[Meglet]

Debilitating fatigue - does it end after treatment?

by Meglet on Fri Oct 09, 2015 3:45 pm

I was diagnosed in November 2014 with IgA kappa multiple myeloma. I started the Total Therapy 4B (low risk) clinical trial at UAMS in Little Rock, Arkansa in January 2015. I com­pleted my second melphalan / stem cell transplant (SCT) round in August 2015 and will soon head back to Little Rock to begin the first consolidation round of the trial.

I would especially love to hear from fellow multiple myeloma patients who suffered debilitating fatigue prior to diagnosis, similar to what I experienced as described below. I’m curious if your fatigue has lessened post-treatment, or in the maintenance phase, and how / if / when you were able to return to work.

Historically, my main symptom of multiple myeloma has been debilitating fatigue. In 2009 and 2010, I entered a period where I could not complete an 8 hour work day at my desk job. My general practitioner ran a slew of tests in 2010 and was not able to diagnose multiple myeloma at that time (though looking back at my blood work, I did have elevated IgA levels; but I assume that value just looked like an outlier). Although I was anemic, my GP could not identify a cause. I discussed my fatigue with an endocrinologist and my Ob/Gyn, as well. I began taking thyroid medication following my visit with the endocrinologist.

When you mention fatigue and you’re a woman of a certain age, the common medical re­sponse is “menopause”, and “depression”. “Aging” and “chronic fatigue syndrome” were also brought up. I felt these did not apply to me, but since I’d spoken with so many doctors and I had other life issues to deal with, I was discouraged at that time and did not pursue a definitive diagnosis.

I believe the thyroid medication helped me continue to work full time (though I did reduce my work hours slightly). Between 2010 and 2014, my social life suffered greatly because I was trying to rest every evening and weekend, just so I could make it through the work week. In fall of 2014, I again could not complete a full work day due to fatigue. Blood testing at this time indicated I was anemic and had elevated proteins, which eventually led to my multiple myeloma diagnosis.

Most people I’ve talked with about their diagnosis found out they had multiple myeloma because of routine blood work results or bone issues. I have not yet had someone indicate to me they found out they had multiple myeloma because of the symptom of debilitating fatigue.

Since the clinical trial treatments also leave me fatigued, I am curious to know if I will have more energy once I enter the 3-year maintenance period. I would love to hear from someone who similarly suffered debilitating fatigue before diagnosis and how they feel post-treatment. Please let me know how things are progressing for you if this is the case. I am very concerned about my ability to continue working. For those who have taken the time to read, please feel free to offer up advice.

[lrankin]

Re: Debilitating fatigue - does it end after treatment?

by lrankin on Wed Sep 14, 2016 11:25 am

My husband, who is 48, has debilitating fatigue. It is now a year since his diagnosis. He had Revlimid, Velcade, and dexamethasone induction therapy, an autologous stem cell transplant (ASCT), and now is on Revlimid maintenance. He is fatigued beyond just needing a nap.

What is your current situation with debilitating fatigue, and have you found anything to help? Thank you.

[Meglet]

Re: Debilitating fatigue - does it end after treatment?

by Meglet on Mon Sep 19, 2016 5:28 pm

I have not found anything to help with my fatigue and still consider it to be extreme. I completed my consolidation therapy in December, began maintenance therapy with Revlimid, Velcade, and dexamethasone in February, then stopped maintenance therapy in April due to side effects. Since I have not had chemotherapy drugs in 5 months, I thought I would be able to return to work by now.

I do think I am still improving, but at an incrementally slow pace. For the past 5 months, I have been awake / up for 2 to 3 hours and resting/sleeping for 2 to 3 hours during the day (alternating), and sleeping 8 to 11 hours at night. I am currently trying to increase my endurance and be "active" for a period of 4 hours in a row during the day, but when I get fatigued I first get nauseous, then lightheaded, then just feel generally all-over not well. Laying down and resting (not necessarily sleeping) gets rid of those symptoms.

