An update. I had a echocardiogram done and it revealed that the stenosis I was diagnosed with in the fall of 2008 has now progressed into the severe range (diameter is now .88 cm, and anything less than 1 cm is considered severe). After that I was referred to a heart surgeon and we discussed my situation. He said I will have to have valve replacement surgery sometime this year but the timing is up to me.
Our first grandchild (a little girl) is to be born this May, and my youngest son is graduating from college in early August. So I am going to hold off until the fall and then have the surgery. They are going to put a tissue (pig) valve in since the mechanical valves require you to be on Coumadin the rest of your life. He said that it will be a minimally invasive surgery, but I will be off the bike for about 6 weeks since the sternum will have a 4 inch incision. He said that I can return to normal activity as soon as I recover and should have more stamina since the heart will be able to pump more efficiently.
In the meantime, I continue to ride and have logged almost 900 miles this year. Today I felt great and did a 57 mile ride on a rolling course at average speed of just over 16 mph. My heart rate got up to 170 and my average for the 3 1/2 hour ride was 146. I did not feel any chest discomfort but did get winded on a long up hill pull into the wind and had to back off.
I am entering a 12 hour solo ride outside of Houston (Bessie Creek) the first weekend of April. It is a relatively flat 21 mile course that you do laps around. I did this last year as part of a two man team but my teammate moved so I am trying it solo. I intend to pace myself and take breaks between laps. I am targeting 6-7 laps or 128 - 150 miles.
I have some other rallies planned for this year so I will do what I can and see how it goes, backing off if I feel fatigued.
So far my multiple myeloma remains in a remissive state. I continue to be on a maintenance protocol of a Velcade shot once every 2 weeks accompanied by 8 mg of dex. I also get an IVIG infusion once each month. I have an infusion and a treatment scheduled for the week of the Bessie Creek race. I had it moved to Tuesday so that I will have 3 full days to work off the effects of the treatment. From my experience that should be enough time for me to be able to ride this race free of the side effects.
Ron
Forums
-
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
Ron,
Seeing my post above yours reminded me that I should post an update to my 1/16 message.
I had my transplant on 1/28 and was discharged for outpatient care the next day. It took several days but I started riding the stationary bike at home. I was limited to about 20 minutes at a time; I still had the central line in and was not allowed to sweat. So I also took walks in the frigid weather just to get outside and feel a bit normal.
Once the line was removed on 2/25 I started to ride longer, eventually getting up to 90 minutes. I won't lie. It wasn't the most fun in the world. But I felt compelled to try to increase my stamina. Once we started to get some warm days I got outside to ride. The first ride was for a little over an hour, and I was ready for it to end. But I have kept at it.
This past weekend I rode outside -- 2.5 hours Friday, and close to 3 hours each on Saturday and Sunday. Yes, I was more sore than I normally would have been, but it has helped me to begin feeling "normal" again.
I also started back to work on 3/3 and have been going to the gym every workday as well.
I realize that everyone's reaction to transplant is different, and some were less active than others prior to transplant. But I am convinced, as many others have mentioned, that physical activity can be a real benefit in recovery and overall well-being.
Seeing my post above yours reminded me that I should post an update to my 1/16 message.
I had my transplant on 1/28 and was discharged for outpatient care the next day. It took several days but I started riding the stationary bike at home. I was limited to about 20 minutes at a time; I still had the central line in and was not allowed to sweat. So I also took walks in the frigid weather just to get outside and feel a bit normal.
Once the line was removed on 2/25 I started to ride longer, eventually getting up to 90 minutes. I won't lie. It wasn't the most fun in the world. But I felt compelled to try to increase my stamina. Once we started to get some warm days I got outside to ride. The first ride was for a little over an hour, and I was ready for it to end. But I have kept at it.
This past weekend I rode outside -- 2.5 hours Friday, and close to 3 hours each on Saturday and Sunday. Yes, I was more sore than I normally would have been, but it has helped me to begin feeling "normal" again.
I also started back to work on 3/3 and have been going to the gym every workday as well.
I realize that everyone's reaction to transplant is different, and some were less active than others prior to transplant. But I am convinced, as many others have mentioned, that physical activity can be a real benefit in recovery and overall well-being.
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Update on Bessie Creek ride.
Despite my multiple myeloma and diagnosis of aortic heart stenosis, I went ahead and did the 12 hour solo event this past weekend. I ended up doing better than I even dreamed of doing, covering 167.1 miles in 12 hours and 30 min. The time trial race started at 7:00 am and I road until 7:30 pm. The race actually ended at 7:00 pm, but since I did a prorated lap I had to ride back and that took another 30 min.
I took short breaks to eat and rest between laps on the 21.4 mile course located in Brookshire, Texas. I used a HR monitor and tried to keep my HR to between 135 and 145, backing off when it went much higher (max was 163 on a hilly portion of the ride). I did 7 full laps and a prorated 8th. According to the HR monitor, I burned 6439 calories during the ride.
Every part of my body was pretty sore, but I had a great sense of self accomplishment. It is as much a mental challenge as a physical one. On my 4th lap, I was really thinking of quitting, but after I completed it and rested a little, I had a second wind and felt more determined than ever. Originally I thought 6 laps or 128 miles would be a good day, so doing more than 7 was beyond my expectations.
