Andrew,
You're a monster on the bike! I know the Skyline Drive and Blue Ridge Parkway area pretty well, having grown up and gone to college in that area. That's some serious climbing you did that day. I'm impressed!
Here's wishing you a healthy and fun biking year in 2017.
Mike
Forums
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Biking with multiple myeloma
Thank all of you for the well wishes. The relapse was expected as my free light chain has been going up slowly over the past year. I currently am on Velcade and 40 mg of dex every 2 weeks. So the likely bump will be to increase the Velcade to weekly and possibly add back in Revlimid. I was taken off Revlimid in 2012 when I developed meningitis and C, diff. However, that was beforer I started IVIG infusions. So I think we will use a minimalist approach and save Darzalex for later. The other option is use Kyprolis instead of Velcade. So lots of options. I am not concerned at this point.
The healing process for the neck break will take time. I have to wear a hard plastic collar for 6 weeks and then wear a softer collar to shower. For the first time I need my wife to be an active caregiver. She has been a trooper.
I hope to be back on my trainer in a few weeks and return to work soon. I have been trying to do work from home, but the opioids and Valium (diazepam) make me drowsy, so I am not very productive. We are at out year end close and I lost my international tax manager, so I am trying to do two jobs working on VPN at home. Its been a challenge. I am a VP of Tax at DynCorp International, a global defense contractor.
Thanks for all you well wishes. My current goal is to heal and then see what I can do on my bike. I should have full up and down flexion, which means I can ride my time trial bike, but we shall see – that is a way off. If I decide to race, the first one is scheduled for early April. That will be cutting it close. I will have to at least be on the trainer by early February.
Ron
The healing process for the neck break will take time. I have to wear a hard plastic collar for 6 weeks and then wear a softer collar to shower. For the first time I need my wife to be an active caregiver. She has been a trooper.
I hope to be back on my trainer in a few weeks and return to work soon. I have been trying to do work from home, but the opioids and Valium (diazepam) make me drowsy, so I am not very productive. We are at out year end close and I lost my international tax manager, so I am trying to do two jobs working on VPN at home. Its been a challenge. I am a VP of Tax at DynCorp International, a global defense contractor.
Thanks for all you well wishes. My current goal is to heal and then see what I can do on my bike. I should have full up and down flexion, which means I can ride my time trial bike, but we shall see – that is a way off. If I decide to race, the first one is scheduled for early April. That will be cutting it close. I will have to at least be on the trainer by early February.
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
Re: Biking with multiple myeloma
Wow, Ron. You've really been through the ringer lately. I'm sorry about the accident and also about the relapse. I'm glad to hear that you're recovering, and I agree with your assessment of the treatment options that are still open to you. You haven't really had to treat your myeloma with a lot so far, so you still have a lot of weapons in the arsenal.
Good luck, and may your 2017 be a lot better than the end of your 2016!
Good luck, and may your 2017 be a lot better than the end of your 2016!
Re: Biking with multiple myeloma
What an amazing pair of cyclists you guys are. You have really lifted my spirits for getting back out there and continuing to ride once I am through my induction and stem cell transplant. I'm riding once or twice a week now when weather isn't too bad.
I used to commute to work year round for over 15 years for about 20 miles (32 km) daily on a fairly hilly route in addition to training for marathons. Not running at present due to compressed discs in my upper back and fear of damaging bones from lytic lesions.
In the past decade I have settled on a fairly sturdy (but heavy) and comfortable steel touring bicycle (a soma saga) and plan on getting back to some long touring rides this summer.
Anyway, I wish you a speedy recovery Ron and hope you keep the M Monster at bay and that both you and Andrew are able to keep doing what you obviously love.
I used to commute to work year round for over 15 years for about 20 miles (32 km) daily on a fairly hilly route in addition to training for marathons. Not running at present due to compressed discs in my upper back and fear of damaging bones from lytic lesions.
In the past decade I have settled on a fairly sturdy (but heavy) and comfortable steel touring bicycle (a soma saga) and plan on getting back to some long touring rides this summer.
Anyway, I wish you a speedy recovery Ron and hope you keep the M Monster at bay and that both you and Andrew are able to keep doing what you obviously love.
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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
Collin,
Thanks for the response. Good luck with your induction and upcoming stem cell transplant. I did not go that route, but Andrew did. It will take a little time for you after the stem cell transplant to rebuild your immune system and strength. However, as you can see from the miles Andrew has posted you should have no problem riding later.
I don't have a classic touring bike but love the classic looks and feel of them, especially the old steel models. When I did RAGBRAI there were a lot of people that rode that style of bike and had them laden with panniers to carry their camping gear. I on the other hand shared an RV with others. Having to set up and tear down every day with the possibility of rain was a bit too rustic for me.
Thanks for the response. Good luck with your induction and upcoming stem cell transplant. I did not go that route, but Andrew did. It will take a little time for you after the stem cell transplant to rebuild your immune system and strength. However, as you can see from the miles Andrew has posted you should have no problem riding later.
I don't have a classic touring bike but love the classic looks and feel of them, especially the old steel models. When I did RAGBRAI there were a lot of people that rode that style of bike and had them laden with panniers to carry their camping gear. I on the other hand shared an RV with others. Having to set up and tear down every day with the possibility of rain was a bit too rustic for me.
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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
Colin,
Happy to see that you are inspired by this uplifting thread that Ron started a number of years ago. It helped me a great deal when I was struggling with treatment side effects, and it has helped many others with multiple myeloma who still have a love of cycling. I encourage you to continue to do as much as you comfortably can do, even through the transplant recovery.
