Pat,
Andrew went the route you did and had a transplant a few years ago. He and I road together last year in the Hotter N Hell 100. He does a lot more miles than I do. So yes, you can do it, and keep us posted.
Nancy,
I used to live up in Ohio, not as far north as Canada, but much colder than Texas. Don't miss the cold this time of the year, but sure wish I had your summers!
Forums
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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,
It's amazing how many miles you and Andrew amass every year! My biggest mileage year was 2011 when I rode 2,374 miles, so you guys are in a different league than I am. I am not sure if you are retired already, but it won't be until I retire that I will have a shred of a chance to even get close to your mileage!
For anyone else reading this thread, my oncologist is very, very interested in my riding, which I began in February 2018 as soon as my immune system allowed after my stem cell transplant in October 2017. I was pretty weak after a year of heavy chemo and then an arduous month for the stem cell process. I was only able to ride 10 miles the first day back, which was a far cry from my pre-multiple myeloma diagnosis where I regularly rode 50 miles on the weekends and 28 miles after work.
As soon as I started riding in February, I started feeling much stronger and my old confidence started coming back. When I went in for my monthly blood tests, my oncologist accused me of skipping my maintenance therapy, which I assured him that I had not missed one single dose. He asked what I was doing differently because my immune factors had leapt up significantly, and I replied that I had started riding my bicycle again and had been riding at least twice a week over the previous month. All he could say was "keep it up!"
My oncologist now comes in and high fives me after reading my monthly test results! He told me last month that my numbers look more like the second year after a stem cell transplant than 6 months later. He is even considering starting to ride himself after seeing the difference!
I have continued to ride frequently, with a short break due to developing a blood clot in my left leg which made me sit out a couple of weeks in early April, and I have started running again. I still have the peripheral neuropathy problem, but my feet are going to hurt no matter what so I run and ride anyway. The exercise helps that problem because I tend to forget my feet as I focus on the running and riding instead of how uncomfortable my feet are, and the pain fades away after a few miles.
This Saturday will be the first time I have ridden more than 40 miles in a single ride since 2015 before I started focusing on runs over riding my bicycle. My goal for this year is to ride a century (100 miles) in September in the local bike club ride which takes riders from northern Alabama into southern Tennessee and features a short 20% grade towards the end of the ride. I will probably have to walk that section, but I might be strong enough to ride that hill if my training keeps up as I have planned.
This year I hope to get in more than 1,000 miles of riding and next year the goal is 2,500, which is possible so long as my condition allows. I believe its a self performing kind of thing, if a person just does it, it will be possible. Disbelief tends to make a task impossible, so belief in yourself and don't let your circumstance keep you from taking on the challenges you have set for yourself. Mine involve riding, running and now swimming (my oncologist gave me the okay to start swimming last week!). I plan on, and believe that I will, compete in the Ironman Chattanooga event in 2020. THAT is believing in myself, a challenge worthy of respect and one that flips a big bird at multiple myeloma!
It's amazing how many miles you and Andrew amass every year! My biggest mileage year was 2011 when I rode 2,374 miles, so you guys are in a different league than I am. I am not sure if you are retired already, but it won't be until I retire that I will have a shred of a chance to even get close to your mileage!
For anyone else reading this thread, my oncologist is very, very interested in my riding, which I began in February 2018 as soon as my immune system allowed after my stem cell transplant in October 2017. I was pretty weak after a year of heavy chemo and then an arduous month for the stem cell process. I was only able to ride 10 miles the first day back, which was a far cry from my pre-multiple myeloma diagnosis where I regularly rode 50 miles on the weekends and 28 miles after work.
As soon as I started riding in February, I started feeling much stronger and my old confidence started coming back. When I went in for my monthly blood tests, my oncologist accused me of skipping my maintenance therapy, which I assured him that I had not missed one single dose. He asked what I was doing differently because my immune factors had leapt up significantly, and I replied that I had started riding my bicycle again and had been riding at least twice a week over the previous month. All he could say was "keep it up!"
My oncologist now comes in and high fives me after reading my monthly test results! He told me last month that my numbers look more like the second year after a stem cell transplant than 6 months later. He is even considering starting to ride himself after seeing the difference!
I have continued to ride frequently, with a short break due to developing a blood clot in my left leg which made me sit out a couple of weeks in early April, and I have started running again. I still have the peripheral neuropathy problem, but my feet are going to hurt no matter what so I run and ride anyway. The exercise helps that problem because I tend to forget my feet as I focus on the running and riding instead of how uncomfortable my feet are, and the pain fades away after a few miles.
