Ron,
Good to see your update. The treatment change seems like a reasonable one and should be tolerable.
Glad to see that you are at least able to do some miles on the trainer but I realize that it's not the same. You should be careful once you start up again, not just because of your more limited neck movement but also since you have been off for a while. Best to ramp up slowly.
Forums
Re: Biking with multiple myeloma
Andrew,
I am a month plus away from riding outdoors and intend to ramp up my indoor trainer rides to the point of 45 min continuous maybe even an hour. I will gradually increase the tension on the trainer to mimic outdoor conditions as much as possible. My first ride will be my clubs social ride which is 12 miles to a coffee shop and back and a relatively flat route with just a couple of small hills. A bunch of my club members want to ride with me on my first ride back so it will probably at slow 14 mph pace. That's fine with me.
Charisse,
Dexamethasone enhances the effects of Revlimid. So the fact that your husband has stopped taking it may be why his numbers are increasing. You may want an explanation as to why that was stopped and maybe it should be introduced again. Was he having bad side effects with it? Most of us suffer various side effects from dex, including feet swelling, flush face, hiccups, elevated heart rate, insomnia, moodiness, scatter brain, feel burst of energy for 24 hours then a crash the next day. I have experienced them all. Might suggest he try 20 mg a week instead of 40 mg – will reduce side effects and could be just as effective. May also ask if adding in a proteasome inhibitor such as Velcade or Kyprolis would be called for. The Velcade-Revlimid-dexamethasone or Kyprolis-Revlimid-dexamethasone triplets have proven very effective and if it works can be backed down to once every 2 weeks. Also, the Revlimid dosage can also be gradually backed down to 10 mg or even 5 mg.
Good luck
I am a month plus away from riding outdoors and intend to ramp up my indoor trainer rides to the point of 45 min continuous maybe even an hour. I will gradually increase the tension on the trainer to mimic outdoor conditions as much as possible. My first ride will be my clubs social ride which is 12 miles to a coffee shop and back and a relatively flat route with just a couple of small hills. A bunch of my club members want to ride with me on my first ride back so it will probably at slow 14 mph pace. That's fine with me.
Charisse,
Dexamethasone enhances the effects of Revlimid. So the fact that your husband has stopped taking it may be why his numbers are increasing. You may want an explanation as to why that was stopped and maybe it should be introduced again. Was he having bad side effects with it? Most of us suffer various side effects from dex, including feet swelling, flush face, hiccups, elevated heart rate, insomnia, moodiness, scatter brain, feel burst of energy for 24 hours then a crash the next day. I have experienced them all. Might suggest he try 20 mg a week instead of 40 mg – will reduce side effects and could be just as effective. May also ask if adding in a proteasome inhibitor such as Velcade or Kyprolis would be called for. The Velcade-Revlimid-dexamethasone or Kyprolis-Revlimid-dexamethasone triplets have proven very effective and if it works can be backed down to once every 2 weeks. Also, the Revlimid dosage can also be gradually backed down to 10 mg or even 5 mg.
Good luck
-
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,
Thanks for your reply. My husband was taken off of the dex because he had been on it for so long and was on a very low dose of 8 mg./week. Even on a low dose, he had many of the side effects that you mentioned. We just got the results of his M-protein back and it is still at 0. It's just puzzling that his uninvolved kappa light chains have been on the increase for well over a year and now his lambdas are trending upward. His specialist indicated that sometimes that can happen with kidney problems, but so far all of his kidney tests have been within the normal limits. Not sure what we're looking at.
We'll certainly bring up all of our concerns once again when we see his local oncologist next week. He's also been struggling with the arthritic pain which has really impacted his QOL recently. In the meantime, he really loves his daily 10 mile bike ride – not a huge distance – he's slow and steady and it gets him out and keeps him moving.
Hope your healing continues so you can get back on your bike soon! Thanks again for your input.
Charisse
Thanks for your reply. My husband was taken off of the dex because he had been on it for so long and was on a very low dose of 8 mg./week. Even on a low dose, he had many of the side effects that you mentioned. We just got the results of his M-protein back and it is still at 0. It's just puzzling that his uninvolved kappa light chains have been on the increase for well over a year and now his lambdas are trending upward. His specialist indicated that sometimes that can happen with kidney problems, but so far all of his kidney tests have been within the normal limits. Not sure what we're looking at.
