Ron,
I totally agree with your goal-setting point. Because I am superstitious, I am keeping mine a secret until I hopefully achieve it.
Forums
Re: Biking with multiple myeloma
Andrew that was funny!
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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! I'm Gary. I had my stem cell transplant at MD Anderson on 4 Aug 15. As an avid cyclist, I needed my bike w me. I asked everybody about bringing my bike to the stem cell ward. No answer. Finally I went to the ward and asked. I got the answer I wanted.
On admission, I brought my bike and trainer to my room. Up to the day of the transplant, I was on my trainer. Even after pre-transplant chemo, I was on the trainer. Since the transplant, I've rode a lot on the trainer, and done elliptical. I've been outside once and the feeling was tremendous. I need to start riding outside on a more regular basis.
Keep cycling!!!
On admission, I brought my bike and trainer to my room. Up to the day of the transplant, I was on my trainer. Even after pre-transplant chemo, I was on the trainer. Since the transplant, I've rode a lot on the trainer, and done elliptical. I've been outside once and the feeling was tremendous. I need to start riding outside on a more regular basis.
Keep cycling!!!
Re: Biking with multiple myeloma
Gary,
Thanks for the post. Keep us updated about your progress. I am about to purchase a new trainer program for the winter. It is called Trainerroad. I have heard some good things about it so am going to give it a try.
I will be doing my final rally of the season this coming Saturday. It is the Turkey Roll held in Denton, Texas. I will be targeting the 100k ride. The weather for this event has been iffy over the years. This year the temp is supposed to be in the low 60s with no rain and just moderate wind. About as good as it gets for late November. The Turkey Roll is always held the Saturday before Thanksgiving.
Ron
Thanks for the post. Keep us updated about your progress. I am about to purchase a new trainer program for the winter. It is called Trainerroad. I have heard some good things about it so am going to give it a try.
I will be doing my final rally of the season this coming Saturday. It is the Turkey Roll held in Denton, Texas. I will be targeting the 100k ride. The weather for this event has been iffy over the years. This year the temp is supposed to be in the low 60s with no rain and just moderate wind. About as good as it gets for late November. The Turkey Roll is always held the Saturday before Thanksgiving.
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
I am late to your forum. I am a Roadie who was diagnosed in 2013 at age 65 with multiple myeloma with no bone involvement or bone pain. I was anemic for 2 years before diagnosis and attributed that and aging to why my endurance and energy was starting to cause me to have difficulty staying with my peers. My size precludes me from being a climber, but on the flats I was always able to hold my own.
I underwent 3 months of the usual chemo (Velcade, cyclophosphamide, and dex) and had a stem cell transplant in Nov 2013. I was able to ride 150/200 km a week during treatment, which was a blessing, as it helped alleviate the symptoms of 40 mg of dex 4 days on and 4 days off. I got back on my bike on a trainer in mid December and I was back riding on the road by mid January 2014. I live in Victoria, British Columbia, on Vancouver Island, where you can ride year round (although November through February can be a wet at times).
I continue to ride although not at my pre-multiple myeloma level as my hemoglobin is still low and as result my energy and endurance still suffers, although I still try and maintain 100/150 km a week. Spring and summer riding means more km/miles. The key for me is to turn the pedals. In addition, I am in the gym 2 to 3 times a week doing range of motion and weight bearing.
I did read that some of the participants have issues with neuropathy. This was big issue for me and was caused by the Velcade. I eventually found info at the Dana Farber site with respect to vitamin B supplementation. This worked well during treatment and recently had to utilize the same regimen again when the neuropathy returned after being ill while on an extended trip in Europe.
What is encouraging for me is the fact that you were diagnosed in 2009 and still going strong. My multiple myeloma is relapsing so will have to look at Revlimid in the future.
I underwent 3 months of the usual chemo (Velcade, cyclophosphamide, and dex) and had a stem cell transplant in Nov 2013. I was able to ride 150/200 km a week during treatment, which was a blessing, as it helped alleviate the symptoms of 40 mg of dex 4 days on and 4 days off. I got back on my bike on a trainer in mid December and I was back riding on the road by mid January 2014. I live in Victoria, British Columbia, on Vancouver Island, where you can ride year round (although November through February can be a wet at times).
