Hello all,
I don’t contribute much here in the forum or in the comments but I am a regular reader.
Just to give you a bit of background, I was diagnosed with multiple myeloma in 2011 after 6 years of MGUS. I went into 8 cycles of Velcade, dexamethasone and cyclophosphamide (CyBorD), followed by an autologous stem cell transplant,, which gave me two years of remission. The myeloma started acting up again in 2013 and I have been on a maintenance regimen of Revlimid (25 mg), dexamethasone (40 mg), and Coumadin (warfarin) ever since, which does a fine job thus far of keeping the myeloma at bay.
I read a lot about some of you complaining about fatigue. I have bouts of fatigue also, but I can’t figure out if it’s because of my age (I’m 60 and still work full time) or because of the Revlimid. According to my blood tests (and my oncologist), I am not anemic, even though my numbers are lower than normal. I’m wondering if those of you who suffer from fatigue are, in fact, anemic?
Thanks in advance,
Forums
9 posts
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mpion55 - Name: Michel Pion
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2011
- Age at diagnosis: 56
Re: Revlimid, fatigue, and anemia
Hi MP:
I am a spouse of a multiple myeloma patient. You have asked a very, very important question. The first instance of something amiss, it may be that it's just us getting older, not the multiple myeloma. I do not know the exact answer in your case. I think you have to ride it through, but look into the possibility that it might be just you getting a little bit older.
Good luck to you. Best Regards, JPC
I am a spouse of a multiple myeloma patient. You have asked a very, very important question. The first instance of something amiss, it may be that it's just us getting older, not the multiple myeloma. I do not know the exact answer in your case. I think you have to ride it through, but look into the possibility that it might be just you getting a little bit older.
Good luck to you. Best Regards, JPC
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JPC - Name: JPC
Re: Revlimid, fatigue, and anemia
Michel,
The typical test for anemia is to measure hemoglobin and hematocrit levels.
However, Revlimid usage can lower blood platelet levels (thrombocytopenia) and neutrophil levels (neutropenia), either of which can in turn cause fatigue. So, you may want to check the history of your blood platelet and neutrophil levels and not just the common anemia markers.
Fatigue is also reported as a common adverse side effect of Revlimid. See the Revlimid monograph:
http://www.drugs.com/monograph/Revlimid.html
Common Adverse Effects
Multiple myeloma: Constipation, fatigue, insomnia, muscle cramps, diarrhea, neutropenia, anemia,asthenia, fever, nausea, headache, peripheral edema, dizziness, dyspnea, tremor, weight loss, thrombocytopenia, rash, back pain, hyperglycemia, muscle weakness, blurred vision, cough, dyspepsia, anorexia, upper respiratory tract infection, dysgeusia, paresthesia, hypokalemia, pneumonia, arthralgia, vomiting.
The typical test for anemia is to measure hemoglobin and hematocrit levels.
However, Revlimid usage can lower blood platelet levels (thrombocytopenia) and neutrophil levels (neutropenia), either of which can in turn cause fatigue. So, you may want to check the history of your blood platelet and neutrophil levels and not just the common anemia markers.
Fatigue is also reported as a common adverse side effect of Revlimid. See the Revlimid monograph:
http://www.drugs.com/monograph/Revlimid.html
Common Adverse Effects
Multiple myeloma: Constipation, fatigue, insomnia, muscle cramps, diarrhea, neutropenia, anemia,asthenia, fever, nausea, headache, peripheral edema, dizziness, dyspnea, tremor, weight loss, thrombocytopenia, rash, back pain, hyperglycemia, muscle weakness, blurred vision, cough, dyspepsia, anorexia, upper respiratory tract infection, dysgeusia, paresthesia, hypokalemia, pneumonia, arthralgia, vomiting.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Revlimid, fatigue, and anemia
Hi everyone,
I'm new here. My husband was just officially diagnosed with multiple myeloma last Tuesday. He starts his treatments next Tuesday. They originally said it was Revlimid, but now say the other one, Velcade. I'm not sure if that's right.
But his fatigue has been thru this whole thing, and he has not started any treatments yet. He's young, just turned 48 today. The fatigue was our first sign anything was wrong. I'm wondering now if is anemia.
What I do know, is I'm very blessed to have found you all. I'm doing all I can to understand all this for the both of us. Trying to keep him positive and keeping him off the internet has been tricky. But I find hope with all of you. Thank you
I'm new here. My husband was just officially diagnosed with multiple myeloma last Tuesday. He starts his treatments next Tuesday. They originally said it was Revlimid, but now say the other one, Velcade. I'm not sure if that's right.
But his fatigue has been thru this whole thing, and he has not started any treatments yet. He's young, just turned 48 today. The fatigue was our first sign anything was wrong. I'm wondering now if is anemia.
What I do know, is I'm very blessed to have found you all. I'm doing all I can to understand all this for the both of us. Trying to keep him positive and keeping him off the internet has been tricky. But I find hope with all of you. Thank you
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godschickee - Name: Shauna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 47
Re: Revlimid, fatigue, and anemia
Thank you for a good answer, Multibilly.
mpion55, I would not "look into the possibility that it might be just you getting a little bit older." You are taking a treatment level dose of Revlimid. Revlimid is a derivative of thalidomide. Thalidomide was originally approved as a sleeping pill. As Multibilly posted, fatigue is a common side effect of Revlimid.
