P.S. - Your wife is probably right, but I completely understand your drive to continue doing the things you hold dear in this life.
Forums
Re: Biking with multiple myeloma
Great to hear of your progress Ron. Clever management of changes in range of motion on your part as relates to the mirror and handle bar positions and your personal safety. I wish you have a very successful biking season. Sounds like a great group of friends to ride with. Look forward to hearing about your rides.
P.S. - Your wife is probably right, but I completely understand your drive to continue doing the things you hold dear in this life.
P.S. - Your wife is probably right, but I completely understand your drive to continue doing the things you hold dear in this life.
-
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,
Happy news all around. Very happy for you. Only a determined (translation crazy) cyclist would understand. I get quite a few "you are insane" remarks from friends and family about my exploits but, as you say, it's what we love to do.
Be careful but not too timid and you will be fine.
Happy news all around. Very happy for you. Only a determined (translation crazy) cyclist would understand. I get quite a few "you are insane" remarks from friends and family about my exploits but, as you say, it's what we love to do.
Be careful but not too timid and you will be fine.
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Ron,
Just updating myself on your recovery. Glad to see that you started riding and have your mirror set up the way you want it. Nothing like getting out on the road. I am sure that really felt good to move from the trainer to the open road. The trainers are a good workout though.
I was really getting tired of those little mirrors that attach to sunglasses or your helmet. They seem to work but always need bending / adjusting. I found a bar end mirror that's actually a glass / mirror on Ebay. I believe they're made in Sweden. Once they're adjusted, that's it. Just glance down and a perfect view.
Like yourself, I have people tell me I am not thinking clearly riding a stupid bicycle knowing that I had several broken ribs when I was originally diagnosed. And I was asking for trouble. One even told me the bike would kill me before the myeloma.
We all have our one thing in life that we are passionate about. Just happens that its cycling for a lot of us. I enjoy my road bike and mountain bike. Century rides are so much fun.Training for them and the excitement of riding with hundreds of others is what I look forward to.
Keep Riding, Stay Strong Ron,
Castaway
Just updating myself on your recovery. Glad to see that you started riding and have your mirror set up the way you want it. Nothing like getting out on the road. I am sure that really felt good to move from the trainer to the open road. The trainers are a good workout though.
I was really getting tired of those little mirrors that attach to sunglasses or your helmet. They seem to work but always need bending / adjusting. I found a bar end mirror that's actually a glass / mirror on Ebay. I believe they're made in Sweden. Once they're adjusted, that's it. Just glance down and a perfect view.
Like yourself, I have people tell me I am not thinking clearly riding a stupid bicycle knowing that I had several broken ribs when I was originally diagnosed. And I was asking for trouble. One even told me the bike would kill me before the myeloma.
We all have our one thing in life that we are passionate about. Just happens that its cycling for a lot of us. I enjoy my road bike and mountain bike. Century rides are so much fun.Training for them and the excitement of riding with hundreds of others is what I look forward to.
Keep Riding, Stay Strong Ron,
Castaway
-
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
I had my first oncologist appointment since they changed my protocol after my indolent relapse.
The new protocol is working, although not as fast as I would like. My old protocol was a Velcade shot once every two weeks with 40 mg of dex (up from 8 mg a year ago) the same day as the Velcade. The new protocol is a Velcade shot once a week for 3 weeks, then off a week, accompanied by 20 mg of dex and 5 mg of Revlimid on 21 days off 7. In essence, I am in treatment for 3 weeks then get a week holiday.
After 3 months, the steady rise in my kappa serum free light chain (sFLC) level that has occurred over the last 1 1/2 years has reversed and has fallen a little over 30%. I was at 116.69 and am now at 80.85. The light chain ratio also improved about 30%, from 18.67 to 12.85. My M-spike is unchanged at 0.2 g/dL. We are staying the course another cycle and see if the improvement continues.
