Greetings, everyone. I just found this thread (just got on to the MB forums this week).
First off, glad to hear people are doing well. Congrats on the successful surgery, Ron!
About me - I was a competitive mountain bike cyclist in college (though I did a few road races as well). I wasn't ever great, but I could do decently and I enjoyed it! After college, I only rode sporadically. When I moved to Texas in 2001, I started riding again and started doing the MS150 each year. I think I road in 10 of the 12 rides between 2012 and 2013, although I rode either Houston or Dallas each year (never both!).
During the 2013 MS150 / BikeMS training and event, I never felt like I was riding at 100%. But I was over 80%, so I never complained about it. Then, in August 2013, I broke my first rib doing ... well, I don't know when it broke. I was on vacation, went to bed fine, and woke up with a broken rib. Go figure.
Over the next few months, I broke more ribs, but my GP doc didn't seem too worried (he didn't think they were broken ribs because I wasn't crying, I guess). Finally, in November I went back and saw one of my GP's partners, who decided some testing was in order. He found anemia and elevated blood proteins. A detailed protein analysis and, suddenly, I was a patient at MD Anderson for multiple myeloma.
My bone scan in December showed considerable osteoporosis throughout most of my body (neck to knees, out to my elbows on my arms). An MRI showed a partially collapsed T9 and two other stress fractures in my spine (most likely a result of trying to help a friend move furniture before diagnosis). Because of the risk of a fall, I was forbidden from getting on my bikes.
In January, I developed three additional stress fractures in my spine, I think from carrying my 18-month-old son. This put me in bed for a couple weeks, on a walker for a couple more, and in a back brace for another month before I could walk unassisted.
In January I started RVD (Revlimid, Velcade, dexamethasone), and in February I started Zometa. In late April, I had an autologous SCT. I haven't received any treatment except Zometa since the transplant. My blood counts were about back to normal at my appointment three weeks ago after the doctors changed my prophylactic antibiotic.
I have been longing to get back to exercising, but I can't stand gyms. I can't run due to a combination of a weak spine and bad knees (from soccer as a kid).
Last week I finally got to go for a ride on my new cycle - a recumbent trike (Trident Trikes Stowaway II, if you want to Google it). It was pricey, but the freedom it has given me emotionally is worth it. The future fitness value is even better.
For those of you who have biked in the past but are worried about a fall now, consider a trike. Yes, they are expensive. No, they aren't foolproof - you still can fall, but not easily. No, they aren't real fast. But they are giving me activity, and that is worth it!
Forums
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jglopic - Name: Jay Lopiccolo
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2013
- Age at diagnosis: 38
Re: Biking with multiple myeloma
Jay,
That is an incredible story. I am glad that you found a bike that you can ride. I am not familiar with the trikes, although I know quite a few people that ride recumbent bikes. Some of these are into the ultra distance riding. As you know, a recumbent is not designed well for hill climbing. Those riders have some special set ups so they can run 32 plus gear cassettes on the back. Since you cannot stand up to generate power, you need that high toothed cassette to make up for it. It works, though, as one gal road up the Pala Dura Canyon last year on one. That is over 500 feet (150 meters) of climb in about 1 mile (1.6 km) on 10 plus degree switchbacks!
It has been one month since my open heart surgery and I was given the green light by my cardiologist to resume outside riding. I did 30 miles (48 km) today at a slow but steady 14 mph (22 km/h) on a semi hilly route. It felt good to be out again!
By the way, I had a 4 hour IVIG infusion along with Velcade and 8 mg of dex on Wedsnesday. I am also on a beta blocker that keeps my heart rate (HR) down. I never pushed my HR beyond 138 today and averaged around 123. That is about 30 beats less of where my HR was before the surgery.
Ron
That is an incredible story. I am glad that you found a bike that you can ride. I am not familiar with the trikes, although I know quite a few people that ride recumbent bikes. Some of these are into the ultra distance riding. As you know, a recumbent is not designed well for hill climbing. Those riders have some special set ups so they can run 32 plus gear cassettes on the back. Since you cannot stand up to generate power, you need that high toothed cassette to make up for it. It works, though, as one gal road up the Pala Dura Canyon last year on one. That is over 500 feet (150 meters) of climb in about 1 mile (1.6 km) on 10 plus degree switchbacks!
It has been one month since my open heart surgery and I was given the green light by my cardiologist to resume outside riding. I did 30 miles (48 km) today at a slow but steady 14 mph (22 km/h) on a semi hilly route. It felt good to be out again!
