Hi Dana A,
Thanks for your post.
I take my dex around 8:00 a.m and get the Velcade shot around 2:00 p.m. on Wednesdays, after feeling great (no breathlessness while doing usual exercises), moderate fast walking on the golf course with my bag, etc.
Within an hour after the dex, I feel the breathlessness creep up while just walking around at a normal pace, or, like the other day, just doing some household chores. This was long before the Velcade shot of the week. I can feel the difference while driving to the chemo clinic, sort of a 'jitteriness' of nerves. Therefore, I am convinced that the dex is the main culprit for that side effect. And most physicians agree on this side effect of prednisone, Velcade, or other such medications taken at this level.
Yes, the tingling / neuropathy is a major concern and fortunately it lasts for a very short time and seems to occur days after the dex / Velcade combo on Wednesdays. I have to read my own posts to see if the there is a pattern. Again, my oncologist and other physicians have told me to keep a close watch on it (if it were to get worse or last longer).
I appreciate your compassionate concerns and hope your lambda chains are back within the normal range.
K_shash
Forums
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Biking with multiple myeloma
I have been on dex and Velcade going on 6 years. Since mid 2012, I take them every other week and schedule the Velcade shot on late Wednesday afternoons (so I can get two-thirds of a day in at work). I then wait and take the dex that evening so I can sleep Wednesday night. I find that it takes a few hours for the dex to kick in, so, if I wait, I sleep better that first night. Thursday is a dex high day and I usually have some insomnia on Thursday night. Friday the dex starts to wear off and Friday night I generally can sleep. Sometimes I take a Benadryl tablet before I go to bed on Fridays, which seems to help if insomnia lingers.
As far as exercise, I do a ride on Wednesday evening, but do not push it hard and take the dex after that ride, usually around 9 pm. So I do ride on the day I get the Velcade shot and it does not seem to bother me. On the weeks I get treatment, I lay off the bike on Thursday and Friday and go hard on Saturday, Sunday, Tuesday and light on Wednesday. On the non-treatment weeks, I will also do a ride on Thursdays, but always have Monday and Fridays off. This seems to work for me.
On treatment weeks during the spring and summer, I get in 130-150 miles. On non-treatment weeks, 150-180 miles. Of course, if it is a race or rally week, I will get in more miles on the weekend, but will cut back on the riding during the week so I am well rested for the event.
Once the time changes I can only ride outdoors on the weekends, and it is hit and miss in the winter. So I substitute the indoor trainer and spin classes in place of outdoor rides. Those are generally intense, but only last an hour in the evenings. A couple times a week I get up early and get in a 24 minute spin ride (high cadence, low resistance) on my trainer.
As far as exercise, I do a ride on Wednesday evening, but do not push it hard and take the dex after that ride, usually around 9 pm. So I do ride on the day I get the Velcade shot and it does not seem to bother me. On the weeks I get treatment, I lay off the bike on Thursday and Friday and go hard on Saturday, Sunday, Tuesday and light on Wednesday. On the non-treatment weeks, I will also do a ride on Thursdays, but always have Monday and Fridays off. This seems to work for me.
On treatment weeks during the spring and summer, I get in 130-150 miles. On non-treatment weeks, 150-180 miles. Of course, if it is a race or rally week, I will get in more miles on the weekend, but will cut back on the riding during the week so I am well rested for the event.
Once the time changes I can only ride outdoors on the weekends, and it is hit and miss in the winter. So I substitute the indoor trainer and spin classes in place of outdoor rides. Those are generally intense, but only last an hour in the evenings. A couple times a week I get up early and get in a 24 minute spin ride (high cadence, low resistance) on my trainer.
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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
Thanks so much, Ron Harvot.
My dex reaction follows a similar pattern, every week for the last 4 weeks.
I will, however, get my oncologist to allow me to take the dex at night, on the night of Velcade, particularly citing 'other examples'.
For some reason the pharmacist insisted that I take it with breakfast, on the day of Velcade in the mid-afternoon.
This little adjustment, along with a few other things I picked up (air bubble in the Velcade shot, in particular, and avoid sugar, use Benadryl, etc.) in these discussions on the Myeloma Beacon, have very much helped me make this treatment phase more tolerable.
Thanks again, Ron, and thanks, Myeloma Beacon, for making this discussion possible.
K_Shash
My dex reaction follows a similar pattern, every week for the last 4 weeks.