On the biking front I was given the green light by my neck surgeon to return to outdoor riding. I made the adjustments to my bike by raising the handlebars and adding bar end mirrors to compensate for my lack of lateral motion. After my initial ride I found that I needed to raise the handle bars a little more, so I installed a 30 degree Thompson stem that works good for me. My vertical neck range has improved as has my neck endurance.
I still have trouble going much past 2 1/2 hours and my longest ride has been 42 miles, but I have logged in 640 miles since the second week of March a little over 1 1/2 months. For the last few weeks I have done about 120 miles a week and will be over 500 miles for April when this month concludes on Sunday. I have yet to do any big rallies as I am still a bit anxious about riding in big groups due to my range of motion limits.
I am dusting off my plan for riding in the Davis Mountains, though, and plan on doing that in mid June. I am also heading to the UK on business at the end of next week but am hoping to get at least one day of riding in with a local friend up in the Leicester region north of London. Also, one of my goals is to do the Hotter n Hell 100 at the end of August and hope Andrew Gordon can come in from Pennsylvania and join me. Last but not least is getting in one Ultra Race in September, the Texas Time Trials, which I have done several times. The HHH and the Ultra race will really test my neck and biking endurance as these necessitate 6 plus hours of saddle time. My speed is down but my determination is up.
The new protocol is working, although not as fast as I would like. My old protocol was a Velcade shot once every two weeks with 40 mg of dex (up from 8 mg a year ago) the same day as the Velcade. The new protocol is a Velcade shot once a week for 3 weeks, then off a week, accompanied by 20 mg of dex and 5 mg of Revlimid on 21 days off 7. In essence, I am in treatment for 3 weeks then get a week holiday.
After 3 months, the steady rise in my kappa serum free light chain (sFLC) level that has occurred over the last 1 1/2 years has reversed and has fallen a little over 30%. I was at 116.69 and am now at 80.85. The light chain ratio also improved about 30%, from 18.67 to 12.85. My M-spike is unchanged at 0.2 g/dL. We are staying the course another cycle and see if the improvement continues.
On the biking front I was given the green light by my neck surgeon to return to outdoor riding. I made the adjustments to my bike by raising the handlebars and adding bar end mirrors to compensate for my lack of lateral motion. After my initial ride I found that I needed to raise the handle bars a little more, so I installed a 30 degree Thompson stem that works good for me. My vertical neck range has improved as has my neck endurance.
I still have trouble going much past 2 1/2 hours and my longest ride has been 42 miles, but I have logged in 640 miles since the second week of March a little over 1 1/2 months. For the last few weeks I have done about 120 miles a week and will be over 500 miles for April when this month concludes on Sunday. I have yet to do any big rallies as I am still a bit anxious about riding in big groups due to my range of motion limits.
I am dusting off my plan for riding in the Davis Mountains, though, and plan on doing that in mid June. I am also heading to the UK on business at the end of next week but am hoping to get at least one day of riding in with a local friend up in the Leicester region north of London. Also, one of my goals is to do the Hotter n Hell 100 at the end of August and hope Andrew Gordon can come in from Pennsylvania and join me. Last but not least is getting in one Ultra Race in September, the Texas Time Trials, which I have done several times. The HHH and the Ultra race will really test my neck and biking endurance as these necessitate 6 plus hours of saddle time. My speed is down but my determination is up.
-
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.
Encouraging all around. Stay safe and keep the rubber side down.
Encouraging all around. Stay safe and keep the rubber side down.
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Thank goodness the weather has finally improved here on the west coast of Canada. I am now riding my bike several times a week. It feels so good to work those leg and buttocks muscles that have been suffering at the hands of myeloma treatment and from a general lack of exercise. I have been walking quite regularly over the winter and spring, but getting out on the bike just feels so much more energetic. I have really enjoyed some wonderful bike rides around my hometown of Qualicum Beach, British Columbia the past couple of weeks.
Unfortunately this biking euphoria will be short lived as I am scheduled for an autologous stem cell transplant (ASCT) in June, with the stem cell harvest June 6 and 7 and the transplant on June 16. Hopefully there will be some summer left by the time I get my strength back.
