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need feedback from RD users
Has anyone experienced shortness of breath on RD? There are no blood clots in lungs, no pneumonia and nothing but elevated white blood cell count. Could it be the DEX? Started on RD 3 weeks ago 25mg of REV and 40 mg Of DEX. Shortness of breath when Climbing stairs or walking very quickly.
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myelomacrazy - Name: myelomacrazy
- Who do you know with myeloma?: father
- When were you/they diagnosed?: 2008
- Age at diagnosis: 66
Re: need feedback from RD users
I just started treatment this week on Rev 25 and Dex 80. I have low red and white counts because if the myeloma. Hopefully my red and white count will go up as I respond to treatment. I have my first follow-up treatment March 20 at which time I will receive an IV of Zometa to treat my bones. I will have a blood test one week prior to my follow up exam to see if I am responding positively. I take 1 baby aspirin a day to prevent blood clotting from the Rev as that is a possible side effect. I don't know if I've been helpful but I hope I have.
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Ed Garbarino
Re: need feedback from RD users
Wow, that's a lot of dex! Do you need it to be 80? Usually it's 40.
I just started to have a rise in my m- protein, am going to star rev/dex(20). I think I read that the lower doses of dex are just as effective. But I don't really know . This is my second relapse,
so I'm slightly depressed but, since it worked so well before, hopefully it will this time too.
You should check with your doctor,why 80 dex, that really seems high!
I just started to have a rise in my m- protein, am going to star rev/dex(20). I think I read that the lower doses of dex are just as effective. But I don't really know . This is my second relapse,
so I'm slightly depressed but, since it worked so well before, hopefully it will this time too.You should check with your doctor,why 80 dex, that really seems high!
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: need feedback from RD users
Hi Canuck Bob!!
I am like Christina, WOW.
When you wrote 80mg was that a typo?
That's a huge dose.
Is that your total monthly dose of dexamethasone? So you would be taking 20mg weekly?
They use to recommend 40mg weekly but the new standard now is 20mg of dex weekly in combo regimens.
You might want to follow up and make sure you are to take 80mg, if that was not a typo.
Edited to add:
I just noticed another post where you mentioned you are post ASCT...perhaps that is why you have the high DEX dose it's preventative for GVHD.
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I am like Christina, WOW.
When you wrote 80mg was that a typo?
That's a huge dose.
Is that your total monthly dose of dexamethasone? So you would be taking 20mg weekly?
They use to recommend 40mg weekly but the new standard now is 20mg of dex weekly in combo regimens.
You might want to follow up and make sure you are to take 80mg, if that was not a typo.
Edited to add:
I just noticed another post where you mentioned you are post ASCT...perhaps that is why you have the high DEX dose it's preventative for GVHD.
.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: need feedback from RD users
Hi Myelomacrazy!!
Yes, I have experienced SOB on RD. I found just walking was strenuous, my pace slowed down significantly. Our traffic lights here are timed for crosswalks and I needed an additional 10secs to make it across. Walking at malls was exhausting as well. I found myself reclined to bed a lot.
I don't think it is DEX, simply because they use steroids for asthma.
We also know that myelosuppression, a common side effect of lenalidomide, suppresses red and white cells. You mentioned low red and white counts, while I did not have those. SOB is a common side effect of anemia. Ergo, a low red count certainly could account for SOB, as you would not be getting enough hemoglobin to oxygenate cells.
Another possiblitity it could be though is the volume of hydration they use during your infusion. That can impact cardiac volume as you have more fluid on board than your heart is use to pumping. i.e. like a mack truck plowing uphill.
I found when the hydration was reduced the SOB diminished. Also, it seems that it took about 60 days for the SOB to get better.
My therapy started end of Oct... Nov and Dec were awful for SOB ...but by Jan it cleared up.
My speculation is that it is a combination of things..age, cardio status, hydration and/or the drug.
Overall, if I had to guess though it's most likely myelosuppression from lenalidomide based on your rbc and wbc counts being low.
Hope that helps.
Yes, I have experienced SOB on RD. I found just walking was strenuous, my pace slowed down significantly. Our traffic lights here are timed for crosswalks and I needed an additional 10secs to make it across. Walking at malls was exhausting as well. I found myself reclined to bed a lot.
