I was diagnosed with smoldering myeloma a year ago, until my creatinine started to rise 6 months ago, at which point my myeloma doctor decided to treat me with Velcade, Cytoxan (cyclophosphamide) and dex.
I am now on my 5th and last round of therapy, 4 weeks on and one week off. My kappa is at 400 and paraprotein at 0.9. My creatinine is steady at 1.8. My hematocrit has been stable for over a year around 31-32%.
I have horrible fatigue. I don't know whether it is from the treatment or the disease plus a little bit of anemia. This is confounded by the fact that I often get up 2x-3x a night to urinate.
The plan is to shift me over to Revlimid/dex in a month. I have heard that one of the side effects of Revlimid is fatigue. While I will be happy to get pills instead of an IV, I am not too happy about anything that will make my fatigue worse.
I would appreciate any thoughts.
Thanks
Forums
Re: Experiencing extreme fatigue - how common is it?
I started Revlimid 3 months ago and fatigue has been my worse side affect. On the bright side, I do seem to have a little more relief each month -- small, but some improvement.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Experiencing extreme fatigue - how common is it?
Hi,
My husband was diagnosed 3 years ago. The first 24 months he was given Kyprolis / Revlimid / dex, and since then has been on just Revlimid maintenance. Between his anemia at first and the Revlimid, he also had extreme fatigue. When he went on Revlimid maintenance, his fatigue was somewhat less, but it still kept him from doing as much as he wanted to (like he used to).
After repeatedly telling his oncologist he was unhappy with his lack of energy, and given his M spike has been undetectable for the last year, his oncologist lowered his maintenance Revlimid from 25 to 15 mg, which made a HUGE difference in his energy level. Also, his hemoglobin has finally hit the low range of normal, so that helped, too.
So in his case, it took a long time of treatment (to alleviate the anemia) and discussing it with his oncologist (lower the Revlimid dose) to get to the point where my husband is satisfied his energy level is close to normal again.
Best wishes to you,
Chris M.
My husband was diagnosed 3 years ago. The first 24 months he was given Kyprolis / Revlimid / dex, and since then has been on just Revlimid maintenance. Between his anemia at first and the Revlimid, he also had extreme fatigue. When he went on Revlimid maintenance, his fatigue was somewhat less, but it still kept him from doing as much as he wanted to (like he used to).
After repeatedly telling his oncologist he was unhappy with his lack of energy, and given his M spike has been undetectable for the last year, his oncologist lowered his maintenance Revlimid from 25 to 15 mg, which made a HUGE difference in his energy level. Also, his hemoglobin has finally hit the low range of normal, so that helped, too.
So in his case, it took a long time of treatment (to alleviate the anemia) and discussing it with his oncologist (lower the Revlimid dose) to get to the point where my husband is satisfied his energy level is close to normal again.
Best wishes to you,
Chris M.
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Chris M
Re: Experiencing extreme fatigue - how common is it?
I was blasted by fatigue when I was going through primary treatment. I accepted that was something I was just going to have to live with.
I have been on 10mg Revlimid maintenance for about 2.5 years now and, at this point, whatever fatigue Revlimid imparts on me is all I know -- it is my new normal. I believe at 10mg I am tolerating Revlimid better than most people. I am able to work 40 hours a week like I did before myeloma. I cycle quite a bit on weekends, putting in between 20 to 70 miles, and swim 3k yds about twice a week and still snow ski in the winter.
Having said all that, there are times when I do get tired and I nap a lot more than I did before. Being single with no kids I can do this, but I completely understand that when someone has a family there is not much time to sit still and it is tiring, myeloma or not.
Late last year my dose was increased to 15 mg and I definitely felt that difference -- a lot more fatigue. The dose was reduced to 10 mg again because my WBC were not holding up under the increased dosage. There was also a period where I went 4 weeks with no Revlimid and near the end of that period I could start to tell a difference too. More energy and a bit of the chemo fog being lifted that so many people talk about, but I was not aware of it anymore after being on Revlimid for so long.
It is also easier for me to accept the Revlimid fatigue coming off the extreme fatigue I had during primary treatment with Velcade and a SCT. I am just glad those days are behind me for now.
I have been on 10mg Revlimid maintenance for about 2.5 years now and, at this point, whatever fatigue Revlimid imparts on me is all I know -- it is my new normal. I believe at 10mg I am tolerating Revlimid better than most people. I am able to work 40 hours a week like I did before myeloma. I cycle quite a bit on weekends, putting in between 20 to 70 miles, and swim 3k yds about twice a week and still snow ski in the winter.