I am still going to have the heart valve replacement surgery but am trying to put it off until the fall.
Ron
Despite my multiple myeloma and diagnosis of aortic heart stenosis, I went ahead and did the 12 hour solo event this past weekend. I ended up doing better than I even dreamed of doing, covering 167.1 miles in 12 hours and 30 min. The time trial race started at 7:00 am and I road until 7:30 pm. The race actually ended at 7:00 pm, but since I did a prorated lap I had to ride back and that took another 30 min.
I took short breaks to eat and rest between laps on the 21.4 mile course located in Brookshire, Texas. I used a HR monitor and tried to keep my HR to between 135 and 145, backing off when it went much higher (max was 163 on a hilly portion of the ride). I did 7 full laps and a prorated 8th. According to the HR monitor, I burned 6439 calories during the ride.
Every part of my body was pretty sore, but I had a great sense of self accomplishment. It is as much a mental challenge as a physical one. On my 4th lap, I was really thinking of quitting, but after I completed it and rested a little, I had a second wind and felt more determined than ever. Originally I thought 6 laps or 128 miles would be a good day, so doing more than 7 was beyond my expectations.
I am still going to have the heart valve replacement surgery but am trying to put it off until the fall.
Ron
-
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
Ron and Andrew, just catching up to the posts here. I have been avoiding reading the Beacon ... trying to catch some "normal" in life without the thoughts of multiple myeloma. Tough to do!
Aredia and my bones seem to like each other. Although I haven't been on my bike and plan to sell my TT bike, I still have hope to ride the road again. Have been lifting light weights and walk / jogging. The Velcade knocks me for a couple of weeks, and I got sick. Finally, after 2 1/2 weeks of fighting bacteria and viruses back to back, I'm feeling decent again.
Anyway, enough complaining. Life is good. My wife and I are playing bridge competitively for the first time in many years. I'm having less bone pain than after the transplant. So all in all it's good!
Best to both of you,
Wind at your back,
Gary
Aredia and my bones seem to like each other. Although I haven't been on my bike and plan to sell my TT bike, I still have hope to ride the road again. Have been lifting light weights and walk / jogging. The Velcade knocks me for a couple of weeks, and I got sick. Finally, after 2 1/2 weeks of fighting bacteria and viruses back to back, I'm feeling decent again.
Anyway, enough complaining. Life is good. My wife and I are playing bridge competitively for the first time in many years. I'm having less bone pain than after the transplant. So all in all it's good!
Best to both of you,
Wind at your back,
Gary
-
Radbadad - Name: Radbadad
- When were you/they diagnosed?: 7/19/2011
- Age at diagnosis: 62
Re: Biking with multiple myeloma
I thought that I would resurrect this thread. I have posted to it several times over the past year, but it continues to be one of my favorites.
Before getting to my point, I want to send prayers and best wishes out to its author Ron, who I know was scheduled for heart surgery earlier this week. Get well soon and get back your bike Ron.
As I mentioned earlier in the thread, I found Ron's post among the most inspiring that I have seen since my own diagnosis. Last summer, when I was suffering from the combination of bone pain from multiple myeloma and a severe reaction to Zometa that rendered me virtually unable to walk, I thought that I might never be able to ride again. But this thread inspired me to try.
Sure enough, slowly I was able to start riding again. Still, the the year was one of my lowest mileage years in recent memory.
So I am here to report that, despite having an auto transplant at the end of January of this year and thus getting a late start to the season, I recently passed last year's mileage. And it's not even the end of August!
Hoping I am not jinxing myself, but if I can keep this going, it should be a relatively normal mileage year. So I urge all of you who are able to get out and turn the pedals.
Before getting to my point, I want to send prayers and best wishes out to its author Ron, who I know was scheduled for heart surgery earlier this week. Get well soon and get back your bike Ron.
As I mentioned earlier in the thread, I found Ron's post among the most inspiring that I have seen since my own diagnosis. Last summer, when I was suffering from the combination of bone pain from multiple myeloma and a severe reaction to Zometa that rendered me virtually unable to walk, I thought that I might never be able to ride again. But this thread inspired me to try.
Sure enough, slowly I was able to start riding again. Still, the the year was one of my lowest mileage years in recent memory.
So I am here to report that, despite having an auto transplant at the end of January of this year and thus getting a late start to the season, I recently passed last year's mileage. And it's not even the end of August!
Hoping I am not jinxing myself, but if I can keep this going, it should be a relatively normal mileage year. So I urge all of you who are able to get out and turn the pedals.
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
I had open heart surgery this past Tuesday (August 19). The surgery was to replace a bicuspid aortic valve with a tissue (pig) valve. Two weeks earlier, they did a catheterization test and determined that I did not have any coronary disease, so the procedure was done with a minimally invasive technique.
That term is relative as it was invasive, since they had to cut the sternum about 4 inches to get to the upper part of the heart, put me on a heart lung machine, shut down the heart, removed and replaced the valve, started the heart back up, and then stitched me up. Just a walk in the park!! The only thing minimal about it was that they did not have to cut the entire sternum, so my recovery time should be shorter.