I will, however, get my oncologist to allow me to take the dex at night, on the night of Velcade, particularly citing 'other examples'.
For some reason the pharmacist insisted that I take it with breakfast, on the day of Velcade in the mid-afternoon.
This little adjustment, along with a few other things I picked up (air bubble in the Velcade shot, in particular, and avoid sugar, use Benadryl, etc.) in these discussions on the Myeloma Beacon, have very much helped me make this treatment phase more tolerable.
Thanks again, Ron, and thanks, Myeloma Beacon, for making this discussion possible.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Biking with multiple myeloma
Hi K_Shash,
I am not sure about this, but I think the dex may mitigate some of the worst effects of the Velcade. Early in my RVD treatment, I was rushing to catch the train into NYC for my Velcade shot and forgot to take my dex in the morning like usual. I got the shot in the late morning and, by late afternoon when I got home, I was feeling horrible, including having chills and no energy whatsoever. I guess sort of flu-like symptoms. I took the dex when I got home and a few hours later I was feeling close to normal again. Also, later in my treatment, the nurse administering the Velcade injection always asked if I had taken the dex already.
A lot of this may be dependent on the size of the Velcade dose. Unfortunately, I don't recall what my dose was at that time.
Mike
I am not sure about this, but I think the dex may mitigate some of the worst effects of the Velcade. Early in my RVD treatment, I was rushing to catch the train into NYC for my Velcade shot and forgot to take my dex in the morning like usual. I got the shot in the late morning and, by late afternoon when I got home, I was feeling horrible, including having chills and no energy whatsoever. I guess sort of flu-like symptoms. I took the dex when I got home and a few hours later I was feeling close to normal again. Also, later in my treatment, the nurse administering the Velcade injection always asked if I had taken the dex already.
A lot of this may be dependent on the size of the Velcade dose. Unfortunately, I don't recall what my dose was at that time.
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
mikeb,
Thanks for sharing your experience about the 'delayed' Dex after Velcade. It sure seems that the response to the multiple myeloma treatment and its side effects are so subjective. I will discuss this option with my oncologist but may not change my routine, since I have a 45 minute drive home from the chemo clinic. Except when my wife would accompany me. At least I know what to expect in my current routine and have not had any diarrhea or other symptoms after the Velcade.
However, I am now curious what my experience would be IF I wait to take the dex after the Velcade, at night.
K_Shash
Thanks for sharing your experience about the 'delayed' Dex after Velcade. It sure seems that the response to the multiple myeloma treatment and its side effects are so subjective. I will discuss this option with my oncologist but may not change my routine, since I have a 45 minute drive home from the chemo clinic. Except when my wife would accompany me. At least I know what to expect in my current routine and have not had any diarrhea or other symptoms after the Velcade.
However, I am now curious what my experience would be IF I wait to take the dex after the Velcade, at night.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Biking with multiple myeloma
From everything I have learned over the past 6 years, the timing of taking the dex (the day of Velcade) does not impact one way or the other the efficiency of the Velcade. Velcade stays in the system for a long time and takes some time to build. So taking the dex in the evening will not be a problem.
Also, the oncology nurses have told me to at least wait until after my blood draw to take the dex, since it causes false high glucose readings. With me, the difference is significant. They do a CBC and chemistry panel every time I get Velcade to make sure my counts are ok to receive an injection. My glucose goes way out of the normal range if I take the dex in the AM before they run the blood test. It is always normal when I have the test done before taking the dex.
Mike - I don't know about dex reducing the side effects of Velcade. That is a new one that I have not heard before. It may be though. Most people who have problems with Velcade suffer with PN. I don't think dex helps with that.
Ron
Also, the oncology nurses have told me to at least wait until after my blood draw to take the dex, since it causes false high glucose readings. With me, the difference is significant. They do a CBC and chemistry panel every time I get Velcade to make sure my counts are ok to receive an injection. My glucose goes way out of the normal range if I take the dex in the AM before they run the blood test. It is always normal when I have the test done before taking the dex.
Mike - I don't know about dex reducing the side effects of Velcade. That is a new one that I have not heard before. It may be though. Most people who have problems with Velcade suffer with PN. I don't think dex helps with that.
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
OK, y'all make me feel so guilty ...
I, too, in the last two years (I've been diagnosed for TWO YEARS?? Good heavens) have done a great deal of exercising.
You know, jumping to conclusions, chasing suppositions, intense speculation, sparring with physicians. But if you want to talk about physically, well ...