Having said all that, there are times when I do get tired and I nap a lot more than I did before. Being single with no kids I can do this, but I completely understand that when someone has a family there is not much time to sit still and it is tiring, myeloma or not.
Late last year my dose was increased to 15 mg and I definitely felt that difference -- a lot more fatigue. The dose was reduced to 10 mg again because my WBC were not holding up under the increased dosage. There was also a period where I went 4 weeks with no Revlimid and near the end of that period I could start to tell a difference too. More energy and a bit of the chemo fog being lifted that so many people talk about, but I was not aware of it anymore after being on Revlimid for so long.
It is also easier for me to accept the Revlimid fatigue coming off the extreme fatigue I had during primary treatment with Velcade and a SCT. I am just glad those days are behind me for now.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Experiencing extreme fatigue - how common is it?
Anemia and fatigue are related. A hematocrit level of 31 to 32 is below nomal (range of 40-50). What about your hemoglobin and overall red counts? My guess is that you are below normal on those and thus have anemia.
The question is: What is causing the anemia? Velcade is not normally related to low red counts. I am not sure of the side effects of Cytoxan. Of course multiple myeloma itself can trigger anemia.
Ron
The question is: What is causing the anemia? Velcade is not normally related to low red counts. I am not sure of the side effects of Cytoxan. Of course multiple myeloma itself can trigger anemia.
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: Experiencing extreme fatigue - how common is it?
Sorry to hear you are having the fatigue "Shuffles".
Glad to hear the multiple myeloma treatment is helping.
One additional reason you may be tired, is your nocturnal "Pee-fests". Hard to get decent sleep when you are cycling like that !
Over the past year, I was getting up as many as 5-7 times to pee just a little bit. I was 3rd spacing fluid somehow. Constant Bloating during the late PM, and inability to pee before bed. Frustrating. Natural diuretics ( coffee, tea, etc)-- to No avail.
I finally put myself on Furosemide ( low dose) in the a.m. ( LASIX)
I now have regular enuresis /micturation, thru the day and relatively few (one -two) at nite. 3rd spacing is going away.
This simple adjustment to fluid Mgt has made a huge difference in fatigue for me. I still have fatigue, and it's sometimes like a brick wall, and I sleep more on weekends,...but low dose furosemide has really helped me get some needed sleep at nite. Daily Fatigue is much less.
Check it out with your Docs.
My Kidney related labs are all "Normal". ..and have been so. Must be an age related thing occurring north of 55...?
Good luck.
Glad to hear the multiple myeloma treatment is helping.
One additional reason you may be tired, is your nocturnal "Pee-fests". Hard to get decent sleep when you are cycling like that !
Over the past year, I was getting up as many as 5-7 times to pee just a little bit. I was 3rd spacing fluid somehow. Constant Bloating during the late PM, and inability to pee before bed. Frustrating. Natural diuretics ( coffee, tea, etc)-- to No avail.
I finally put myself on Furosemide ( low dose) in the a.m. ( LASIX)
I now have regular enuresis /micturation, thru the day and relatively few (one -two) at nite. 3rd spacing is going away.
This simple adjustment to fluid Mgt has made a huge difference in fatigue for me. I still have fatigue, and it's sometimes like a brick wall, and I sleep more on weekends,...but low dose furosemide has really helped me get some needed sleep at nite. Daily Fatigue is much less.
Check it out with your Docs.
My Kidney related labs are all "Normal". ..and have been so. Must be an age related thing occurring north of 55...?
Good luck.
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Rneb
Re: Experiencing extreme fatigue - how common is it?
13 months post ASCT, fatigue remains my most prevalent complaint.
Some background: In December of 2012, no one expected me to live -- extremely high risk multiple myeloma, 17p(del); massive systemic infection; numerous bone lesions; extremely high creatinine; extremely low HGB, HCT, WBC, RBC etc. So I am very grateful to be alive.
Things were so bad that there was some debate whether I could even tolerate the initial treatment protocol (Revlimid-Velcade-dex), but I responded almost miraculously well. I went from essentially immobile throughout January, to hiking and living come mid February. I continued to improve but my energy levels remained terribly low -- 18-22 hours per day were spent in bed, or at least inside. Still, if not energy, at least I was regaining some strength.
