Cycling and Multiple Myeloma

[93legendti]

I have a dear friend who has multiple myeloma. He is a cyclist. Nothing technical - usually local nature paths/trails with his dog.

He is responding really well to treatment. He feels great. We walk for about an hour a day at a brisk pace.

He has had 4 fractures repaired via kyphoplasty (sic). He isn't having back pain anymore.

A few weeks ago his dr told him that if he fell off his bike it could be "catastrophic".

Friday his dr told him that the risk of new fractures to his back had been "significantly reduced".

His dr isn't a cyclist, so I am trying to gather additional information for him.

Does anyone have any expertise/knowledge about multiple myeloma?

[don compton]

As laymen, how can we criticized?

[numbskull]

Ugh.

This is a bad one. He is likely to die from it within a few years. Stem cell transplantation sometimes can offer a cure, but is no walk in the park itself and many patients are not considered candidates. I don't think they offer it until routine treatment has failed (which it eventually almost always does) but I'm sure his oncologist would have discussed this with him.

The fractures occur because the malignant cells proliferate in and weaken the bones. During treatment these cells diminish temporarily then recur with inevitable relapses. I think medicines to strengthen bones and reduce the risk of pathological fractures are often prescribed. Unfortunately, pathological fractures often do not heal well so they may result in permanent disability and pain.

What makes sense for your friend depends a lot on his disease stage and what risk he is willing to accept. No question his risk of fractures is increased. If it is early, he has been treated, and is on bisphosphonates for his bones the risk may not be too excessive. If, however, he has later stage disease then he has to weigh the enjoyment he gets from his bike vs the impaired quality of his remaining life span a non-healing fracture might produce. It is also worth understanding that significant anemia is a typical result of both the illness and its treatment. Eventually, his exercise capacity might easily diminish to the point where riding a bike becomes unpleasantly exhausting.

Good luck to both of you. This will be tough.

[93legendti]

Ugh.

This is a bad one. He is likely to die from it within a few years. Stem cell transplantation sometimes can offer a cure, but is no walk in the park itself and many patients are not considered candidates. I don't think they offer it until routine treatment has failed (which it eventually almost always does) but I'm sure his oncologist would have discussed this with him.

The fractures occur because the malignant cells proliferate in and weaken the bones. During treatment these cells diminish temporarily then recur with inevitable relapses. I think medicines to strengthen bones and reduce the risk of pathological fractures are often prescribed. Unfortunately, pathological fractures often do not heal well so they may result in permanent disability and pain.

What makes sense for your friend depends a lot on his disease stage and what risk he is willing to accept. No question his risk of fractures is increased. If it is early, he has been treated, and is on bisphosphonates for his bones the risk may not be too excessive. If, however, he has later stage disease then he has to weigh the enjoyment he gets from his bike vs the impaired quality of his remaining life span a non-healing fracture might produce. It is also worth understanding that significant anemia is a typical result of both the illness and its treatment. Eventually, his exercise capacity might easily diminish to the point where riding a bike becomes unpleasantly exhausting.

Good luck to both of you. This will be tough.

Thank you, but I am not sure you are up on the latest Multiple Myeloma treatments. 90% survivor rates. Now the disease is considered "mild, treatable, chronic and no longer a death sentence" according to his doc and his brother in law ( who is also a friend) who is a leading cancer dr in NY...My friend's treatment is state of the art with a new drug that wasn't even around 2 yrs ago. Mayo Clinic confirmed the treatment...I have been in on the discussions.

They are moving up stem cell because his protein numbers went down 27% and then 37% in the last 2 cycles of chemo. The stem cell treatment was moved up because his numbers are dropping so low and his health is so good.

[numbskull]

Thank you, but I am not sure you are up on the latest Multiple Myeloma treatments. 90% survivor rates. Now the disease is considered "mild, treatable, chronic and no longer a death sentence".

Best I not comment any further on the above.
Good to hear your friend has excellent doctors.

[malcolm]

Thank you, but I am not sure you are up on the latest Multiple Myeloma treatments. 90% survivor rates. Now the disease is considered "mild, treatable, chronic and no longer a death sentence" according to his doc and his brother in law ( who is also a friend) who is a leading cancer dr in NY...My friend's treatment is state of the art with a new drug that wasn't even around 2 yrs ago. Mayo Clinic confirmed the treatment...I have been in on the discussions.

They are moving up stem cell because his protein numbers went down 27% and then 37% in the last 2 cycles of chemo. The stem cell treatment was moved up because his numbers are dropping so low and his health is so good.

I'm not going to get into it but a lot depends on age of onset and specific cell type. I'll agree it's much more survivable than in the past for the majority. Depends on the form/type.
Good luck to you and your friend and glad he has your support.

