this year and will continue to ride as long as I am able. When I was first diagnosed the research I did indicated that myeloma patients should avoid out door bike riding. The general consesus is that it is too risky due to falling and breaking bones. Well that wasn't for me and I road in a 60k rally a month after diagnosis. I have never looked back.
I am sure that it has helped me. I have been doing this now for over 3 years as I battle this cancer.
Best wishes to you and keep on riding!
Ron
Thanks for the post. I have had my setbacks, including a bout with Meningitis this past summer that set my biking back. However, I recovered and rode on a 3 man team 24 time trial at the end of September. My team won. I just turned 60 this year and will continue to ride as long as I am able. When I was first diagnosed the research I did indicated that myeloma patients should avoid out door bike riding. The general consesus is that it is too risky due to falling and breaking bones. Well that wasn't for me and I road in a 60k rally a month after diagnosis. I have never looked back.
I am sure that it has helped me. I have been doing this now for over 3 years as I battle this cancer.
Best wishes to you and keep on riding!
Ron
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Biking with multiple myeloma
This may not be for the feint-hearted. I wrote this piece for a running philosophy website, posing as my alter-ego Dr. Hunter S. Thompson.
Please forgive the language.
On Aug 28, 2012, at 12:00 AM, MY
Ok, I just got home from the European post-partum Olympic blues to my humble hovel and found the Lance news after my Dumbphone blew up with texts decrying either the Yellow Fleece bearer's guilt or innocence, depending on which side of the barbed-wire the digital voices shouted.
Here is my jet-lagged take.
Drugs have been a part of the cycling culture for almost a century. In the 1920's, a French rider shouted at Tour journalists, bellowing, "You think we ride on bread and water alone?!" as he tossed handfuls of amphetamines on the table. The term "Panagua" (bread and water) circulates in the peloton to indicate a clean rider. Ya, I know, so tell you something new.
Here is something new.
I hinted at it in my TDF piece after my Oly Trials gig; I have terminal cancer. Multiple Myeloma and Plasma Cell Leukemia. Google it. I'm fucked. BUT , somehow by the grace of God, Allah,Buddha, all the million Hindu deities and MOST of all my family, I'm an outlier and alive and well, riding my road bike a couple of hours a day, etc; however, I have used EVERY drug Lance is accused of using. When I was racing, I WANTED to but couldn't, but as a cancer patient, I HAD to do transfusions, EPO, Dexamethasone, amphetamines, and now ,more fun, testosterone.
Blah, blah, so what?
I'll tell ya, I didn't like and still don't like Lance's attitude and aggressive lawyer SWAT team approach. But, face it, he was a superfreak with a mega-tactical team who coulda beat everyone clean IF they were clean. Of course, they were dirty, so he was dirty too.
You probably have already been discussing this, but if he didn't have a greedy ego to make his latest TDF comeback, he would have fallen outta the Statute of Limitations frame. Classic Greek tragedy. And not of the Euro type involving a return to the drachma.
