I have been on maintenance (every other week) with Velcade and dexamethasone since September, 2015. I had a stem cell transplant in October, 2014, so I'm just coming up on my 4-year anniversary. Prior to the Velcade-dex maintenance, I was on Velcade, Revlimid, and dexamethasone as maintenance between March, 2015 and September 2015. I had to come off of the Revlimid due to side effects.
So far, so good. I am in stringent complete remission (sCR), which I am very thankful for, indeed. My oncologist wants me to continue with maintenance until progression. Lately, I am noticing that my red blood cell counts (RBC) are dipping a bit lower.
Is the change in my red blood cell counts most likely a result of the Velcade maintenance, or is it more likely to be a sign that the myeloma might be coming back?
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Re: RBC level dipping on Velcade maintenance: why?
One of the side effects of Velcade can be a lower red blood count. If your myeloma markers are all good, then it is probably the Velcade,. You have been on Velcade for a number of years, so I am a bit surprised it has not been an issue in the past. Are your hemoglobin and hematocrit levels low as well? If they are normal or near normal, there is probably nothing to worry about. You can always ask you oncologist if you are concerned.
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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: RBC level dipping on Velcade maintenance: why?
Hi Ron,
Thanks for the reply. My hemoglobin and hematocrit are normal, but have been trending a little bit lower recently, too. All three had been well in the normal range for the last two years or so. Only recently have they begun to slip. I would love to take a break from treatment to see if that affects the counts. But my oncologist basically says, "if it's not broke ..." So for now, I am going to take more vitamins and eat more meat, since I am not a big meat eater.
I realize that I am very fortunate if this is all I have to worry about. No complaints!
Thanks for the reply. My hemoglobin and hematocrit are normal, but have been trending a little bit lower recently, too. All three had been well in the normal range for the last two years or so. Only recently have they begun to slip. I would love to take a break from treatment to see if that affects the counts. But my oncologist basically says, "if it's not broke ..." So for now, I am going to take more vitamins and eat more meat, since I am not a big meat eater.
I realize that I am very fortunate if this is all I have to worry about. No complaints!
Re: RBC level dipping on Velcade maintenance: why?
Helen,
If the Velcade is causing your drop in the red blood cell count and related hemoglobin and hematocrit levels, adding in additional iron (red meat) and vitamins will not really improve the count. (Been down that road myself.) Just monitor and if they really drop low then something other than Velcade may have to be tried. Unfortunately, almost all of the novel agents list lower red counts (and white counts) as potential side effects. Revlimid affects me more than Velcade, and in a combination regimen you double your fun and the counts go lower. However, unless they go way down to the point of fatigue, you are probably fine.
My red count with Revlimid, Velcade, and dexamethasone (RVD) is 3.7-4 most of the time. My white count is below normal as well, also in 3s. However, you may have read some of my posts on biking, so as you can see it has not held me back from staying active. Staying physically active helps your overall health, which is very important in fighting multiple myeloma.
If the Velcade is causing your drop in the red blood cell count and related hemoglobin and hematocrit levels, adding in additional iron (red meat) and vitamins will not really improve the count. (Been down that road myself.) Just monitor and if they really drop low then something other than Velcade may have to be tried. Unfortunately, almost all of the novel agents list lower red counts (and white counts) as potential side effects. Revlimid affects me more than Velcade, and in a combination regimen you double your fun and the counts go lower. However, unless they go way down to the point of fatigue, you are probably fine.
My red count with Revlimid, Velcade, and dexamethasone (RVD) is 3.7-4 most of the time. My white count is below normal as well, also in 3s. However, you may have read some of my posts on biking, so as you can see it has not held me back from staying active. Staying physically active helps your overall health, which is very important in fighting multiple myeloma.
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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: RBC level dipping on Velcade maintenance: why?
Hi Ron,
I always read the biking thread and am consistently amazed at what you guys accomplish! It would be great for anyone, let alone someone battling a disease like multiple myeloma!
Before multiple myeloma, I worked out for about an hour 5 days per week. When I became ill, I pretty much stopped, which was probably a mistake, but the stem cell transplant really knocked me for a loop! Only recently, I have gotten back into somewhat of an exercise routine, although I cannot do nearly what I used to, (high impact aerobics, kickboxing, weights). I do manage a couple of yoga classes per week, and I try to walk a mile or more if I can everyday.
I am fortunate that I really had no bone destruction from the multiple myeloma, although I do have some small scattered lytic lesions and osteoporosis, which I had many years before diagnosis. I also have arthritis, which is pretty bad in my feet, so this can be a challenge. But, I'm trying to do what I can. I understand staying in condition is important.
In the last few months my dexamethasone has been reduced from 12 mg to 8 mg twice per month. I'm thinking this may have had an effect on the RBC as well. WBC is fine, lymphocytes are sometimes on the low side, granulocytes sometimes high. Since I get labs every other week, I'm so aware of every little change, and you know, waiting for the inevitable relapse......
Thanks for your input. Keep ridin'!
I always read the biking thread and am consistently amazed at what you guys accomplish! It would be great for anyone, let alone someone battling a disease like multiple myeloma!
Before multiple myeloma, I worked out for about an hour 5 days per week. When I became ill, I pretty much stopped, which was probably a mistake, but the stem cell transplant really knocked me for a loop! Only recently, I have gotten back into somewhat of an exercise routine, although I cannot do nearly what I used to, (high impact aerobics, kickboxing, weights). I do manage a couple of yoga classes per week, and I try to walk a mile or more if I can everyday.
I am fortunate that I really had no bone destruction from the multiple myeloma, although I do have some small scattered lytic lesions and osteoporosis, which I had many years before diagnosis. I also have arthritis, which is pretty bad in my feet, so this can be a challenge. But, I'm trying to do what I can. I understand staying in condition is important.
In the last few months my dexamethasone has been reduced from 12 mg to 8 mg twice per month. I'm thinking this may have had an effect on the RBC as well. WBC is fine, lymphocytes are sometimes on the low side, granulocytes sometimes high. Since I get labs every other week, I'm so aware of every little change, and you know, waiting for the inevitable relapse......
Thanks for your input. Keep ridin'!
Re: RBC level dipping on Velcade maintenance: why?
Just thought I would offer a follow up. I had another set of labs last Thursday. Hemoglobin, hematocrit, and RBC are all back in normal range. Just a cautionary tale from drawing conclusions from one set of labs. As everyone keeps saying here, you have to look at trends.
FYI, I did start to eat a little more animal protein, and changed my vitamin to something a little more potent. Maybe all that made a difference, maybe not.
I think we all get hung up on variations in our labs, from time to time, which is normal. I also have labs every other week because I get Velcade and dexamethasone at that time. Seems like I am always waiting for labs!
FYI, I did start to eat a little more animal protein, and changed my vitamin to something a little more potent. Maybe all that made a difference, maybe not.
I think we all get hung up on variations in our labs, from time to time, which is normal. I also have labs every other week because I get Velcade and dexamethasone at that time. Seems like I am always waiting for labs!
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