We'll certainly bring up all of our concerns once again when we see his local oncologist next week. He's also been struggling with the arthritic pain which has really impacted his QOL recently. In the meantime, he really loves his daily 10 mile bike ride – not a huge distance – he's slow and steady and it gets him out and keeps him moving.
Hope your healing continues so you can get back on your bike soon! Thanks again for your input.
Charisse
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Charisse DeFlice - Name: Charisse
- Who do you know with myeloma?: Husband/John
- When were you/they diagnosed?: July 2010
- Age at diagnosis: 61
Re: Biking with multiple myeloma
Charisse,
With multiple myeloma different clones that may have been hidden can develop and become dominant over time. So what was dormant becomes dominant as it may be resistant to Revlimid and thus takes over. Cannot say that is the case with your husband or that something else is going on. This disease is heterogeneous and can be very unpredictable.
Glad to hear that your husband rides. We all need to do what we can. Staying as active as possible helps both mentally and physically.
With multiple myeloma different clones that may have been hidden can develop and become dominant over time. So what was dormant becomes dominant as it may be resistant to Revlimid and thus takes over. Cannot say that is the case with your husband or that something else is going on. This disease is heterogeneous and can be very unpredictable.
Glad to hear that your husband rides. We all need to do what we can. Staying as active as possible helps both mentally and physically.
-
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,
You sold me. It's time to start cycling. I have tried cycling in the past but always managed to injure myself by not conditioning my ligaments properly (at least that was one of my excuses). After embarrassing myself at a charity walk last October, I have faithfully been going to a gym every Monday, Wednesday, and Friday. I have seen positive strength results but my weight isn't coming off as I hoped. I only have 5-10 lbs I'd like to lose. Anyhow, for the last couple weeks I have added Tuesdays and Thursday as exercise bike day. The great weather we have been having is tempting me to hit the road.
I have severe neuropathy. So bad that when I ride my motorcycles I often look down to verify my feet are properly on the foot rests. It's a little challenging to make sure you aren't applying the foot brake unintentionally; and you just have to shift the gears hard enough to ensure it shifts. I can't feel or hear it very well on a couple of my bikes.
Which brings me to my cycling adventure. I recently realized if I updated my bike to clipless pedals I would eliminate most of my worries about keeping my feet on the pedals. With that said, I'm going to outfit my indoor bike and try to get accustomed to using them before installing on my road bike and cycling out of the neighborhood.
While central Kentucky has some beautiful hilly roads that I enjoy on a motorcycle, I'm looking forward to enjoying a few on my bicycle. If I can just not think about all the hills, which is easier said than done since the streets in my 'Southeastern Hills' neighborhood are named after mountain ranges. I never gave the neighborhood or street names much thought until I took a ride last summer. I can always throw the bike in my truck and head to a nearby designated bike trail until comfortable. It does get comfortable, right?
You sold me. It's time to start cycling. I have tried cycling in the past but always managed to injure myself by not conditioning my ligaments properly (at least that was one of my excuses). After embarrassing myself at a charity walk last October, I have faithfully been going to a gym every Monday, Wednesday, and Friday. I have seen positive strength results but my weight isn't coming off as I hoped. I only have 5-10 lbs I'd like to lose. Anyhow, for the last couple weeks I have added Tuesdays and Thursday as exercise bike day. The great weather we have been having is tempting me to hit the road.
I have severe neuropathy. So bad that when I ride my motorcycles I often look down to verify my feet are properly on the foot rests. It's a little challenging to make sure you aren't applying the foot brake unintentionally; and you just have to shift the gears hard enough to ensure it shifts. I can't feel or hear it very well on a couple of my bikes.
Which brings me to my cycling adventure. I recently realized if I updated my bike to clipless pedals I would eliminate most of my worries about keeping my feet on the pedals. With that said, I'm going to outfit my indoor bike and try to get accustomed to using them before installing on my road bike and cycling out of the neighborhood.
While central Kentucky has some beautiful hilly roads that I enjoy on a motorcycle, I'm looking forward to enjoying a few on my bicycle. If I can just not think about all the hills, which is easier said than done since the streets in my 'Southeastern Hills' neighborhood are named after mountain ranges. I never gave the neighborhood or street names much thought until I took a ride last summer. I can always throw the bike in my truck and head to a nearby designated bike trail until comfortable. It does get comfortable, right?