I continue to ride although not at my pre-multiple myeloma level as my hemoglobin is still low and as result my energy and endurance still suffers, although I still try and maintain 100/150 km a week. Spring and summer riding means more km/miles. The key for me is to turn the pedals. In addition, I am in the gym 2 to 3 times a week doing range of motion and weight bearing.
I did read that some of the participants have issues with neuropathy. This was big issue for me and was caused by the Velcade. I eventually found info at the Dana Farber site with respect to vitamin B supplementation. This worked well during treatment and recently had to utilize the same regimen again when the neuropathy returned after being ill while on an extended trip in Europe.
What is encouraging for me is the fact that you were diagnosed in 2009 and still going strong. My multiple myeloma is relapsing so will have to look at Revlimid in the future.
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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
Welcome to the forum, Wayne.
Just as a quick follow-up to what you wrote about peripheral neuropathy ... you can find a long list of recommendations regarding supplements and other approaches for peripheral neuropathy from Dr. Paul Richardson of Dana-Farber in this forum posting.
Beacon Medical Advisor Dr. Ken Shain of the Moffitt Cancer Center also has made some recommendations here in the forum that you may want to consider. See, for example, this posting he made in June of 2012.
Just as a quick reference for anyone who is interested, this link will take you to almost 70 peripheral neuropathy-related discussions here in the forum.
That link, by the way, is one of the many quick links to forum discussions about specific treatments and side effects that you'll find in the "Useful links to existing forum discussions" posting that's always at the top of the Treatments & Side Effects section of the forum.
Just as a quick follow-up to what you wrote about peripheral neuropathy ... you can find a long list of recommendations regarding supplements and other approaches for peripheral neuropathy from Dr. Paul Richardson of Dana-Farber in this forum posting.
Beacon Medical Advisor Dr. Ken Shain of the Moffitt Cancer Center also has made some recommendations here in the forum that you may want to consider. See, for example, this posting he made in June of 2012.
Just as a quick reference for anyone who is interested, this link will take you to almost 70 peripheral neuropathy-related discussions here in the forum.
That link, by the way, is one of the many quick links to forum discussions about specific treatments and side effects that you'll find in the "Useful links to existing forum discussions" posting that's always at the top of the Treatments & Side Effects section of the forum.
Re: Biking with multiple myeloma
Wayne,
Sounds like you and I have similar stories. I was diagnosed in January 2011, but had also been anemic for some time prior and chalked it up to getting older (it was difficult to accept the first time my daughter out-paced me in one of our weekly rides).
I have continued to bike throughout the past five years though – including the first two years on Kyprolis (carfilzomib), Revlimid, dexamethasone (CRD), and the past two years on Revlimid / dex after relapsing. The bike rides are therapeutic for me, and I truly believe they help combat the effects of the drugs I'm on.
Sorry to hear you are relapsing. In my case, the Revlimid / dex has been able to keep me stable just over normal levels, so hopefully you'll find success with it too.
Sounds like you and I have similar stories. I was diagnosed in January 2011, but had also been anemic for some time prior and chalked it up to getting older (it was difficult to accept the first time my daughter out-paced me in one of our weekly rides).
I have continued to bike throughout the past five years though – including the first two years on Kyprolis (carfilzomib), Revlimid, dexamethasone (CRD), and the past two years on Revlimid / dex after relapsing. The bike rides are therapeutic for me, and I truly believe they help combat the effects of the drugs I'm on.
Sorry to hear you are relapsing. In my case, the Revlimid / dex has been able to keep me stable just over normal levels, so hopefully you'll find success with it too.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Biking with multiple myeloma
Wayne,
Thanks for the post. The amount of riding you are able to maintain is impressive, plus you are going to gym a couple of times of week!!
Unfortunetly relapse and Myeloma go hand and hand. My numbers are starting to fluctuate and I am anticipating a change in my protocal. I will be going in for my once every 2 weeks shot of Velcade and 16 mg of Dex later this afternoon. The weather in North Texas is supposed to be misserable this weekend so it looks like I will be riding my trainer.