I don't think it is DEX, simply because they use steroids for asthma.
We also know that myelosuppression, a common side effect of lenalidomide, suppresses red and white cells. You mentioned low red and white counts, while I did not have those. SOB is a common side effect of anemia. Ergo, a low red count certainly could account for SOB, as you would not be getting enough hemoglobin to oxygenate cells.
Another possiblitity it could be though is the volume of hydration they use during your infusion. That can impact cardiac volume as you have more fluid on board than your heart is use to pumping. i.e. like a mack truck plowing uphill.
I found when the hydration was reduced the SOB diminished. Also, it seems that it took about 60 days for the SOB to get better.
My therapy started end of Oct... Nov and Dec were awful for SOB ...but by Jan it cleared up.
My speculation is that it is a combination of things..age, cardio status, hydration and/or the drug.
Overall, if I had to guess though it's most likely myelosuppression from lenalidomide based on your rbc and wbc counts being low.
Hope that helps.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: need feedback from RD users
I have been on VRD plus Aredia for 3 years. I was originally on 40 mg of dex (oral) every week but for the last year that has been reduced to 20 mg every other week. I have had the following side effects: insomnia, increased heart rate, hiccups, moodiness, water weight gain (couple of pounds), and flushness in the face. These symptoms usually pass within 48-60 hours. Insofar as SOB, I have not experienced that side effect. I am an avid cyclist and ride over 4,000 miles a year and have been since being diagnosed. I actually compete in cycling races in my age bracket. For example I will be competing in the Texas Senior Olympic games in 4 different bike races at the end of March. I am trying to qualify for a spot in the US nationals (60-64 age bracket) to be held in Cleveland in 2013.
I usually ride 4 days a week either outdoors, on my indoor trainer or in a spin class at our local health club. I avoid riding for about 40 hours after receiving Dex. I do notice a drop in physical endurance during that 40 hour period and since my HR is elevated already, I deem that too risky to do extensive physical exercise.
However, I do believe that getting into a some form of regulare physical exercise will help with the SOB. I have low red and white counts do to the bi-weekly Velcade shots and daily Revlimid. Not only are my overall red counts low but the size of the red cells are larger than normal. That means that my body is not getting the oxygen carried by the red cells to my muscles efficiently. I ward off the effects of anemia by my high level of exercise. I also take B-12 and Foliate Acid supplements that seem to help. What I do notice is that the worst effects of the Dex start about 4 hours after taking it and persist for the next 36 hours or so. If I take it at say 3 pm I can ride my bike at a "recreational pace" for about 20 miles or so between 5 to 7 pm but not later. The first night I usually can't sleep and am "up", seemingly focused the next day at work. Howerver I experience the "crash" later in the afternoon of the second day but still have difficulty sleeping. I schedule my Velcade shot and take me dex on Thursday afternoons so I can get in a vigourous 50 mile training ride on Saturday mornings.
Ron
I usually ride 4 days a week either outdoors, on my indoor trainer or in a spin class at our local health club. I avoid riding for about 40 hours after receiving Dex. I do notice a drop in physical endurance during that 40 hour period and since my HR is elevated already, I deem that too risky to do extensive physical exercise.
However, I do believe that getting into a some form of regulare physical exercise will help with the SOB. I have low red and white counts do to the bi-weekly Velcade shots and daily Revlimid. Not only are my overall red counts low but the size of the red cells are larger than normal. That means that my body is not getting the oxygen carried by the red cells to my muscles efficiently. I ward off the effects of anemia by my high level of exercise. I also take B-12 and Foliate Acid supplements that seem to help. What I do notice is that the worst effects of the Dex start about 4 hours after taking it and persist for the next 36 hours or so. If I take it at say 3 pm I can ride my bike at a "recreational pace" for about 20 miles or so between 5 to 7 pm but not later. The first night I usually can't sleep and am "up", seemingly focused the next day at work. Howerver I experience the "crash" later in the afternoon of the second day but still have difficulty sleeping. I schedule my Velcade shot and take me dex on Thursday afternoons so I can get in a vigourous 50 mile training ride on Saturday mornings.
