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Re: Biking with multiple myeloma
Ron good to know that the infusions work. I am going to try subcutaneous IG infusion which means I can do it at home and have the product with me when travelling. I am fortunate in that we have universal health care in Canada, so no direct cost to me for the product and ultimately the same should I start on Revlimid or some other treatment. In addition, my myeloma has been attributed in part to my work as a fire / arson investigator and other police-related duties, so I have disability coverage for this which also covers costs related to the myeloma. Group ride tomorrow.
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Wayne W - Name: Wayne W
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 65
Re: Biking with multiple myeloma
I have not posted to the forum previously, but the Biking topic caught my eye. I was diagnosed last November at 43 years old, with Stage 4 multiple myeloma. Retrospectively my symptoms were numerous, but I dismissed them all attributing them to getting older and working long hours. The one thing I could not ignore was a bad hip which would not get any better no matter how much physical therapy I endured. By the time I was diagnosed walking was very difficult and it turned out that I had more lesion than hip.
I am fortunate enough to be in Boston and under the care of Dr. Noopur Raje at Mass General and Dr. Paul Richardson at Dana Farber. I could not ask for a better team. After intensive RVD and crutches for a few months my numbers came down sufficiently and I had an auto stem cell transplant. Currently, all is well, I am on a modified RVD regime, receiving bone strengthening meds, and take a zillion supplements etc. My hip, which was on the verge of failure has essentially grown back, and my bone pain is manageable and mostly implicated by my physical fitness regime - which is what I really wanted to comment on. My doctors are all really pleased with my progress and are entirely optimistic that I have a good long road ahead of me.
The hardest part of receiving a multiple myeloma diagnosis was my children and wife, I have three kids under 12 and I cannot tolerate a world where I am not around. The second hardest part of the diagnosis was the thought that I could not exercise and work out as much as I had prior to the diagnosis. I am am avid biker, weight lifter and cardioaholic.
Over this past summer I was able to do my first two century rides. The first one was from Boston to Cape Cod, and it was challenging but not killer - generally riding downhill toward ocean. The second was from Boston to the Berkshires in Western MA, totally different story hills and mountains all the way there. Made it 115 miles and then my wife picked me up. Too late, too tired, too far to go...
Anyhow, one year into my new life as a cancer patient I am pleased to say that I am lifting 4 - 5 days a week, working out 6 - 7 days a week, cycling long distances and looking forward to potentially skiing with my family this winter. I am fortunate enough that I can afford to hire a very high caliber personal trainer to help get my leg strong again (squats, lunges, RDLs etc). Granted I have pains and aches that I never used to have, and I particularly feel that my ribs are not as strong as they once were, but net net things are not bad. The ability to be physically active is so important to me psychologically that I am incredibly relieves to be able to do what I do. Now if I could just lose the 15lbs that I have gained since the diagnosis I will be all set...
I am fortunate enough to be in Boston and under the care of Dr. Noopur Raje at Mass General and Dr. Paul Richardson at Dana Farber. I could not ask for a better team. After intensive RVD and crutches for a few months my numbers came down sufficiently and I had an auto stem cell transplant. Currently, all is well, I am on a modified RVD regime, receiving bone strengthening meds, and take a zillion supplements etc. My hip, which was on the verge of failure has essentially grown back, and my bone pain is manageable and mostly implicated by my physical fitness regime - which is what I really wanted to comment on. My doctors are all really pleased with my progress and are entirely optimistic that I have a good long road ahead of me.
The hardest part of receiving a multiple myeloma diagnosis was my children and wife, I have three kids under 12 and I cannot tolerate a world where I am not around. The second hardest part of the diagnosis was the thought that I could not exercise and work out as much as I had prior to the diagnosis. I am am avid biker, weight lifter and cardioaholic.
Over this past summer I was able to do my first two century rides. The first one was from Boston to Cape Cod, and it was challenging but not killer - generally riding downhill toward ocean. The second was from Boston to the Berkshires in Western MA, totally different story hills and mountains all the way there. Made it 115 miles and then my wife picked me up. Too late, too tired, too far to go...
