George,
Quite a story. I think that you are on the right track with slowly getting back to some light training. Fitness is important in fighting this disease. You are getting good care, so I doubt that starting back with light training will hurt. Listen to you body and don't push beyond what you can handle comfortably.
Forums
Re: Biking with multiple myeloma
George,
I honestly never heard of ammonia poisoning like you described. I recall as a young athlete playing football that after a double session the locker room would have a distinct ammonia smell. That is not unusual when athletes sweat and it soaks their clothing. However, to have it build up internally to the point of poisoning them seems extremely unusual. I am so glad they found the cause and that the Velcade and dexamethasone combination worked.
Good luck training, but as Andrew said, take it slow at first, listening to your body.
I honestly never heard of ammonia poisoning like you described. I recall as a young athlete playing football that after a double session the locker room would have a distinct ammonia smell. That is not unusual when athletes sweat and it soaks their clothing. However, to have it build up internally to the point of poisoning them seems extremely unusual. I am so glad they found the cause and that the Velcade and dexamethasone combination worked.
Good luck training, but as Andrew said, take it slow at first, listening to your body.
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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
Goldmine and Ron,
Thank you for your responses. Yes, high ammonia presentation is a rare case. I was told that only 3% of multiple myeloma cases manifest high ammonia. My elevated ammonia levels reacted well to weekly Velcade + dexamethasone. Ammonia level got reduced to within the norm and M-spike got halved.
This week I started pedaling on a stationary bike. Very easy and slow, 15-20 minutes, but it’s a start!
Thank you for your responses. Yes, high ammonia presentation is a rare case. I was told that only 3% of multiple myeloma cases manifest high ammonia. My elevated ammonia levels reacted well to weekly Velcade + dexamethasone. Ammonia level got reduced to within the norm and M-spike got halved.
This week I started pedaling on a stationary bike. Very easy and slow, 15-20 minutes, but it’s a start!
Re: Biking with multiple myeloma
Good for you George! Take it easy and build back slow. You will get there.
I had to cancel out of the Texas Time Trials this Saturday as North Texas is getting thunderstorms and rain all weekend. Since I broke my neck in a biking accident on slick road conditions, I try an avoid riding in inclement weather. I hated to miss this as I actually got my oncologist to give me a 30 day holiday from treatment so that my blood oxygen levels would be in the normal range. The VRD has caused me to be slightly anemic and it has affected my performance. However, better to be safe than sorry so I cancelled out. Need to substitute another biking challenge.
I had to cancel out of the Texas Time Trials this Saturday as North Texas is getting thunderstorms and rain all weekend. Since I broke my neck in a biking accident on slick road conditions, I try an avoid riding in inclement weather. I hated to miss this as I actually got my oncologist to give me a 30 day holiday from treatment so that my blood oxygen levels would be in the normal range. The VRD has caused me to be slightly anemic and it has affected my performance. However, better to be safe than sorry so I cancelled out. Need to substitute another biking challenge.
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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,
Like you, I was a competitive cyclist pre-diagnosis and kept things going through treatment. Anemia has been my problem, which I stupidly ignored for a couple of years before getting tested. I thought I was just getting older and slower! But once I plucked up the courage to see my doctor and the blood tests started, my haemoglobin was discovered to be 116 instead of the historic 145. No wonder hills were a challenge.
Eventually myeloma was diagnosed and I had a stem cell transplant in August 2017 but relapsed pretty quickly. I kept cycling throughout, determined to keep as fit as possible. My first ride after the transplant was 2 miles and I was completely exhausted, .but I persevered.
I am now on a regimen of Revlimid, Ninlaro, and dex and doing really well with virtually no side effects. My haemoglobin levels have not recovered, however, and my oncologist suspects they won’t, although all other blood numbers look excellent. So I am possibly stuck at 115 to 120 for the rest of my life, but it’s a fair price if I can still bike.
I aim for 150+ miles a week and average 15 mph, but just go slowly up hills. My stamina and recovery are good, but my power output is quite a bit down when compared with a few years ago. FTP is now 180w and it was 250w. Plus the steroids have helped add 16 pounds, so it is a double problem. However, I am well enough to get out with friends, and no matter how tough it gets, I am still a cyclist.
Thanks for the inspiration I get from your determination. Keep it going.
Like you, I was a competitive cyclist pre-diagnosis and kept things going through treatment. Anemia has been my problem, which I stupidly ignored for a couple of years before getting tested. I thought I was just getting older and slower! But once I plucked up the courage to see my doctor and the blood tests started, my haemoglobin was discovered to be 116 instead of the historic 145. No wonder hills were a challenge.
