Most of the posts on this site; for good reason, discuss diagnosis, prognosis, treatments and the physical and mental reactions to those three. This post is a little different, although related. If we allow ourselves, we can be consumed both mentally and physically by this disease. It is not easy to push our focus onto something else. But, in my opinion, we need to find something else to focus our attention upon and set goals for ourselves and push to meet them. Otherwise, we can be consumed by our plight and become mentally overwhelmed, a mental slave if you will, to this disease.
In my case I have a passion for biking-cycling. That passion came to me later in life, as I did not pick up biking until I was in my mid 50s. I originally started biking as a way to lose weight and get back into shape after years of being a couch potato. After my diagnosis however, I went into cycling with a passion. Prior to the diagnosis (Feb 2009) I had completed my first “century” doing the 100 miles in the Hotter N Hell 100 in Wichita Falls, Texas in August 2008. That ride got me hooked on cycling and I did not want to give it up.
Most of the advice you read about given to multiple myeloma patients is to exercise moderately. Ride an indoor bike, do not take chances on outdoor cycling, since if you fall, you risk breaking bones. Exercise moderately, not to excess and avoid risks. In other words stay off a bicycle since it is too dangerous for a multiple myeloma patient.
Well that risk adverse standard advice just does not work for me. I talked it over with my oncologist and his advice was to go ahead and ride outdoors but listen to what my body was telling me. That was my opening. I started my treatments in early March of 2009 that consisted of a weekly Velcade infusion combined with 40 mg of dex each week and 10 mg of Revlimid every day for 21 days plus monthly infusions of Aredia. However, despite the rigors of treatment I was still able to ride in a 100k rally (63 miles) in early April.
The rally is called the "Beauty and the Beast" included a Category 5 hill (1/2 mile long at 12 degrees) called the "Beast". My original plans was to take a cutoff and avoid that hill and shorten the rally to 40 miles. At a rest stop beford the cutoff, I was talking to other cyclists. They found out I drove over from Dallas. They goaded me saying: “If you came all that way (2 plus hour drive) then you have to go up the Beast”. So I did. I road that rally on a Saturday only 2 days after having my “treatment”, infusions and dex.
Did I push myself? Yes of course I did and probably over what most people would consider wise. However, I felt a sense of accomplishment and well being. That rally reinforced my determination to fight back and conviction that multiple myeloma was not going to beat me.
I have had multiple myeloma for over 3 years now and based on my last check up I continue to be in full remission. I never had a transplant and am still on VRD but on reduced levels and longer intervals between “treatments”. On the weekend of Palm Sunday, I competed in the Texas Senior Games in San Antonio and did a 5K and 10K Time Trials and a 40K road race. I came in 6th out of 18 in my age group (60-64) in the 40K Road Race and finished in the middle of the pack in the time trials. I can assure you that I was the only multiple myeloma patient in my age group and probably all of the age groups.
Last year I logged in over 4,800 miles out doors and about 500 miles on my indoor trainer. This year I intend to compete in the Texas Time Trials and do 3 or 4 rallies including the Multiple Scoliosis “multiple myeloma” 150 and the Hotter N Hell 100. e . Being able to continue riding the bike was my first goal, since then my cycling passion has progressed into a desire to compete/race.
Certainly cycling has given me something to take my focus off of my disease. It gives me something to look forward to. The goal setting and training it takes to meet those goals is a big part of it. The side benefit is it keeps me in shape and healthy and mentally alert.
Cycling is not for everyone; however, we all must find something to have a passion in and focus on other than multiple myeloma.
Ron
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
Nice post! I am a cyclist as well (among other things!)
I am probably a fair bit younger (34) was 32 when diagnosed in Feb. 2010. I was quite ill when I was diagnosed so exercising was not something I was up too. About a month before I was diagnosed I was at the gym, on the elliptical at slow pace and almost fainted. Funny thing was that I had noticed when I sweat it had a strange Ammonia smell to it (yes working out made me smell like cat pee!)
After all my chemo I did stem cell transplant in summer 2010. About 6 months after that (and laying on the couch!) I started working out again, slowly at first, but working up to getting some stamina back. Getting back at the gym made me feel so much better, I started getting some energy back, sleeping better, and trying to get back into my pre-cancer shape (steroids made me pretty much loose all my muscle tone, and gain about 30 pounds). I really like swimming (former competitve swimmer) so I was swimming almost every day.