Ron
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Ron Harvot
Re: need feedback from RD users
Ron. I am curious. With exercise, have your HB levels increased or stabilized? In other words, when you say the you are warding off the effects of anemia by exercise, how do you think that it being manifested physiolgically, i.e. in your blood work?
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Dan D
Re: need feedback from RD users
Dan,
My blood work is relatively stable but tends to show low readings. I "believe" that the levels might be even lower and less stable, if I did not exercise. I know I feel better, am less tired and have more energy due to the exercise. Feel is important but certainly not clinical evidence.
Examples:
CBC Normal Range My average
White count - 3.5-10.5 3-4.5
Red count 4.2-5.7 3.5-4.5
Hemoglobin 13.5-17.5 12.5-14.5
Hematrocite 38.8-50 35 - 40
MCV 80-97 100-110
These tests need to be run before you take dex since dex will cause the white count to rise dramatically. The rise in the white count however does not mean that you are healthier or have more ability to fight infection. Those are in essence wasted white cells since when you take Dex you are more vulnerable to infections.
Ron
My blood work is relatively stable but tends to show low readings. I "believe" that the levels might be even lower and less stable, if I did not exercise. I know I feel better, am less tired and have more energy due to the exercise. Feel is important but certainly not clinical evidence.
Examples:
CBC Normal Range My average
White count - 3.5-10.5 3-4.5
Red count 4.2-5.7 3.5-4.5
Hemoglobin 13.5-17.5 12.5-14.5
Hematrocite 38.8-50 35 - 40
MCV 80-97 100-110
These tests need to be run before you take dex since dex will cause the white count to rise dramatically. The rise in the white count however does not mean that you are healthier or have more ability to fight infection. Those are in essence wasted white cells since when you take Dex you are more vulnerable to infections.
Ron
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Ron Harvot
Re: need feedback from RD users
Well, we know that exercise increases RBC and hemoglobin levels -- ask Lance Armstrong -- so I would certainly expect that exercise in a multiple myeloma patient will help maintain or improve the status quo.
My only symptom so far -- I have not begin treatment -- is mild anemia, and I am wondering what I can do to get this situation under control without drugs, or at least stave off treatment for as long as possible.
And I agree with you that "feeling" is important. For example, I often "feel" as if my throat and upper chest are slightly acidic, leading me to wonder whether deacidifying my system may also have therapeutic benefits. Just a feeling though!
More generally, as I read about some integrative medical approaches, a common theme is that cancer is not just about the tumor (or M-spike in multiple myeloma). It is really about the whole body. So combining drugs with a healthy lifestyle and diet may offer a way to slow -- if not halt --progression of the disease with low toxicity and a higher quality of life.
My only symptom so far -- I have not begin treatment -- is mild anemia, and I am wondering what I can do to get this situation under control without drugs, or at least stave off treatment for as long as possible.
And I agree with you that "feeling" is important. For example, I often "feel" as if my throat and upper chest are slightly acidic, leading me to wonder whether deacidifying my system may also have therapeutic benefits. Just a feeling though!
More generally, as I read about some integrative medical approaches, a common theme is that cancer is not just about the tumor (or M-spike in multiple myeloma). It is really about the whole body. So combining drugs with a healthy lifestyle and diet may offer a way to slow -- if not halt --progression of the disease with low toxicity and a higher quality of life.
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Dan D
Re: need feedback from RD users
Hi Dan D,
I am probably in the same boat as you. I have mild anemia but not enough to trigger treatment as per CRAB criteria. I have started using a spirulina containing healthy drink mix called Barlean's Greens. Spirulina apparently helps boost hemoglobin and is certainly a healthy thing to ingest regardless. I get my blood drawn on 3/6....I've already started my hail marys! Regards. Terry
I am probably in the same boat as you. I have mild anemia but not enough to trigger treatment as per CRAB criteria. I have started using a spirulina containing healthy drink mix called Barlean's Greens. Spirulina apparently helps boost hemoglobin and is certainly a healthy thing to ingest regardless. I get my blood drawn on 3/6....I've already started my hail marys! Regards. Terry
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
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