Pat’s Place: Don’t Give Up On Seeking Help To Improve Your Quality Of Life!
"You gotta fight – for your right – to party!" Remember that popular 1986 song by the Beastie Boys? I was never a "rocker," but I couldn't get the song out of my head yesterday morning while I was doing some yard work.
A fellow multiple myeloma patient recently asked me, “How do other patients you know deal with their fatigue? I’m tired all of the time…” A great question with no simple answer.
So many things can cause fatigue in a multiple myeloma patient. Stem cell transplant patients can feel the effects of fatigue for years. The medications we take can contribute, too. Ongoing chemotherapy may make it tough for our bodies to recover, so they always need to work overtime – enough to leave anyone feeling tired and listless.
So how did I answer her question? By stressing how it’s a patient’s responsibility to not accept feeling lousy. Too often, patients passively accept living with side effects that make it difficult to live their daily lives. I suggested that if her doctor couldn’t help her to feel better, it was up to her to find a doctor who could!
Since fatigue is most often an underlying symptom, there isn’t a specific medical specialty that excels in treating it. But maybe thinking outside the box might help. Maybe an herbalist could help. Acupuncture may help, too.
Although it’s counter intuitive, exercising regularly is often the best remedy. Last night, I felt bad a few hours after my Velcade (bortezomib) injection. Instead of lying on the couch feeling lousy, I got up and got out and walked our dog. By the time I was to the end of the block, I felt much better. No, it wasn’t easy getting started. But I’ve learned from experience that exercising after my treatments help.
Struggling with pain and numbness caused by peripheral neuropathy? Maybe a doctor or alternative medicine practitioner who works with diabetics can help. Or maybe a pain management specialist will do the trick.
Breaking out in a rash when you take Revlimid (lenalidomide)? Discuss the dose you’re taking with your oncologist, then consult a dermatologist for a prescription that can provide relief.
Trying to live with chronic back pain? Expand your health care team to include a pain management specialist and/or an orthopedist who specializes in working with cancer patients with bad backs.
If their initial suggestions don’t bring enough relief, keep trying! There is no reason for the vast majority of us to live in chronic pain.
Maintaining a good quality of life — while battling a cancer like multiple myeloma — is a fight! I understand how difficult and time consuming attending to our health care can be. I get it. I’m guilty of not pursuing possible remedies to a number of inconvenient side effects that I’m living with right now. Finding a specialist isn’t easy. And sometimes it takes several tries before we find someone who can help.
But before you give in and give up, consider making the effort, which is not an easy thing for someone battling chronic fatigue to do! Suffer in silence, or fight hard to get help. You may decide to seek help from a specialist for one symptom but not another. I’m simply suggesting that you carefully weigh the pros and cons of sitting back and doing nothing, or making an effort to find help to fix it.
But don’t expect someone to fix things on the first try. Trial and error using different medications is common, even when working with the most qualified specialists.
Maybe we should change the lyrics of the Beastie Boys’ song to go something like this: "You gotta fight – for your right – to live an active, pain free life!”
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
Great column! I agree with you about the exercise; it has helped me a great deal!
Absolutely, Karen! But its a touchy subject, right? Telling someone that can barely get out of bed to start walking, riding or swimming. I'm intrigued by the pedal racks you can buy and then "ride" in a comfortable chair at home, watching TV. I use a simple stepping device I bought at a second hand story for $10. Gets my heart rate up while I wave some 5 lb weights around doing curls and arm presses. Again, it helps that I used to own a health club and coached. I understand how the muscles work, the dos and dont's of aerobic excercise; that sort of thing. But you know what readers? If you don't know how, find someone that does! Go to some physical therapy and learn what to do. See, Karen; sounding preachy!
Pat
For neuropathy I found Vitamin B6 and R-Lipoic Acid. Adjust dose until you feel results, then back off a little. No known side effects for me.
Thanks Pat for a great column. Fatigue plagued me for a long time during and after all the treatments I had. Exercise, especially walking, helped a lot, and not surprisingly, getting extra sleep helped! It was a 'shift' in lifestyle for me, couldn't take my health for granted anymore, and had to compensate and make adjustments. With all of your background in sports and physical fitness, you are a good coach for us myeloma patients now!
I truly enjoy reading all patient's comments and suggestions, that's a good way to help each other. When you have a good thing going, make it public!
I am starting my 15th year of MM treatments and have lots of experience.
Any questions, just ask!
I. Theegarten.
Thanks for the input, Eric! Always great to hear from our friends north of the border, Nancy! Thanks to you and Illa for your kind words!
Thanks for writing what I experience Pat! I survived all my initial treatments, an auto SCT summer 2010, maintenance Revlimid until summer 2012 and I enjoyed about 9 months of actually feeling pretty good (even got a pedometer!)... and then Aug 2013, I was told I'm out of remission :/ My energy has been waning and honestly, I am dreading treatments again. (My students and colleagues ask what am I doing still working?!) Hello beginning Dex tomorrow and then Rev or Velcade to come... or prep for another auto SCT... ugh... where's that magic pill to make us all better!!! Thanks for your great blog, column, articles, updates, guest columnists, etc! You're doing a fantastic job Pat bringing all us Myeloma-ites together!