Anyhow, one year into my new life as a cancer patient I am pleased to say that I am lifting 4 - 5 days a week, working out 6 - 7 days a week, cycling long distances and looking forward to potentially skiing with my family this winter. I am fortunate enough that I can afford to hire a very high caliber personal trainer to help get my leg strong again (squats, lunges, RDLs etc). Granted I have pains and aches that I never used to have, and I particularly feel that my ribs are not as strong as they once were, but net net things are not bad. The ability to be physically active is so important to me psychologically that I am incredibly relieves to be able to do what I do. Now if I could just lose the 15lbs that I have gained since the diagnosis I will be all set...
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sas3 - Name: Josh
- When were you/they diagnosed?: 11/14
- Age at diagnosis: 43
Re: Biking with multiple myeloma
Josh,
That is an inspirational story. The fact that you have in essence made a comeback from almost no hip at all is fantastic.
Riding bikes is my passion but biking as you probably are aware, does not build bone mass. We must supplement it with resistance training. Simply walking a couple of miles in between bike rides will help a lot. However, a training program that includes weight lifting or other resistance work that would compliment and even enhance our biking abilities would be worth knowing.
Can your share your standard workout?
That is an inspirational story. The fact that you have in essence made a comeback from almost no hip at all is fantastic.
Riding bikes is my passion but biking as you probably are aware, does not build bone mass. We must supplement it with resistance training. Simply walking a couple of miles in between bike rides will help a lot. However, a training program that includes weight lifting or other resistance work that would compliment and even enhance our biking abilities would be worth knowing.
Can your share your standard workout?
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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
Hi Josh,
I'm very impressed with what you have gone through and what you've accomplished. Definitely an inspiration, as Ron said.
Best wishes to you for many more years of riding and working out. I wouldn't be surprised to see you post here sometime in the future about riding a century with your children!
Mike
I'm very impressed with what you have gone through and what you've accomplished. Definitely an inspiration, as Ron said.
Best wishes to you for many more years of riding and working out. I wouldn't be surprised to see you post here sometime in the future about riding a century with your children!
Mike
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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
Great dialog! I am new to this, diagnosed September 2015. When I go to doc, the fellow talks to me first, then the doc comes in. The fellow told me no more body surfing. I LOVE LOVE LOVE bodysurfing. So I was more than a tad sad. But then the doc comes in and I mentioned the no bodysurfing thing. He said you LOVE bodysurfingm you keep doing it!
My health adventure is a bit more complicated because about the same time as this diagnosis. I had bad tachycardia and then had cardiac ablation (when it rains it pours ...). So my heart is still healing. This has put exercise on the back burner and I can see my muscles and fitness declining. I just started slow speed weight lifting. Uses machines with trainer and move weights very slowly. I am trying to regain my strength and stamina. Back in the ocean soon, and back on my bike too, soon.
My health adventure is a bit more complicated because about the same time as this diagnosis. I had bad tachycardia and then had cardiac ablation (when it rains it pours ...). So my heart is still healing. This has put exercise on the back burner and I can see my muscles and fitness declining. I just started slow speed weight lifting. Uses machines with trainer and move weights very slowly. I am trying to regain my strength and stamina. Back in the ocean soon, and back on my bike too, soon.
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Mermaid - Name: Nanz
- When were you/they diagnosed?: 2015
- Age at diagnosis: 67
Re: Biking with multiple myeloma
Memaid,
I can relate a bit to your complications. Last August I had open heart valve replacement surgery. I now have a bovine (cow) valve. I was up and back on the bike within 6 weeks and have over 5,300 miles this year and counting. So you can and hopefully will make it back to doing what you love!!
Ron
I can relate a bit to your complications. Last August I had open heart valve replacement surgery. I now have a bovine (cow) valve. I was up and back on the bike within 6 weeks and have over 5,300 miles this year and counting. So you can and hopefully will make it back to doing what you love!!