I hope those of you who can ride enjoy some great spins this summer. Cheers.
Unfortunately this biking euphoria will be short lived as I am scheduled for an autologous stem cell transplant (ASCT) in June, with the stem cell harvest June 6 and 7 and the transplant on June 16. Hopefully there will be some summer left by the time I get my strength back.
I hope those of you who can ride enjoy some great spins this summer. Cheers.
-
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
Hi Colin and All,
It IS nice weather now, isn't it? I was out in Courtenay the week before last, with my older daughter and her 10 month old baby, to visit my mother. On a drive north to Miracle Beach, I saw many cyclists on the secondary highway.
At our cancer centre, on the floor where stem cell transplant patients are treated, there is a bulletin board. One of my friends from before the myeloma posted a picture of himself riding a bike right after the transplant. As a very fit person, he was able to do this, and it was encouraging to me to see that, in 2010!
It IS nice weather now, isn't it? I was out in Courtenay the week before last, with my older daughter and her 10 month old baby, to visit my mother. On a drive north to Miracle Beach, I saw many cyclists on the secondary highway.
At our cancer centre, on the floor where stem cell transplant patients are treated, there is a bulletin board. One of my friends from before the myeloma posted a picture of himself riding a bike right after the transplant. As a very fit person, he was able to do this, and it was encouraging to me to see that, in 2010!
-
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
Retuned from a business trip to the UK. I stayed a couple of extra days and was able to visit a U.K biking buddy who lives in Leicester about 1 hour and 20 minute train ride north of London. He took me out with his bike club on a 45-mile bike ride into the English countryside. We stopped for lunch in small village called Hickling and ate a pub/inn called the Plough. Had a wonderful time. My neck did not bother me too much. I was on my week off of treatment so had good energy.
Below are a couple of pics from the trip.
I am scheduled for doing a two-day excursion biking in the Davis Mountains of West Texas in the middle of June. That is a trip I have tried to make for the last couple of years. Will be staying in Alpine, Texas and bike up to the McDonald observatory. Have CAT 3 and CAT 2 climbs to negotiate – 81 miles (130 km) round trip. All the climbing is on the way to the observatory, so the ride back is all downhill. This is in elevation as Alpine is about 4,400 feet (1340 m) above sea level and the observatory is at 6,300 feet (1920 m). Never biked in elevation before, so that coupled with the climbs will make this interesting.
The second day we are biking into a town called Marfa, Texas. It is 70-mile (113 km) trip but flatter. Marfa is famous for the Marfa lights and is an eclectic arts/crafts area. Unique for west Texas.
Below are a couple of pics from the trip.
I am scheduled for doing a two-day excursion biking in the Davis Mountains of West Texas in the middle of June. That is a trip I have tried to make for the last couple of years. Will be staying in Alpine, Texas and bike up to the McDonald observatory. Have CAT 3 and CAT 2 climbs to negotiate – 81 miles (130 km) round trip. All the climbing is on the way to the observatory, so the ride back is all downhill. This is in elevation as Alpine is about 4,400 feet (1340 m) above sea level and the observatory is at 6,300 feet (1920 m). Never biked in elevation before, so that coupled with the climbs will make this interesting.
The second day we are biking into a town called Marfa, Texas. It is 70-mile (113 km) trip but flatter. Marfa is famous for the Marfa lights and is an eclectic arts/crafts area. Unique for west Texas.
- IMG_0626v2.jpg (57.38 KiB) Viewed 1191 times
- IMG_0624v2.jpg (82.79 KiB) Viewed 1191 times
- IMG_0619v2.jpg (80.6 KiB) Viewed 1191 times
- IMG_0614v2.jpg (102.61 KiB) Viewed 1191 times
-
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 finally was able to do a ride I have talked about for the last 3 years, the Davis Mountains in West Texas.