Sorry to hear about your relapse, Julie. Welcome to our exclusive, unfortunate club! I understand it's difficult, but try to stay positive. I understand is somebody off the street said that, you'd want to smack 'em! But this is me talking. Relapse is a part of our life. Most patients survive four, five, six or more relapses. I try not to let needing ongoing therapy get me down. It does once in a while. But the way I look at it, if I'm moping around, anticipating my next unpleasant treatment, I'm missing out on some precious days that I'll never get back. Sounds like you need to pamper yourself a bit. I should step back and cut back on my workload. Maybe you should, too. BUT, if its part of what keeps you going (like it is for me), then stick with it! Hard, but you'll get used to ups and downs of therapy again. It's a dex day today for me; getting lots done, flying through my work--yet weary because I didn't sleep well last night. We live in a world of contradictions, don't we? Good luck with new therapy! Think long and hard about that second transplant. Statistics say one can expect around one half a length of response. Is it worth it for a year at this point? Maybe down the line a bit. My guess: therapy will be much easier for you to take now that the transplant is a distant memory, and your body has had time to recover.
Hi Pat,
Thanks for article - Good timing as I got up from a relatively sleepless (Dex) night, feeling a bit depressed. Article was nice encouragement and good reminder not to just feel sorry for myself. I try to avoid it, but it gets difficult sometime. I was diagnosed in Jan 2012 and have been on Revlimid, Velcade (caused awful neurpotathy), Kyprolis and Pomalyst. They all work for a while but then reach plateau. Now, I just started on combination of Pomalyst and Kyprolis. Doctor told me to start thinking seriously about SCT (already harvested and stored stem cells) but I'd like to put that off as long as possible. Mostly due to work situation.
Anyway, nice article (as always) and looking forward to reading your book on stem cell transplant. I finished first book last week.
Best Regards,
Kevin
Pat,
Thanks for the encouragement to exercise in whatever way we can. Your column is timely because I recently started walking the perimeter of our backyard which is rather large. I thought this would be better than nothing, and I could finish half a dozen laps without being fatigued. I actually felt better the rest of the day and plan to keep it up. I've also added some balancing exercises, on one foot at a time, plus arm circles while watching TV. I don't spend a lot of time at this yet, but getting the habit established is my current goal! We appreciate your sharing your experience and knowledge.
Linda
P.S.
Pat, I neglected to say I am starting Revlimid 10 mg this coming week after 2 1/2 years off chemo. I have not had Revlimid before and am nervous about the side effects, especially DVT's so I'm even more motivated to keep my body moving and not be a couch potato
Hopefully the exercise will be beneficial.
Linda
Great to hear from you, Linda and Kevin! YES! Get off that couch!
As always, a great bit of writing, Pat. I always learn something.
Today?
1: that we can expect five or six relapses. I didn't know that. VERY encouraging, frankly. I am still going strong after Round One (it's been just over 2 years now), so knowing there may be five or six more rounds in me (tho, admittedly, probably shorter and weaker every time) is quite a lift!
2: that a second ASCT is only half as effective as the first. That gives pause for thought, eh?
3: that fatigue is 'normal', even this far out. I feel quite guilty and/or frustrated some days, I tell you. "I'm to young for this" is often in my head. Now, I have to confess that my first ASCT caused significant heart damage, and that it and the drugs against it both slow me down quite a bit, but I concur at least partially regarding exercise. In my case, tho, there is a limited gas tank, and I have to be a bit careful how I parcel out my energy or I end up a wet rag in my lazyboy by noon (and sometimes thru the next day)
it's a learning curve and an adventure, that's for sure... and folks like you keep it positive, so thanks!
Wonderful column an and issue I deal with frequently. Thank you!
Thanks Pat for another great column. There are a couple of things I tell myself (if not everyday, every other day): Suck it up Princess & get on with it; I can I will and I am; I get knocked down but I get up again. Of course there are the days when I think not today & I have some chocolate instead ;).
Take care,
Libby
Snip, all rules of thumb; you results may vary! But reasonable guidelines, shared with me by patients, nurses and doctors. Glad you're doing so well, that April has been there, done that, and that Libby still has a wonderful sense of humor, even when things get tough!
Pat
Thanks for another great column and I would like to strongly echo your comments about fitness. I have been fighting MM for 4 years and I am absolutely convinced that fitness has helped my body to better absorb the MM treatments and has helped me to bounce back after 2 MM relapses.
I am now day 35 post an Allo transplant with donor cells from my sister. The first 3 weeks of my Allo were tough with a significant infection and GVHD. I have now enjoyed a rapid and sustained recovery over the last two weeks. I am sure that my underlying fitness has helped with my recovery.
One of my key priorities when I get home is to recommence a structured fitness program. The program will include progressively harder training sessions and lots of good quality sleep.
Regards Ross
Great advice, Ross! So glad things are working out for you!
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page