Mohr’s Myeloma Musings: Don't Let Fatigue Make A Coward Out Of You
In my March column, I wrote about starting a new chapter in my multiple myeloma book – maintenance therapy.
I started out with 10 mg of Revlimid (lenalidomide) per day in a 21-day cycle, without dexamethasone (Decadron). I very much welcomed the elimination of dexamethasone, as I experienced wild mood swings and serious insomnia during induction therapy. The fact that the neuropathy I suffered from Revlimid during induction therapy (15 mg per day, 21-day cycle) was tolerable made me optimistic that good things were in store for maintenance therapy.
A week into Revlimid maintenance, a rash broke out over my entire back. Treatment was stopped immediately, and the rash was treated with hydrocortisone valerate cream. Within a week, the rash was gone. The Revlimid dose was reduced to 5 mg per day, and I have had no reoccurrence of a rash anywhere.
Two weeks after starting the reduced Revlimid dose, I started experiencing fatigue. I was puzzled because the only fatigue I had experienced during induction therapy was dexamethasone induced. Was it a delayed effect from my autologous stem cell transplant, which occurred ten months ago? My doctor had told me that was a possibility.
Remembering my New Year’s resolution to become more educated about multiple myeloma, I researched cancer-induced fatigue. Like most people, I saw "tired" and "fatigued" as the same thing. However, I learned that they are not the same. Being tired is being drained of energy and strength – feeling a need to rest or sleep. A good night’s sleep cures being tired.
In my research, I also found a quote from Dr. Martha Jane Poulson, a Canadian doctor who suffered from various illnesses, including breast cancer, that I thought was very revealing. Before dying at the age of 49, Dr. Poulson noted that fatigue for a healthy person is not the same as for someone afflicted with cancer. She wrote "The deadening fatigue which invades the very bones of cancer patients is totally unlike the most profound fatigue of an otherwise well person."
When healthy, one can feel different types of fatigue. I remember the physical exhaustion from a tough practice or workout during high school and college. When healthy, one inevitably always catches a second wind. My daughter, a successful collegiate distance runner, has often talked about the "endorphin rush" after a long, hard run. I used to take a macho pride in stringing together two or three 18-hour work days when the situation demanded it. That fatigue was always washed away with an ice cold brew, followed by a long hot shower and a good night’s sleep.
The fatigue I experienced at the beginning of Revlimid maintenance was equal parts physical and mental. I was in bed most nights by 8:00 p.m., four hours earlier than normal. I lost a certain degree of zest for life. While I continued to do everything I have always done in regards to work and family, I had little enthusiasm for anything. Most days, I felt that I would be perfectly happy to be sitting on the sidelines. The idea of sitting and doing nothing was very attractive.
After about two weeks, my wife asked: “Is this what the rest of your life is going to be like?” Clearly it was time for a reality check.
A favorite message I used with my teams during my 29 years of coaching basketball was: "Don't let fatigue make a coward out of you." When basketball teams get fatigued, they make costly physical and mental errors and, eventually – without even knowing it – give up.
I was performing like a fatigued team, getting to the point of almost giving up. Without even realizing it, fatigue was turning me into a coward.
As a result of my wife’s pointed and alarming question, I immediately changed my whole approach to dealing with fatigue.
When a wave of fatigue hit me at work and I had a difficult time cognitively, I changed tasks. I visited teachers in their classrooms, mingled with students in the halls, or simply went for a walk in the woods located on our school campus.
At home, I resisted the temptation to immediately plop down into my chair upon arriving home from work and sit there for hours before going to bed. Spring has been here for weeks in Ohio, and there is plenty of physical work to do around the house. So I started working around the house. I also have taken up playing golf regularly (with my son) after a 20-year break. Long walks in the evening are now a part of my daily routine
A factor I failed to consider in what caused this sudden period of fatigue was stress. Research suggests that stress can bring on, or worsen, certain symptoms or diseases. I realize now that I was dealing with some of the most difficult issues I have ever been confronted with in my job when fatigue was controlling my life. The resolution of these issues coincided with my new approach, and I am convinced that helped ease the intensity of the fatigue.
The result of this change in approach has been significant. I am far more efficient at work, my family life is better, and I have a far more positive approach about the future. Make no mistake, fatigue still exists. However, the difference is that I am managing it. It is not controlling me.
By no means am I suggesting that this approach would work for everyone with multiple myeloma who experiences fatigue. The heterogeneous nature of multiple myeloma confirms that that is not the case. As I have stated many times in previous columns, I am fortunate that my challenges with multiple myeloma pale in comparison to those of many afflicted with the disease, and that is also likely the case with the fatigue I've experienced.
But, for those of you who do suffer from fatigue that isn't extreme and truly debilitating, perhaps a change in approach might be all that is needed to manage this bothersome symptom of the disease and treatment side effect.
Steve Mohr is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Steve,
It is interesting how your experience with Revlimid maintenance has been so similar to mine. One key difference, though, is I never had any rash while on 10 mg for over two years and even while on 25 mg for about 6 months. I guess I was fortunate.