I'm sorry I couldn't be more encouraging. I hope your husband's energy improves quickly. Please keep discussing with his doctor, maybe they could try different maintenance drugs.

[Shirley M]

Re: Debilitating fatigue - does it end after treatment?

by Shirley M on Tue Dec 20, 2016 7:33 pm

Hi Meglet,

I am just seeing your post and am grateful for it. I was diagnosed with multiple myeloma in January of this year at the age of 57. I had symptoms for two years before diagnosis. The first real fatigue moment I remember happened during a yoga class and my thought was "I hate this," but I always loved yoga. Since diagnosis and during 10 cycles of treatment with Revlimid, Velcade, and dexamethasone, my worst symptom is debilitating fatigue – the kind that leaves you without motivation for any of the things you used to love. I am also bothered by brain fog.

I don't think they're due to depression. I feel so guilty, there's so much I want to do, and I have a 17-year-old daughter who is understanding, but I want to be the energetic mom I used to be that she is probably forgetting. My oncologist has not found anything to explain the severity of the fatigue. Anyway, I understand what you're going through, and I hope you see improvement.

Shirley

[Meglet]

Re: Debilitating fatigue - does it end after treatment?

by Meglet on Tue Dec 20, 2016 10:22 pm

Hi Shirley,

I'm glad to hear your story. It's been 2 years since my diagnosis and though I'm in remission, I am still not capable of returning to work due to fatigue. I get frustrated when friends invite me to dinner and a movie and I can do one but not both. I'm also jealous of those patients who can still work!

I have a son in his early 20s, so I understand your concern about missing out on quality time with your daughter. Do the best you can, she'll understand pretty well.

Thanks for posting.

[Rhonda]

Re: Debilitating fatigue - does it end after treatment?

by Rhonda on Wed Dec 21, 2016 11:08 am

Hi Meglet

I too suffer with fatigue. I feel mine is attributable to several things, such as just knowing I have an incurable disease, recovering from a stem cell transplant in August 2015, Kyprolis maintenance treatment, and of course the disease itself.

When I know the fatigue isn't caused from over doing it, I will drink a Gatorade, I will also get out­side if possible and go for a walk. I try to stay on the positive rather the negative, which isn't always easy, but it does help when I do.

I stopped working shortly after the transplant because I was so tired all the time. I try to remind myself the fatigue can't win, life is too short!

Merry Christmas and a Happy 2017!

Praying for a cure,
Rhonda

[Shirley M]

Re: Debilitating fatigue - does it end after treatment?

by Shirley M on Wed Dec 21, 2016 5:49 pm

Thank you for your response, Meglet.

Rhonda, I am sorry to hear of your fatigue as well.

It is a challenge. I stopped working at the end of October because I was supposed to receive my transplant at the beginning of November. However, my transplant was postponed and might not happen until March.

I have had fatigue since well before my diagnosis. My daughter encourages me by going on walks with me. If I had my way, though, I would sit at the computer most of the time.

I too miss working, having more of a social life, yoga, and doing art and other things I used to love to do. Between the brain fog and fatigue, I can't seem to manage it. Definitely, trying to stay positive helps. I continually remind myself that things can change, and I am grateful for every bit of life that I have.

Thank you both for your stories and encouragement. I wish you all the best.

Shirley

[JBarnes]

Re: Debilitating fatigue - does it end after treatment?

by JBarnes on Tue Dec 27, 2016 12:23 am

I too suffer ongoing fatigue. I manage it via regular scheduled naps, but my activity level is really diminished over the many years of treatment. I try to keep moving, but there are some tough days. My doctor tells me there is little he can do to treat the fatigue. I've met a number of other myeloma patients and found there are many of us suffering from ongoing fatigue. Common feedback was to make sure you get up and keep moving each day even when you are feeling fatigued.

Although this is not helpful to you, it may make you feel better that many of us are in the same boat!