-
blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Biking with multiple myeloma
Craig,
I happy to see that you are motivated to get back into cycling. Based on your post, I have a couple of suggestions. You mentioned injuries from prior attempts to cycle regularly. I encourage you to take your bike to a good shop and make sure that you are fitted properly. Most discomfort after the first few rides is due to poor bike fit.
Clipless pedals are great. If you have not used them before, one suggestion is to practice getting into and out of the pedals in an area where there is no traffic and you have plenty of room if you cannot get out of the pedals quickly. If your pedals have adjustable tension release, set them for easy release until you get used to it.
Good luck and safe riding!
I happy to see that you are motivated to get back into cycling. Based on your post, I have a couple of suggestions. You mentioned injuries from prior attempts to cycle regularly. I encourage you to take your bike to a good shop and make sure that you are fitted properly. Most discomfort after the first few rides is due to poor bike fit.
Clipless pedals are great. If you have not used them before, one suggestion is to practice getting into and out of the pedals in an area where there is no traffic and you have plenty of room if you cannot get out of the pedals quickly. If your pedals have adjustable tension release, set them for easy release until you get used to it.
Good luck and safe riding!
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Andrew,
Thanks for the suggestions. I have a very experienced ex-coworker who is guiding me and offered to setup my bike, again. The tires were updated just a couple years ago.
Admittedly, I do feel like there is too much weight on my hands, or it might be the extra fat I'm carrying, so a fitting does make sense. I'm 6'1" carrying just over 200 lbs. My bike was a good bike when I bought it in '82; Motobecane Super Mirage.
A couple years ago, when I got it out, I noticed my original rear derailleur hanger was broken off and replaced with an aftermarket hanger. I've got to laugh because I never remember breaking it or replacing the hanger, but it has moved across the country several times in U-hauls and a few crashes, so it's not surprising.
Anyhow, the additional offset of the derailleur hanger makes it hard to get in the lowest gear. I can't find an exact hanger replacement on the Internet. It's not like I don't have the skills and tools to design one and write the CNC programs to have someone knock it out where I used to work. Cognitive skills really take a beating when it comes to remembering computer programs. For now, I'll do without the lowest gear (although I may try to get the full range of derailleur adjustment out of it again - my buddy tried last time and he is as sharp as they come - but he can't look a girl in the eye. lol. That's why he rides a bike all the time. Engineers ...
Last night I was persistent and finally found a manual online for my ex-fitness center Cybex 700R recumbent bike. Boy, does it have some nice features I have never stumbled onto while riding. I'm sure most of the features are more marketing hype (critical engineer) than practical, but everything on it appears to work after replacing a battery pack a few years back. Until recently, my 16-year-old cat used it more than me, as a stepping stone up to the bed.
So, I've stalled long enough. Time to ride to the gym. If we hit 77 degrees F today, it will be the warmest winter day on record for Lexington.
Thanks again
Thanks for the suggestions. I have a very experienced ex-coworker who is guiding me and offered to setup my bike, again. The tires were updated just a couple years ago.
Admittedly, I do feel like there is too much weight on my hands, or it might be the extra fat I'm carrying, so a fitting does make sense. I'm 6'1" carrying just over 200 lbs. My bike was a good bike when I bought it in '82; Motobecane Super Mirage.
A couple years ago, when I got it out, I noticed my original rear derailleur hanger was broken off and replaced with an aftermarket hanger. I've got to laugh because I never remember breaking it or replacing the hanger, but it has moved across the country several times in U-hauls and a few crashes, so it's not surprising.
Anyhow, the additional offset of the derailleur hanger makes it hard to get in the lowest gear. I can't find an exact hanger replacement on the Internet. It's not like I don't have the skills and tools to design one and write the CNC programs to have someone knock it out where I used to work. Cognitive skills really take a beating when it comes to remembering computer programs. For now, I'll do without the lowest gear (although I may try to get the full range of derailleur adjustment out of it again - my buddy tried last time and he is as sharp as they come - but he can't look a girl in the eye. lol. That's why he rides a bike all the time. Engineers ...
Last night I was persistent and finally found a manual online for my ex-fitness center Cybex 700R recumbent bike. Boy, does it have some nice features I have never stumbled onto while riding. I'm sure most of the features are more marketing hype (critical engineer) than practical, but everything on it appears to work after replacing a battery pack a few years back. Until recently, my 16-year-old cat used it more than me, as a stepping stone up to the bed.