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
First, thanks all for the kind words. Glad to break the ice on the forum.
Happy to share my workouts and provide a bit of background.
Historically prior to my diagnosis I had been lifting for around 20 years, at times going fairly heavy, but I was lazy lifter preferring to do chest and arms to back and legs. Once I was through the initial RVD cycles and off of the crutches I focused on just getting back to the gym and really only did cardio, and really only the stationary bike. I found that my stamina was really low, and frankly it did not really build up too much until immediately prior to the transplant - then of course I went in for the transplant and lost even more. Post transplant I was given permission to hit the gym and work at the same time (4 weeks post transplant) and I immediately started to lift lightly and reintroduce meaningful cardio. The silver lining I think was that all the time off the leg (I basically slept through the two weeks post transplant) seemed to have healed it even more.
About a month later (May 2015) - so two months post transplant - I hired a trainer and essentially explained my situation and that I wanted to focus on the leg strength and really build up the area around the hip joint. Critically, as I mentioned in my first post, the trainer is a professional, he is in his 40s, has been training for over 20 years, has all kind of credentials and certifications and knows what he is doing. We started on a regime that we continue to build off of integrating and building off of the following main exercises:
Romanian Deadlifts both barbells, kettle bells and dumbbells
Squats - front barbell and kettle bells
rows - for back
presses (incline and flat) for chest
We do other stuff too, but each workout is built around RDLs or squats combined with either back or chest. Core stabilization and complementary exercises are added in between the sets as well. Two workouts with the trainer a week hitting chest, back, and legs. I do arms and a bit more chest on my own as supplemental.
I will say that the multiple myeloma has caused me issues - mostly rib related - as a result of the lifting. Again, that's where the form is so important. Correct form does not put stress on the ribs for most exercises as "packing the scapula" (a terms that I have become quite familiar) relieves pressure from the ribs. That said, there are some things I cannot do, and I do not push myself too far.
I would say that my legs, as a result of the RDLs and squats are stronger than ever, and my chest is getting back, but I do not see every going really heavy again - which is totally ok.
Turning to cardio - I try to do at least an hour, ideally 90 minutes 6 times a week. I tend to be at the gym by 6AM otherwise I will not get there. I alternate between the stairmill, the cross trainer elliptical, the stationary bike, and the step master. Notwithstanding that my leg looks good I think my running days are over.
The impact of the regime was that I felt stronger cycling in the late summer than I had in prior years.
A lot more detail than you asked for, but hopefully helpful...
josh
Happy to share my workouts and provide a bit of background.
Historically prior to my diagnosis I had been lifting for around 20 years, at times going fairly heavy, but I was lazy lifter preferring to do chest and arms to back and legs. Once I was through the initial RVD cycles and off of the crutches I focused on just getting back to the gym and really only did cardio, and really only the stationary bike. I found that my stamina was really low, and frankly it did not really build up too much until immediately prior to the transplant - then of course I went in for the transplant and lost even more. Post transplant I was given permission to hit the gym and work at the same time (4 weeks post transplant) and I immediately started to lift lightly and reintroduce meaningful cardio. The silver lining I think was that all the time off the leg (I basically slept through the two weeks post transplant) seemed to have healed it even more.
About a month later (May 2015) - so two months post transplant - I hired a trainer and essentially explained my situation and that I wanted to focus on the leg strength and really build up the area around the hip joint. Critically, as I mentioned in my first post, the trainer is a professional, he is in his 40s, has been training for over 20 years, has all kind of credentials and certifications and knows what he is doing. We started on a regime that we continue to build off of integrating and building off of the following main exercises:
Romanian Deadlifts both barbells, kettle bells and dumbbells
Squats - front barbell and kettle bells
rows - for back
presses (incline and flat) for chest
We do other stuff too, but each workout is built around RDLs or squats combined with either back or chest. Core stabilization and complementary exercises are added in between the sets as well. Two workouts with the trainer a week hitting chest, back, and legs. I do arms and a bit more chest on my own as supplemental.