Secondly, cancer fatigue is real. People that never had cancer may not understand that. Here are links to some articles. Fatigue is a side effect of treatment and the cancer itself.
"Fatigue, usually described as feeling tired, weak or exhausted, affects most people during cancer treatment. Cancer fatigue can result from the side effects of treatment or the cancer itself."
"You might develop anemia if your treatment destroys too many healthy red blood cells. You can also develop anemia if the cancer has spread to your BONE MARROW and interferes with blood cell production or causes you to lose blood."
http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-fatigue/art-20047709
"Research suggests that most people getting cancer treatment have fatigue. Cancer-related fatigue is very different from everyday fatigue. Cancer-related fatigue is worse. It lasts longer and sleep doesn’t make it better: it’s unpredictable. And many people describe it as overwhelming, affecting every part of their lives."
http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/fatigue/feeling-tired-vs-cancer-related-fatigue
"Most people receiving cancer treatment experience fatigue. Some cancer survivors have fatigue that lasts for months and sometimes years after finishing treatment.
Talk with your health care team about any symptoms of fatigue you may experience. This includes any new symptoms or a change in symptoms. Diagnosing and relieving side effects is an important part of your cancer care and treatment. This is called symptom management or palliative care."
http://www.cancer.net/navigating-cancer-care/side-effects/fatigue
mpion55, I would not "look into the possibility that it might be just you getting a little bit older." You are taking a treatment level dose of Revlimid. Revlimid is a derivative of thalidomide. Thalidomide was originally approved as a sleeping pill. As Multibilly posted, fatigue is a common side effect of Revlimid.
Secondly, cancer fatigue is real. People that never had cancer may not understand that. Here are links to some articles. Fatigue is a side effect of treatment and the cancer itself.
"Fatigue, usually described as feeling tired, weak or exhausted, affects most people during cancer treatment. Cancer fatigue can result from the side effects of treatment or the cancer itself."
"You might develop anemia if your treatment destroys too many healthy red blood cells. You can also develop anemia if the cancer has spread to your BONE MARROW and interferes with blood cell production or causes you to lose blood."
http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-fatigue/art-20047709
"Research suggests that most people getting cancer treatment have fatigue. Cancer-related fatigue is very different from everyday fatigue. Cancer-related fatigue is worse. It lasts longer and sleep doesn’t make it better: it’s unpredictable. And many people describe it as overwhelming, affecting every part of their lives."
http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/fatigue/feeling-tired-vs-cancer-related-fatigue
"Most people receiving cancer treatment experience fatigue. Some cancer survivors have fatigue that lasts for months and sometimes years after finishing treatment.
Talk with your health care team about any symptoms of fatigue you may experience. This includes any new symptoms or a change in symptoms. Diagnosing and relieving side effects is an important part of your cancer care and treatment. This is called symptom management or palliative care."
http://www.cancer.net/navigating-cancer-care/side-effects/fatigue
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Mark11
Re: Revlimid, fatigue, and anemia
Hello Michel,
You have great inputs from Multibilly and Mark 11.
However, I wonder if your dex (and / or Revlimid) levels aren't too high for the long-term maintenance. I had a 'fatigue' problem tolerating even the 20 mg weekly dex. There is a fair amount of discussion about the nasty side effects of dex, here on the Beacon. I can only relate your 'fatigue' to my experience:
I could not tolerate even a 15 mg Revlimid after my dex was dropped, as evidenced by the Revlimid rash on the 11th day. Now I am on a 10 mg Revlimid-only (3 weeks on and 1 week off) maintenance regimen. I was on 15 mg Revlimid, 20 mg weekly dex and weekly Velcade shots, even during the 9 cycles of the induction phase and I had noticeable and constant fatigue towards the end of this induction phase! I never had anemia and my Hg and platelets were at or just below the "normal" levels throughout the induction phase. I opted not to undergo a stem cell transplant.
My kappa and K/L ratios rose as soon as my dex was stopped and the Revlimid was lowered (from 15 mg, 3 weeks on and 1 week off to every alternate day); kappa from 12.5 to 30+ and K/L from 1.05 to almost 2. The 10 mg Revlimid on the 3 weeks on, 1 week off seems to have helped only after a single cycle and my kappa is stable around 33 but the K/L ratio has dropped to 1.5.
My oncologist is reluctant to add any dex to my maintenance regimen, even at the weekly 8 mg! He is concerned about the long-term side effects of dex and would only add it to my maintenance as a last resort. Only your oncologist can reassess your dosing levels. However, based on reading almost every post on this subject, it seems that your 25 mg Revlimid and 40 mg dex is at the full induction phase levels. Many of us are on a 5 to 15 mg Revlimid only maintenance.
Amazingly, you have managed well and working full time since 2013, in spite of your current dosing. Best of luck.
You have great inputs from Multibilly and Mark 11.