[Black Dog]

My mother died of Multiple Malignant Myeloma. Still, she had 11 mostly good years with the cancer, treatments have come a long way since then. His risk of fracture will be dependent on the bone destiny of his pelvis and effected vertebrae. If the treating doctor feels that he is ok then he is ok. That being said the mechanism of a fall from a bike can often cause pelvic trauma. There is no way we can offer any good advice hear that will supersede his doc's advice based on x-ray or bone density scans. Best of wishes to your friend.

[93legendti]

My mother died of Multiple Malignant Myeloma. Still, she had 11 mostly good years with the cancer, treatments have come a long way since then. His risk of fracture will be dependent on the bone destiny of his pelvis and effected vertebrae. If the treating doctor feels that he is ok then he is ok. That being said the mechanism of a fall from a bike can often cause pelvic trauma. There is no way we can offer any good advice hear that will supersede his doc's advice based on x-ray or bone density scans. Best of wishes to your friend.

Thanks, I am sorry for your loss. My Dad died from cancer 20 yrs ago.

I realize the question was hard to answer...mostly I was hoping to find out if it is a red line that can't be crossed, or a possibility, based upon his circumstances.

My friend is in his mid 50's, so hopefully he has a long future. He is in great spirits, looks good and his weight is stable.

if I recall correctly, one of the pills he takes, at a cost of $25,000/month, was just approved in the last 6 months.

Tom Brokaw wrote a book about his Multiple Myeloma.

[paredown]

Sorry to hear about your friend.

I have no comment on the illness itself, but if the object is to stay safe while riding and minimize the fall risk, there are always trikes and recumbents (I know, going to the dark side).

But I think quality of life matters, and if getting out on a bike of some sort makes your friend happy, then do what must be done to get out there safely.

[staggerwing]

Perhaps a solution to reducing risk, in regards to cycling and staying active, is switching to a recumbent rig of either the 2 or 3 wheel variety.

I would certainly consider going there if faced with the prospect of having to curtail conventional cycling.

Hah, apparently we were thinking in parallel.

[Black Dog]

Thanks, I am sorry for your loss. My Dad died from cancer 20 yrs ago.

I realize the question was hard to answer...mostly I was hoping to find out if it is a red line that can't be crossed, or a possibility, based upon his circumstances.

My friend is in his mid 50's, so hopefully he has a long future. He is in great spirits, looks good and his weight is stable.

if I recall correctly, one of the pills he takes, at a cost of $25,000/month, was just approved in the last 6 months.

Tom Brokaw wrote a book about his Multiple Myeloma.

Thanks, it has been 15 years for me. Sorry about your dad. If he is at a slightly elevated risk of fracture and he is riding in a way that would reduce the likelihood of a crash then why not ride if the benefits are worth the risk. Remember, it is not speed that will lead to the fracture, it is the distance that he will fall as the bike goes over, that is the same at any speed. Slow speed will not necessarily be safer than high speed in this regard.

[93legendti]

Thanks again for all the input. I just talked to my friend. He reminded me that his dr is already talking about maintenance doses when his blood protein gets to 0; he has gotten 3 rounds of bone strengthening meds; the $25,000/month meds have been out a year or so, not 3 months like I thought; and he walked another hour last night with his dog.


Thanks, it has been 15 years for me. Sorry about your dad. If he is at a slightly elevated risk of fracture and he is riding in a way that would reduce the likelihood of a crash then why not ride if the benefits are worth the risk. Remember, it is not speed that will lead to the fracture, it is the distance that he will fall as the bike goes over, that is the same at any speed. Slow speed will not necessarily be safer than high speed in this regard.

Thank you.

I agree about speed. My worst fall was a slow speed fall while road riding. Anyway, he isn't adamant about riding at all costs. He is reasonable and will listen. I seem to have his ear and I would talk him out of it if it is a bad idea.

Right now the riding issue is moot, because he is meeting with the stem cell dr next week and they are looking at April or May to do it.

Thanks again for all the responses.

[93legendti]

Perhaps a solution to reducing risk, in regards to cycling and staying active, is switching to a recumbent rig of either the 2 or 3 wheel variety.

I would certainly consider going there if faced with the prospect of having to curtail conventional cycling.

Hah, apparently we were thinking in parallel.

I agree.

Sorry to hear about your friend.

I have no comment on the illness itself, but if the object is to stay safe while riding and minimize the fall risk, there are always trikes and recumbents (I know, going to the dark side).

But I think quality of life matters, and if getting out on a bike of some sort makes your friend happy, then do what must be done to get out there safely.

Thank you.