This Saturday will be the first time I have ridden more than 40 miles in a single ride since 2015 before I started focusing on runs over riding my bicycle. My goal for this year is to ride a century (100 miles) in September in the local bike club ride which takes riders from northern Alabama into southern Tennessee and features a short 20% grade towards the end of the ride. I will probably have to walk that section, but I might be strong enough to ride that hill if my training keeps up as I have planned.
This year I hope to get in more than 1,000 miles of riding and next year the goal is 2,500, which is possible so long as my condition allows. I believe its a self performing kind of thing, if a person just does it, it will be possible. Disbelief tends to make a task impossible, so belief in yourself and don't let your circumstance keep you from taking on the challenges you have set for yourself. Mine involve riding, running and now swimming (my oncologist gave me the okay to start swimming last week!). I plan on, and believe that I will, compete in the Ironman Chattanooga event in 2020. THAT is believing in myself, a challenge worthy of respect and one that flips a big bird at multiple myeloma!
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Doug from AL - Name: Douglas Gerard
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 55
Re: Biking with multiple myeloma
Doug,
What you are doing so soon after the stem cell transplant is impressive. Goal setting and taking the focus off of multiple myeloma is what this thread is all about. So your goal of doing a century at the end of September is perfect! I cannot imagine going up a 20% grade at the end of a century ride. The hills we have in North Texas are short and at most no more than 12-14%. Generally our hills only last a few hundred yards. So what you are contemplating will be a challenge. I wish you well and look forward to your follow up.
I am not retired but Andrew is. I have a "desk" job and my employer has been very flexible with my work hours. I can work from home from time to time. I generally try and ride 4 days a week weather permitting. Similar to Alabama, we do not get real cold winters so generally I can ride year round with occasional bad weather in January and February. I am at 2,100 miles currently with my goal of 6,000 this year. Now that the weather is warm (hit 98 today), I get in 150 miles a week. Usually a 50 to 60-mile ride on Saturday morning, a 40-mile ride on Sunday, 25 miles on Tuesday and 30 miles or so on Wednesday. I don't ride Monday, Thursday or Friday as I need time to recover. Tuesday is interval day where the ride is short, but I do a lot of sprints getting my heart rate up to its max of about 160. I normally have a treatment on Wednesdays but hold off taking my dex until after my late afternoon ride.
You are spot on with exercise helping with recovery and overall sense of physical and emotional wellbeing. I have bounced back from open heart surgery, neck fusion surgery and feel it helps me cope with the rigors of treatment.
I look forward to hearing from you going forward.
What you are doing so soon after the stem cell transplant is impressive. Goal setting and taking the focus off of multiple myeloma is what this thread is all about. So your goal of doing a century at the end of September is perfect! I cannot imagine going up a 20% grade at the end of a century ride. The hills we have in North Texas are short and at most no more than 12-14%. Generally our hills only last a few hundred yards. So what you are contemplating will be a challenge. I wish you well and look forward to your follow up.
I am not retired but Andrew is. I have a "desk" job and my employer has been very flexible with my work hours. I can work from home from time to time. I generally try and ride 4 days a week weather permitting. Similar to Alabama, we do not get real cold winters so generally I can ride year round with occasional bad weather in January and February. I am at 2,100 miles currently with my goal of 6,000 this year. Now that the weather is warm (hit 98 today), I get in 150 miles a week. Usually a 50 to 60-mile ride on Saturday morning, a 40-mile ride on Sunday, 25 miles on Tuesday and 30 miles or so on Wednesday. I don't ride Monday, Thursday or Friday as I need time to recover. Tuesday is interval day where the ride is short, but I do a lot of sprints getting my heart rate up to its max of about 160. I normally have a treatment on Wednesdays but hold off taking my dex until after my late afternoon ride.
You are spot on with exercise helping with recovery and overall sense of physical and emotional wellbeing. I have bounced back from open heart surgery, neck fusion surgery and feel it helps me cope with the rigors of treatment.
I look forward to hearing from you going forward.
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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
Keep it up Doug. I had a similar experience coming back quickly from a transplant, in part, I believe, because I started to exercise immediately after the transplant and was back out on the road about two months afterwards. I ended up with about 5500 miles that year despite still working.
It's not the number of miles that is important but the commitment to do as much as you can. It helps both physically and mentally to overcome the rigors of the treatments.
It's not the number of miles that is important but the commitment to do as much as you can. It helps both physically and mentally to overcome the rigors of the treatments.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
I am not part of the multiple myeloma club, at least not yet, but I am a bicyclist. Good to know you've kept riding. There is recent very happy pro-bicycling propaganda (well, studies) that indicate bicyclist have *much* lower cancer rates.