Ya know what? LIVESTRONG doesn't even raise much money for cancer research. They are not medically keeping me alive. BUT they are saying to me , you are a survivor so far, so go out and beat the drum and help other patients to have faith, be strong, and have the right attitude. I cannot tell you how many friends and fellow patients I've seen die from a hopeless attitude. I've been there and wanted to give up. A year ago, my multiple myeloma morphed into Plasma Cell Leukemia. My doc's said I might live a month and to forget about Christmas. They use a downer euphemistic code: "get your affairs in order." That means "Prepare to die.". I asked them how I would die. They told me I'd soon end up in the hospital and either bleed out from the brain or drown my lungs in fluid. Pleasant stuff. I didn't want to drag my family through that nightmarish waiting around a sterilized bedside horror show. I went to my internist and asked him if we could do the don't ever-wake- up pills if I reached the hospital point. He reluctantly but compassionately agreed. I phoned my oldest son who was at one time one of the fastest milers in the high school nation but now got his competitive kicks on Wall Street; I told him I couldn't fight anymore and my plan with pills. He snapped, "Dad, that's the stupidest fuckin idea I've ever heard and we are never fuckin having this conversation again. I'm getting on a plane tomorrow." My daughter made me posters, cussing for the first time in her Bible Belt life, writing, "You will kick cancer's ass." My second son- a sensitive, quiet one- patiently waited for me as I huffed and puffed my walking way around XC courses to cheer his sister. My ex-wife, God bless her, even took walks with me. We planned my funeral. No organ music, just Sex Pistols, The Buzzcocks, and The Clash. You are all invited. It'll make the Trials in Eugene look like an AA Convention. My fam wouldn't let me give up. High school and college friends mother- smothered me with visits. Kids I had coached rallied round; it looked like a Footlocker Finalists reunion. One of the most powerful, but equally humble, agents in the running world jetted in with the garrulous Godfrey Kiprotich, the most westernized Kenyan you'll ever meet. The parking lot cashier at the airport thought I was running a taxi service. Cancer didn't have a spot at the anxiety table; too busy with friends- sorry , cancer worries, take a number and make an appointment. Within a year, I've beaten the sh-- outta this Beast and I owe these supporters a lifetime of gratitude. I believe the Livestrong outfit does for many what my kids and tons of friends and former students and runners did for me: support. I've never called Livestrong's phone number, but just knowing that the organization is there for anyone with cancer has a confidence-boosting effect. Whatever we think of Lance, he has changed the cancer patient game. No longer victims, we can be badass mothafucka fighters.
What's the point here?
As John Winthrop Puritanical Americans who dose our kids with Adderall and gulp Prozac and Xanax like candy, we are laughable hypocrites. Get real. We drool over our MLB sluggers, our rip-yer-head-off for a bounty NFL monsters. We gamble on Wall Street, knowing full well that we are playing with green dynamite that could blow us up. And HAS done so several times. And now we get upset about a Lycra-clad Lance?
Do I laugh? Do I, fu--.
Last thought: let's define "CHEATING."
You copy off someone's test or SAT; you have stolen knowledge or info you DO NOT HAVE. As a rider, Lance and a gazillion others had to still turn the pedals. NEWS FLASH: they have talent. Sorry to tell ya, but you could not make it out of the start-line Neutral Zone at any pro bike race. You would either fall down from lack of bike-handling skills with riders leaning on you, cursing at you in Italian, and touching wheels, or when the "morning breakaway"occurred you'd get dropped like a Prom dress. They didn't cut the course.
Let the moralists bloodletting begin. It won't be fun, but I can take it. I've gone through worse.
Please forgive the language.
On Aug 28, 2012, at 12:00 AM, MY
Ok, I just got home from the European post-partum Olympic blues to my humble hovel and found the Lance news after my Dumbphone blew up with texts decrying either the Yellow Fleece bearer's guilt or innocence, depending on which side of the barbed-wire the digital voices shouted.
Here is my jet-lagged take.
Drugs have been a part of the cycling culture for almost a century. In the 1920's, a French rider shouted at Tour journalists, bellowing, "You think we ride on bread and water alone?!" as he tossed handfuls of amphetamines on the table. The term "Panagua" (bread and water) circulates in the peloton to indicate a clean rider. Ya, I know, so tell you something new.
Here is something new.
I hinted at it in my TDF piece after my Oly Trials gig; I have terminal cancer. Multiple Myeloma and Plasma Cell Leukemia. Google it. I'm fucked. BUT , somehow by the grace of God, Allah,Buddha, all the million Hindu deities and MOST of all my family, I'm an outlier and alive and well, riding my road bike a couple of hours a day, etc; however, I have used EVERY drug Lance is accused of using. When I was racing, I WANTED to but couldn't, but as a cancer patient, I HAD to do transfusions, EPO, Dexamethasone, amphetamines, and now ,more fun, testosterone.