A few months post transplant I signed up to do the Ride to Conquer Cancer, a bike ride fundraiser for Princess Margaret Hospital in Toronto. I used it as a motivator to get back into shape, and also because the event was on the first anniversary of my stem cell transplant. the event is 200km bike ride over 2 days from Toronto to Niagara falls, in Ontario. I trained at the gym, and then in the spring biking outdoors working up to 75km training rides. Was a great experience, so we signed up to do it all over again for 2012!
About 10 months after my transplant (winter 2011) I went to a doctor's appointment, my monthly myeloma check up. My husband and I were chatting about our recent snowboard trip, my doctor a little surprised I was able to do it, but we assured her I don't really fall, and we usually only go for half day not to over do it.. lol. She commented that because my age makes my case somewhat unique she just goes by what I tell her, and she says If I'm able I should "live a little!" lol.
When I first told her I was working out the only real limitations were to watch my back, no twisting movements, so I don't use those ab machines, and I do lower impact abs at the classes I do.
I have only recently stated seeing noticeable changes in my physique (muscle definition etc.) I was only able to drop some of the dex/ transplant weight, but I'm also dealing with hormonal issues from the chemo. So I'm not quite back to my pre-diagnosis fitness (maybe I will never be able to get back there) but I'm feeling pretty good these days.
I am probably a fair bit younger (34) was 32 when diagnosed in Feb. 2010. I was quite ill when I was diagnosed so exercising was not something I was up too. About a month before I was diagnosed I was at the gym, on the elliptical at slow pace and almost fainted. Funny thing was that I had noticed when I sweat it had a strange Ammonia smell to it (yes working out made me smell like cat pee!)
After all my chemo I did stem cell transplant in summer 2010. About 6 months after that (and laying on the couch!) I started working out again, slowly at first, but working up to getting some stamina back. Getting back at the gym made me feel so much better, I started getting some energy back, sleeping better, and trying to get back into my pre-cancer shape (steroids made me pretty much loose all my muscle tone, and gain about 30 pounds). I really like swimming (former competitve swimmer) so I was swimming almost every day.
A few months post transplant I signed up to do the Ride to Conquer Cancer, a bike ride fundraiser for Princess Margaret Hospital in Toronto. I used it as a motivator to get back into shape, and also because the event was on the first anniversary of my stem cell transplant. the event is 200km bike ride over 2 days from Toronto to Niagara falls, in Ontario. I trained at the gym, and then in the spring biking outdoors working up to 75km training rides. Was a great experience, so we signed up to do it all over again for 2012!
About 10 months after my transplant (winter 2011) I went to a doctor's appointment, my monthly myeloma check up. My husband and I were chatting about our recent snowboard trip, my doctor a little surprised I was able to do it, but we assured her I don't really fall, and we usually only go for half day not to over do it.. lol. She commented that because my age makes my case somewhat unique she just goes by what I tell her, and she says If I'm able I should "live a little!" lol.
When I first told her I was working out the only real limitations were to watch my back, no twisting movements, so I don't use those ab machines, and I do lower impact abs at the classes I do.
I have only recently stated seeing noticeable changes in my physique (muscle definition etc.) I was only able to drop some of the dex/ transplant weight, but I'm also dealing with hormonal issues from the chemo. So I'm not quite back to my pre-diagnosis fitness (maybe I will never be able to get back there) but I'm feeling pretty good these days.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Biking with multiple myeloma
Thank you for the biking inspiration!
I live in north central Montana and am eagerly waiting the arrival of warm weather so I can go on my bike rides.
I have smoldering myeloma and am 53 years old. Getting out on my bike is the best thing I do for myself. Sunshine, fresh air ... and my fave trails outside of town! I just push myself a little harder each time that I go outside, get the heart rate up, and have fun! It's a great way to get exercise and sunshine! I have to ride the exercise bikes at the gym in the winter ... not the same!
I hope I can go on a long ride with a group this summer ...
Thanks and keep on pedaling!
I live in north central Montana and am eagerly waiting the arrival of warm weather so I can go on my bike rides.
I have smoldering myeloma and am 53 years old. Getting out on my bike is the best thing I do for myself. Sunshine, fresh air ... and my fave trails outside of town! I just push myself a little harder each time that I go outside, get the heart rate up, and have fun! It's a great way to get exercise and sunshine! I have to ride the exercise bikes at the gym in the winter ... not the same!
I hope I can go on a long ride with a group this summer ...
Thanks and keep on pedaling!
Re: Biking with multiple myeloma
It is good to hear from others going through the same decision making process.