By the way, I had a 4 hour IVIG infusion along with Velcade and 8 mg of dex on Wedsnesday. I am also on a beta blocker that keeps my heart rate (HR) down. I never pushed my HR beyond 138 today and averaged around 123. That is about 30 beats less of where my HR was before the surgery.
Ron
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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
Way to go Ron!
And, Jay, congratulations on your improvement and on getting back to cycling again!
And, Jay, congratulations on your improvement and on getting back to cycling again!
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Biking with multiple myeloma
Ron,
I hope you are doing well and find the biking enjoyable.
I used to do a lot of cycling and did several century and metric century rides. I had a training program that I followed for every ride so I would be able to finish the ride without being blown out. It was so much fun meeting new folks, enjoying the good food at the stops and half way point.
But really, it kind of made me feel like a kid again. That first bike you got for your birthday or Christmas. I had to stop riding a few years back due to my work hours and the distance to and from work (I always came home in the dark).
I want to thank you for your post. You have sparked a thought on me getting back into cycling and possibly doing an organized ride again. My old road bike is pretty much shot. I do a little riding on my mountain bike around the neighborhood. It's time to get a new road bike possibly.
My wife thinks I am going to fall and break more bones again. I fell on a ladder putting things away in the attic. That's how I found out that I had multiple myeloma. I broke multiple ribs, and then the blood work came.
I start Zometa in a month. I just might start doing indoor cycling on a trainer first. Get my Zometa started and start looking for that first ride!
You have inspired me to set a goal and do more than think about this disease.
Castaway
I hope you are doing well and find the biking enjoyable.
I used to do a lot of cycling and did several century and metric century rides. I had a training program that I followed for every ride so I would be able to finish the ride without being blown out. It was so much fun meeting new folks, enjoying the good food at the stops and half way point.
But really, it kind of made me feel like a kid again. That first bike you got for your birthday or Christmas. I had to stop riding a few years back due to my work hours and the distance to and from work (I always came home in the dark).
I want to thank you for your post. You have sparked a thought on me getting back into cycling and possibly doing an organized ride again. My old road bike is pretty much shot. I do a little riding on my mountain bike around the neighborhood. It's time to get a new road bike possibly.
My wife thinks I am going to fall and break more bones again. I fell on a ladder putting things away in the attic. That's how I found out that I had multiple myeloma. I broke multiple ribs, and then the blood work came.
I start Zometa in a month. I just might start doing indoor cycling on a trainer first. Get my Zometa started and start looking for that first ride!
You have inspired me to set a goal and do more than think about this disease.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Biking with multiple myeloma
I have completed my rehab from my open heart surgery (aortic valve replacement) and, besides riding outdoors on weekends, have embarked on a vigorous indoor training regime.
I am on a low level beta blocker that has reduced my maximum heart rate (HR). I do various one hour hard indoor training rides; all are some form of interval training. Those training rides include one designed for improving hill climbing (mash in 11-12 cog cassette in the big ring at 60-65 rpm) to doing speed intervals in a pyramid fashion (lower 15-17 cog cassette at 90-100 rpm). I also do early morning spin rides for 25 minutes or so where I am just cranking at 80 rpm in the smaller chain starting in the 21 gear and increasing periodically up the ladder to the 15-13 cog then coming back down. Generally on these spin rides my HR does not climb out of the 130s.
In the past, I have avoided doing any riding for 24 hours following a treatment. I had a treatment yesterday but, before going for it, did a hard one hour training ride doing the speed pyramid intervals. My maximum HR during this workout was 156 with an average of 134. That is consistent with my outdoor ride max and average since I have been on the beta blocker. (Prior to surgery, without beta blockers, my max was around 170 and my average was in the low 140s.)
This morning, I did a 25 minute spin all in the small ring following the format I described above and hit a max of 162 with an average of 140. That was less than 24 hours after getting a Velcade shot and 8 mg of dex. I also had a 3-hour IVIG infusion, which I get once a month. My shot and infusion were in the morning and I took the dex around 7 pm with my beta blocker.
I suspect the dex is the cause of the elevated HR I experienced with my training ride. I did not feel any fatigue symptoms – just noted the elevated HR.
I wonder if any others experience elevated HR when exercising after taking dex?
