I had set a goal this past year to complete 10,000 km (6,214 miles). I accomplished that goal on December 30 and finished with 6,249 miles (10,072 km). That is the most miles I have ever ridden in a single year. It was especially gratifying given my relapse and being on a full Velcade, Revlimid, and dexamethasone (VRD) protocol. The protocol limits me to riding 4 days a week as the dex et al impact me and I need recovery time.
Some of my other goals that I set this past year were to do a four-day mini tour, try and break 6 hours in the Hotter'n Hell Hundred (HHH) and do at least one ultra race. I accomplished all of those goals. The weather was cooperative in the HHH; otherwise, I would have not met that goal. Hey, take it when things favor you!
I will have to put some thought into goals for 2020 and will post them later.
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
Happy New Year's 2020, Ron. Congratulations on meeting your goals for biking in 2019! Thanks for posting and providing encouragement too!
I keep track of my walking using a fitness tracker. My goal for 2019 was to reach 2100 km (1250 miles), but actually I was about 200 km less than 2018, arriving at 1775 km (1065 miles)! That was still about 150 km (90 miles) a month, or 5 km (3 miles) a day.
The fitness tracker just counts steps indoors and outdoors, and at this time of year, more of it is indoors. I walked a lot at our cancer center and in shopping malls! Yesterday I went out for a walk in the mild weather (0 C, 32 F) and slipped and fell on the ice! So now I have a set of "Yaktrax" on one pair of winter boots, but can see more indoor walking coming up too.
I hope to get back to the gym also in 2020.
My lowest months, that pulled down my goals, were in February, November and December. These were both weather- and treatment-related, actually!
I keep track of my walking using a fitness tracker. My goal for 2019 was to reach 2100 km (1250 miles), but actually I was about 200 km less than 2018, arriving at 1775 km (1065 miles)! That was still about 150 km (90 miles) a month, or 5 km (3 miles) a day.
The fitness tracker just counts steps indoors and outdoors, and at this time of year, more of it is indoors. I walked a lot at our cancer center and in shopping malls! Yesterday I went out for a walk in the mild weather (0 C, 32 F) and slipped and fell on the ice! So now I have a set of "Yaktrax" on one pair of winter boots, but can see more indoor walking coming up too.
I hope to get back to the gym also in 2020.
My lowest months, that pulled down my goals, were in February, November and December. These were both weather- and treatment-related, actually!
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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
Great job Nancy!
I have an indoor trainer I use. I bought a smart trainer. What that means is that the trainer changes the resistance through a Bluetooth connection. It syncs to the cycling program you subscribe to. There are a number of them that you can get. Generally they put you on a course and as the terrain changes the peddling resistance changes with it.
I did not count indoor miles.
I have an indoor trainer I use. I bought a smart trainer. What that means is that the trainer changes the resistance through a Bluetooth connection. It syncs to the cycling program you subscribe to. There are a number of them that you can get. Generally they put you on a course and as the terrain changes the peddling resistance changes with it.
I did not count indoor miles.
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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
Happy New Year, Ron!
Frankly, I don't know how you do it, all the biking and exercise with 3 days a week lost due to your myeloma treatment.
I started my Darzalex, Velcade, and dexamethasone regimen in the middle of September and I am finding it difficult to get even a couple of days of long walks every week or manage any meaningful exercises.
I have just completed the more intensive part of this regimen, which started with 7 weekly Infusions with the Velcade and dex. It seemed tolerable at first, but the fatigue got progressively worse. The plan is to drop the supplemental Velcade and dex in about a month and go on the once-every-four-weeks Darzalex Infusion for maintenance. All my oncologist told me was that none of this is "terrible or worrisome" and that I have had a lot of treatment and now this new regimen. He told me about the impact of age and why he cannot recommend activities like skiing. I just don't feel my age on the "normal" days!
I cannot complain, however, because I responded extremely well to this treatment and my kappa and kappa-lambda ratio came down to normal levels after the first 4 or 5 Infusions.
I am drafting a comparison of this experience with the Revlimid, Velcade, and dexamethasone (RVD) therapy I started with, five years ago. I am working on making it concise. The main difference is that I wasn't losing 5 days a week to the then side effects and managed a fair number of golf rounds.
Hope to bounce back and start playing golf and maybe try to catch up with our grandsons on the gentle ski slopes. At this point I cannot even think of any better goals, other than 50 rounds of golf per year for the Roaring 20's!
