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Re: Biking with multiple myeloma
Thanks for sharing photos and stories of your cycling trip with us Ron. Looks pretty hot and grueling. I am envious and can't wait until I am strong enough to be able to push the limits again on similar adventures. Knowing how you continue to enjoy your life while battling multiple myeloma is a real beacon for me. Keep the rubber on the pavement or you will end up in the old spokes home. Haha.
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Colin - Name: Colin Rice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Here is a inspirational story of a young elite athlete competing at the highest level while battling a bad cancer diagnosis. It is the story of Gabriele Grunewald. Her cancer has no cure and has limited treatment options.
"Cancer can stop you from doing a lot of things. I'm well aware of that. But I'm more interested in what cancer can't stop me from doing. Here's to finding out."
For us that are fighting multiple myeloma, we can certainly find parallels.
On the ride in the Davis Mountains I recently reported, I scheduled it on the weekend of my one week treatment holiday. Since I have had an indolent relapse, I started treatment with 5 mg of Revlimid (on 21 days off 7), weekly shots of Velcade (on 3 weeks, off 1) and weekly oral dex of 20 mg on the same days as my Velcade shots. In addition, I get monthly infusions of IVIG. So this past week I was off everything and at my strongest.
Gabriele has tried to do the same, working as best she can around her treatments. The odds are stacked against her and all of us with multiple myeloma can relate, but like her, we can push on and see what we can do.
"Chemotherapy, Then the U.S. Championships, for Gabriele Grunewald," The New York Times, June 19, 2017 (link to full text of article)
Keep the rubber side down!
"Cancer can stop you from doing a lot of things. I'm well aware of that. But I'm more interested in what cancer can't stop me from doing. Here's to finding out."
For us that are fighting multiple myeloma, we can certainly find parallels.
On the ride in the Davis Mountains I recently reported, I scheduled it on the weekend of my one week treatment holiday. Since I have had an indolent relapse, I started treatment with 5 mg of Revlimid (on 21 days off 7), weekly shots of Velcade (on 3 weeks, off 1) and weekly oral dex of 20 mg on the same days as my Velcade shots. In addition, I get monthly infusions of IVIG. So this past week I was off everything and at my strongest.
Gabriele has tried to do the same, working as best she can around her treatments. The odds are stacked against her and all of us with multiple myeloma can relate, but like her, we can push on and see what we can do.
"Chemotherapy, Then the U.S. Championships, for Gabriele Grunewald," The New York Times, June 19, 2017 (link to full text of article)
Keep the rubber side down!
Last edited by Ron Harvot on Thu Jun 22, 2017 1:16 pm, edited 1 time in total.
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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
Last fall Andrew Gordon and his son Jack came to Dallas for the Eagles-Cowboys game. My son Tony and I took them out to the Deep Elum section of Dallas for food and drinks. Andrew and I share a passion for cycling. In addition, of course, we are both multiple myeloma survivors and patients.
During his visit, we discussed our cycling passion, and I told him about the Hotter N Hell 100 (HHH). He said he would like to do it and would set that as a goal for 2017. I kind of forgot about it, then suffered my accident on Christmas Eve. I broke my neck and had disc fusion surgery of C-1 through C-4. I discussed cycling with my surgeon. He told me that my neck, with the fusion surgery, was as strong as it was before the accident, I did not have to worry that a fall would lead to serious injury. However, he cautioned that due to my limited range of motion, I was more susceptible to having an accident than before. I have lost 50% of my right-left range of motion. Riding in large rallies puts me at higher risk, as I would be riding with strangers whose biking behavior was not predictable. They could suddenly cut in my line of travel and my ability to see them and react would be impaired. Thus I thought it would be unlikely that I would try a mass rally like the HHH, where there are 10,000 cyclists participating.
I kept in touch with Andrew and told him I was back on my bike and gradually building up the neck strength to do longer rides. He expressed again his interest in doing the HHH, and so I decided to overcome my fears of a fall and get back to group riding. At first I road only with my club members, whose biking habits I was familiar with. In early July I signed up for 2 local rallies and was able to do them without any mishaps. That gave me the confidence to give the HHH a try. As this forum thread is all about goal setting and doing your best to meet those goals, I want to thank Andrew for giving me the motivation to set the HHH as goal and meet it.
