Update
Last Weds I had a treatment (Velcade shot and 8 mg of dex and 4 bottles of IVIG). I get the IVIG once a month which my oncologist ordered in response to Menengitis and C Diff that I contracted a year ago. I think this will be cut back as I have not shown any ill effects and seem to be stronger. I did make the mistake of riding that day after the treatment - got in about 30 miles at a relatively mild pace - and had bad calf cramps that night. Won't be doing that again!
By Saturday I was fully recovered and did the Tour de Cure bike rally, 64 miles (a little over 100k) in 3 hours and 46 min or about a 17 mph average pace. The Tour de Cure is held as a fundraiser to find a cure for diabetes. My wife, Sue has Type II and my younger sister, Kathy has Type 1.
I am also in training for the Hotter N Hell 100 mile bike rally that will be held on August 23 and then the Texas Time Trials to be held in mid September. That race is in a time trial format on a 26 mile course. I will be doing it as part of 3 man team and we will race for 24 hours alternating laps and see how many miles we can cover in the alloted time.
Tomorrow a few members of my bike club will join me in doing a 92 mile training ride that I mapped out to get prepared for the HHH. Its supposed to cool down to the upper 90s tomorrow! (Has been over 100 every day for the past 7 days in North Texas).
Ron
Forums
-
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 bonked on the training ride and had to call me son and who came and picked me up after 65 miles.
For those who are not bikers, bonking means you have hit your limit and your body will not allow you to continue without jeopardizing your health. It is marked by fatigue and cramping. I am not sure why it happened as I had eaten and was properly hydrated. I had no trouble doing a fast 64-mile rally the week before. The temperature this morning was not that hot and I felt strong early. I possibly went out too fast but not sure that was it.
There is no doubt that my multiple myeloma and the treatments I get have kept me at borderline low normal or just below with respect to my HGB and HTC levels. If you don't get the red cells to the muscles and you are working hard you can become fatigued earlier. So I suspect that my border line anemia was a contributing factor.
Got to learn from this as I have the 100 mile HHH coming up in two weeks.
Ron H
For those who are not bikers, bonking means you have hit your limit and your body will not allow you to continue without jeopardizing your health. It is marked by fatigue and cramping. I am not sure why it happened as I had eaten and was properly hydrated. I had no trouble doing a fast 64-mile rally the week before. The temperature this morning was not that hot and I felt strong early. I possibly went out too fast but not sure that was it.
There is no doubt that my multiple myeloma and the treatments I get have kept me at borderline low normal or just below with respect to my HGB and HTC levels. If you don't get the red cells to the muscles and you are working hard you can become fatigued earlier. So I suspect that my border line anemia was a contributing factor.
Got to learn from this as I have the 100 mile HHH coming up in two weeks.
Ron H
-
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,
I sometimes require a nap after a trip to Walmart so everything you are capable of doing blows me away. I couldn't even come close before the myeloma. I congratulate you on all your progress and on knowing when to call it a day. All my best to you.
You are inspiring!
I sometimes require a nap after a trip to Walmart so everything you are capable of doing blows me away. I couldn't even come close before the myeloma. I congratulate you on all your progress and on knowing when to call it a day. All my best to you.
You are inspiring!
-
Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Biking with multiple myeloma
I stumpled across this thread and find it surprising but inspirational.
I am/was a heavy duty cyclist averaging 275 miles a week on the road until the multiple myeloma hit. I have been undergoing induction therapy for a little over a month. But the bone pain has been so severe that the idea of cycling has been the farthest thing from my mind. In fact, until this past weekend, I could not walk around the block.
So I am wondering if all of you who have been posting here just never experienced serious bone pain from multiple myeloma, or just gritted your teeth and road through it.
I am/was a heavy duty cyclist averaging 275 miles a week on the road until the multiple myeloma hit. I have been undergoing induction therapy for a little over a month. But the bone pain has been so severe that the idea of cycling has been the farthest thing from my mind. In fact, until this past weekend, I could not walk around the block.
So I am wondering if all of you who have been posting here just never experienced serious bone pain from multiple myeloma, or just gritted your teeth and road through it.
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Before I knew I had multiple myeloma I was becoming more and more sickly, which led to trouble walking (weakness/ fatigue/ dizzyness and also an irregular heart beat from anemia) and no stamina.
I could barely walk around a block, but as soon as I sat down on my bike I was able to continue my regular routine of comuting 10km's each way to and from work without much trouble. I think it was because my body was so used to cycling, and sitting on the bike seemed to relax me.
When I was diagnosed I was in the hospital for a while, and then I immediatly started chemo and had stem cell transplant 6 monts after. When I was out of the hopspital from transplant I bought a new road bike, but didn't ride it for a 6 weeks or so, and first time on it barely got a 5km ride before I had to go home and lay down!.