In June of 2013 I had my stem cell transplant. Let's just say that if I had it to over again, I really don't know that I would choose to do the transplant (recent MB article where they are leaning towards not recommending transplants for 17P del patients is worth a read). At that time, however, it seemed like the best option I had.
So 13 months later, my energy reserves are still very depleted. I read the posts from other multiple myeloma patients who say they were able to return to work as soon as 3 months post transplant. Personally, I am no closer today to being able to return to work than I was at 2 months post transplant. I have never gotten back to the point I was just prior to the transplant, but I am improving.
My numbers are good. RBC may never reach normal levels again, but I'm off all multiple myeloma meds. Recently, I decided that my energy was so low that I would start taking steroids on a more or less regular basis. I'm well aware of the potential side effects, but there is also quality of life to be considered here.
I'm taking extremely low dose, 4mg, methylprednisolone (that equates to less than 1mg of dex). Since this is the form that the body must break down prednisone into before it can be utilized, potential liver damage is virtually eliminated. And, as near as I can tell, sexual dysfunction isn't a concern with this form of steroid. So I still have to watch adrenal, kidney, and a few other functions, but at least it gives me a little productive time throughout the week. Still yet, I need lots of sleep and lots of naps.
I know you were hoping for a solution for your lethargy, and steroids may help, of course then you have to deal with trouble sleeping, but I had that anyway. I hope you find a great solution and can then share it with all of us.
Aloha
Daniel
Some background: In December of 2012, no one expected me to live -- extremely high risk multiple myeloma, 17p(del); massive systemic infection; numerous bone lesions; extremely high creatinine; extremely low HGB, HCT, WBC, RBC etc. So I am very grateful to be alive.
Things were so bad that there was some debate whether I could even tolerate the initial treatment protocol (Revlimid-Velcade-dex), but I responded almost miraculously well. I went from essentially immobile throughout January, to hiking and living come mid February. I continued to improve but my energy levels remained terribly low -- 18-22 hours per day were spent in bed, or at least inside. Still, if not energy, at least I was regaining some strength.
In June of 2013 I had my stem cell transplant. Let's just say that if I had it to over again, I really don't know that I would choose to do the transplant (recent MB article where they are leaning towards not recommending transplants for 17P del patients is worth a read). At that time, however, it seemed like the best option I had.
So 13 months later, my energy reserves are still very depleted. I read the posts from other multiple myeloma patients who say they were able to return to work as soon as 3 months post transplant. Personally, I am no closer today to being able to return to work than I was at 2 months post transplant. I have never gotten back to the point I was just prior to the transplant, but I am improving.
My numbers are good. RBC may never reach normal levels again, but I'm off all multiple myeloma meds. Recently, I decided that my energy was so low that I would start taking steroids on a more or less regular basis. I'm well aware of the potential side effects, but there is also quality of life to be considered here.
I'm taking extremely low dose, 4mg, methylprednisolone (that equates to less than 1mg of dex). Since this is the form that the body must break down prednisone into before it can be utilized, potential liver damage is virtually eliminated. And, as near as I can tell, sexual dysfunction isn't a concern with this form of steroid. So I still have to watch adrenal, kidney, and a few other functions, but at least it gives me a little productive time throughout the week. Still yet, I need lots of sleep and lots of naps.
I know you were hoping for a solution for your lethargy, and steroids may help, of course then you have to deal with trouble sleeping, but I had that anyway. I hope you find a great solution and can then share it with all of us.
Aloha
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Experiencing extreme fatigue - how common is it?
Daniel, you have indeed been thru much...what keeps you going ?
This is a " teachable moment," so please share.
This is a " teachable moment," so please share.
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Rneb
Re: Experiencing extreme fatigue - how common is it?
I am going through something similar, and I am curious what solutions people have found for the fatigue and anemic condition that comes with the treatment for multiple myeloma.
My doctors are not concerned with my low red blood cell count and indicated it (along with the lack of energy) is an acceptable side effect of the treatment doing its job against the cancer cells.
It has gotten so bad, however, that I am winded just walking to the end of driveway. So I am looking for solutions to get my energy back and maintain strength. I have been using a stationary bike to work leg muscles and doing various yoga exercises to build core, but feel like I am losing ground.
I finish my initial treatment soon and have about a 30-day window to focus on building my strength for the upcoming stem cell transplant. Seems my best bet for recovery is to make sure I am as healthy as possible when the process starts. Prior to my diagnose I was running 5-7 miles three to four times per week and biking 20 to 30 miles on the other days. Goal is to be back biking this summer and hit the 25 mile rides by July.