I road from Dallas to Alpine, Texas with my bike buddy Mark on this past Thursday. It is about 500 miles (800 km) to Alpine and stopping for gas and food took us about 9 hours. On Friday we did a ride from our hotel up to the McDonald’s Observatory, which was 41 miles (66 km) away. Our starting elevation was 4,400 feet (1340 m) and the Observatory sits on the top of Mount Locke at an elevation of 6,100 feet (1860 m).
We started Friday morning at 6:30, since the weather forecast was for highs around 105 degrees Fahrenheit (40.6 C). We took the ride in stages, heading 26 miles to the town of Ft. Davis. That ride had a couple of decent climbs but we only gained about 500 feet (150 m) in total elevation. We pulled into Ft Davis at about 8:20 and got some breakfast before we tackled the real climbing. The ride up the mountain was 15 miles (24 km) but the first 8 were only a net gain of 200 feet (60 m),. with the last 7 miles covering an elevation gain of about 1,000 feet (300 m). That last bit was grueling. The average grade for the 7 miles (11 km) was only 4%, but it hit over 15% in spots. My buddy Mark had to walk several times. I did for about 120 yards (110 m) during the steepest portion. We made it up to the top by 11:00, but the temp was already up to 93 degrees F (33.9 C).
The ride down was nerve racking as we had to navigate down the twisty winding road at high angles and very fast speeds. I went over 40 mph (64 km/h) a couple times and had to constantly pump my brakes to keep the bike under control. When we ride we normally stay on the shoulder so traffic can pass, but when I did the descent I avoided the shoulder as it has gravel on it. I needed to maintain full control so I rode on the main section of the road. The cars were going no faster and the traffic was light, so I had no issues with cars on the descent.
When we got back to Ft. Davis it was around 12:45. We got something to eat and drink. Mark decided he could not continue, as he was overheating. I told him to stay and around 1:30 pm went out by myself to do the 26 miles (42 km) back to Alpine to get the car and sag Mark back. By the time I got back to the hotel it 3:40 pm and was 104 degrees F (40 C). My bike thermometer read 120 F (48.9 C) due to the heat radiating back off the chip seal. The last 8 miles I road into a 15 mph (24 km/h) dry heat head wind. After coming out of the mountains you are on a high desert plateau with no trees to give you cover. I made it but would not want to do it again. I took a quick shower to cool off then drove back to Ft. Davis and picked up Mark and his bike. I covered a total of 83 miles (134 km) on the bike. We later drove back that night in my car to the observatory and looked through telescopes that were set up. We saw Jupiter, Saturn, and a couple of deep sky objects (M-15, the Great Hercules cluster, and M-51 the Whirlpool Galaxy). The sky on top of the mountain was clear and the stars just explode out at you and were very impressive. The sky in Dallas, on the other hand, is washed out by all of the city lights so, you can barely see the brightest stars.
The following day we did a 51 mile (82 km) ride to and from the town of Marfa, Texas. It is an eclectic west Texas town known for its arts and crafts. It is also known for the Marfa Lights, which is an unexplained phenomenon visible at night, that I believe, is a refraction of lights that originate from other sources. Whatever the explanation is, it was interesting. I had originally targeted a 70 mile (113 km) ride for Saturday but due to the continued heat and our experience from the day before, we cut the ride short and were done by noon before it got real hot.
Here are some pics from our trip.
I road from Dallas to Alpine, Texas with my bike buddy Mark on this past Thursday. It is about 500 miles (800 km) to Alpine and stopping for gas and food took us about 9 hours. On Friday we did a ride from our hotel up to the McDonald’s Observatory, which was 41 miles (66 km) away. Our starting elevation was 4,400 feet (1340 m) and the Observatory sits on the top of Mount Locke at an elevation of 6,100 feet (1860 m).