Thank you for the encouragement,
K_Shash
Frankly, I don't know how you do it, all the biking and exercise with 3 days a week lost due to your myeloma treatment.
I started my Darzalex, Velcade, and dexamethasone regimen in the middle of September and I am finding it difficult to get even a couple of days of long walks every week or manage any meaningful exercises.
I have just completed the more intensive part of this regimen, which started with 7 weekly Infusions with the Velcade and dex. It seemed tolerable at first, but the fatigue got progressively worse. The plan is to drop the supplemental Velcade and dex in about a month and go on the once-every-four-weeks Darzalex Infusion for maintenance. All my oncologist told me was that none of this is "terrible or worrisome" and that I have had a lot of treatment and now this new regimen. He told me about the impact of age and why he cannot recommend activities like skiing. I just don't feel my age on the "normal" days!
I cannot complain, however, because I responded extremely well to this treatment and my kappa and kappa-lambda ratio came down to normal levels after the first 4 or 5 Infusions.
I am drafting a comparison of this experience with the Revlimid, Velcade, and dexamethasone (RVD) therapy I started with, five years ago. I am working on making it concise. The main difference is that I wasn't losing 5 days a week to the then side effects and managed a fair number of golf rounds.
Hope to bounce back and start playing golf and maybe try to catch up with our grandsons on the gentle ski slopes. At this point I cannot even think of any better goals, other than 50 rounds of golf per year for the Roaring 20's!
Thank you for the encouragement,
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Biking with multiple myeloma
K_Shash,
I am responding from an infusion chair as I get my IVIG infusion and a shot of Velcade. Hope to ride on Saturday, but am fighting a sinus infection.
It sounds like you were handling the Revlimid, Velcade, and dexamethasone when you were initially diagnosed. The difference seems to be the Darzalex. Not sure of course as that infusion is less often. The drug that impacts me the most is dex. I need a full 48 hours to recover from it. So I work around it.
We all react differently. For example, I have been fortunate to avoid peripheral neuropathy that many patients get with regimens that include Velcade. Darzalex is likely in my future and I will see how it goes.
I am responding from an infusion chair as I get my IVIG infusion and a shot of Velcade. Hope to ride on Saturday, but am fighting a sinus infection.
It sounds like you were handling the Revlimid, Velcade, and dexamethasone when you were initially diagnosed. The difference seems to be the Darzalex. Not sure of course as that infusion is less often. The drug that impacts me the most is dex. I need a full 48 hours to recover from it. So I work around it.
We all react differently. For example, I have been fortunate to avoid peripheral neuropathy that many patients get with regimens that include Velcade. Darzalex is likely in my future and I will see how it goes.
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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
Ah, my all time favorite thread is back! It has provided me with motivation and encouragement since I first ran across it in 2013.
I don't set specific numerical goals but just look to do as much as I can. I had three years, 2015-2017, when I eclipsed 10,000 outdoor miles. 2018 was "only" 5,600 (9,000 km) due to an injury at the beginning of the year. In 2019 I was fortunate to stay healthy until mid-October when a shoulder issue took me off the bike for about five weeks and a slow ramp up followed. Still, I was able to log 9,300 miles for the year. So all-in-all a reasonably successful year.
But the thing to keep in mind is that it's not the numbers that are important but just what whatever you can to stay active.
I don't set specific numerical goals but just look to do as much as I can. I had three years, 2015-2017, when I eclipsed 10,000 outdoor miles. 2018 was "only" 5,600 (9,000 km) due to an injury at the beginning of the year. In 2019 I was fortunate to stay healthy until mid-October when a shoulder issue took me off the bike for about five weeks and a slow ramp up followed. Still, I was able to log 9,300 miles for the year. So all-in-all a reasonably successful year.
But the thing to keep in mind is that it's not the numbers that are important but just what whatever you can to stay active.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Hope you get over the infection and are able to ride on Saturday, Ron. Yes, I have tried hard to manage the dex and mostly succeeded. My oncologist agreed and I am only taking 16 mg dex on the day of the Velcade shot. And I don't take any dex on the off week when I am off all medications.
