Go Ron!
All very ambitious goals but I have no doubt you will power through them!
I was excited today to see this thread come up again. It is my favorite.
Although running is my first love, cycling is a very close second. I completed a 107 mile (172 km) century ride a few weeks ago. It was long and hard and I thought I would not want to even see my bike for a week but I was back on in 2 days.
Please keep us updated as I want to hear all about ti!
Forums
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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
KimT,
I too have AL amyloidosis and multiple myeloma - I haven't met too many other people on this forum with both! I was diagnosed with AL first, then multiple myeloma two years later. I too had an auto SCT for the AL, which put me into complete response. The weird thing is my AL was lambda, but my multiple myeloma is kappa, non-secretory. So all through my multiple myeloma experience, my light chains have remained totally normal. The multiple myeloma was diagnosed on biopsy of a large, bone-destroying plasmacytoma in my sacrum.
My multiple myeloma is quite active, so I am on ongoing chemotherapy, but this current regimen is okay in terms of side effect.
I like to hike. One day I said to my husband, "Let's hike all the 4,000 footers in Maine!" There are 14 mountains in this state that rise above 4,000 feet. It must have been a dexamethasone day! Strangely he agreed, and he doesn't take dex!
Anyway, now we've done two of them - Saddleback and Old Speck. Old Speck was just a few weeks ago when I was feeling particularly good. It was 8 straight hours of hiking, and I swear only 5 minutes of that was flat. The other 7 hours and 55 minutes were either hiking up, or hiking down. And this was after an echo a few months ago showed some heart damage from carfilzomib! I guess my heart does okay for me after all!
There's nothing like summiting a mountain, going above the tree line after hiking for 4 hours, and having the wind blow in your face and hair, and having a 360 degree view of mountains all around - after having these diagnoses, having an SCT and a year of chemo. I see where the phrase "mountain top experience" comes from. But then you have to hike back down.
I too have AL amyloidosis and multiple myeloma - I haven't met too many other people on this forum with both! I was diagnosed with AL first, then multiple myeloma two years later. I too had an auto SCT for the AL, which put me into complete response. The weird thing is my AL was lambda, but my multiple myeloma is kappa, non-secretory. So all through my multiple myeloma experience, my light chains have remained totally normal. The multiple myeloma was diagnosed on biopsy of a large, bone-destroying plasmacytoma in my sacrum.
My multiple myeloma is quite active, so I am on ongoing chemotherapy, but this current regimen is okay in terms of side effect.
I like to hike. One day I said to my husband, "Let's hike all the 4,000 footers in Maine!" There are 14 mountains in this state that rise above 4,000 feet. It must have been a dexamethasone day! Strangely he agreed, and he doesn't take dex!
Anyway, now we've done two of them - Saddleback and Old Speck. Old Speck was just a few weeks ago when I was feeling particularly good. It was 8 straight hours of hiking, and I swear only 5 minutes of that was flat. The other 7 hours and 55 minutes were either hiking up, or hiking down. And this was after an echo a few months ago showed some heart damage from carfilzomib! I guess my heart does okay for me after all!
There's nothing like summiting a mountain, going above the tree line after hiking for 4 hours, and having the wind blow in your face and hair, and having a 360 degree view of mountains all around - after having these diagnoses, having an SCT and a year of chemo. I see where the phrase "mountain top experience" comes from. But then you have to hike back down.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Biking with multiple myeloma
TracyJ,
Good for you. I used to live in western PA and did some hiking when I was there, but nothing like Maine. I love that state. Setting goals and working toward them is what this thred is all about. Having multiple myeloma can get us down, we can let it consume us emotionally or focus on life and continue to challenge ourselves.
Ron
Good for you. I used to live in western PA and did some hiking when I was there, but nothing like Maine. I love that state. Setting goals and working toward them is what this thred is all about. Having multiple myeloma can get us down, we can let it consume us emotionally or focus on life and continue to challenge ourselves.
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
Good luck Ron, and take care! You must be acclimatized to the hot weather you have in Texas!! Hope all goes well with you and your friends from the cycling club.
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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
Tracy J,
I feel as though I know you. I have read some of your postings. When I was first diagnosed with amyloidosis, yours were probably some of the first I read.
I am glad to hear you are hiking. Sometimes it's a long road up, but the views are always worth it, right? I love a good challenge. I'm sure you do too.
I feel as though I know you. I have read some of your postings. When I was first diagnosed with amyloidosis, yours were probably some of the first I read.
I am glad to hear you are hiking. Sometimes it's a long road up, but the views are always worth it, right? I love a good challenge. I'm sure you do too.
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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
Finished the Hotter n Hell 100 accomplishing my goal of breaking 6 hours and setting my personal best time. Next up is the 12 hour 2 man Texas Time Trial race at the end of September. Now I have to switch to practicing more hill climbs.
Here is the certificate:
https://runsignup.com/Race/Results/24608/FinishersCert?resultSetId=13199&resultId=9520548#finishersCert
The big one for me is finishing 37th out of 161 in my age group. Top 78%. I also did better than 2/3rds of the total people that entered it the 100 mile event.
The rally also had shorter distances of 10K, 25,50 and 62 miles (100k). Over 12,000 people participated. They also have professional races including road races and criterieums for men, women, teens and master divisions. Also a big bike expo is held over a three day weekend. This is one of the biggest biking events in the U.S.
The weather conditions cooperated as the temp only topped out at 95 F (35 C) and the wind was relatively light - under 10 mph (16 kph).
Ron
Here is the certificate:
https://runsignup.com/Race/Results/24608/FinishersCert?resultSetId=13199&resultId=9520548#finishersCert
The big one for me is finishing 37th out of 161 in my age group. Top 78%. I also did better than 2/3rds of the total people that entered it the 100 mile event.
The rally also had shorter distances of 10K, 25,50 and 62 miles (100k). Over 12,000 people participated. They also have professional races including road races and criterieums for men, women, teens and master divisions. Also a big bike expo is held over a three day weekend. This is one of the biggest biking events in the U.S.
The weather conditions cooperated as the temp only topped out at 95 F (35 C) and the wind was relatively light - under 10 mph (16 kph).
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
Way to go Ron. Keep it up. Gotta have goals.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
That's excellent, Ron! Congratulations!
By the way, I like how you said the temperature was "only" 95. That might not seem like much to you, but that's pretty darn hit to me!
Keep on trucking!
Mike
By the way, I like how you said the temperature was "only" 95. That might not seem like much to you, but that's pretty darn hit to me!
Keep on trucking!
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
I'm hesitant to pile on here, but I also have to add my congratulations, Ron. It's great that you did so well. Thanks for keeping us posted on how the races are going.
Re: Biking with multiple myeloma
My 73-year-old husband is a little bummed out that he has to put his bike away. He has widespread lytic lesions and he asked his doctor about biking and was told not to do it as a fall would be bad due to fracture risk. He has fallen several times in the past due to loss of depth perception due to macular degeneration in one eye. Fortunately, he never broke any bones, but that was before his diagnosis a few weeks ago.
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Halches - Name: Carol S
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 7/15
- Age at diagnosis: 73