The day turned out to be perfect for riding. It was reasonably cool with highs only in the low 80s F (high 20s C) and a mild breeze out of the north east. Generally in North Texas in late August, you have temps near 100 degrees F (38 C) with a dry brisk wind out of the south. You combine those temps with chip seal roads and lack of any tree cover, and it becomes not only a physical test but also one of will.
The course is not remarkable as it is flat and relatively featureless. We were able to do the route at an average pace of 18.2 mph (29.3 km/h) and an on bike time of 5:35 for the 102 miles (164 km). There were 3 of us that stayed together as a club member, Corwin, joined and took on a lot of the pulling duty. That pace is quick for any age especially a couple of mid-60s cyclists with cancer!
The day was not completely perfect though, as we almost didn’t get started. It was around 6:15 a.m. and I had made arrangements to meet my club members at 6:30 at a rendezvous location. The rally started at 7:00. As I pulled onto the road that leads to the lot I normally park, the entrance was blocked by a freight train that was stopped on the tracks. We tried to drive around and come in from another road but got caught up in the rally detours. We had to just find a place to park and ended up in a part of town I was unfamiliar with in the dark. I was frustrated, but Andrew kept his cool and took note of a business "Wi-Chi Cycle Cross" that was across the street from the lot we parked in. When we finished, he was able to locate it on his cell phone and use GPS maps to direct us to it. Otherwise, we might have spent hours looking for our cars after the long ride.
Here are before and after pictures of Andrew and I at the HHH.
During his visit, we discussed our cycling passion, and I told him about the Hotter N Hell 100 (HHH). He said he would like to do it and would set that as a goal for 2017. I kind of forgot about it, then suffered my accident on Christmas Eve. I broke my neck and had disc fusion surgery of C-1 through C-4. I discussed cycling with my surgeon. He told me that my neck, with the fusion surgery, was as strong as it was before the accident, I did not have to worry that a fall would lead to serious injury. However, he cautioned that due to my limited range of motion, I was more susceptible to having an accident than before. I have lost 50% of my right-left range of motion. Riding in large rallies puts me at higher risk, as I would be riding with strangers whose biking behavior was not predictable. They could suddenly cut in my line of travel and my ability to see them and react would be impaired. Thus I thought it would be unlikely that I would try a mass rally like the HHH, where there are 10,000 cyclists participating.
I kept in touch with Andrew and told him I was back on my bike and gradually building up the neck strength to do longer rides. He expressed again his interest in doing the HHH, and so I decided to overcome my fears of a fall and get back to group riding. At first I road only with my club members, whose biking habits I was familiar with. In early July I signed up for 2 local rallies and was able to do them without any mishaps. That gave me the confidence to give the HHH a try. As this forum thread is all about goal setting and doing your best to meet those goals, I want to thank Andrew for giving me the motivation to set the HHH as goal and meet it.
The day turned out to be perfect for riding. It was reasonably cool with highs only in the low 80s F (high 20s C) and a mild breeze out of the north east. Generally in North Texas in late August, you have temps near 100 degrees F (38 C) with a dry brisk wind out of the south. You combine those temps with chip seal roads and lack of any tree cover, and it becomes not only a physical test but also one of will.
The course is not remarkable as it is flat and relatively featureless. We were able to do the route at an average pace of 18.2 mph (29.3 km/h) and an on bike time of 5:35 for the 102 miles (164 km). There were 3 of us that stayed together as a club member, Corwin, joined and took on a lot of the pulling duty. That pace is quick for any age especially a couple of mid-60s cyclists with cancer!
The day was not completely perfect though, as we almost didn’t get started. It was around 6:15 a.m. and I had made arrangements to meet my club members at 6:30 at a rendezvous location. The rally started at 7:00. As I pulled onto the road that leads to the lot I normally park, the entrance was blocked by a freight train that was stopped on the tracks. We tried to drive around and come in from another road but got caught up in the rally detours. We had to just find a place to park and ended up in a part of town I was unfamiliar with in the dark. I was frustrated, but Andrew kept his cool and took note of a business "Wi-Chi Cycle Cross" that was across the street from the lot we parked in. When we finished, he was able to locate it on his cell phone and use GPS maps to direct us to it. Otherwise, we might have spent hours looking for our cars after the long ride.
Here are before and after pictures of Andrew and I at the HHH.
