scoob,
Speed is relative to me. I have never been at the 21-22 mph avg. Perhaps if I lived in Florida, where it is flat, I could do that, but not in North Texas, which has moderate hills and a lot of stop and go. For me I was doing around 15 mph average right after I started treatment. On our local club rides, which are about 50 miles with a few moderate climbs, I average a bit over 16 mph now. In the Bessie's Creek race, which was near Houston and mostly flat, my average was about 18.5 mph on my TT bike. I hit 19.6 mph on my first lap on the 21.3 mile course.
My max HR is about 165 and, on our club rides, I will have an average rate in the low 140s or about 85% of max for about 3 hours of riding. In the Ultra Spirit Race, my max hit 170 and my average for the first two laps was around 150, then it fell off the last two laps to about the low 140s.
I have been on some kind of continuous treatment since my diagnosis back in 2009 but never had a stem cell transplant. I also did not pick up bike riding until the year before my diagnosis, so I don't have a wealth of statistics from pre-myeloma days to compare it to. I didn't begin biking seriously until I was in my mid 50s and am now 64.
Based on my experience, I believe you will improve your speed and stamina as you recover from the transplant and especially if you have a holiday from treatments. Will you get back to 21-22 mph? I can't really answer that, but I believe you will do better than you are now as you recover.
Andrew (Goldmine 848) had a stem cell transplant and is now on a treatment holiday. He also was a long time biker before he was diagnosed with multiple myeloma and got in over 10,000 miles last year. I hope he adds his thoughts and experiences to this discussion.
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
Thanks for the invitation to respond Ron.
There was a time not too many years ago when I never had a ride of any distance with an average under 20 mph. Before my diagnosis three years ago I had already begun to slow down to the 18 mph range. Part of the reason for the slow down was a series of injuries, mostly of the overuse type, which even after recovery made me reluctant to push at 100% for fear of re-injury. So I adopted the quantity-over-quality approach with a philosophy of "live to ride another day."
As Ron mentioned, I had a transplant. It was during the winter, so when I started back riding it was indoors. I just went slowly and concentrated on building up stamina. Once the weather became more favorable, I just tried to increase my distance / time in the saddle. Eventually, I was back to being able to ride for 3-4 hours.
Now, 2 years+ from the transplant, I am able to ride long distances and occasionally push hard, but generally ride in the 17-18 mph range, mostly in the low to mid-17's. But as Ron mentioned, I broke 10,000 miles last year and would have easily broken 11,000 if I hadn't crashed in November and broken two ribs.
I think that all of the treatment has an effect on strength, which may prevent you from achieving high speeds, but perhaps you are younger and stronger, which may allow you to build up that strength again. Just be patient and don't hurt yourself.
There was a time not too many years ago when I never had a ride of any distance with an average under 20 mph. Before my diagnosis three years ago I had already begun to slow down to the 18 mph range. Part of the reason for the slow down was a series of injuries, mostly of the overuse type, which even after recovery made me reluctant to push at 100% for fear of re-injury. So I adopted the quantity-over-quality approach with a philosophy of "live to ride another day."
As Ron mentioned, I had a transplant. It was during the winter, so when I started back riding it was indoors. I just went slowly and concentrated on building up stamina. Once the weather became more favorable, I just tried to increase my distance / time in the saddle. Eventually, I was back to being able to ride for 3-4 hours.
Now, 2 years+ from the transplant, I am able to ride long distances and occasionally push hard, but generally ride in the 17-18 mph range, mostly in the low to mid-17's. But as Ron mentioned, I broke 10,000 miles last year and would have easily broken 11,000 if I hadn't crashed in November and broken two ribs.
I think that all of the treatment has an effect on strength, which may prevent you from achieving high speeds, but perhaps you are younger and stronger, which may allow you to build up that strength again. Just be patient and don't hurt yourself.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Andrew,
I noticed that in another post you commented that your hemoglobin is around 13. I did a 70 mile ride today and one of my biking buddies has had his hemoglobin at that same level. He had given blood over a month ago and his dropped after that and has not fully recovered. Mine is usually between 14 and 15 (normal 14-18), with my hematocrit between 41 and 44 (normal 40-50). However my total RBC count is usually just below normal in the 4.2-4.6 range (normal 4.7 to 6.1). My friend is normally a stronger rider than I am, but with his hemoglobin down, he had difficulty climbing and started cramping at around mile mark 60. I dropped back to help him get home. He has had a significant loss of stamina as well as climbing ability.
