Like many, I assume that I get fatigued from my Revlimid regimen (25 mg, 21 days out of 28). I am also taking a low dose of dexamethasone (10 mg weekly) and Ninlaro (5 mg weekly, 3 weeks out of 4). I am pretty active and try to maintain at least 100 miles a week cycling as well as daily dog walking. January was wiped out with flu, but apart from that I am generally well.
My observation, however, is that the fatigue doesn’t reduce during the week ‘holiday’ from taking Revlimid daily, so is it possible there are other things going on?
My oncologist is prioritising lowering the dex to combat weight gain and reduce infection risk, suggesting that I am coping well with Revlimid, a statement backed up by good blood results and no obvious side effects.
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Re: Fatigue from Revlimid
Rory,
I have noticed a drop in my bike performance that corresponds to the increase in my treatment protocol over the last 12 months. I am on Velcade, Revlimid, and dexamethasone (VRD) and the dosages I take are a bit different from yours. I am only on 10 mg of Revlimid but 20 mg of dex per week. Not sure how to compare Velcade with Ninlaro, but note they are both proteasome inhibitors. It is very possible that it is the combination of all of the medications that is causing the fatigue.
Dex impacts people differently, but many suffer the high and lows of dex treatment, including insomnia. I believe the dex is impacting me more than the Revlimid, but I am not sure either. All I know is that when it comes to hill climbing I get dropped by the group I used to be able to hang with. Of course, the reason for the treatment change was that my myeloma had kicked up. I do note that my hemoglobin and hematocrit levels are somewhat lower than they were before I went back on Revlimid.
If you are doing 100 miles a week biking and walking your dog then the fatigue is probably not serious. Some people have a hard time just walking a mile without total exhaustion.
I have noticed a drop in my bike performance that corresponds to the increase in my treatment protocol over the last 12 months. I am on Velcade, Revlimid, and dexamethasone (VRD) and the dosages I take are a bit different from yours. I am only on 10 mg of Revlimid but 20 mg of dex per week. Not sure how to compare Velcade with Ninlaro, but note they are both proteasome inhibitors. It is very possible that it is the combination of all of the medications that is causing the fatigue.
Dex impacts people differently, but many suffer the high and lows of dex treatment, including insomnia. I believe the dex is impacting me more than the Revlimid, but I am not sure either. All I know is that when it comes to hill climbing I get dropped by the group I used to be able to hang with. Of course, the reason for the treatment change was that my myeloma had kicked up. I do note that my hemoglobin and hematocrit levels are somewhat lower than they were before I went back on Revlimid.
If you are doing 100 miles a week biking and walking your dog then the fatigue is probably not serious. Some people have a hard time just walking a mile without total exhaustion.
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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: Fatigue from Revlimid
Rory,
I have been on four different treatments over the past eight years: Kyprolis + Revlimid + dex, Revlimid + dex, Empliciti + Pomalyst + dex, and Ninlaro + dex. By far, I was most fatigued with the Ninlaro + dex, which was my most recent treatment. I would basically pass out by 8 o'clock every night. I have been off all treatment for about 6 weeks now (start a new treatment next week) and have no trouble staying awake in the evening. I also have typically tried to get about 100 miles / week on the bike, but this past summer struggled to get 70-80 miles / week. So perhaps it is the Ninlaro that is contributing to your fatigue? I also found that the fatigue stayed with me, even on my week off, which I contributed to the drugs needing more than a week to completely flush from the body.
I have been on four different treatments over the past eight years: Kyprolis + Revlimid + dex, Revlimid + dex, Empliciti + Pomalyst + dex, and Ninlaro + dex. By far, I was most fatigued with the Ninlaro + dex, which was my most recent treatment. I would basically pass out by 8 o'clock every night. I have been off all treatment for about 6 weeks now (start a new treatment next week) and have no trouble staying awake in the evening. I also have typically tried to get about 100 miles / week on the bike, but this past summer struggled to get 70-80 miles / week. So perhaps it is the Ninlaro that is contributing to your fatigue? I also found that the fatigue stayed with me, even on my week off, which I contributed to the drugs needing more than a week to completely flush from the body.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Fatigue from Revlimid
I agree with Kevin that it takes more than a week to flush out the drug effects. That has been my experience as well.