Blah, blah, so what?
I'll tell ya, I didn't like and still don't like Lance's attitude and aggressive lawyer SWAT team approach. But, face it, he was a superfreak with a mega-tactical team who coulda beat everyone clean IF they were clean. Of course, they were dirty, so he was dirty too.
You probably have already been discussing this, but if he didn't have a greedy ego to make his latest TDF comeback, he would have fallen outta the Statute of Limitations frame. Classic Greek tragedy. And not of the Euro type involving a return to the drachma.
Ya know what? LIVESTRONG doesn't even raise much money for cancer research. They are not medically keeping me alive. BUT they are saying to me , you are a survivor so far, so go out and beat the drum and help other patients to have faith, be strong, and have the right attitude. I cannot tell you how many friends and fellow patients I've seen die from a hopeless attitude. I've been there and wanted to give up. A year ago, my multiple myeloma morphed into Plasma Cell Leukemia. My doc's said I might live a month and to forget about Christmas. They use a downer euphemistic code: "get your affairs in order." That means "Prepare to die.". I asked them how I would die. They told me I'd soon end up in the hospital and either bleed out from the brain or drown my lungs in fluid. Pleasant stuff. I didn't want to drag my family through that nightmarish waiting around a sterilized bedside horror show. I went to my internist and asked him if we could do the don't ever-wake- up pills if I reached the hospital point. He reluctantly but compassionately agreed. I phoned my oldest son who was at one time one of the fastest milers in the high school nation but now got his competitive kicks on Wall Street; I told him I couldn't fight anymore and my plan with pills. He snapped, "Dad, that's the stupidest fuckin idea I've ever heard and we are never fuckin having this conversation again. I'm getting on a plane tomorrow." My daughter made me posters, cussing for the first time in her Bible Belt life, writing, "You will kick cancer's ass." My second son- a sensitive, quiet one- patiently waited for me as I huffed and puffed my walking way around XC courses to cheer his sister. My ex-wife, God bless her, even took walks with me. We planned my funeral. No organ music, just Sex Pistols, The Buzzcocks, and The Clash. You are all invited. It'll make the Trials in Eugene look like an AA Convention. My fam wouldn't let me give up. High school and college friends mother- smothered me with visits. Kids I had coached rallied round; it looked like a Footlocker Finalists reunion. One of the most powerful, but equally humble, agents in the running world jetted in with the garrulous Godfrey Kiprotich, the most westernized Kenyan you'll ever meet. The parking lot cashier at the airport thought I was running a taxi service. Cancer didn't have a spot at the anxiety table; too busy with friends- sorry , cancer worries, take a number and make an appointment. Within a year, I've beaten the sh-- outta this Beast and I owe these supporters a lifetime of gratitude. I believe the Livestrong outfit does for many what my kids and tons of friends and former students and runners did for me: support. I've never called Livestrong's phone number, but just knowing that the organization is there for anyone with cancer has a confidence-boosting effect. Whatever we think of Lance, he has changed the cancer patient game. No longer victims, we can be badass mothafucka fighters.
What's the point here?
As John Winthrop Puritanical Americans who dose our kids with Adderall and gulp Prozac and Xanax like candy, we are laughable hypocrites. Get real. We drool over our MLB sluggers, our rip-yer-head-off for a bounty NFL monsters. We gamble on Wall Street, knowing full well that we are playing with green dynamite that could blow us up. And HAS done so several times. And now we get upset about a Lycra-clad Lance?
Do I laugh? Do I, fu--.
Last thought: let's define "CHEATING."
You copy off someone's test or SAT; you have stolen knowledge or info you DO NOT HAVE. As a rider, Lance and a gazillion others had to still turn the pedals. NEWS FLASH: they have talent. Sorry to tell ya, but you could not make it out of the start-line Neutral Zone at any pro bike race. You would either fall down from lack of bike-handling skills with riders leaning on you, cursing at you in Italian, and touching wheels, or when the "morning breakaway"occurred you'd get dropped like a Prom dress. They didn't cut the course.