With him, it could be because his body was used to a much higher level in the 16 range. I am curious as to what you have experienced. I consider myself to be an average climber for my age, but certainly believe that my low red count and relatively low hemoglobin (just above the normal range of 14) has had an impact. On longer climbs, I have to back it down or will flame out. That is one of the reasons I went with compact double.
I noticed that in another post you commented that your hemoglobin is around 13. I did a 70 mile ride today and one of my biking buddies has had his hemoglobin at that same level. He had given blood over a month ago and his dropped after that and has not fully recovered. Mine is usually between 14 and 15 (normal 14-18), with my hematocrit between 41 and 44 (normal 40-50). However my total RBC count is usually just below normal in the 4.2-4.6 range (normal 4.7 to 6.1). My friend is normally a stronger rider than I am, but with his hemoglobin down, he had difficulty climbing and started cramping at around mile mark 60. I dropped back to help him get home. He has had a significant loss of stamina as well as climbing ability.
With him, it could be because his body was used to a much higher level in the 16 range. I am curious as to what you have experienced. I consider myself to be an average climber for my age, but certainly believe that my low red count and relatively low hemoglobin (just above the normal range of 14) has had an impact. On longer climbs, I have to back it down or will flame out. That is one of the reasons I went with compact double.
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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
I thought about this after my post above but didn't get around to amending it. I am actually in the 12's most of the time and hematocrit 38-39. I think that it definitely has an impact on speed and climbing ability. The unknown is how long this has been an issue. It has been low since my diagnosis when my hemoglobin was 6 and hematocrit was 18. Obviously, a very dangerous level. But it surely was below normal for quite a while before I was diagnosed. But unlike your friend, it has not impacted my stamina.
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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 by no means an expert on cycling, far from it! However, I do seem to remember with the whole Lance Armstrong thing and discussions about his bloodwork, that sometimes vigorous biking affects blood counts? Maybe I am remembering it wrong, but perhaps this is a factor with respect to the red count? Perhaps your blood counts have always been a little lower after a big ride.
I am very envious of your ability to keep on riding at this level, all of you! Very impressive!
I was an avid exerciser before myeloma. Although I do exercise now, I find that it is really difficult to push myself. I am more prone to injury, maybe because I am still on maintenance involving Velcade and dex, bi-weekly. I keep thinking I should push myself more, but then I will pull a muscle, etc., usually in the back, and that really hurts. As my doc says, "you're still 61 and things are going to hurt you." I have some arthritis in my hands, feet and spine. Fortunately, I have a wonderful chiropractor who straightens me out, and I did go for physical therapy for awhile, which also helps.
Some myelomiacs still kick some serious you know what!!
I am very envious of your ability to keep on riding at this level, all of you! Very impressive!
I was an avid exerciser before myeloma. Although I do exercise now, I find that it is really difficult to push myself. I am more prone to injury, maybe because I am still on maintenance involving Velcade and dex, bi-weekly. I keep thinking I should push myself more, but then I will pull a muscle, etc., usually in the back, and that really hurts. As my doc says, "you're still 61 and things are going to hurt you." I have some arthritis in my hands, feet and spine. Fortunately, I have a wonderful chiropractor who straightens me out, and I did go for physical therapy for awhile, which also helps.
Some myelomiacs still kick some serious you know what!!
Re: Biking with multiple myeloma
Ellen,
You do remember correctly with respect to the Lance Armstrong - blood doping issue. Blood counts will go down after long bike rides. The type of bike riding in the Tour de France and the other grand tours (Giro de Italia, Vuelta de Espana) is extreme distance, climbing, and speed. Thus, EPO and blood transfusions to boost the hemoglobin counts would give the recipients a huge advantage over the rest of the field.
The type of bike riding I do is not extreme. The longest rides I do can be up to 150 miles in a single day, but I would only do that a handful of times spread out over a year. The grand tours cover 100 plus miles over 20 plus stages in 4 weeks. That type of extreme riding not only brings down the hemoglobin counts but also impacts all of the blood counts, including white counts.