My goals for this year have been mostly met. There are a couple that I won't meet though. One was a ride in the Davis Mountains up to the McDonald Observatory located in south west Texas. I couldn't coordinate this with my biking friends and did not want to go by myself in case something happened. I will put that on my list for next year. I also had targeted 6,000 miles for the year. I stand at just over 5,200 now. An El Nino forecast for wet and cold the rest of the year is making that goal look less likely. I don't count indoor trainer miles. Blame it on the weather!!
As we get closer to year end, lets think about, then post, our biking goals for 2016.
I am already targeting the Ultra Cup - a two man team doing a series of 4, 12 hours races.
I also expect to do the Hotter n Hell 100 and a few other rallies that I will pick. So altough my plans are not yet final, I have a pretty good idea of what I want to accomplish. One of my buddiies wants to do RAGBRI (ride accross Iowa), that is supposed to be fun and challenging.
Ron
Thanks for the post. The amount of riding you are able to maintain is impressive, plus you are going to gym a couple of times of week!!
Unfortunetly relapse and Myeloma go hand and hand. My numbers are starting to fluctuate and I am anticipating a change in my protocal. I will be going in for my once every 2 weeks shot of Velcade and 16 mg of Dex later this afternoon. The weather in North Texas is supposed to be misserable this weekend so it looks like I will be riding my trainer.
My goals for this year have been mostly met. There are a couple that I won't meet though. One was a ride in the Davis Mountains up to the McDonald Observatory located in south west Texas. I couldn't coordinate this with my biking friends and did not want to go by myself in case something happened. I will put that on my list for next year. I also had targeted 6,000 miles for the year. I stand at just over 5,200 now. An El Nino forecast for wet and cold the rest of the year is making that goal look less likely. I don't count indoor trainer miles. Blame it on the weather!!
As we get closer to year end, lets think about, then post, our biking goals for 2016.
I am already targeting the Ultra Cup - a two man team doing a series of 4, 12 hours races.
I also expect to do the Hotter n Hell 100 and a few other rallies that I will pick. So altough my plans are not yet final, I have a pretty good idea of what I want to accomplish. One of my buddiies wants to do RAGBRI (ride accross Iowa), that is supposed to be fun and challenging.
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
Thank you for your replies to my post. I am slowly building up the kilometers after being away on an extended trip in Europe for 8 weeks. Unfortunately came home with bronchitis, so this slowed the return to exercise. The immune system has not been working well post treatment and I seem to be going from one cold to another. I start IgG transfusions in a few weeks in an attempt to boost the system. The fact that I am active probably contributes to this, as the system does not have a chance to adequately recover. At any rate will keep pushing on.
I don't have any specific plans for 2016 other than put in the time and distance. I hope to be able to ride with my group more. I can ride the distance that they do, but my problem is the strength and endurance to keep up the cadence levels. May not come back, but I keep trying. We also may take the RV and head to California / Arizona in February / March and, if we do, will get some riding in. Particularly like riding segments of Highway 1 in California.
Will keep monitoring the forum.
I don't have any specific plans for 2016 other than put in the time and distance. I hope to be able to ride with my group more. I can ride the distance that they do, but my problem is the strength and endurance to keep up the cadence levels. May not come back, but I keep trying. We also may take the RV and head to California / Arizona in February / March and, if we do, will get some riding in. Particularly like riding segments of Highway 1 in California.
Will keep monitoring the forum.
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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
Wayne,
I think you meant IVIG not IgG infusions, but correct me if I am wrong. I have been on those for over 2 years since I had contracted viral meningitis and C-diff back in July of 2012. I get an IVIG infusion once a month.
They have really helped; I have not had any infections, not even a sinus infection, which I used to get 2 or 3 times a year. These infusions are expensive but I can attest to them working. I did a trip for 3 weeks to Italy this past spring and road the trains often with a lot of hacking and coughing people. I had no issues. I hiked and biked while I was there.
Hope it works for you as it did me.
Ron
I think you meant IVIG not IgG infusions, but correct me if I am wrong. I have been on those for over 2 years since I had contracted viral meningitis and C-diff back in July of 2012. I get an IVIG infusion once a month.
They have really helped; I have not had any infections, not even a sinus infection, which I used to get 2 or 3 times a year. These infusions are expensive but I can attest to them working. I did a trip for 3 weeks to Italy this past spring and road the trains often with a lot of hacking and coughing people. I had no issues. I hiked and biked while I was there.
Hope it works for you as it did me.
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