Happy to see that you are inspired by this uplifting thread that Ron started a number of years ago. It helped me a great deal when I was struggling with treatment side effects, and it has helped many others with multiple myeloma who still have a love of cycling. I encourage you to continue to do as much as you comfortably can do, even through the transplant recovery.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Hi Ron,
Sorry to read about the accident and relapse. I am sure your excellent fitness level will benefit you moving forward with regard to both challenges. Positive vibes being sent your way.
Mark
Sorry to read about the accident and relapse. I am sure your excellent fitness level will benefit you moving forward with regard to both challenges. Positive vibes being sent your way.
Mark
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Mark11
Re: Biking with multiple myeloma
Mark,
Thanks for the well wishes.
I will keep all of you up to date on my recovery and the changes to my multiple myeloma treatment.
Thanks for the well wishes.
I will keep all of you up to date on my recovery and the changes to my multiple myeloma treatment.
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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 had my appointment with my oncologist and we went over all of the tests.
The driver for me is sFLC and the tracking of the kappa light chain. Over the course of 2 years, it has gradually risen to above normal levels to now over 100. The rise has been very slow; it was at 67.8 in February of 2016 and now is 116.69.
My bone marrow biopsy shows 15% plasma cells not 40%, which I thought his nurse had told me. So that is much better.
The bone-skeletal survey showed no lesions.
My M-spike has been consistent at 0.2 g/dL for a year.
Technically, a relapse so the protocol is being changed.
Old protocol:
Velcade shot once every 2 weeks with 40 mg of dex orally same day as shot.
IVIG once a month
Aredia once every 12 weeks
New protocol
Velcade shot 3 weeks in a row, then off 1 week
Dex 20 mg orally same days as Velcade
Revlimid - 5 mg on 21 days, off 7 days.
No change in IVIG and Aredia - stay with older protocol
We will monitor this to see if it brings things down - both of us are confident it will based on my history.
In so far as the chromosome markers I am standard risk with no unusual deletions.
Since this is a minor change, I don't expect any serious side effects. I had been on Revlimid before at 10 mg from March 2009-June 2012. No issues with PN. Treatment being more often may cause some fatigue. I have scheduled all my Velcade and dex treatments for Wednesdays so that by Saturday the effects will be gone and therefore should be able to ride hard on the weekends.
We shall see.
The collar for my broken neck comes off on Monday, February 13, then I can start rehabbing the neck muscles. I have ridden my trainer a few times but lightly and only for 20 minutes at a time. Hard to ride sitting straight up. Hope with 2-4 weeks of rehab I will have the neck strength to ride outside. I am targeting early March. I am going to be more conscious of weather conditions as I am expected to loose 50% of my left-right neck motion. My up and down range of motion should be near normal after full rehab.
The driver for me is sFLC and the tracking of the kappa light chain. Over the course of 2 years, it has gradually risen to above normal levels to now over 100. The rise has been very slow; it was at 67.8 in February of 2016 and now is 116.69.
My bone marrow biopsy shows 15% plasma cells not 40%, which I thought his nurse had told me. So that is much better.
The bone-skeletal survey showed no lesions.
My M-spike has been consistent at 0.2 g/dL for a year.
Technically, a relapse so the protocol is being changed.
Old protocol:
Velcade shot once every 2 weeks with 40 mg of dex orally same day as shot.
IVIG once a month
Aredia once every 12 weeks
New protocol
Velcade shot 3 weeks in a row, then off 1 week
Dex 20 mg orally same days as Velcade
Revlimid - 5 mg on 21 days, off 7 days.
No change in IVIG and Aredia - stay with older protocol
We will monitor this to see if it brings things down - both of us are confident it will based on my history.
In so far as the chromosome markers I am standard risk with no unusual deletions.
Since this is a minor change, I don't expect any serious side effects. I had been on Revlimid before at 10 mg from March 2009-June 2012. No issues with PN. Treatment being more often may cause some fatigue. I have scheduled all my Velcade and dex treatments for Wednesdays so that by Saturday the effects will be gone and therefore should be able to ride hard on the weekends.
We shall see.
The collar for my broken neck comes off on Monday, February 13, then I can start rehabbing the neck muscles. I have ridden my trainer a few times but lightly and only for 20 minutes at a time. Hard to ride sitting straight up. Hope with 2-4 weeks of rehab I will have the neck strength to ride outside. I am targeting early March. I am going to be more conscious of weather conditions as I am expected to loose 50% of my left-right neck motion. My up and down range of motion should be near normal after full rehab.
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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
My husband's numbers have been slowly trending upward in the last year also so we are possibly looking at a change in his treatment as well. He was initially diagnosed with IgG lambda in 2010 and had a stem cell transplant in March of 2011.
The strange thing is that his kappa light chains are the ones that have been on the increase. His last blood tests show his IgG at 1620, kappas are at 9.82 and lambdas are at 3.37 with a ratio of 2.91. So far his M-protein has been 0. We should be getting those results in a couple of days.
He has been on a maintenance dose of Revlimid 15 mg for the last 6.5 years. He stopped taking dex in March of 2016 and that was when all of his numbers started to increase. We see his oncologist in 2 weeks but are not sure what to make of all of this.
The strange thing is that his kappa light chains are the ones that have been on the increase. His last blood tests show his IgG at 1620, kappas are at 9.82 and lambdas are at 3.37 with a ratio of 2.91. So far his M-protein has been 0. We should be getting those results in a couple of days.
He has been on a maintenance dose of Revlimid 15 mg for the last 6.5 years. He stopped taking dex in March of 2016 and that was when all of his numbers started to increase. We see his oncologist in 2 weeks but are not sure what to make of all of this.
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Charisse DeFlice - Name: Charisse
- Who do you know with myeloma?: Husband/John
- When were you/they diagnosed?: July 2010
- Age at diagnosis: 61