However, I wonder if your dex (and / or Revlimid) levels aren't too high for the long-term maintenance. I had a 'fatigue' problem tolerating even the 20 mg weekly dex. There is a fair amount of discussion about the nasty side effects of dex, here on the Beacon. I can only relate your 'fatigue' to my experience:
I could not tolerate even a 15 mg Revlimid after my dex was dropped, as evidenced by the Revlimid rash on the 11th day. Now I am on a 10 mg Revlimid-only (3 weeks on and 1 week off) maintenance regimen. I was on 15 mg Revlimid, 20 mg weekly dex and weekly Velcade shots, even during the 9 cycles of the induction phase and I had noticeable and constant fatigue towards the end of this induction phase! I never had anemia and my Hg and platelets were at or just below the "normal" levels throughout the induction phase. I opted not to undergo a stem cell transplant.
My kappa and K/L ratios rose as soon as my dex was stopped and the Revlimid was lowered (from 15 mg, 3 weeks on and 1 week off to every alternate day); kappa from 12.5 to 30+ and K/L from 1.05 to almost 2. The 10 mg Revlimid on the 3 weeks on, 1 week off seems to have helped only after a single cycle and my kappa is stable around 33 but the K/L ratio has dropped to 1.5.
My oncologist is reluctant to add any dex to my maintenance regimen, even at the weekly 8 mg! He is concerned about the long-term side effects of dex and would only add it to my maintenance as a last resort. Only your oncologist can reassess your dosing levels. However, based on reading almost every post on this subject, it seems that your 25 mg Revlimid and 40 mg dex is at the full induction phase levels. Many of us are on a 5 to 15 mg Revlimid only maintenance.
Amazingly, you have managed well and working full time since 2013, in spite of your current dosing. Best of luck.
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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: Revlimid, fatigue, and anemia
Thanks to all of you for your answers. Despite a few annoying side effects (see below), I seem to be tolerating the current dosage of Revlimid fairly well. The dex keeps me awake for a couple of nights as well as giving me bouts of hickups.
I'll pay a special attention to both the hemoglobin and hematocrit levels on my next blood tests.
As far as side effects of the Revlimid are concerned, I do suffer from almost perpetual diarrhea, but Imodium does a good job of controlling that thus far. I also suffer from occasional blurred vision. The other side effect which is particularly annoying are almost non-stop periods of cold symptoms accompanied by intense coughing to the point where I sometimes having problems sleeping (anyone here has that problem?). I also wound up in the hospital a couple of times with pneumonia and influenza. I guess that's a small price to pay (although my insurance company might differ) to keep the myeloma under control.
Godschickee,
Your husband is starting the journey so many of us here have experienced. I hope all goes well for him and also for yourself. The encouraging fact is that there has been so many advances in research and treatment options that your husband can look forward to many more years of active and productive life.
I'll pay a special attention to both the hemoglobin and hematocrit levels on my next blood tests.
As far as side effects of the Revlimid are concerned, I do suffer from almost perpetual diarrhea, but Imodium does a good job of controlling that thus far. I also suffer from occasional blurred vision. The other side effect which is particularly annoying are almost non-stop periods of cold symptoms accompanied by intense coughing to the point where I sometimes having problems sleeping (anyone here has that problem?). I also wound up in the hospital a couple of times with pneumonia and influenza. I guess that's a small price to pay (although my insurance company might differ) to keep the myeloma under control.
Godschickee,
Your husband is starting the journey so many of us here have experienced. I hope all goes well for him and also for yourself. The encouraging fact is that there has been so many advances in research and treatment options that your husband can look forward to many more years of active and productive life.
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mpion55 - Name: Michel Pion
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2011
- Age at diagnosis: 56
Re: Revlimid, fatigue, and anemia
Hello,
My doctor gives me lorazepam (Ativan) to take the two nights dexamethasone causes bad insomnia. It really does allow me to get some sleep. It is odd with all the intense fatigue that I can have such bad insomnia. Even on good nights I wake several times.
But, ask your doctor about some sleep aids, I hope you find help. Sleep is so important.
My doctor gives me lorazepam (Ativan) to take the two nights dexamethasone causes bad insomnia. It really does allow me to get some sleep. It is odd with all the intense fatigue that I can have such bad insomnia. Even on good nights I wake several times.
But, ask your doctor about some sleep aids, I hope you find help. Sleep is so important.
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Hummingbird
Re: Revlimid, fatigue, and anemia
Although 70, I'm quite confident in identifying Velcade as the cause of my fatigue. A series about 4 years ago finished off my remaining running and cycling capacity, which had pretty much recovered following, separately, rounds of Revlimid (lenalidomide) and an autologous stem cell transplant, which gave nearly 2 years' remission. Since Revlimid recently seemed to be losing efficacy, I was switched back to Velcade, and after three cycles, was suddenly wiped out. I had to be ambulanced in (fell over, could scarcely CRAWL) and hospitalised with five drips (blood, platelets ... not all at the same time!) through two cannulas. Now out and getting around slowly.
By the way, I see the consultant again next week, and won't be keen on re-starting the Velcade. We shall see.
By the way, I see the consultant again next week, and won't be keen on re-starting the Velcade. We shall see.
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old geezer
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