I am on a low level beta blocker that has reduced my maximum heart rate (HR). I do various one hour hard indoor training rides; all are some form of interval training. Those training rides include one designed for improving hill climbing (mash in 11-12 cog cassette in the big ring at 60-65 rpm) to doing speed intervals in a pyramid fashion (lower 15-17 cog cassette at 90-100 rpm). I also do early morning spin rides for 25 minutes or so where I am just cranking at 80 rpm in the smaller chain starting in the 21 gear and increasing periodically up the ladder to the 15-13 cog then coming back down. Generally on these spin rides my HR does not climb out of the 130s.
In the past, I have avoided doing any riding for 24 hours following a treatment. I had a treatment yesterday but, before going for it, did a hard one hour training ride doing the speed pyramid intervals. My maximum HR during this workout was 156 with an average of 134. That is consistent with my outdoor ride max and average since I have been on the beta blocker. (Prior to surgery, without beta blockers, my max was around 170 and my average was in the low 140s.)
This morning, I did a 25 minute spin all in the small ring following the format I described above and hit a max of 162 with an average of 140. That was less than 24 hours after getting a Velcade shot and 8 mg of dex. I also had a 3-hour IVIG infusion, which I get once a month. My shot and infusion were in the morning and I took the dex around 7 pm with my beta blocker.
I suspect the dex is the cause of the elevated HR I experienced with my training ride. I did not feel any fatigue symptoms – just noted the elevated HR.
I wonder if any others experience elevated HR when exercising after taking dex?
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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
Hi Ron,
Sounds like you are doing great! Congratulations on your recovery.
I do a little bit of biking, but am more of a runner. I'm old school, so I don't measure my heart rate while exercising. Having said that, when I was on dex earlier in my treatments, I never noticed an unusually increased heart rate when I was running or biking. But it did feel like my runs were easier to do on days right after I had taken dex. So that might be kind of the opposite of what you're experiencing.
Speaking of heart rates, my resting pulse is typically in the low 40's, sometimes in the upper 30's, from 45 years of running. This always leads to some questions when I get my vital signs taken during my monthly treatment sessions now. I bet your resting pulse is pretty low too!
Mike
Sounds like you are doing great! Congratulations on your recovery.
I do a little bit of biking, but am more of a runner. I'm old school, so I don't measure my heart rate while exercising. Having said that, when I was on dex earlier in my treatments, I never noticed an unusually increased heart rate when I was running or biking. But it did feel like my runs were easier to do on days right after I had taken dex. So that might be kind of the opposite of what you're experiencing.
Speaking of heart rates, my resting pulse is typically in the low 40's, sometimes in the upper 30's, from 45 years of running. This always leads to some questions when I get my vital signs taken during my monthly treatment sessions now. I bet your resting pulse is pretty low too!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Biking with multiple myeloma
Mike,
That is a real low resting HR! There are a few in my bike club with resting rates like yours, but I am not one of them. My resting rate is in the low 60s. I did not take up serious bike riding until 2008, the year before my diagnosis. I suspect that is why my rate is not as low as those who have been doing endurance sports for many years.
Today I got in a 45-mile ride but could not get my HR above 145 and had less endurance on the hills than I had last week. Part of the that is due to the beta blocker I am on and part of it is due to the treatment I had on Wednesday. The result was strange considering that on Thursday morning I hit 162 on my trainer and was not doing any hill climbing type intervals. However, I did not take my beta blocker until after that ride whereas today I took it before the ride.
Once every 4 weeks I get an IVIG infusion. I suspect that the treatments, especially when I get IVIG, are having an impact upon my endurance. I am going to go back and chart all of my rides and see if I can sense a trend. I get off the beta blocker in mid February.
I need to figure this out so that I can try and arrange my treatments around my upcoming spring bike racing events.
Ron
That is a real low resting HR! There are a few in my bike club with resting rates like yours, but I am not one of them. My resting rate is in the low 60s. I did not take up serious bike riding until 2008, the year before my diagnosis. I suspect that is why my rate is not as low as those who have been doing endurance sports for many years.
Today I got in a 45-mile ride but could not get my HR above 145 and had less endurance on the hills than I had last week. Part of the that is due to the beta blocker I am on and part of it is due to the treatment I had on Wednesday. The result was strange considering that on Thursday morning I hit 162 on my trainer and was not doing any hill climbing type intervals. However, I did not take my beta blocker until after that ride whereas today I took it before the ride.