- IMG_0828 HHH.JPG (136.42 KiB) Viewed 1046 times
- IMG_0832 HHH2.JPG (173.16 KiB) Viewed 1046 times
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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, Ron, for more sharing on your biking forum thread! How nice to see that you and fellow columnist Andrew Gordon were able to do this long distance cycling event together! Good that you used the GPS on a cell phone to relocate your vehicle after the race too. I think that modern day cell phones have good features, which weren't even available a few years ago!
So sorry to hear about the catastrophic flooding and storm in the Houston area. We have been seeing that on the news. Hope you are not directly affected where you are, but of course it is an emergency for your area. Take good care of yourselves, you and your family.
So sorry to hear about the catastrophic flooding and storm in the Houston area. We have been seeing that on the news. Hope you are not directly affected where you are, but of course it is an emergency for your area. Take good care of yourselves, you and your family.
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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
Wow, congratulations Ron and Andrew. You guys are setting a tremendous example for us all. I really enjoyed reading your account of the race and seeing that look of accomplishment on your faces. Great that you and your sons could get together. Look forward to reading of your future endeavors.
As for me, I have been biking about 3-4 days a week for the past month and a half and am currently at Day +73 post autologous stem cell transplant. I feel stronger each time out and am up to about 20 miles (32 km) for distance. Also I managed a couple of 5 mile (8 km) runs this past week. I'll keep at it and am sure I'll be stronger next year.
As for me, I have been biking about 3-4 days a week for the past month and a half and am currently at Day +73 post autologous stem cell transplant. I feel stronger each time out and am up to about 20 miles (32 km) for distance. Also I managed a couple of 5 mile (8 km) runs this past week. I'll keep at it and am sure I'll be stronger next year.
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Colin - Name: Colin Rice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Ron, thanks for the kind words. I had a great time. This thread has been inspirational to me and many others ever since you started it many years ago. We all appreciate your many posts. Keep up the work!
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Ron and Andrew,
That is an impressive average miles per hour and it shows on the bike time. Sure looks like a lot of fun. I would like to try a flat century some day. I sure hope that all of you are getting through the flooding there. I watch the Weather Channel a lot to see how things are going for all you folks. Lots of donation centers here where I live that are making care packages.
Colin,
Sounds like your doing well and getting in some riding time. That's great. I am Day +78 post transplant. Been riding since the second week of August. Mostly around 20 miles (32 km) every other day. With a few MB rides thrown in.
There's an annual ride near me that's on October 14th. They have 3 ride choices. 100, 85, and metric. Both 100 and 85 have serious climbs. So that's out for now. But I have done the metric before and I signed up for the ride months ago, so I will have to see how I progress as the ride gets closer.
George
That is an impressive average miles per hour and it shows on the bike time. Sure looks like a lot of fun. I would like to try a flat century some day. I sure hope that all of you are getting through the flooding there. I watch the Weather Channel a lot to see how things are going for all you folks. Lots of donation centers here where I live that are making care packages.
Colin,
Sounds like your doing well and getting in some riding time. That's great. I am Day +78 post transplant. Been riding since the second week of August. Mostly around 20 miles (32 km) every other day. With a few MB rides thrown in.
There's an annual ride near me that's on October 14th. They have 3 ride choices. 100, 85, and metric. Both 100 and 85 have serious climbs. So that's out for now. But I have done the metric before and I signed up for the ride months ago, so I will have to see how I progress as the ride gets closer.
George
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Biking with multiple myeloma
Good luck George,
Let us know how you do! I got involved in ultra cycling the last few years. After my accident, I have not been able to participate in the earlier races, but have signed up for the Texas Time Trials on September 23 in Glen Rose, Texas. I have done this several times as part of a team and will do so again this year.
My teammate and I have signed up for the 12-hour time trial. It is on a 26.5 mile (43 km) course that is fairly hilly. My teammate is 12 years younger than me and faster. He will go first and will hope to complete 4 laps with me doing 3. We are going up against the same team that we lost to last year on a technicality We physically beat them but violated a technical rule and therefore had to forfeit. Our fault for not knowing the rules, and they called us out on it. I am not as fast as I was a year ago due to my accident but will give it my best shot and see what happens. I will report back with the results.
With respect to Hurricane Harvey. I live in North Texas in a suburb of Dallas. The storm never affected us. We didn't get any rain at all, as it stayed south and east of us. I have friends and co-workers in the Houston area and some of them got flooded. It was and will continue to be catastrophic for many people who live along the gulf coast. It will take years to recover. All our prayers go out to them.