Last year the best American cyclist, Tejay Van Garderen, had to drop out of the Tour de France late in the race due to an upper respiratory infection. His immune system was compromised by that extreme activity. There are a group of cyclist that I ride with that do Ultra Cycling. These are long distance races of up to 48 hours covering up to 500 miles. I compete in those type of events (12 hours - 24 hours), but do it as part of a two or 3 man team. Thus I am doing only 1/2 or 1/3 of the total but not solo, which I think would be counterproductive to my health.
I too am on a bi-weekly maintenance regime of Velcade and dex. I work my biking around the treatments (schedule my treatments on Wednesday afternoons and take the 40 mg of dex Wednesday nights.) That way I can ride Wednesday evening (social pace) and then hard on Saturday, Sunday, and Tuesdays. Thus I am riding 4 days a week and rest 3 days. I do stretching every day and try and do push ups (50 at a time) along with non-weighted squats (two sets of 20 each) 3 times a week (on my off cycling days) as well as walk a mile or so those same non-cycling days.
That level of activity has worked for me. It had to be worked up to gradually though.
You do remember correctly with respect to the Lance Armstrong - blood doping issue. Blood counts will go down after long bike rides. The type of bike riding in the Tour de France and the other grand tours (Giro de Italia, Vuelta de Espana) is extreme distance, climbing, and speed. Thus, EPO and blood transfusions to boost the hemoglobin counts would give the recipients a huge advantage over the rest of the field.
The type of bike riding I do is not extreme. The longest rides I do can be up to 150 miles in a single day, but I would only do that a handful of times spread out over a year. The grand tours cover 100 plus miles over 20 plus stages in 4 weeks. That type of extreme riding not only brings down the hemoglobin counts but also impacts all of the blood counts, including white counts.
Last year the best American cyclist, Tejay Van Garderen, had to drop out of the Tour de France late in the race due to an upper respiratory infection. His immune system was compromised by that extreme activity. There are a group of cyclist that I ride with that do Ultra Cycling. These are long distance races of up to 48 hours covering up to 500 miles. I compete in those type of events (12 hours - 24 hours), but do it as part of a two or 3 man team. Thus I am doing only 1/2 or 1/3 of the total but not solo, which I think would be counterproductive to my health.
I too am on a bi-weekly maintenance regime of Velcade and dex. I work my biking around the treatments (schedule my treatments on Wednesday afternoons and take the 40 mg of dex Wednesday nights.) That way I can ride Wednesday evening (social pace) and then hard on Saturday, Sunday, and Tuesdays. Thus I am riding 4 days a week and rest 3 days. I do stretching every day and try and do push ups (50 at a time) along with non-weighted squats (two sets of 20 each) 3 times a week (on my off cycling days) as well as walk a mile or so those same non-cycling days.
That level of activity has worked for me. It had to be worked up to gradually though.
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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
Hello all,
Will give my two cents worth on riding post stem cell transplant and hemoglobin issues.
My myeloma expressed itself at the outset with low RBC and hemoglobin levels. Over the 1.5 years to diagnosis, I had to work harder on rides, was short of breath, and the legs really ached post ride, but I kept going. I was able to keep my pace in the 23/24 km/h (14/15 mph) range, but it was hard work. Group riding was easier until the climbs. Not bad for my size.
Once I had my stem cell transplant in November 2013, the RBC and hemoglobin slowly came up to normal levels and for the 18 months post stem cell transplant, my speed and endurance picked up to the 25/26 km/h range and the endurance and strength was good.
I started relapsing at about 18 months but the hemoglobin and RBC did not start to drop until about 6 months after that. My hemoglobin and RBC are both low (the Canadian ratio is 136/170 g/l) and my most recent bloods shows my hemoglobin at 113.
There are days when I have good energy on the bike and can push it and get a good tempo ride and keep pace with the group. The issue for me, and this was always the case with or without multiple myeloma, is hills/grade. I just do not climb well and with low hemoglobin and RBC, the big muscles just do not oxygenate. In addition the low hemoglobin causes you to have shortness of breath. I am experiencing the shortness of breath more so this go around, in particular on climbs. A bit of soreness in the legs but that passes quickly. I have not started on Revlimid / dex yet, but taking it a month or so at a time with my hematologist.