We started Friday morning at 6:30, since the weather forecast was for highs around 105 degrees Fahrenheit (40.6 C). We took the ride in stages, heading 26 miles to the town of Ft. Davis. That ride had a couple of decent climbs but we only gained about 500 feet (150 m) in total elevation. We pulled into Ft Davis at about 8:20 and got some breakfast before we tackled the real climbing. The ride up the mountain was 15 miles (24 km) but the first 8 were only a net gain of 200 feet (60 m),. with the last 7 miles covering an elevation gain of about 1,000 feet (300 m). That last bit was grueling. The average grade for the 7 miles (11 km) was only 4%, but it hit over 15% in spots. My buddy Mark had to walk several times. I did for about 120 yards (110 m) during the steepest portion. We made it up to the top by 11:00, but the temp was already up to 93 degrees F (33.9 C).
The ride down was nerve racking as we had to navigate down the twisty winding road at high angles and very fast speeds. I went over 40 mph (64 km/h) a couple times and had to constantly pump my brakes to keep the bike under control. When we ride we normally stay on the shoulder so traffic can pass, but when I did the descent I avoided the shoulder as it has gravel on it. I needed to maintain full control so I rode on the main section of the road. The cars were going no faster and the traffic was light, so I had no issues with cars on the descent.
When we got back to Ft. Davis it was around 12:45. We got something to eat and drink. Mark decided he could not continue, as he was overheating. I told him to stay and around 1:30 pm went out by myself to do the 26 miles (42 km) back to Alpine to get the car and sag Mark back. By the time I got back to the hotel it 3:40 pm and was 104 degrees F (40 C). My bike thermometer read 120 F (48.9 C) due to the heat radiating back off the chip seal. The last 8 miles I road into a 15 mph (24 km/h) dry heat head wind. After coming out of the mountains you are on a high desert plateau with no trees to give you cover. I made it but would not want to do it again. I took a quick shower to cool off then drove back to Ft. Davis and picked up Mark and his bike. I covered a total of 83 miles (134 km) on the bike. We later drove back that night in my car to the observatory and looked through telescopes that were set up. We saw Jupiter, Saturn, and a couple of deep sky objects (M-15, the Great Hercules cluster, and M-51 the Whirlpool Galaxy). The sky on top of the mountain was clear and the stars just explode out at you and were very impressive. The sky in Dallas, on the other hand, is washed out by all of the city lights so, you can barely see the brightest stars.
The following day we did a 51 mile (82 km) ride to and from the town of Marfa, Texas. It is an eclectic west Texas town known for its arts and crafts. It is also known for the Marfa Lights, which is an unexplained phenomenon visible at night, that I believe, is a refraction of lights that originate from other sources. Whatever the explanation is, it was interesting. I had originally targeted a 70 mile (113 km) ride for Saturday but due to the continued heat and our experience from the day before, we cut the ride short and were done by noon before it got real hot.
Here are some pics from our trip.
- IMG_0750v2.jpg (76.8 KiB) Viewed 1034 times
- IMG_0730v2.jpg (100.94 KiB) Viewed 1034 times
- FullSizeRender1v2.jpg (48.95 KiB) Viewed 1034 times
- IMG_0722v2.jpg (63.7 KiB) Viewed 1034 times
- FullSizeRenderv2.jpg (73.97 KiB) Viewed 1034 times
-
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 the descriptions of your cycling and the pictures too! I guess that even though it was too hot on the bike ride through the desert, ti would be even worse to try to do that now, since there is a record breaking heat wave in the southwest of the U.S. right now. It was too hot at the Phoenix Airport to fly some types of planes yesterday!
I wondered if you and your family had been to Maui. Many cyclists ride down Mt. Haleakala, and they take a van up the mountain. Some cyclists ride up the mountain too. We drove up there to see the wonderful national park in the cone of the volcano. The wind and sleet up there reminded me of home, whereas down at sea level it is tropical and calm. So I think that would be on a list of places that cyclists would like to see.
I wondered if you and your family had been to Maui. Many cyclists ride down Mt. Haleakala, and they take a van up the mountain. Some cyclists ride up the mountain too. We drove up there to see the wonderful national park in the cone of the volcano. The wind and sleet up there reminded me of home, whereas down at sea level it is tropical and calm. So I think that would be on a list of places that cyclists would like to see.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009