Case in point about dex: I had no problem with the peripheral neuropathy, either, except last week. I had my Velcade shot and dex on Tuesday morning, on December 24th. I felt normal on Wednesday, but I was totally exhausted on Thursday. I had rather low energy on Friday and managed a fairly long walk on Saturday. Sunday morning, on the 29th, I had a sudden and noticeable tingling in my fingers like never before. It was followed by a heaviness in my head and a funny sensation in my upper body and a little breathlessness, too. My blood pressure was noticeably high. All those symptoms disappeared in about 45 minutes. I felt quite normal for the rest of Sunday and had no problem keeping up with our grandsons at a family party.
I shared the unusual (for me) symptoms with my oncologist on Monday. He advised me that my symptoms were not terrible or worrisome. However, I wasn't convinced that there wasn't something very unusual.
I finally figured out that I had repeated my last dex with the Velcade shot only 5 days after the previous one due to the holiday schedule and I am convinced that the first dex and Velcade hadn't worn off completely on the 5th day when I got the next Velcade and dex. One of them, likely the dex, caused a reaction as if I had a much stronger dose of this additional medication. I think the dex half life is about 72 hours and that and the Velcade must have not fully worn off on the 5th day. Anyway, my blood pressure is back to normal now, even after I went back to the original dose of the related prescription (my PCP had agreed that I need the higher dose after verifying that my weekly BP readings have been going up steadily during this Darzalex, Velcade, and dex therapy).
I am enjoying my off week and I have my Darzalex infusion on the 9th, with the Velcade and dex, for the last time. I'll have two more weeks of Velcade with dex before settling into a "once every 4 weeks" Darzalex infusion regimen, without any other drugs.
Hope you can ride on Sunday! Of course you have to get over the infection. I am sure I am not the only one who is encouraged to exercise and stay active after reading your posts.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Biking with multiple myeloma
K_Shash
I hope your infusion did not wipe you out. Good news is the worst is over and soon you will be on a much lighter protocol. That will likely allow you to become much more active. Hope everything goes well.
Andrew,
The amount of miles you did this past year was amazing. You always inspire me. Perhaps when I retire I can step it up. The daylight this time of year limits me as I don't get home usually before 6. After my broken neck, I promised my wife I would not ride in the dark or when it rains. So this time of year outdoor riding is limited primarily to weekends with non-rainy weather. The exception is Wednesday when I have a treatment and am out of the oncologist office by 4:00 p.m. I do hit my indoor trainer and the smart trainer I purchased makes indoor riding much more realistic and enjoyable. You can even do group rides on it with the program I use.
I hope your infusion did not wipe you out. Good news is the worst is over and soon you will be on a much lighter protocol. That will likely allow you to become much more active. Hope everything goes well.
Andrew,
The amount of miles you did this past year was amazing. You always inspire me. Perhaps when I retire I can step it up. The daylight this time of year limits me as I don't get home usually before 6. After my broken neck, I promised my wife I would not ride in the dark or when it rains. So this time of year outdoor riding is limited primarily to weekends with non-rainy weather. The exception is Wednesday when I have a treatment and am out of the oncologist office by 4:00 p.m. I do hit my indoor trainer and the smart trainer I purchased makes indoor riding much more realistic and enjoyable. You can even do group rides on it with the program I use.
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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,
I just purchased a smart trainer and will start using it as soon as I recover from a broken collar bone (multiple myeloma-related).
I relapsed last year and had two ribs and the collar bone break before it was recognized. All this put a crimp in my riding, I was hoping to get 2,000 miles in last year, but the breaks started in August when I was in the biggest mileage of the season.
Now I am on the Kyprolis, Pomalyst, and dexamethasone wagon, two transfusions per week and Pomalyst daily in a 4 week cycle (3 weeks on and 1 week off). This regimen gives me a stronger chemo brain reaction, so I am transitioning my riding more toward riding indoors, with my outdoor riding occurring when the chemo brain is less.
I just purchased a smart trainer and will start using it as soon as I recover from a broken collar bone (multiple myeloma-related).
I relapsed last year and had two ribs and the collar bone break before it was recognized. All this put a crimp in my riding, I was hoping to get 2,000 miles in last year, but the breaks started in August when I was in the biggest mileage of the season.
Now I am on the Kyprolis, Pomalyst, and dexamethasone wagon, two transfusions per week and Pomalyst daily in a 4 week cycle (3 weeks on and 1 week off). This regimen gives me a stronger chemo brain reaction, so I am transitioning my riding more toward riding indoors, with my outdoor riding occurring when the chemo brain is less.
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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
Thanks Ron. Getting in the miles while I can. I am scheduled for hand surgery on February 5 and it will be a long recovery so no mileage records this year.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60