My skeletal survey results came back pretty good and I have been on Aredia for a while, so I have decided to get back to the activities I had been doing before. I completed my SCT in November and was back on the bike in January for short rides. On February 9th I rode in the Tour of Palms Springs 25 mile segment, next year hopefully I will do the 50 like last year just before diagnosis.
I also have been doing some snow skiing this season but being very conservative on the slope.
I listen to my body much more than I did before and call it quits when the signals tell me too. Getting back to doing the things I did before had been really good psychologically in dealing with having multiple myeloma.
My skeletal survey results came back pretty good and I have been on Aredia for a while, so I have decided to get back to the activities I had been doing before. I completed my SCT in November and was back on the bike in January for short rides. On February 9th I rode in the Tour of Palms Springs 25 mile segment, next year hopefully I will do the 50 like last year just before diagnosis.
I also have been doing some snow skiing this season but being very conservative on the slope.
I listen to my body much more than I did before and call it quits when the signals tell me too. Getting back to doing the things I did before had been really good psychologically in dealing with having multiple myeloma.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Biking with multiple myeloma
I concur with everyone else, biking is the best therapy I've found - it works the body and clears the mind. I manage about 100 miles per week, from Apr/May through Sep/Oct, depending on the weather, with a few "long" rides thrown in here and there. Do some spinning through the winter, but find it difficult to do regularly because it's so boring.
I knew something was wrong two summers ago when I started to have trouble keeping up with my daughter (even though I was 52 and she was 18). This and some other symptoms led me to the doctor where I discovered I was anaemic, and eventually diagnosed with multiple myeloma. Four months after treatment started last year, things were back to normal and my daughter was working to keep up with me again.
In celebration of my CR, I just bought a new 29er and am selling both my 26" mountain bike and my road bike. I figure it will give me the best of both worlds and can't wait to start putting some serious miles on. My daughter and I have several long rides planned this summer, including a 100 miler on a rails to trail in Michigan.
Like Ron says though, biking isn't going to be for everyone. However, if you can find something equivalent it makes a world of difference.
I knew something was wrong two summers ago when I started to have trouble keeping up with my daughter (even though I was 52 and she was 18). This and some other symptoms led me to the doctor where I discovered I was anaemic, and eventually diagnosed with multiple myeloma. Four months after treatment started last year, things were back to normal and my daughter was working to keep up with me again.
In celebration of my CR, I just bought a new 29er and am selling both my 26" mountain bike and my road bike. I figure it will give me the best of both worlds and can't wait to start putting some serious miles on. My daughter and I have several long rides planned this summer, including a 100 miler on a rails to trail in Michigan.
Like Ron says though, biking isn't going to be for everyone. However, if you can find something equivalent it makes a world of difference.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Biking with multiple myeloma
Hi Ron!!
This biking sure sounds fun. I really enjoyed my 6 a.m. cycling classes at the fitness club 5 years ago. Perhaps, I will consider biking now that I know it is one of the things that really helps with multiple myeloma as a form of exercise. I had been thinking about strength training to ward off some of the muscle loss that occurs with steroids. But biking sounds like waaay more fun!!
I am curious about your therapy..have you been on VRD since 2009 without a break?
You wrote:
"am still on VRD but on reduced levels and longer intervals between “treatments”.."
Conventional therapy is 3 weeks on 1 week off. What are the longer intervals you are on?
I am happy to hear you have done all this and stayed in remission without a SCT.
Between the cycling, no SCT, and longer treatment intervals, your post was very inspiring.
Not to mention that it has been 3 years for you!!
Niiiiice.
P.S. I think it was the dex that helped you conquer the Beast!!
This biking sure sounds fun. I really enjoyed my 6 a.m. cycling classes at the fitness club 5 years ago. Perhaps, I will consider biking now that I know it is one of the things that really helps with multiple myeloma as a form of exercise. I had been thinking about strength training to ward off some of the muscle loss that occurs with steroids. But biking sounds like waaay more fun!!
I am curious about your therapy..have you been on VRD since 2009 without a break?
You wrote:
"am still on VRD but on reduced levels and longer intervals between “treatments”.."
Conventional therapy is 3 weeks on 1 week off. What are the longer intervals you are on?
I am happy to hear you have done all this and stayed in remission without a SCT.
Between the cycling, no SCT, and longer treatment intervals, your post was very inspiring.
Not to mention that it has been 3 years for you!!
Niiiiice.
P.S. I think it was the dex that helped you conquer the Beast!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Biking with multiple myeloma
Suzierose and Kevin,
In answer to your question about my treatment. I was originally diagnosed as stage 2. I was diagnosed as a result of a standard physical where they did a 24 hour urine sample by my primary health provider. She picked up an unusaual protein and sent me to an oncologist. From there I had a bone scan, bone marrow biopsey, light chain test etc. You know the routine.