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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: Fatigue from Revlimid
I am beginning to think that my fatigue has been more influenced by dexamethasone than Revlimid. In preparing for a shift from treatment to maintenance, my oncologist prioritised reduction in dexamethasone dose over Revlimid. So while remaining on 25 mg Revlimid (21/28 days) the dexamethasone was lowered from 10 mg weekly to 6 mg. The change in my response has been fairly dramatic although I guess there may be other factors in play. My energy levels have improved, I no longer sleep during the day, and my biking performance is recovering. My haemoglobin is still low, averaging 116, but that apart I actually feel pretty normal. Last week I managed 175 miles (300 km) on my bike as an indication of improvement. My experience supports the observations made by others that steroids may affect us more than other anti-cancer drugs.
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Rory - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Dec2015
- Age at diagnosis: 65
Re: Fatigue from Revlimid
My husband (63 years) is finishing a fourth month of Revlimid (15 mg) and dex (21 days on, 7 days off). He just celebrated his second autologous stem cell transplant birthday. The first month on this new maintenance therapy was tough. He had chest pressure all the time during month 1 with fatigue. Month 2 and 3 leveled off; he thought this was "doable" and he felt his body was adjusting to the treatment. But month 4 has been like the first month, daily chest pressure and terrible fatigue. He tries to do his gym workout (treadmill and light weight lifting) every day, but there have been some days this month he just has been unable to push through it. He has also once again started having neuropathy in his fingers and toes, which first started when he was doing CyBorD (cyclophosphamide, Velcade, and dexamethasone).The chest pressure has concerned me. However, an EKG done during the first month was negative.
Does anyone know if the fatigue gets better as the months go along with using Revlimid? Or does fatigue persist once it has starts as a side effect?
He has felt so poorly during this 4th month that some days he barely gets through his work day.
Just a little history: He was first diagnosed in November 2016 by means of a large lesion in his upper humerus; the arm broke a few weeks after the multiple myeloma diagnosis.
Does anyone know if the fatigue gets better as the months go along with using Revlimid? Or does fatigue persist once it has starts as a side effect?
He has felt so poorly during this 4th month that some days he barely gets through his work day.
Just a little history: He was first diagnosed in November 2016 by means of a large lesion in his upper humerus; the arm broke a few weeks after the multiple myeloma diagnosis.
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Lavonne_H - Name: Lavonne
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: 11/2016
- Age at diagnosis: 60
Re: Fatigue from Revlimid
Hello, Lavonne!
It's a good idea to read the experiences of others for drug side effects, even though everyone is different in their reactions.
A couple of ideas occurred to me..
Since your husband is taking dexamethasone, is he able to sleep at night when on that drug? I took a drug called trazadone, which helps with sleep disorders, so as to get better rest. You could check with your doctor about any sleeplessness.
You say that he tries to do the same workout every day, i.e., walking / running on a treadmill and weight lifting. I think that most exercisers try to vary their workout routine. He could try walking outdoors, swimming, cycling or some other exercise, as well as his usual routine. For example, just do the usual every other day and try other exercises on alternate days. This might help him to get more energy and also train different muscle groups.
Hope that helps and good luck!
It's a good idea to read the experiences of others for drug side effects, even though everyone is different in their reactions.
A couple of ideas occurred to me..
Since your husband is taking dexamethasone, is he able to sleep at night when on that drug? I took a drug called trazadone, which helps with sleep disorders, so as to get better rest. You could check with your doctor about any sleeplessness.
You say that he tries to do the same workout every day, i.e., walking / running on a treadmill and weight lifting. I think that most exercisers try to vary their workout routine. He could try walking outdoors, swimming, cycling or some other exercise, as well as his usual routine. For example, just do the usual every other day and try other exercises on alternate days. This might help him to get more energy and also train different muscle groups.
Hope that helps and good luck!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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