I had to start back very slow at the gym rebuilding my stamina, and most of all my muscle mass! I lost all my muscle tone from a combination of high dose dex and also from not doing anything physical for months.
I started with simple cardio machines, and swimming everyday, but the turn around for me is when I started more weight building excercise to gain muscle back (I do a gym class with the stability ball and dumbells every week, and also the machines).
I signed up for a hug bike ride to raise money for Cancer research (200kms') that was on the first anniversary of my transplant and the 6 months leading up to that I was training alot with almost daily rides,slowly increasing my distance. having that goal really helped me get back in the saddle and motivated to train towards something.
Now I'm still in remission, but had to go back to work full time to support myself so I'm riding just mostly for commuting about 30 km's a few days a week to and from work, and a big ride on the weekend (50km)
I don't really have bone pain. I had some lytic lesion in my thoracic, but as soon as I started pamidronate (bone building drugs) the pain vanished and has not affected my bike ride.
I could barely walk around a block, but as soon as I sat down on my bike I was able to continue my regular routine of comuting 10km's each way to and from work without much trouble. I think it was because my body was so used to cycling, and sitting on the bike seemed to relax me.
When I was diagnosed I was in the hospital for a while, and then I immediatly started chemo and had stem cell transplant 6 monts after. When I was out of the hopspital from transplant I bought a new road bike, but didn't ride it for a 6 weeks or so, and first time on it barely got a 5km ride before I had to go home and lay down!.
I had to start back very slow at the gym rebuilding my stamina, and most of all my muscle mass! I lost all my muscle tone from a combination of high dose dex and also from not doing anything physical for months.
I started with simple cardio machines, and swimming everyday, but the turn around for me is when I started more weight building excercise to gain muscle back (I do a gym class with the stability ball and dumbells every week, and also the machines).
I signed up for a hug bike ride to raise money for Cancer research (200kms') that was on the first anniversary of my transplant and the 6 months leading up to that I was training alot with almost daily rides,slowly increasing my distance. having that goal really helped me get back in the saddle and motivated to train towards something.
Now I'm still in remission, but had to go back to work full time to support myself so I'm riding just mostly for commuting about 30 km's a few days a week to and from work, and a big ride on the weekend (50km)
I don't really have bone pain. I had some lytic lesion in my thoracic, but as soon as I started pamidronate (bone building drugs) the pain vanished and has not affected my bike ride.
-
lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Biking with multiple myeloma
Oh and I know I'm kind of a small fry compared to Ron and the other guys in here, but biking and being active has been a key for my recovery. Getting active and staying that way keeps me feeling well, and I like to think the multiple myeloma in its cage!
-
lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Biking with multiple myeloma
I also have not experienced any serious bone pain.
With me in the beginning it was stamina. With weekly doses of VRD I found that I could not ride for 36 hours after a treatment and had trouble on consecutive days. But I did 100k ride just a month after I started treatments. I gradually kept working up my rides but I never was at 275 miles a week. Even now in the summer I do 4 rides a week. One is in the 55-65 mile range and the other 3 are 25-35 miles each. So I average about 120-130 miles a week. Two of the 3 short rides are interval type work where I try and sprint up the short hills.
Most of the rides I do are a mixture of short rolling hills and flat areas. No big long climbs in North Texas. This year so far I have logged in just over 3,400 outdoor miles. I also have a couple hundred indoor miles from winter spin classes and work on my trainer.
You do need to do some resistance training. On the days I don't ride I do dumbbell squats - 4 sets of 15 each with 5lb dumbbells and 75 pushups - 3 sets of 25 (I alternate with the squats). Then daily leg - hamstring stretching and planks for the abs. I use resistance tubing I use for curls, shoulder stretches and mimic bench press. I just started that recently. My resistance tube is red with handles. These are great since you get a safe resistance work out without worrying about or needing free weights.
Ron
With me in the beginning it was stamina. With weekly doses of VRD I found that I could not ride for 36 hours after a treatment and had trouble on consecutive days. But I did 100k ride just a month after I started treatments. I gradually kept working up my rides but I never was at 275 miles a week. Even now in the summer I do 4 rides a week. One is in the 55-65 mile range and the other 3 are 25-35 miles each. So I average about 120-130 miles a week. Two of the 3 short rides are interval type work where I try and sprint up the short hills.
Most of the rides I do are a mixture of short rolling hills and flat areas. No big long climbs in North Texas. This year so far I have logged in just over 3,400 outdoor miles. I also have a couple hundred indoor miles from winter spin classes and work on my trainer.
You do need to do some resistance training. On the days I don't ride I do dumbbell squats - 4 sets of 15 each with 5lb dumbbells and 75 pushups - 3 sets of 25 (I alternate with the squats). Then daily leg - hamstring stretching and planks for the abs. I use resistance tubing I use for curls, shoulder stretches and mimic bench press. I just started that recently. My resistance tube is red with handles. These are great since you get a safe resistance work out without worrying about or needing free weights.