I also noticed, that in my biking I had less energy, especially the day after I did a medium long ride of say 40 miles or so. I could go out on say Saturday and keep up with my biking buddies but could not on Sunday rides. It turned out I was amemic although not dramaticlly so.
As I said my initial protocal was VRD and Aredia. 40 mg dex, Intravenous Velcade every week and 10 mg of Revlimid (on 21 days off 7). I also received Aredia every cycle (roughly a month).
My current protocol is still VRD and Aredia. I take 20 mg of dex every 2 weeks and get a subQ shot of Velcade every 2 weeks. I am still on the Revlimid at the same 10 mg and same timing (on 21 off 7). The Aredia is now once every 16 weeks.
I have read about the concerns of taking long term Revlimid and being on the steroids. However, I also note that people that get SCT are now on long term maintenance consisting of Revlimid and dex. So not really much different. I would bet Velcade will be added to that maintenance mix as well.
My oncologist is not a big believer in SCT and is more convinced than ever now that SCT patients are on long term maintenance. Basically, he believes that SCT is taking more risk and if you respond well to combination therapy achieving a CR, there is no need for interjecting such risk. It is working for me. I did not miss work and, as you can see, I was riding in a pretty tough rally within 30 days of beginning my treatments.
With respect to exercise, you need to do some resistance exercise other than biking. I do some weight training and a lot of push ups and core building exercises. Biking offers little bone resistance and professional riders (extreme riding) have low bone density and low calcium counts. So keep that in mind.
Resistance training helps build bone mass and will offset any negative effects of cycling. Moderate cycling should not have that effect. But with multiple myeloma, we want to build bone mass, so do the resistance work. Biking It is a great way of building cardio and red blood cells without the pounding and joint strain of running .., plus it is fun. I joined a local bike club made up primarily of people 45 and older. We have a couple over 70 and plenty in their late 50s to mid 60s.
In answer to your question about my treatment. I was originally diagnosed as stage 2. I was diagnosed as a result of a standard physical where they did a 24 hour urine sample by my primary health provider. She picked up an unusaual protein and sent me to an oncologist. From there I had a bone scan, bone marrow biopsey, light chain test etc. You know the routine.
I also noticed, that in my biking I had less energy, especially the day after I did a medium long ride of say 40 miles or so. I could go out on say Saturday and keep up with my biking buddies but could not on Sunday rides. It turned out I was amemic although not dramaticlly so.
As I said my initial protocal was VRD and Aredia. 40 mg dex, Intravenous Velcade every week and 10 mg of Revlimid (on 21 days off 7). I also received Aredia every cycle (roughly a month).
My current protocol is still VRD and Aredia. I take 20 mg of dex every 2 weeks and get a subQ shot of Velcade every 2 weeks. I am still on the Revlimid at the same 10 mg and same timing (on 21 off 7). The Aredia is now once every 16 weeks.
I have read about the concerns of taking long term Revlimid and being on the steroids. However, I also note that people that get SCT are now on long term maintenance consisting of Revlimid and dex. So not really much different. I would bet Velcade will be added to that maintenance mix as well.
My oncologist is not a big believer in SCT and is more convinced than ever now that SCT patients are on long term maintenance. Basically, he believes that SCT is taking more risk and if you respond well to combination therapy achieving a CR, there is no need for interjecting such risk. It is working for me. I did not miss work and, as you can see, I was riding in a pretty tough rally within 30 days of beginning my treatments.
With respect to exercise, you need to do some resistance exercise other than biking. I do some weight training and a lot of push ups and core building exercises. Biking offers little bone resistance and professional riders (extreme riding) have low bone density and low calcium counts. So keep that in mind.
Resistance training helps build bone mass and will offset any negative effects of cycling. Moderate cycling should not have that effect. But with multiple myeloma, we want to build bone mass, so do the resistance work. Biking It is a great way of building cardio and red blood cells without the pounding and joint strain of running .., plus it is fun. I joined a local bike club made up primarily of people 45 and older. We have a couple over 70 and plenty in their late 50s to mid 60s.
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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 the response.
I believe what your oncologist does about SCT regarding maintenance and risks.
When you reached CR did you take a break between your initial VRD protocol and the longer interval treatment you take now?
You write:
"I take 20 mg of dex every 2 weeks and get a subQ shot of Velcade every 2 weeks."
