Our 32 year old daughter was diagnosed with myeloma 2 years ago. She had 4 months of induction followed by auto stem cell transplant. Feeling great after 6 months. They put her on Revlimid 10mg for maintenance.
Besides stomach issues, she is fatigued. Being so young, she wants a social life and tries to pace herself after working a full time job, but psychologically she is grieving for her active life of before.
She was in complete remission before transplant and still is, but is afraid to stop maintenance because she is trying to do everything she can to keep it from coming back as long as she can.
As her mother it is upsetting to see her try so hard to enjoy life when she is so fatigued. I wish she could stop the Revlimid. The psychological aspects of this disease or any cancer for a young person are devastating.
Forums
Re: Fatigue from Revlimid
TJ,
Many report fatigue from Revlimid, some more than others. I am on 10 mg as well and I do experience fatigue. Although it may seem counter-intuitive, I find that exercise when I am fatigued gives me more energy when I am done and counters the fatigue. I urge you to encourage your daughter to be active; it may help.
Many report fatigue from Revlimid, some more than others. I am on 10 mg as well and I do experience fatigue. Although it may seem counter-intuitive, I find that exercise when I am fatigued gives me more energy when I am done and counters the fatigue. I urge you to encourage your daughter to be active; it may help.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Fatigue from Revlimid
Ah, the fatigue from Revlimid and possibly from the transplants. When I went back to work full time after having my transplant, I realized that, although I felt good, I fatigued much more easily and really had to pace myself. In addition, I had a slow down in my cognitive processes that made it much more difficult to complete any writing that I had to do on a daily basis and contributed to the fatigue since I spent so much energy trying to concentrate.
Exercise a few days a week can help, but it needs to be relatively low level exercise to begin with. Walking, biking, swimming, etc. are good. Getting a referral for PT at a place that has an established cancer fatigue program is a good place to start. Also, some gyms have personal trainers who have been trained in cancer related issues and can help out. If there is a Cancer Support Community in your daughter's region, they have exercise classes, usually Yoga, Tai Chi, etc., that are very helpful and the people who teach the classes are trained to work with people with cancer. Your daughter's cancer center may also have some exercise programs available. The one I go to has Yoga and chair Yoga classes for free 5 times a week.
The other thing that is very helpful is to pace herself as you mention. This means not doing too many high energy things in one day, or consecutive days. I find that making a schedule for myself that includes the fun, social things that I want to do and then adding in the chore type things that need to be done to a calendar so that I can visually see what my activity requirements are for the week helps me to plan much better. I, then, am able to do most of what I want to do. Unfortunately for your daughter she also needs to build in the energy requirements of working.
Another suggestions is for your daughter to talk with her oncologist about her fatigue complaints and explore maybe decreasing the Revlimid dose that she is taking. Many people are taking doses lower than 10 mg as maintenance because they don't really tolerate that level of drug.
All the best to your daughter for living a long full life,
Nancy in Phila
Exercise a few days a week can help, but it needs to be relatively low level exercise to begin with. Walking, biking, swimming, etc. are good. Getting a referral for PT at a place that has an established cancer fatigue program is a good place to start. Also, some gyms have personal trainers who have been trained in cancer related issues and can help out. If there is a Cancer Support Community in your daughter's region, they have exercise classes, usually Yoga, Tai Chi, etc., that are very helpful and the people who teach the classes are trained to work with people with cancer. Your daughter's cancer center may also have some exercise programs available. The one I go to has Yoga and chair Yoga classes for free 5 times a week.
The other thing that is very helpful is to pace herself as you mention. This means not doing too many high energy things in one day, or consecutive days. I find that making a schedule for myself that includes the fun, social things that I want to do and then adding in the chore type things that need to be done to a calendar so that I can visually see what my activity requirements are for the week helps me to plan much better. I, then, am able to do most of what I want to do. Unfortunately for your daughter she also needs to build in the energy requirements of working.
Another suggestions is for your daughter to talk with her oncologist about her fatigue complaints and explore maybe decreasing the Revlimid dose that she is taking. Many people are taking doses lower than 10 mg as maintenance because they don't really tolerate that level of drug.
All the best to your daughter for living a long full life,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Fatigue from Revlimid
My experience was 3 1/2 years without any maintenance, I had no sign of the disease in the standard blood and urine tests, and then had it reappear 4 months ago. I'm on Revlimid now and the fatigue is a reality that is hard to deal with. Perhaps she should discuss the options with the oncologist.
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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: Fatigue from Revlimid
Hi,
I want to second the comments about the benefits of exercise to combat Revlimid (and other chemo) fatigue.