I don't know if it is a magic act against multiple myeloma, but it can't hurt, and the fact it may keep whatever is smoldering in me to not flame up gives me more reason to ride.
OUT OUT getting a late start but off to the Putnam Trail today that starts in Van Cortlandt Part in the Bronx.
I don't know if it is a magic act against multiple myeloma, but it can't hurt, and the fact it may keep whatever is smoldering in me to not flame up gives me more reason to ride.
OUT OUT getting a late start but off to the Putnam Trail today that starts in Van Cortlandt Part in the Bronx.
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DonWheelspi - Name: Don Wheelspi
- Who do you know with myeloma?: no one... yet
Re: Biking with multiple myeloma
Don,
I had seen the article about biking (continued exercise generally) making people less susceptible to cancers generally. Moderate exercise boosts the body's immune system, improves the cardiovascular system, helps lower cholesterol and combined with a good diet reduces weight and the risk of type 2 diabetes. Thus it should be no big surprise that it would also reduce the risk of developing cancer generally. Of course, those of us who already have multiple myeloma, or in your case smoldering myeloma, can only hope that our continued exercise will help prevent, or at least slow down, the progression of the disease. The benefits of exercise are pretty well documented in helping cope with the rigors of treatment and certainly I will attest to its benefits in bouncing back from surgery and injury.
I hope that you never progress beyond the stage you are at now.
Keep on peddling!
I had seen the article about biking (continued exercise generally) making people less susceptible to cancers generally. Moderate exercise boosts the body's immune system, improves the cardiovascular system, helps lower cholesterol and combined with a good diet reduces weight and the risk of type 2 diabetes. Thus it should be no big surprise that it would also reduce the risk of developing cancer generally. Of course, those of us who already have multiple myeloma, or in your case smoldering myeloma, can only hope that our continued exercise will help prevent, or at least slow down, the progression of the disease. The benefits of exercise are pretty well documented in helping cope with the rigors of treatment and certainly I will attest to its benefits in bouncing back from surgery and injury.
I hope that you never progress beyond the stage you are at now.
Keep on peddling!
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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
Biking with the Dexamethasone Blues
I have figured out a routine that works pretty good for me in biking with my myeloma treatments. I usually bike 4 days a week (weather permitting), Saturday and Sunday mornings and Tuesday and Wednesday evenings. My treatments generally are on Wednesdays with an IVIG infusions on the first week of the month accompanying by a Velcade shot, 20 milligrams of dex (oral) and 10 mg of Revlimid. Weeks 2 and 3 are just Velcade, Revlimid, and dex. After 21 days I get a week holiday from treatment.
I have found that if I take the dex and Revlimid on Wednesday night after my bike ride I can sleep that first night and avoid cramping. I then lay off riding Thursday and Friday, recovering from the effects of the dex, and am ready to go at it Saturday morning. Thus I have 55 hours (Wednesday 10 pm through Saturday 7 am) before I am riding again. That is enough for the dex to wear off and allows me to catch some sleep on Friday night.
Well this past Wednesday was the 4th of July, so my treatment got pushed to Thursday, which messed up my routine. So I decided to take the dex a little earlier at 3:45 pm right after my blood draw and just before my Velcade shot. I wanted to maximize the number of hours before my Saturday morning ride, which is usually a 50-60 mile effort in a group. Taking the dex at 3:35 pm, I reasoned would give me 6 and 1/2 hours more for it to wear off before that ride. I also did not ride Wednesday night due to the 4th, so decided to ride Thursday after the treatment.
I went out for a ride at 4:45 pm yesterday for 36 miles and was back around 7:15. My course has a handful of modest hills on it, nothing real significant (I do live in North Texas). This is July so the temp was 95 F (35 C) but actually was 5 degrees cooler than it has been the last few days. I always carry 2 full 20 ounce (590 ml) water bottles and drink them both.
The dex takes about 5 hours to really kick in, but by 10:00 pm it was game on! I tried to relax playing my guitar, but my left hand started cramping on the fingerboard. So much for that. So then I tried to get a little work done at the computer, which went fine until I went to get up for something to drink and immediately cramped in my hamstring.
So after limping around a bit I went upstairs to try and to lay down and read a little. On my dex nights like this I expect insomnia, so I am banished to the guest bedroom (I toss and turn and am up and down like a jack in the box). As I was reading, I developed cramps in the arches of my feet. When I finally got to sleep it didn’t last long as the cramps jumped from calf to calf as I turned. I took my sport legs before I went to bed, which are supposed to add electrolytes and prevent cramps (only works to a certain extent; not designed for bike riders on dex).