Eventually myeloma was diagnosed and I had a stem cell transplant in August 2017 but relapsed pretty quickly. I kept cycling throughout, determined to keep as fit as possible. My first ride after the transplant was 2 miles and I was completely exhausted, .but I persevered.
I am now on a regimen of Revlimid, Ninlaro, and dex and doing really well with virtually no side effects. My haemoglobin levels have not recovered, however, and my oncologist suspects they won’t, although all other blood numbers look excellent. So I am possibly stuck at 115 to 120 for the rest of my life, but it’s a fair price if I can still bike.
I aim for 150+ miles a week and average 15 mph, but just go slowly up hills. My stamina and recovery are good, but my power output is quite a bit down when compared with a few years ago. FTP is now 180w and it was 250w. Plus the steroids have helped add 16 pounds, so it is a double problem. However, I am well enough to get out with friends, and no matter how tough it gets, I am still a cyclist.
Thanks for the inspiration I get from your determination. Keep it going.
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Rory - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Dec2015
- Age at diagnosis: 65
Re: Biking with multiple myeloma
Rory,
Thanks for your story. I am pretty much in the same boat. I have kept track of my rides and have seen a gradual loss in overall speed primarily caused by the treatment anemia side effects. However, I like you have been able to keep my total distance up and seem to recover well. The good news is that what I want to do now is ride longer even if it is at a slower speed.
I am thinking about doing a credit card type multi day ride. Put a light back pack on with a change of clothes and light shoes and head out for 3 or 4 days. I would bike 75 or 80 miles a day stopping at a motels for the night and making a big circle of say 300 to 400 miles over that period of time. I will have to work the logistics out around my treatments which I normally schedule on Weds. I have also thought also about Randonneuring. There is a Randonneur club in North Texas. I could handle the shorter brevets but the longer ones would be a challenge.
Thanks for your story. I am pretty much in the same boat. I have kept track of my rides and have seen a gradual loss in overall speed primarily caused by the treatment anemia side effects. However, I like you have been able to keep my total distance up and seem to recover well. The good news is that what I want to do now is ride longer even if it is at a slower speed.
I am thinking about doing a credit card type multi day ride. Put a light back pack on with a change of clothes and light shoes and head out for 3 or 4 days. I would bike 75 or 80 miles a day stopping at a motels for the night and making a big circle of say 300 to 400 miles over that period of time. I will have to work the logistics out around my treatments which I normally schedule on Weds. I have also thought also about Randonneuring. There is a Randonneur club in North Texas. I could handle the shorter brevets but the longer ones would be a challenge.
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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,
Good luck with your mini tour. I am doing one next week over three days. And do try randonees; they are great fun and ideally suited to our lower haemoglobin. My oncologist tells me to forget EPO (like Lance Armstrong) and that my current reading of 116 is the same as many females have to cope with. In other words, she says, get over it and enjoy your cycling!
Good luck with your mini tour. I am doing one next week over three days. And do try randonees; they are great fun and ideally suited to our lower haemoglobin. My oncologist tells me to forget EPO (like Lance Armstrong) and that my current reading of 116 is the same as many females have to cope with. In other words, she says, get over it and enjoy your cycling!
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Rory - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Dec2015
- Age at diagnosis: 65
Re: Biking with multiple myeloma
Thanks Rory, after you mini tour, please post the details of how it went.
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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
Rory,
I just realized you are from the UK. One of my biking buddies, Ken Boyden, lives in Thrushington, Leicestershire. He is a member of the Syston Scylers bike club. I was lucky enough to ride with him and the club when I visited the UK last year. I was on a trip to London for business and took a couple of extra days to visit him. I took a train to Leicestershire and got in a 60k ride with his club. They always have a destination planned and it normally involves a pub. Wonderful countryside and thoroughly enjoyed it (related post in this thread).
I just realized you are from the UK. One of my biking buddies, Ken Boyden, lives in Thrushington, Leicestershire. He is a member of the Syston Scylers bike club. I was lucky enough to ride with him and the club when I visited the UK last year. I was on a trip to London for business and took a couple of extra days to visit him. I took a train to Leicestershire and got in a 60k ride with his club. They always have a destination planned and it normally involves a pub. Wonderful countryside and thoroughly enjoyed it (related post in this thread).
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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 past Saturday I participated in the St. Jude's North Texas Bike Rally. This rally is for St. Jude's Children's Hospital serving the Dallas-Ft. Worth area. Great ride and great event. As multiple myeloma patients and caregivers, we often get caught up in our own journeys. I have been fortunate to have lived into my mid 60s and have raised 4 boys who are all adults now. So I have had a full life. I hope to continue to live for a long time, but if cancer comes to take me, I will at least have been able to look back on my life with satisfaction. Children with cancer are struck before they have had a chance to reach their potential. So we all sometimes need to stand back and put plights into perspective.
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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