OK, so you get VD every 14 days and you get Revlimid every 21 days.
I may not be understanding you, as every 2 weeks VD sounds more frequent than every 3 weeks. i.e. shorter vs longer interval
I also think it is good thing to lengthen the Aredia dosing every 4 months vs every 3 months. Has your doc ever suggested taking a year off for the Aredia, or have you been on it for 3 years.
Just curious.
Sometimes though, it is best not to tinker with success,
That is something about the 70 year olds in your club. Would you join a club as a beginner?
Thanks for the feedback on strength training. Guess I have to do more than cycle ... darn!
Thanks for the response.
I believe what your oncologist does about SCT regarding maintenance and risks.
When you reached CR did you take a break between your initial VRD protocol and the longer interval treatment you take now?
You write:
"I take 20 mg of dex every 2 weeks and get a subQ shot of Velcade every 2 weeks."
OK, so you get VD every 14 days and you get Revlimid every 21 days.
I may not be understanding you, as every 2 weeks VD sounds more frequent than every 3 weeks. i.e. shorter vs longer interval
I also think it is good thing to lengthen the Aredia dosing every 4 months vs every 3 months. Has your doc ever suggested taking a year off for the Aredia, or have you been on it for 3 years.
Just curious.
Sometimes though, it is best not to tinker with success,
That is something about the 70 year olds in your club. Would you join a club as a beginner?
Thanks for the feedback on strength training. Guess I have to do more than cycle ... darn!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Biking with multiple myeloma
Hi Kevin!!
Congrats on your CR!!!
I hit mine after the 5th cycle ... when did yours happen?
I think an oral proteosome inhibitor would be a better maintenance agent, just wish the FDA would hurry up and approve one and approve carfilzomib.
Do you have a link so we can see a 29er?
Congrats on your CR!!!
I hit mine after the 5th cycle ... when did yours happen?
I think an oral proteosome inhibitor would be a better maintenance agent, just wish the FDA would hurry up and approve one and approve carfilzomib.
Do you have a link so we can see a 29er?
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Biking with multiple myeloma
SuzieRose,
My initial therapy for Velcade and dex were 40 mg of dex every week and a Velcade infusion every week. I took them normally on Thursdays. I took Revlimid every day for 21 days then was off for 7 days.
I have never been off of VRD. I reached a CR within 4 months of the initial treatment - July 2009.
I gradually worked into the current protocol. Velcade and dex is every other week (once every 2 weeks instead of once a week) The dex was also dropped to 20 mg and the Velcade is now subq instead of infusion. My Revlimid is still the same 10 mg a day for 21 straight days, then 7 days rest to complete a cycle. I asked about having that reduced to 5 mg but my oncologist was hesitant.
I have no real side effects except for the dex. I have read your posts on dex and I have had similar, but not quite as severe, reactions. I had a treatment yesterday taking my 20 mg of dex at about 3:30 pm. I slept for about 3 hours last night and was sending out e mails for work at 4:00 a.m. and just lay in bed after that with my mind racing 150 mph.
I get hiccups occasionally, flush in the face, elevated HR and temporary increase in blood pressure. I am more moody and crash somewhat after about 24 hours. For example, I am running out of gas right about now. However, I expect to be up on my bike for a 50 mile ride tomorrow starting at 7:30 am.
I hope that clarifies things.
Ron
My initial therapy for Velcade and dex were 40 mg of dex every week and a Velcade infusion every week. I took them normally on Thursdays. I took Revlimid every day for 21 days then was off for 7 days.
I have never been off of VRD. I reached a CR within 4 months of the initial treatment - July 2009.
I gradually worked into the current protocol. Velcade and dex is every other week (once every 2 weeks instead of once a week) The dex was also dropped to 20 mg and the Velcade is now subq instead of infusion. My Revlimid is still the same 10 mg a day for 21 straight days, then 7 days rest to complete a cycle. I asked about having that reduced to 5 mg but my oncologist was hesitant.
I have no real side effects except for the dex. I have read your posts on dex and I have had similar, but not quite as severe, reactions. I had a treatment yesterday taking my 20 mg of dex at about 3:30 pm. I slept for about 3 hours last night and was sending out e mails for work at 4:00 a.m. and just lay in bed after that with my mind racing 150 mph.
I get hiccups occasionally, flush in the face, elevated HR and temporary increase in blood pressure. I am more moody and crash somewhat after about 24 hours. For example, I am running out of gas right about now. However, I expect to be up on my bike for a 50 mile ride tomorrow starting at 7:30 am.
I hope that clarifies things.
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