[Terrij]

Why is dex given with other myeloma treatments?

by Terrij on Mon Oct 20, 2014 7:11 pm

Why is dexamethasone prescribed when taking chemo for myeloma? It really disturbs sleep, which is not good when your immune system is compromised .

[Cheryl G]

Re: Why is dex given with other myeloma treatments?

by Cheryl G on Mon Oct 20, 2014 8:22 pm

Hi Terri,

It probably won't surprise you to hear that this question has come up here in the forum before. Dr. Libby explained the reason dex is given with other myeloma treatments in this previous forum posting:

https://myelomabeacon.org/forum/dexamethasone-t414.html#p1607

Here is what he wrote:

Steroids actually have an anti-myeloma effect when used alone. They also potentiate the effect of other drugs like Revlimid and Velcade. Steroids have been used for many decades for myeloma but their effect when used alone is minimal and brief. Steroids have many bad side effects (as any myeloma patient can tell you !) therefore we limit the dose and combine them with other agents for maximal and longest lasting effect while minimizing toxicity."

[Terrij]

Re: Why is dex given with other myeloma treatments?

by Terrij on Mon Oct 20, 2014 8:56 pm

Thanks for the info. I knew they worked together but my daughter is having a hard time sleep­ing and she isn't even on a very high dose.

[Eric Hofacket]

Re: Why is dex given with other myeloma treatments?

by Eric Hofacket on Mon Oct 20, 2014 11:26 pm

Terri,

I am on 40 mg dexamethasone once a week and I took my dose this morning. By far the hardest thing for me with dexamethasone is sleeping the first two nights after I take it in the morning on Monday. When I started back up on it, I did not sleep any the first two nights. And I mean not just lying in bed having trouble dosing off, but out of bed watching TV and reading all night and doing other things. It is really a strange thing to go into work Tuesday morning not having slept the last two nights and not be the least bit tired and get a lot done in the day.

Last week I removed and installed a new toilet and had the job done by 5:00 a.m. In time, I have been getting a few hours of sleep on Tuesdays and even Mondays. I have tried sleeping pills three years ago when I was on dexamethasone but found they did little if any good. Other people have found they have helped them some.

For me what I have done is adapt my schedule the best I can around dexamethasone instead of trying to fight it. I work 12 hour days on Monday and Tuesdays and often over 8 on Wednesday. By Wednesday afternoon the crash can start to come and certainly by Thursday I am starting to feel really wiped out. So on Thursdays and Fridays I work short days or do not come in at all and rest at home. Doing this I have still been able to work 40 hour weeks.

I am single and have no family responsibilities. I can see of one has a family and children though those responsibilities never take a day off and dexamethasone can make things really hard.

I believe that dexamethasone affects my sleep more than most. Others have side effects that do not seem to affect me as much.

[Terrij]

Re: Why is dex given with other myeloma treatments?

by Terrij on Mon Oct 20, 2014 11:39 pm

Eric, your situation with dex sounds like my daughter's. She takes 40 mg on Thursday mornings when she goes for her infusion of carfilzomib [Kyprolis]. Thursday nights she doesn't sleep at all. By Monday when she crashes she is really tired. Monday being the first day of the work week it's hard.

Her company is really great, but she already is not in the office on Thursday and Friday mornings doing her chemo. She relapsed in August two years after her SCT. She doesn't want to take any sleeping aids since she is already taking so much other medications.

[Big Bill]

Re: Why is dex given with other myeloma treatments?

by Big Bill on Sat Oct 25, 2014 12:50 am

I take my 40 mg of dex on Friday mornings, I drive a semi for I am a road construction and continue to work. That night I usually get 3-4 hours of sleep but only after one time did sleepless affect two nights. I usually get jet-lagged for two days the weekend and go back to work starting a new week refreshed. I have noticed some mood changes, so I try to be more aware of this. I am hoping the steroid use is short but have to consider the alternative.

[darnold]

Re: Why is dex given with other myeloma treatments?

by darnold on Sun Oct 26, 2014 1:25 pm

My experience has been similar to Eric's, although I did sleep some. I was back on Velcade / dex for four cycles, taking 40 mg of dex Monday morning. I slept maybe 3 -5 hours on Monday and maybe 5 on Tuesday. Wednesday I start to crash.

My job has a liberal telework policy, with all of my staff and I teleworking 3 days per week and coming into the office two days per week. I changed one of my telework days so I went into the office on Tuesday, when I knew I'd be hyper and Wednesday, knowing I'd be getting more and more tired as the day progressed. Wednesday and Thursday nights I slept 10 hours, and I usually had a down day at least one of the weekend days.

I finished cycle 4 a couple of weeks ago. This past week was the best I've felt in months. Tuesday I see the oncologist again, and I hope to hear that I am back in remission – although I'm pretty sure he's going to put me on Velcade / dex for maintenance this time.

Dana A