And this gives me an opportunity to mention a wonderful program - "Livestrong at the YMCA." It is a free 12-week small group exercise program for cancer survivors that is conducted at many YMCAs in the US. I did the program from April through June of this year and am going through withdrawal now that my 12-week session is over. All of the exercise is tailored individually, so you can do what you are capable of. Beyond the exercise, a great sense of community developed among the participants in our group.
I highly recommend it!
Mike
I want to second the comments about the benefits of exercise to combat Revlimid (and other chemo) fatigue.
And this gives me an opportunity to mention a wonderful program - "Livestrong at the YMCA." It is a free 12-week small group exercise program for cancer survivors that is conducted at many YMCAs in the US. I did the program from April through June of this year and am going through withdrawal now that my 12-week session is over. All of the exercise is tailored individually, so you can do what you are capable of. Beyond the exercise, a great sense of community developed among the participants in our group.
I highly recommend it!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Fatigue from Revlimid
I also concur with what has been said here - exercise helps, although it does have to be moderate (at least for me). What I also want to mention is that I have recently discovered that my adrenals aren't working quite right, quite possibly damaged by the dexamethasone I took before my stem cell transplant. I have been working with a homeopathic doctor who has me on some supplements that have really been helping me out a lot. So I encourage you to explore these options if you are really struggling!
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hawkb4 - Name: Lisa
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 7/8/2012
- Age at diagnosis: 44
Re: Fatigue from Revlimid
Ditto, the comments made here.
Nancy, this is right up your alley...! Nice post.
Nancy, this is right up your alley...! Nice post.
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Rneb
Re: Fatigue from Revlimid
Hi,
I'm also interested in this topic.
My mother is 80 years old and suffers from mid to advanced dementia. Before she went on the Revlimid and dexamethasone treatment, she was doing pretty well. She still lives at home with my 82-year-old father, and between the two of us we were coping.
Since she started treatment, her fatigue has gotten progressively worse. It is now at the point where all she wants to do is sleep.
I am very interested in finding a solution to her fatigue.
I'm also interested in this topic.
My mother is 80 years old and suffers from mid to advanced dementia. Before she went on the Revlimid and dexamethasone treatment, she was doing pretty well. She still lives at home with my 82-year-old father, and between the two of us we were coping.
Since she started treatment, her fatigue has gotten progressively worse. It is now at the point where all she wants to do is sleep.
I am very interested in finding a solution to her fatigue.
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Lismer44 - Name: Jody
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: November, 2018
- Age at diagnosis: 80
Re: Fatigue from Revlimid
Hi All,
EJ has been on Revlimid for three years now, first as part of his treatment, and now as maintenance. Both were three weeks on, one week off. We've found that there is a rhythm to how the Revlimid affects him. Generally he starts getting fatigued the last half of the third week, and the first part of his week off. By the end of his week off he's back to normal.
Swimming helps him with his energy levels, but he's learned to give himself a break that third week. He may not swim as much, or make as many plans until his energy perks up a bit.
Lyn
EJ has been on Revlimid for three years now, first as part of his treatment, and now as maintenance. Both were three weeks on, one week off. We've found that there is a rhythm to how the Revlimid affects him. Generally he starts getting fatigued the last half of the third week, and the first part of his week off. By the end of his week off he's back to normal.
Swimming helps him with his energy levels, but he's learned to give himself a break that third week. He may not swim as much, or make as many plans until his energy perks up a bit.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Fatigue from Revlimid
I have been on Revlimid, 10 mg, since November 2015, after my first relapse. I do not notice any difference between weeks, but I need to sleep about 10 hours a night, so my day is short and I am always behind with both Internet and practical activities.
When I am awake I able to lead a normal life. I swim three times a week, about 20 laps in a 25 meters long pool. Sometimes I write articles on feminist concerns; I moderate an online group, and do house chores, shopping and cooking. Some things are too exhausting, like washing floors, and I wait for the once-a-week paid help for that. Were it not for the fact that right after supper I collapse, sometimes as early as 8:30, and if the English Queen entered the house I would still say, between a yawn and another, “come back tomorrow morning”, I cannot complain about my current state.
When I am awake I able to lead a normal life. I swim three times a week, about 20 laps in a 25 meters long pool. Sometimes I write articles on feminist concerns; I moderate an online group, and do house chores, shopping and cooking. Some things are too exhausting, like washing floors, and I wait for the once-a-week paid help for that. Were it not for the fact that right after supper I collapse, sometimes as early as 8:30, and if the English Queen entered the house I would still say, between a yawn and another, “come back tomorrow morning”, I cannot complain about my current state.
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
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