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
I appreciate the responses. I am going to try to ride today, maybe 30 minutes or so. After reading this thread yesterday I went home and pedaled on my indoor trainer for a bit and it felt better than walking.
It is also interesting to hear how you address the resistance training without lifting heavy weights. My doctor has told me that I should not lift more than 10 pounds which is a bit limiting. So far I have been using the machines and free weights at the gym but limiting myself to lowest settings and the lightest weights.
It is also interesting to hear how you address the resistance training without lifting heavy weights. My doctor has told me that I should not lift more than 10 pounds which is a bit limiting. So far I have been using the machines and free weights at the gym but limiting myself to lowest settings and the lightest weights.
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Like a few others on this thread, I've not had significant bone damage and the bone pain has been an "on and off" sort of thing, only severe when the myeloma is particularly active. Although I have lesions head to ankles, none are particularly large. Both my oncology doc and ortho have given me green light to be as active as body will tolerate.
My question is: For those of you who do not already have severe bone lesions, do you do Zometa or other bisphosphonates prophylacticly?
Also, regarding dex: When I started on maintenance post ASCT, in concert with my oncologist decided that - for me - I would rather go without the weight gain and muscle deterioration that goes with the steroid. Until marker numbers start going up again, I'm going with Velcade only.
I'm 6 months post transplant and, while not back to old pace, am on schedule for training for Oct. marathon (doing about 40 miles/wk running, 50-75 miles bike.) The bike miles and other low-imact crosstraining keep from stressing back and ribs too much.
Post transplant - In regaining stamina and fighting fatigue (which is the biggest challenge for me) "weight" training has, I think, been the biggest help. At first, all I could do was body weight with few reps per set, then went to body weight with more reps, then started adding weight slowly. I am not suppose to go over 25 lbs. extra, but I fudge sometimes now.
Anyway ... It is, I suppose, a calculated risk for me to not take dex or bisphosphonates. But - for me - I would rather stay as physically active as long as able. The marathon is, well, stupid. But, one more!
My question is: For those of you who do not already have severe bone lesions, do you do Zometa or other bisphosphonates prophylacticly?
Also, regarding dex: When I started on maintenance post ASCT, in concert with my oncologist decided that - for me - I would rather go without the weight gain and muscle deterioration that goes with the steroid. Until marker numbers start going up again, I'm going with Velcade only.
I'm 6 months post transplant and, while not back to old pace, am on schedule for training for Oct. marathon (doing about 40 miles/wk running, 50-75 miles bike.) The bike miles and other low-imact crosstraining keep from stressing back and ribs too much.
Post transplant - In regaining stamina and fighting fatigue (which is the biggest challenge for me) "weight" training has, I think, been the biggest help. At first, all I could do was body weight with few reps per set, then went to body weight with more reps, then started adding weight slowly. I am not suppose to go over 25 lbs. extra, but I fudge sometimes now.
Anyway ... It is, I suppose, a calculated risk for me to not take dex or bisphosphonates. But - for me - I would rather stay as physically active as long as able. The marathon is, well, stupid. But, one more!
-
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,
Good to hear from you. I have been on Aredia since my original protocal. It has been reduced from monthly to once a quarter (every 3 months). I am still on dex but it was reduced from 40 mg every week to 8 mg once every 2 weeks. I take the dex at the same time I get my Velcade shot. The dex is supposed to enhance the effects of the Velcade.
I, like a lot of people on dex, have reactions - insomnia, moodiness, elevated heart rate, and experience the "crash" after day 2 following ingestion of the pills. The effects are far less at 8 mg than they were at 40 mg. However, I like to wait at least 36 hours after a treatment to ride again. I have not noticed any big weight gains with the dex that some people descibe and I also have not noticed any muscle deterioration. I am on a maintenance protocol but never have been free of treatments since I started back in Feb. 2009.
Ron
Good to hear from you. I have been on Aredia since my original protocal. It has been reduced from monthly to once a quarter (every 3 months). I am still on dex but it was reduced from 40 mg every week to 8 mg once every 2 weeks. I take the dex at the same time I get my Velcade shot. The dex is supposed to enhance the effects of the Velcade.
I, like a lot of people on dex, have reactions - insomnia, moodiness, elevated heart rate, and experience the "crash" after day 2 following ingestion of the pills. The effects are far less at 8 mg than they were at 40 mg. However, I like to wait at least 36 hours after a treatment to ride again. I have not noticed any big weight gains with the dex that some people descibe and I also have not noticed any muscle deterioration. I am on a maintenance protocol but never have been free of treatments since I started back in Feb. 2009.
Ron
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56