Let us know how you do! I got involved in ultra cycling the last few years. After my accident, I have not been able to participate in the earlier races, but have signed up for the Texas Time Trials on September 23 in Glen Rose, Texas. I have done this several times as part of a team and will do so again this year.
My teammate and I have signed up for the 12-hour time trial. It is on a 26.5 mile (43 km) course that is fairly hilly. My teammate is 12 years younger than me and faster. He will go first and will hope to complete 4 laps with me doing 3. We are going up against the same team that we lost to last year on a technicality We physically beat them but violated a technical rule and therefore had to forfeit. Our fault for not knowing the rules, and they called us out on it. I am not as fast as I was a year ago due to my accident but will give it my best shot and see what happens. I will report back with the results.
With respect to Hurricane Harvey. I live in North Texas in a suburb of Dallas. The storm never affected us. We didn't get any rain at all, as it stayed south and east of us. I have friends and co-workers in the Houston area and some of them got flooded. It was and will continue to be catastrophic for many people who live along the gulf coast. It will take years to recover. All our prayers go out to them.
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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 competed in the 12 hour two man team category at the Texas Time Trials this past Saturday. The race was on a hilly (1,200 ft of climb) 26.5 mile course. My teammate, also named Ron and I completed 6 laps or 159 miles in 9 hours and 35 min, each of us doing 3 laps or 79.5 miles. Ron and I were way behind the competition who brought in a former CAT 1 racer as a substitute for one of their normal riders, who was sick. They built up a 45 minute lead on us after 6 laps. After I finished my 3rd lap, Ron and I discussed him doing another lap. He had plenty of time and could have done it but given how far back we were, we opted to call it a day. The weather was a big factor in that decision as by midafternoon the temp was in the mid-90s F, with high humidity and a 15 mph wind out of the SE. We both suffered on our respective 3rd laps, experiencing some cramping, and doing another lap was not going to improve our position.
On a personal level, I had set a goal to do 3 laps in at least as good a time as I did last year, before I broke my neck and had officially relapsed with Multiple Myeloma. I met my goal turning in my 3 laps in 5 hours and 10 min for an avg. speed of 15.4 mph. That was about the same as I did the year before. Last Weds. I had a Velcade injection, 5 mg of Revlimid and took 4 mg of Dex. (I cut the dex back for the race, I normally would have had at 20 mg). The year before I did not have a treatment the week of the race, so doing about the same time this year was gratifying.
I did not start outdoor cycling this year until mid-March, due to my accident, so I have fewer overall miles than a year ago, when I completed over 6,100. This year I am targeting 5,000 and have about 3,500 so far.
On a personal level, I had set a goal to do 3 laps in at least as good a time as I did last year, before I broke my neck and had officially relapsed with Multiple Myeloma. I met my goal turning in my 3 laps in 5 hours and 10 min for an avg. speed of 15.4 mph. That was about the same as I did the year before. Last Weds. I had a Velcade injection, 5 mg of Revlimid and took 4 mg of Dex. (I cut the dex back for the race, I normally would have had at 20 mg). The year before I did not have a treatment the week of the race, so doing about the same time this year was gratifying.
I did not start outdoor cycling this year until mid-March, due to my accident, so I have fewer overall miles than a year ago, when I completed over 6,100. This year I am targeting 5,000 and have about 3,500 so far.
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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
This thread has been an inspiration for me and I would like to thank everyone posting. I have been an avid cyclist for about 5 years and started having hip pain last August after an especially hilly ride. As you may guess, the hip pain turned into a multiple myeloma diagnosis in December. I started treatment on December 31.
I have been very blessed to now be in complete remission and back on the bike. Recently I was able to ride 51 miles in a race in 2:37, for a 19.5 mph average.
During the early days of my diagnosis and the most difficult times of treatment I could read this forum about your cycling adventures, and have hope for my own future cycling. Thanks for the encouragement.
I have been very blessed to now be in complete remission and back on the bike. Recently I was able to ride 51 miles in a race in 2:37, for a 19.5 mph average.
During the early days of my diagnosis and the most difficult times of treatment I could read this forum about your cycling adventures, and have hope for my own future cycling. Thanks for the encouragement.
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Anonymous