Let the moralists bloodletting begin. It won't be fun, but I can take it. I've gone through worse.
-
Van townsend
Re: Biking with multiple myeloma
I'm lucky that my doc and pa are both hard core cyclist and when they learned that i switched to biking from distance running (bone pain), they were thrilled.... until the first time I dumped on a 100K. I still ride, but ... we do need to be careful, friends. Now that bone pain is in check, still do 1/2 marathons (low red make full marathons a bit too taxing for me... have to go too slow) but cycling has now become THE best stress control tool I have.
The clinic where I receive care does an annual multiple myeloma bike ride, 100 k, 50k and 15 miles as a fund raiser.... so, yea... they understand.
Once I recover from upcoming auto transplant, would be fun to find some multiple myeloma survivors interested in a distance ride.
Andy
Ron Harvot wrote:
> Van,
>
> Thanks for the post. I have had my setbacks, including a bout with
> Meningitis this past summer that set my biking back. However, I recovered
> and rode on a 3 man team 24 time trial at the end of September. My team
> won. I just turned 60 this year and will continue to ride as long as I am
> able. When I was first diagnosed the research I did indicated that myeloma
> patients should avoid out door bike riding. The general consesus is that it
> is too risky due to falling and breaking bones. Well that wasn't for me and
> I road in a 60k rally a month after diagnosis. I have never looked back.
>
> I am sure that it has helped me. I have been doing this now for over 3
> years as I battle this cancer.
>
> Best wishes to you and keep on riding!
>
> Ron
The clinic where I receive care does an annual multiple myeloma bike ride, 100 k, 50k and 15 miles as a fund raiser.... so, yea... they understand.
Once I recover from upcoming auto transplant, would be fun to find some multiple myeloma survivors interested in a distance ride.
Andy
Ron Harvot wrote:
> Van,
>
> Thanks for the post. I have had my setbacks, including a bout with
> Meningitis this past summer that set my biking back. However, I recovered
> and rode on a 3 man team 24 time trial at the end of September. My team
> won. I just turned 60 this year and will continue to ride as long as I am
> able. When I was first diagnosed the research I did indicated that myeloma
> patients should avoid out door bike riding. The general consesus is that it
> is too risky due to falling and breaking bones. Well that wasn't for me and
> I road in a 60k rally a month after diagnosis. I have never looked back.
>
> I am sure that it has helped me. I have been doing this now for over 3
> years as I battle this cancer.
>
> Best wishes to you and keep on riding!
>
> Ron
-
Andy D - Name: Andy D
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 51
Re: Biking with multiple myeloma
Hi Andy D
Where about do you live? My husband and I have done a fundraising ride for my hospital for the past two years (In Canada) but if you are in a state within driving distance to us it might be doable! We live in Ontario. It would be great to do a ride for multiple myeloma
Where about do you live? My husband and I have done a fundraising ride for my hospital for the past two years (In Canada) but if you are in a state within driving distance to us it might be doable! We live in Ontario. It would be great to do a ride for multiple myeloma
-
lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Biking with multiple myeloma
I'm in North Carolina... Long trip for a charity ride. But who knows!
I'll make sure to post details of the multiple myeloma ride here when details are available. I know it will be in June or July, but no specifics beyond that.
I'll make sure to post details of the multiple myeloma ride here when details are available. I know it will be in June or July, but no specifics beyond that.
-
Andy D - Name: Andy D
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 51
Re: Biking with multiple myeloma
Andy,
I'm in Chattanooga, Tennessee. Awesome riding here. Rode with Landis when he trained for his comeback. Where in NC are you ? When is your Auto planned?
Also, Ron, how are you doing!
I'm in Chattanooga, Tennessee. Awesome riding here. Rode with Landis when he trained for his comeback. Where in NC are you ? When is your Auto planned?
Also, Ron, how are you doing!
-
Van