Once every 4 weeks I get an IVIG infusion. I suspect that the treatments, especially when I get IVIG, are having an impact upon my endurance. I am going to go back and chart all of my rides and see if I can sense a trend. I get off the beta blocker in mid February.
I need to figure this out so that I can try and arrange my treatments around my upcoming spring bike racing events.
Ron
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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,
Happy to read that you are back at it. Since I no longer compete, I gave up the heart rate tracking during exercise; it just made me too crazy.
Good luck with the racing.
Happy to read that you are back at it. Since I no longer compete, I gave up the heart rate tracking during exercise; it just made me too crazy.
Good luck with the racing.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Ron,
I am not on any beta blockers, just Velcade, 4 mg Pomalyst daily, and 20 mg dex per week. I'm mostly a runner (30-40 miles [50-65 km] per week), but do 50-100 miles (80-160 km) bike per week crosstraining. I'm anemic, not as severely as in past, but always low, but hover just above number to get infusion.
With that as background: Two days after Velcade and dex, max heart rate on runs always runs 10-30 bpm faster than other days for the same pace, same route. But it feels easier. Met with sports physiologist with oncology experience and was strongly encouraged to back off on post dex days, even if it does just feel good to push it on those days. I have bad GI issues - constipation and bloating - 4 days post Velcade and dex, but they are supposedly part of the productive "training" days in my current drug cycle. Unpleasant, but have not found myeloma experience particularly convenient.
I take my dex on Sunday nights, do Velcade on Monday afternoon and am ok for Saturday races and good for Sunday races. ("Race" is a generous term for me at this point, but I have fun.)
As with all things myeloma, that is MY story and experience. It was worth my time and effort to work with a physiologist for me. I cannot come close to my old pace or distance, but at least I can still do HMs, etc without being irresponsible about my health. It worried me trying to use "normal" thinking about training when I am constantly pumping very abnormal crap into my body. (Ok, that crap is keeping me alive; I should be more appreciative.)
I am not on any beta blockers, just Velcade, 4 mg Pomalyst daily, and 20 mg dex per week. I'm mostly a runner (30-40 miles [50-65 km] per week), but do 50-100 miles (80-160 km) bike per week crosstraining. I'm anemic, not as severely as in past, but always low, but hover just above number to get infusion.
With that as background: Two days after Velcade and dex, max heart rate on runs always runs 10-30 bpm faster than other days for the same pace, same route. But it feels easier. Met with sports physiologist with oncology experience and was strongly encouraged to back off on post dex days, even if it does just feel good to push it on those days. I have bad GI issues - constipation and bloating - 4 days post Velcade and dex, but they are supposedly part of the productive "training" days in my current drug cycle. Unpleasant, but have not found myeloma experience particularly convenient.
I take my dex on Sunday nights, do Velcade on Monday afternoon and am ok for Saturday races and good for Sunday races. ("Race" is a generous term for me at this point, but I have fun.)
As with all things myeloma, that is MY story and experience. It was worth my time and effort to work with a physiologist for me. I cannot come close to my old pace or distance, but at least I can still do HMs, etc without being irresponsible about my health. It worried me trying to use "normal" thinking about training when I am constantly pumping very abnormal crap into my body. (Ok, that crap is keeping me alive; I should be more appreciative.)
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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,
Sounds like your experience with the dex and Velcade is similar to mine. I don't think that Velcade is the cause of the elevated HR. I think it is the dex that is the major culprit.
I will take the advice that your physiologist suggested and not push it for 2 days following a treatment. Still will ride my trainer, but at a reduced rate and length. I am no longer on weekly treatments and, on my off weeks, I have more energy. My bike pace is about 1 mph faster on off weeks during my club rides, and I have more energy on the hills.
Thanks for you post. I know that it is not easy doing endurance sports activities with this disease. I do believe that such sports activities are doing wonders in helping with mental outlook and overall general health.
So keep on riding!
Ron
Sounds like your experience with the dex and Velcade is similar to mine. I don't think that Velcade is the cause of the elevated HR. I think it is the dex that is the major culprit.
I will take the advice that your physiologist suggested and not push it for 2 days following a treatment. Still will ride my trainer, but at a reduced rate and length. I am no longer on weekly treatments and, on my off weeks, I have more energy. My bike pace is about 1 mph faster on off weeks during my club rides, and I have more energy on the hills.
Thanks for you post. I know that it is not easy doing endurance sports activities with this disease. I do believe that such sports activities are doing wonders in helping with mental outlook and overall general health.
So keep on riding!
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56