I will say that the multiple myeloma has caused me issues - mostly rib related - as a result of the lifting. Again, that's where the form is so important. Correct form does not put stress on the ribs for most exercises as "packing the scapula" (a terms that I have become quite familiar) relieves pressure from the ribs. That said, there are some things I cannot do, and I do not push myself too far.
I would say that my legs, as a result of the RDLs and squats are stronger than ever, and my chest is getting back, but I do not see every going really heavy again - which is totally ok.
Turning to cardio - I try to do at least an hour, ideally 90 minutes 6 times a week. I tend to be at the gym by 6AM otherwise I will not get there. I alternate between the stairmill, the cross trainer elliptical, the stationary bike, and the step master. Notwithstanding that my leg looks good I think my running days are over.
The impact of the regime was that I felt stronger cycling in the late summer than I had in prior years.
A lot more detail than you asked for, but hopefully helpful...
josh
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sas3 - Name: Josh
- When were you/they diagnosed?: 11/14
- Age at diagnosis: 43
Re: Biking with multiple myeloma
I am always happy to see posts on this thread and to hear success stories!
I am primarily a runner but absolutely love cycling as well. I am happy to say that I ran my fourth marathon of this calendar year on Sunday the 6th. Before my diagnoses, the most I had ever done in one year was two!
Since I'm in recovery mode, my coach assigned an easy run of 4 miles. I like to ride with a cycling group that meets Tuesdays, so I got that 4 done and then changed shoes and hopped on my bike for 22 miles. It was cold and I didn't have enough clothes on, so I rode fast to get home.
I'm feeling great and hope the rest of you are as well!
I am primarily a runner but absolutely love cycling as well. I am happy to say that I ran my fourth marathon of this calendar year on Sunday the 6th. Before my diagnoses, the most I had ever done in one year was two!
Since I'm in recovery mode, my coach assigned an easy run of 4 miles. I like to ride with a cycling group that meets Tuesdays, so I got that 4 done and then changed shoes and hopped on my bike for 22 miles. It was cold and I didn't have enough clothes on, so I rode fast to get home.
I'm feeling great and hope the rest of you are as well!
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: Biking with multiple myeloma
Great post, Ron.
I agree that so much about myeloma can totally consume your life if you let it, but I thinks it's also important to take control back any way we can, and exercise has to be right up there as one of the best ways to do this.
I'm currently on CyBorD (just finished today) and heading in for an ASCT in January.
Prior to my diagnosis in January 2014, I was running long distance (half marathon), playing soccer and had recently completed tough mudder. So it's pretty safe to say fitness was a big part of my life, but since diagnosis it has completely gone out the window. And things have been on a downward spiral.
The good news is that last week I found out from my doctors that I am being offered the chance to be included in a fitness and nutrition program, which includes a 12-week personal training regime and a nutritionist that will be overseen by the oncologist team and focus on my return to fitness and how that aids recovery.
I'm thinking about recording a week by week post with the ups and downs along with results if anyone is interested.
I agree that so much about myeloma can totally consume your life if you let it, but I thinks it's also important to take control back any way we can, and exercise has to be right up there as one of the best ways to do this.
I'm currently on CyBorD (just finished today) and heading in for an ASCT in January.
Prior to my diagnosis in January 2014, I was running long distance (half marathon), playing soccer and had recently completed tough mudder. So it's pretty safe to say fitness was a big part of my life, but since diagnosis it has completely gone out the window. And things have been on a downward spiral.
The good news is that last week I found out from my doctors that I am being offered the chance to be included in a fitness and nutrition program, which includes a 12-week personal training regime and a nutritionist that will be overseen by the oncologist team and focus on my return to fitness and how that aids recovery.
I'm thinking about recording a week by week post with the ups and downs along with results if anyone is interested.
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stu1975 - Name: Stu1975
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 38
Re: Biking with multiple myeloma
Stu,
That is a great idea, I am sure we would all be interested in your experience.
That is a great idea, I am sure we would all be interested in your experience.
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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