The day before the procedure, my oncologist ordered an IVIG infusion to boost my immune system, making it as fully responsive as possible before the surgery. I was also given a short reprieve from my maintenance chemo, as I have not had any dex or Velcade since August 6 and will not return until September 3. Not a long break, but heck, I will take it!!
The week leading up to the surgery I did 3 rides of 21, 29 and 43 miles for a total of 93 miles. My last ride was on the Saturday before the surgery, or only 2 days prior. For the year I am just over 3,100 miles.
My surgeon said the valve opening was only 0.61cm, which indicated very severe stenosis of the valve. A normal aortic valve is around 3.5 cm. They were shocked when I told them the level I road at and were somewhat amazed that I could do it.
The biking has helped my recovery as they let me go home Saturday - a day earlier than what they had originally forecasted.
So I am home and off pain medication. I am doing slow but multiple walks and even have my trainer set up in our game room. I reversed the aero bars I put on it so that I can ride more upright (avoid any pressure on the sternum). The surgeon indicated that I should be able to drive in 2 weeks and could start riding outside in about a month.
I did a 20 min spin on the trainer today, keeping the bike in the lowest gear and smallest ring. I will gradually pick up time, cadence, and resistance over the next few weeks. I am planning to do the Turkey Roll 100k rally in mid November. My surgeon, based on my attitude and response so far, thinks that is certainly within reason.
For those on this board that were aware of my surgery, thank you for your prayers and support.
May the wind always be at your back!
Ron
That term is relative as it was invasive, since they had to cut the sternum about 4 inches to get to the upper part of the heart, put me on a heart lung machine, shut down the heart, removed and replaced the valve, started the heart back up, and then stitched me up. Just a walk in the park!! The only thing minimal about it was that they did not have to cut the entire sternum, so my recovery time should be shorter.
The day before the procedure, my oncologist ordered an IVIG infusion to boost my immune system, making it as fully responsive as possible before the surgery. I was also given a short reprieve from my maintenance chemo, as I have not had any dex or Velcade since August 6 and will not return until September 3. Not a long break, but heck, I will take it!!
The week leading up to the surgery I did 3 rides of 21, 29 and 43 miles for a total of 93 miles. My last ride was on the Saturday before the surgery, or only 2 days prior. For the year I am just over 3,100 miles.
My surgeon said the valve opening was only 0.61cm, which indicated very severe stenosis of the valve. A normal aortic valve is around 3.5 cm. They were shocked when I told them the level I road at and were somewhat amazed that I could do it.
The biking has helped my recovery as they let me go home Saturday - a day earlier than what they had originally forecasted.
So I am home and off pain medication. I am doing slow but multiple walks and even have my trainer set up in our game room. I reversed the aero bars I put on it so that I can ride more upright (avoid any pressure on the sternum). The surgeon indicated that I should be able to drive in 2 weeks and could start riding outside in about a month.
I did a 20 min spin on the trainer today, keeping the bike in the lowest gear and smallest ring. I will gradually pick up time, cadence, and resistance over the next few weeks. I am planning to do the Turkey Roll 100k rally in mid November. My surgeon, based on my attitude and response so far, thinks that is certainly within reason.
For those on this board that were aware of my surgery, thank you for your prayers and support.
May the wind always be at your back!
Ron
-
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
Andrew,
It is fantastic isn't it! Already broke last years mileage and getting back to "normal". With you, a normal year is more than I usually do, and I do a lot.
I am absolutely convinced that biking has helped me with multiple myeloma. By getting in good shape, the body is much better at fighting off the effects of the disease and allows you to tolerate the chemo much easier.
My recent surgery just solidified that, as I am already home recovering and off of pain meds!!
Ron
It is fantastic isn't it! Already broke last years mileage and getting back to "normal". With you, a normal year is more than I usually do, and I do a lot.
I am absolutely convinced that biking has helped me with multiple myeloma. By getting in good shape, the body is much better at fighting off the effects of the disease and allows you to tolerate the chemo much easier.
My recent surgery just solidified that, as I am already home recovering and off of pain meds!!
Ron
-
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
Ron,
I was hoping that my post would provoke a report on your surgery. Sounds like all went well and you are recovering nicely. Glad to see that you have a plan to ramp up the physical activity and a goal to do a ride in November. Keep us posted on how you are doing.
I was hoping that my post would provoke a report on your surgery. Sounds like all went well and you are recovering nicely. Glad to see that you have a plan to ramp up the physical activity and a goal to do a ride in November. Keep us posted on how you are doing.
-
goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Biking with multiple myeloma
Best Wishes on your recovery from the heart surgery, Ron! You are always so encouraging of getting us all out exercising. I am sure you will do fine with your recovery. It's just amazing as to how medical treatments can get us back on our feet (or pedals) again!
-
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
Hi Ron,
I'm glad to hear that your surgery went well and that your recovery is coming along well too. Keep up the good work!
I'm glad to hear that your surgery went well and that your recovery is coming along well too. Keep up the good work!
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55