The Myeloma Beacon

Independent, up-to-date news and information for the multiple myeloma community.
Home page Deutsche Artikel Artículos Españoles

Forums

Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Coping with myeloma treatment side effects

by albertlannon on Wed Oct 31, 2018 9:39 am

I had my dexa­meth­a­sone yesterday morning, followed by my weekly Kyprolis infusion, and the discomforts have mostly passed, but I couldn't sleep. So I was up and writing this at 2:00 a.m. I had an infusion week off last week and, wow, was that ever good! Something to look forward to in another three weeks.

I thought I'd pass along my methods of coping, starting with four mantras:

  1. The Serenity Prayer: Grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
  2. This quote from Joseph Campbell: We cannot cure the world of sorrows, but we can choose to live in joy.
  3. It's all connected!
  4. This, too, shall pass.
And I try to avoid the default senior conversation about our aches and pains and pills and potions, except that I do talk about my cancer. I find many people don't talk about it, maybe because they somehow think it's their fault, that it's somehow shameful. I find talking about it opens up floodgates for those who have or had cancer, or who have friends and loved ones with the disease. Talking about it can help make it right-sized, help folks realize they do not have to face it alone, and gets us out of the self-centeredness that is an unspoken side effect of chronic illness.

albertlannon
Name: Albert Lannon
Who do you know with myeloma?: self
When were you/they diagnosed?: June, 2017
Age at diagnosis: 79

Re: Coping with myeloma treatment side effects

by albertlannon on Wed Oct 31, 2018 10:01 am

I didn't realize when I posted earlier about coping with side effects that I left out the most important thing, the guiding principle everything else fits into, and that is to take life One Day At A Time. Yesterday is a cancelled check, tomorrow is an IOU, and today is the only cash we really have to spend.

I could blame sleeplessness, old age, and/or chemo brain for leaving that out, but maybe, just maybe, it's that I am actually using that principle as the framework for what remains of my life. Yay!

albertlannon
Name: Albert Lannon
Who do you know with myeloma?: self
When were you/they diagnosed?: June, 2017
Age at diagnosis: 79

Re: Coping with myeloma treatment side effects

by bodumene on Sat Nov 03, 2018 9:11 pm

Insomnia is a common side effect of dexamethasone. However, there are drug treatments to help. I have a "sleep doctor" who prescribes drugs that help, that I take only on the night of the day that I take dex, and occasionally the next night. However, I would assume that any doctor who is knowledgeable about the issue could help. A certain amount of experimentation was necessary for me until I got the most benefit, with the least side-effects from the sleep drugs.

The drugs I use are a combination of gabapentin, Belsomra (suvorexant), and Sonata (zaleplon) or Lunesta (eszopiclone). Others I know take Ambien (zolpidem), but I never have. There are other approaches to the dex-induced sleep problem as well.

The dosages for me had to be determined by trial and error. Generally, I can get about 6 hours of sleep on a dex night with these drugs, compared to close to no sleep without them.

Good luck!

bodumene
Name: bodumene
Who do you know with myeloma?: myself
When were you/they diagnosed?: January, 2017

Re: Coping with myeloma treatment side effects

by K_Shash on Sun Nov 04, 2018 9:09 am

I have had a very good experience with just a half an adult Benadryl (diphenhydramine). Benadryl was recommended to me on this forum early during my induction treatment, and I have been taking it every night from December 2014. I get about 6 hours of sleep with it, too.

Some people react to Benadryl differently, though. A couple of my friends feel more 'hyper' with Benadryl. But worth a try at least.

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

Re: Coping with myeloma treatment side effects

by albertlannon on Sun Nov 04, 2018 10:19 am

I tried Benadryl several times. Slept for 1 or 2 hours and then up most of the night, pretty much the same as not taking it. Really don't want to add more drugs to my system, so I don't want sleeping pills. I just plan on not doing anything the next day and try to take a good nap.

albertlannon
Name: Albert Lannon
Who do you know with myeloma?: self
When were you/they diagnosed?: June, 2017
Age at diagnosis: 79

Re: Coping with myeloma treatment side effects

by Ellen Harris on Sun Nov 04, 2018 8:58 pm

I use low dose (1/2 mg) Ativan (lorazepam), which really isn't a "sleeping pill," but it does relax me and I can generally sleep about 4 hours. Couple that with about two additional hours, and I can manage on 6 hours most days, if necessary.

Ellen Harris


Return to Treatments & Side Effects