So, I've stalled long enough. Time to ride to the gym. If we hit 77 degrees F today, it will be the warmest winter day on record for Lexington.
Thanks again
-
blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Biking with multiple myeloma
Craig,
Just to add a little to what Andrew said about clipless pedals, to get out, simple push your heal out. Also make sure that before you stop, you downshift into the small ring and low gear on your cassette. Many of us learned the hard way trying to start back up from a full stop in a high gear in the big ring.
Good luck and glad you are riding!
Ron
Just to add a little to what Andrew said about clipless pedals, to get out, simple push your heal out. Also make sure that before you stop, you downshift into the small ring and low gear on your cassette. Many of us learned the hard way trying to start back up from a full stop in a high gear in the big ring.
Good luck and glad you are 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
Re: Biking with multiple myeloma
So, today was a starting point. It's all downhill from here. I figured with a cell phone, who needs cash riding to the home owners association gym? Me. A couple girls had a lemonade stand open for business on the way out. They were closed after the workout, so I guess I'll have to settle for their photograph. Who has heard of a lemonade stand in the winter time?
I coasted every chance I got. Foot came off the standard pedal 4 times in under 4 miles. While sitting outside afterwards enjoying an adult beverage, I look down at my left tennis shoe and apparently my heel was rubbing my tire during the trip. Quite often, as was evident with all the black shredded rubber. I didn't need that extra weight anyhow.
Apparently my tandem transplants are still limiting my performance, which surprises me because I have very good results from my lab work. But just two years from tomorrow, I was re-hospitalized for eight days due to sepsis. I weighed in for that fight at 145 pounds (sixty pounds ago).
Notes to self: 1) Do not quit. 2) Left hand brake stops a motorcycle, not so much a bike.
I coasted every chance I got. Foot came off the standard pedal 4 times in under 4 miles. While sitting outside afterwards enjoying an adult beverage, I look down at my left tennis shoe and apparently my heel was rubbing my tire during the trip. Quite often, as was evident with all the black shredded rubber. I didn't need that extra weight anyhow.
Apparently my tandem transplants are still limiting my performance, which surprises me because I have very good results from my lab work. But just two years from tomorrow, I was re-hospitalized for eight days due to sepsis. I weighed in for that fight at 145 pounds (sixty pounds ago).
Notes to self: 1) Do not quit. 2) Left hand brake stops a motorcycle, not so much a bike.
-
blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Biking with multiple myeloma
Its been 12 weeks since my accident when I broke 4 cervical discs in my neck and had disc fusion surgery. I saw the surgeon on Monday and after X-rays and a review of my range of motion, I got the green light to start outdoor biking. In anticipation of this, I had my bike reconfigured so as to accommodate my loss of right-left rotation and to a lesser extent up and down motion. So I had mirrors put on the bar ends to see what is behind me and raised the handle bars so I ride slightly more upright to take strain off my neck.
I went out Wednesday late afternoon to test the setup out. I originally intended to do just a few miles. However, it felt ok, so I extended the ride, getting in a little over 27 miles. My neck was tired after the ride, and I could not go fast, but I felt exhilarated in finally being able to ride outdoors. Prior to this ride, I had been on my indoor trainer for 5 weeks and that was getting boring!
Tomorrow I will do a club ride, which will be my first group ride. Everyone is anxious to ride with me, and safety will be the rule. They somehow think I provide them inspiration, but I don't see it that way. I am just doing what I love and not letting the injury stop me. You can say I am headstrong and determined, my wife thinks I am nuts.
I went out Wednesday late afternoon to test the setup out. I originally intended to do just a few miles. However, it felt ok, so I extended the ride, getting in a little over 27 miles. My neck was tired after the ride, and I could not go fast, but I felt exhilarated in finally being able to ride outdoors. Prior to this ride, I had been on my indoor trainer for 5 weeks and that was getting boring!
Tomorrow I will do a club ride, which will be my first group ride. Everyone is anxious to ride with me, and safety will be the rule. They somehow think I provide them inspiration, but I don't see it that way. I am just doing what I love and not letting the injury stop me. You can say I am headstrong and determined, my wife thinks I am nuts.
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56