Your description of fatigue is good. I have had a hard time articulating what it is like to others, and you did a much better job describing it than I have done. My GF does a lot of endurance events, such as Ironmans and marathons, and is almost always training for these events, so she is very familiar with being fatigued herself. She tries to relate her experience with fatigue to what I experience from the drugs I have been on. She does not quite get how it is different though as you described. But then her thyroid failed several years ago and she was experiencing extreme fatigue that I really would not understand unless I experienced it myself.
In my case though the fatigue did not match what you described until I went up to 25 mg, and then I started falling into the patterns you described of coming home and not doing much or having much interest in activities but resting and sleeping more instead. While on 10 mg it was not nearly so bad for me. I rode my bike 30 to 70 miles on weekends, lap swam several times a week after work, hiked a lot in the summer in the Sierra Nevada mountains, and skied in the winter while on 10 mg Revlimid. There seems to be a fair bit of variation in how these drugs affect people. Soon I will get to find out how Kyprolis will affect me.
Best wishes and keep us up to date on how you are doing.
I 've had pretty much the same drugs, and when I stopped them for a period, I felt also an enormous fatigue coming up every day. An explanation could also be that when you stop taking dexamethasone, you're body should learn to make that hormone itself again. That could take months before it is at the normal level. In that adaptive period you struggle with the fatigue, but you get your energy back in time.
I was on Revlimid plus dexamethasone for 2 years, I found that taking this medication with porridge oats is not only kinder to your tummy, but you were also spared the vicious side effects you can get from this drug combination. The slow release of these vital but toxic drugs into my system with the help of porridge worked for me.
I'm now in remission for over 5 years. Managing your myeloma needs is similar to managing a small business. It's daily requirement are good food, hydration, exercise (3 miles a day minimum), relaxation and sleep etc. Living with myeloma is not easy, but you can do a lot to make it less of a burden. Like any successful business, attention to detail always pays. Knowledge is power they say!
Thanks again for another great article and best wishes.
Doing a task really helps me too. I have a list of them on my frig, marked with a difficulty key. I can pick an easy or hard one depending on my energy. When I get busy, I always begin to feel better and when I'm done, I feel like I've accomplished something in the midst of fatigue. That's a really empowering feeling. Also little things, often ignored, get DONE!
Some tasks (I have 20) on my list are:
Sort top cupboard in kitchen
Sort my dresser drawers
Bathroom drawers
And so on
Depending on your fatigue you can make these bigger or littler. It really helps me. And, as I said before, stuff gets done.
Julia Munson, and pray for the cure!
Thank you Steve for this well expressed description of fatigue. For me it is really hard to break through my fatigue circle. As soon as I push a little bit to hard I am down for several days and I get a virus or bacteria on top of it. Still hope for improvement. I agree though, staying active as much as possible helps to stay at least mentally healthy.
Thanks for writing Steve. Nice article.
I'm looking for that spark that will make me start exercising again. I stay sort of active on the farm, but with baseball season underway, it is too easy (and very enjoyable) to sit and watch the game. So I've listened to a few on the radio while puttering around, and I feel better afterwards.
Julia--I love your list idea and I know what you mean about getting little things done.
Even before being sick, if I came home from a long hard day at work, as soon as I sat down, I was done for the day. So even when tired, I tried to spend 30-60 minutes doing stuff before sitting. It's like their glue on the couch...you can check in, but you cant' check out.
Steve,
Good article as always, I have been on 10 mg for about 18 months now, I suffer from fatigue, but diet exercise staying positive helps, because of my back problems this is the first year I have been able to get out and mow the majority of my lawn, it's been 3 yrs. since I was able to do this, and I enjoy it, I have a self perpelled push mow but still get tired, I know it because I'm out of shape for this type of activity, but get up,the next day and feel great !
Still have a few challenges from time to time with the revlimd but just need to be careful with what you eat.
Thanks everyone for your comments and advice!
Eric - Having to deal with the rash is the most troubling issue, as I had no such problems during induction therapy. Fatigue associated with mm is so hard to describe - about the only thing that we can all probably agree on is that we suffer from it to some degree.
Hans - I sure hope you are correct about getting my energy back!
Mervyn - Your point about attention to detail is what I need to improve upon in exercise, diet, relaxation, and sleep. While disciplined in my work habits, I am anything but that in taking care of myself.
Julia - My wife's "honey do" list (built up over 38 years of marriage) is big enough for me that I don't need my own list!
Christel - Sorry to hear that those infections keep cropping up for you. I have found that staying active does more for me mentally than physically also.
Stann - When you find that spark to start exercising regularly, let me know what it is!
Jack - I plan on discussing diet with my doctor at my 3 month check up in June.
Great article! Newly diag jan 2015 and started cycle 4 vel/dex/ 25 mg Rev.
Lots of side effects but find doing what you mentioned works.. I don't internalize
This disease ... It is definitely a part time job.. Do
What"s required and move forward! When I cannot
Go another step , I rest. When my head feels like
I am on a rocking cruise ship ( without the view!)
I sit down. Otherwise I push thru the other " stuff"
And do what is possible for that day. I don't call
MM. Terminal or fatal disease ...when I was 5 years old
I had polio.. No walking for me, they said... I
Since became a dancer, skier, horseback rider
And lived a lovely normal life. I believe in all the
New trials and meds, I believe in doing everything
I can to do a good job in my part time job, and
I believe in positive spirit and not considering
My life over... I am 67 and love life... Stay strong!