My doctors are not concerned with my low red blood cell count and indicated it (along with the lack of energy) is an acceptable side effect of the treatment doing its job against the cancer cells.
It has gotten so bad, however, that I am winded just walking to the end of driveway. So I am looking for solutions to get my energy back and maintain strength. I have been using a stationary bike to work leg muscles and doing various yoga exercises to build core, but feel like I am losing ground.
I finish my initial treatment soon and have about a 30-day window to focus on building my strength for the upcoming stem cell transplant. Seems my best bet for recovery is to make sure I am as healthy as possible when the process starts. Prior to my diagnose I was running 5-7 miles three to four times per week and biking 20 to 30 miles on the other days. Goal is to be back biking this summer and hit the 25 mile rides by July.
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Pat H - Name: Pat
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept 2017
- Age at diagnosis: 54
Re: Experiencing extreme fatigue - how common is it?
Thanks, I can relate to each one of these comments. While I am in the initial (induction) phase of treatment, I also am up hitting the bathroom at night every 1.5 to 2.0 hours. One thing I have found is 2G Gatorade (low sugar) before bed often seems to extend the times between trips up to an hour, but this not consistent. Sometimes I get 3 hours, but my doctor says he doesn't know of any scientific reason why, but hey, keep doing it.
The induction therapy is four cycles of four weekly treatments. For the first half, I took 40 mg of dexamethasone and 120 mg of cyclophosphamide four days per week (pill formats) and then a weekly injection of that was a mix of diphenhydramine, hydrocrostisone, methylprednisoline, and pamidronate. Second half to treatment was reduction of the pills to one day per week.,
My red blood cell count in the second phase of the treatment is now in the 3.3 range and below the normal range of 4.2 - 5.8. First phase was in the 2.9 range. Hematocrit range is in the 33% range, up from 28% range in first phase. Normal is 40 to 54%.
Posting was motivating (yesterday was also my last treatment infusion - yea) and got me to push hard on a walk yesterday and go three miles (5 km) with wife. Live back west, so weather was not an issue. Have a moderate 0.4 mile (0.6 ,m) hill starting out and had to stop four times for short breaks and at end for five minutes to lower heart beat. Rest of walk was slow but steady, but could tell heart rate was elevated. About 25 minute mile average pace. I am know 55, so don't like pushing to a racing heart rate.
Think I will drive to flat area and continue with the distance this next week to see what happens with heart rate and pace. My physical therapy person recommends against treadmills as these control the pace, not you. Gonna try the 3 mile walks for the next week and track heart rate and time. If necessary, will go to an indoor track at local rec center, but this is 1/20 mile laps - 60 laps seems very boring, but will have to suck it up.
Will let you know if there is any noted improvements, especially once I hit one week out and the treatment impact wears out.
The induction therapy is four cycles of four weekly treatments. For the first half, I took 40 mg of dexamethasone and 120 mg of cyclophosphamide four days per week (pill formats) and then a weekly injection of that was a mix of diphenhydramine, hydrocrostisone, methylprednisoline, and pamidronate. Second half to treatment was reduction of the pills to one day per week.,
My red blood cell count in the second phase of the treatment is now in the 3.3 range and below the normal range of 4.2 - 5.8. First phase was in the 2.9 range. Hematocrit range is in the 33% range, up from 28% range in first phase. Normal is 40 to 54%.
Posting was motivating (yesterday was also my last treatment infusion - yea) and got me to push hard on a walk yesterday and go three miles (5 km) with wife. Live back west, so weather was not an issue. Have a moderate 0.4 mile (0.6 ,m) hill starting out and had to stop four times for short breaks and at end for five minutes to lower heart beat. Rest of walk was slow but steady, but could tell heart rate was elevated. About 25 minute mile average pace. I am know 55, so don't like pushing to a racing heart rate.
Think I will drive to flat area and continue with the distance this next week to see what happens with heart rate and pace. My physical therapy person recommends against treadmills as these control the pace, not you. Gonna try the 3 mile walks for the next week and track heart rate and time. If necessary, will go to an indoor track at local rec center, but this is 1/20 mile laps - 60 laps seems very boring, but will have to suck it up.
Will let you know if there is any noted improvements, especially once I hit one week out and the treatment impact wears out.
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Pat H - Name: Pat
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept 2017
- Age at diagnosis: 54
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