Well I learned a painful and restless lesson. If you are going to ride, don’t take the dex until after the ride is over! Who would have thought 6 hours would make such a big difference.
I have figured out a routine that works pretty good for me in biking with my myeloma treatments. I usually bike 4 days a week (weather permitting), Saturday and Sunday mornings and Tuesday and Wednesday evenings. My treatments generally are on Wednesdays with an IVIG infusions on the first week of the month accompanying by a Velcade shot, 20 milligrams of dex (oral) and 10 mg of Revlimid. Weeks 2 and 3 are just Velcade, Revlimid, and dex. After 21 days I get a week holiday from treatment.
I have found that if I take the dex and Revlimid on Wednesday night after my bike ride I can sleep that first night and avoid cramping. I then lay off riding Thursday and Friday, recovering from the effects of the dex, and am ready to go at it Saturday morning. Thus I have 55 hours (Wednesday 10 pm through Saturday 7 am) before I am riding again. That is enough for the dex to wear off and allows me to catch some sleep on Friday night.
Well this past Wednesday was the 4th of July, so my treatment got pushed to Thursday, which messed up my routine. So I decided to take the dex a little earlier at 3:45 pm right after my blood draw and just before my Velcade shot. I wanted to maximize the number of hours before my Saturday morning ride, which is usually a 50-60 mile effort in a group. Taking the dex at 3:35 pm, I reasoned would give me 6 and 1/2 hours more for it to wear off before that ride. I also did not ride Wednesday night due to the 4th, so decided to ride Thursday after the treatment.
I went out for a ride at 4:45 pm yesterday for 36 miles and was back around 7:15. My course has a handful of modest hills on it, nothing real significant (I do live in North Texas). This is July so the temp was 95 F (35 C) but actually was 5 degrees cooler than it has been the last few days. I always carry 2 full 20 ounce (590 ml) water bottles and drink them both.
The dex takes about 5 hours to really kick in, but by 10:00 pm it was game on! I tried to relax playing my guitar, but my left hand started cramping on the fingerboard. So much for that. So then I tried to get a little work done at the computer, which went fine until I went to get up for something to drink and immediately cramped in my hamstring.
So after limping around a bit I went upstairs to try and to lay down and read a little. On my dex nights like this I expect insomnia, so I am banished to the guest bedroom (I toss and turn and am up and down like a jack in the box). As I was reading, I developed cramps in the arches of my feet. When I finally got to sleep it didn’t last long as the cramps jumped from calf to calf as I turned. I took my sport legs before I went to bed, which are supposed to add electrolytes and prevent cramps (only works to a certain extent; not designed for bike riders on dex).
Well I learned a painful and restless lesson. If you are going to ride, don’t take the dex until after the ride is over! Who would have thought 6 hours would make such a big difference.
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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,
Thanks for sharing that story, which is kind of cautionary! I wanted to say that when I was taking Revlimid, and even after I stopped taking it for awhile, I sometimes would get severe cramps in my calves. I also got hand cramps but they were not as bad. Anyways, for the leg cramps, I would take Night Time Tylenol. The pain was so awful I could not even walk! I mentioned this to my doctor and she said I had done the right thing, for the cramps did disappear after half an hour. So maybe you could try Tylenol for cramps as well as your sports drinks.
Thanks for sharing that story, which is kind of cautionary! I wanted to say that when I was taking Revlimid, and even after I stopped taking it for awhile, I sometimes would get severe cramps in my calves. I also got hand cramps but they were not as bad. Anyways, for the leg cramps, I would take Night Time Tylenol. The pain was so awful I could not even walk! I mentioned this to my doctor and she said I had done the right thing, for the cramps did disappear after half an hour. So maybe you could try Tylenol for cramps as well as your sports drinks.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Biking with multiple myeloma
OK Nancy, thanks.
Ron
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,
My husband, Josh, suffers from terrible cramping as a side effect of the multiple myeloma medications and cycling. He has discovered pickle juice can provide immediate relief. You can buy shot-size containers by the dozen online, and Josh throws some in his bike jersey for long rides and keeps them close at hand following long rides (not sure if he takes one before when he knows he’ll be fighting to stay hydrated). Worth a try if you can stand drinking straight pickle juice.
My husband, Josh, suffers from terrible cramping as a side effect of the multiple myeloma medications and cycling. He has discovered pickle juice can provide immediate relief. You can buy shot-size containers by the dozen online, and Josh throws some in his bike jersey for long rides and keeps them close at hand following long rides (not sure if he takes one before when he knows he’ll be fighting to stay hydrated). Worth a try if you can stand drinking straight pickle juice.
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43