I guess what I am saying is it is probably individual but I suspect that post stem cell transplant you will get back a large percentage of your performance levels and be able to enjoy yourself. I find this is a continuing challenging and work in progress "accepting my limitations (age and multiple myeloma) and managing my expectations".
Keep on riding and exercising.
Will give my two cents worth on riding post stem cell transplant and hemoglobin issues.
My myeloma expressed itself at the outset with low RBC and hemoglobin levels. Over the 1.5 years to diagnosis, I had to work harder on rides, was short of breath, and the legs really ached post ride, but I kept going. I was able to keep my pace in the 23/24 km/h (14/15 mph) range, but it was hard work. Group riding was easier until the climbs. Not bad for my size.
Once I had my stem cell transplant in November 2013, the RBC and hemoglobin slowly came up to normal levels and for the 18 months post stem cell transplant, my speed and endurance picked up to the 25/26 km/h range and the endurance and strength was good.
I started relapsing at about 18 months but the hemoglobin and RBC did not start to drop until about 6 months after that. My hemoglobin and RBC are both low (the Canadian ratio is 136/170 g/l) and my most recent bloods shows my hemoglobin at 113.
There are days when I have good energy on the bike and can push it and get a good tempo ride and keep pace with the group. The issue for me, and this was always the case with or without multiple myeloma, is hills/grade. I just do not climb well and with low hemoglobin and RBC, the big muscles just do not oxygenate. In addition the low hemoglobin causes you to have shortness of breath. I am experiencing the shortness of breath more so this go around, in particular on climbs. A bit of soreness in the legs but that passes quickly. I have not started on Revlimid / dex yet, but taking it a month or so at a time with my hematologist.
I guess what I am saying is it is probably individual but I suspect that post stem cell transplant you will get back a large percentage of your performance levels and be able to enjoy yourself. I find this is a continuing challenging and work in progress "accepting my limitations (age and multiple myeloma) and managing my expectations".
Keep on riding and exercising.
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Wayne W - Name: Wayne W
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 65
Re: Biking with multiple myeloma
Ron,
All I can say is WOW! This level of activity you are able to accomplish is very impressive, even more so since you have multiple myeloma, but also for mere mortals without multiple myeloma! If you are able to participate at this high level, I salute you, sir! If I could do 1/5 of what you do, I would be happy. Aerobics for 45 minutes is something I strive for. Keep on truckin'!
All I can say is WOW! This level of activity you are able to accomplish is very impressive, even more so since you have multiple myeloma, but also for mere mortals without multiple myeloma! If you are able to participate at this high level, I salute you, sir! If I could do 1/5 of what you do, I would be happy. Aerobics for 45 minutes is something I strive for. Keep on truckin'!
Re: Biking with multiple myeloma
I am taking Nancy's advice and doing something fun with bike riding. A few of my biking buddies are doing RAGBRAI (Register's Annual Great Bike Ride Across Iowa). An opening developed as one of the people that registered dropped out, so they offered me the opportunity. This is a giant social event. It is a 6-day ride across the state. Typically you would dip your rear wheel into the Missouri River at the start and your front wheel in the Mississippi when you finish. Although it is a total of about 450 miles, it is broken up into a series of 15 to 20 mile rides going from town to town. We have a big RV we rented and 6 of us will ride with a son of one of the bikers driving the RV. There are 7 towns that provide overnight camping and parking. He will drive the RV to the days destination and wait for us. You can take this at whatever pace you want, but there will be some 10,000 people participating, so it will be more social than anything else. I have never done anything like this so I am really looking forward to it.
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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
That sounds great, Ron! I am glad that you are able to get away from the extreme heat of the south as well as doing a social ride with buddies. (I am not offering advice though, not being a competitive athlete myself.)
Enjoy summer! Here we are spending time with family, since my husband and I have the little grandchildren to help out with. I have only been on one bike ride so far this year, but hope to do more, and mostly am walking.
Enjoy summer! Here we are spending time with family, since my husband and I have the little grandchildren to help out with. I have only been on one bike ride so far this year, but hope to do more, and mostly am walking.
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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