I climb my stairs a lot. Does that count?
Anyway, I decided that, to celebrate my decision to check off the one and only thing on my 'bucket list," I'd, well, go back to school. My kids WILL call me "Dr. Mom" before I croak, so help me.
To that end, I finally broke down ... and bought myself a tricycle.
I'm not racing any of you down mountain trails. I'm taking my Celadon Schwinn with three wheels, lovely big basket in the back and a 'saddle" that is actually wide enough to sit ON rather than 'around,' and am riding it all over the place.
It's fun, too.
... and it has big tires, so I can actually go places that those skinny racing bikes can't go. Hmn. Perhaps I might go on some of those mountain trails after all, carrying my blanket and picnic stuff in my basket in the back, and watch all you folks labor up and down. Sounds good to me, anyway.
I, too, in the last two years (I've been diagnosed for TWO YEARS?? Good heavens) have done a great deal of exercising.
You know, jumping to conclusions, chasing suppositions, intense speculation, sparring with physicians. But if you want to talk about physically, well ...
I climb my stairs a lot. Does that count?
Anyway, I decided that, to celebrate my decision to check off the one and only thing on my 'bucket list," I'd, well, go back to school. My kids WILL call me "Dr. Mom" before I croak, so help me.
To that end, I finally broke down ... and bought myself a tricycle.
I'm not racing any of you down mountain trails. I'm taking my Celadon Schwinn with three wheels, lovely big basket in the back and a 'saddle" that is actually wide enough to sit ON rather than 'around,' and am riding it all over the place.
It's fun, too.
... and it has big tires, so I can actually go places that those skinny racing bikes can't go. Hmn. Perhaps I might go on some of those mountain trails after all, carrying my blanket and picnic stuff in my basket in the back, and watch all you folks labor up and down. Sounds good to me, anyway.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Biking with multiple myeloma
Hi Ron,
That's very interesting about dex upping glucose. I noticed that my glucose level was usually somewhat high back in those Velcade days, but my medical team didn't seem concerned. Thinking about the schedule of when I'd get blood work done during the RVD induction and consolidation phases, it always would be on days after I'd already taken dex. I just thought I was having too much sugar in my coffee or something like that.
I've seen several other people say that they take dex in the evening on Velcade days and don't have any problems. So I may be an outlier, or that one day may have been an outlier day for me, or... There are lots of variables at work here!
Mike
That's very interesting about dex upping glucose. I noticed that my glucose level was usually somewhat high back in those Velcade days, but my medical team didn't seem concerned. Thinking about the schedule of when I'd get blood work done during the RVD induction and consolidation phases, it always would be on days after I'd already taken dex. I just thought I was having too much sugar in my coffee or something like that.
I've seen several other people say that they take dex in the evening on Velcade days and don't have any problems. So I may be an outlier, or that one day may have been an outlier day for me, or... There are lots of variables at work here!
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
Hi dianaiad,
Good for you for working to knock the one item off your bucket list. That's awesome that you've gone back to school. Are you working toward a Ph.D.? Or Ed.D.? Or M.D.? If Ph.D., what subject?
You can do it!
I got a chuckle out of your description of your exercise program since your diagnosis.
Have fun with your tricycle!
Mike
Good for you for working to knock the one item off your bucket list. That's awesome that you've gone back to school. Are you working toward a Ph.D.? Or Ed.D.? Or M.D.? If Ph.D., what subject?
You can do it!
I got a chuckle out of your description of your exercise program since your diagnosis.
Have fun with your tricycle!
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
Dianaiad,
Loved your post! The tricycle makes a great "grocery" bicycle. I converted my older aluminum road bike to a grocery bike. I took off the clipless pedals, added pannier bags and a rack to the back of the bike, and put fenders on it.
I live about 2 miles from a grocery store, so instead of getting in a car and driving, I now (weather permitting) ride my bike to the store. The pannier bags are detachable and I can take them into the store with me. The trike with the big basket would be perfect for that!
Ron
Loved your post! The tricycle makes a great "grocery" bicycle. I converted my older aluminum road bike to a grocery bike. I took off the clipless pedals, added pannier bags and a rack to the back of the bike, and put fenders on it.
I live about 2 miles from a grocery store, so instead of getting in a car and driving, I now (weather permitting) ride my bike to the store. The pannier bags are detachable and I can take them into the store with me. The trike with the big basket would be perfect for that!
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