[Lin516]

Dexamethasone with Revlimid and Velcade

by Lin516 on Sat Oct 26, 2013 4:27 pm

I am taking 20mg. (4mg. x 5) the day of my Velcade and 20mg. the day after. My question is why so much? What would happen with less?

What are some of you doing to combat the side effects of the high dose steroids? I have ambien for sleep; but now feel I am going to need some ativan for daytime. I am so jittery.

Thanks!

[Lin516]

Re: Dexamethasone with Revlimid and Velcade

by Lin516 on Sat Oct 26, 2013 5:55 pm

oops, forgot about the neuropathy from chemo. What are you folks doing to counter the steroids?

[goldmine848]

Re: Dexamethasone with Revlimid and Velcade

by goldmine848 on Sat Oct 26, 2013 9:09 pm

I take 40 mg once a week. Need ambien for that night and the next. During the day lots of fluids and exercise help. Neuropathy is from Velcade. Be sure to tell your Doc because you cannot let that get out of hand. A small amount of of tingling is probably ok but pain and numbness that persists can be more problematic.

[heike]

Re: Dexamethasone with Revlimid and Velcade

by heike on Sun Oct 27, 2013 4:47 am

hello, and this actually helps! may i ask - can you quantify the "lots of drinking" - like really more than 2 litres per day?
and is there any special type of exercise or simply whatever you are able to?

thanks - and have a very good sunday!

heike

[goldmine848]

Re: Dexamethasone with Revlimid and Velcade

by goldmine848 on Sun Oct 27, 2013 8:41 pm

Both are difficult to quantify. Hydration is importaant and I make a special effort on treatment days and a day or two thereafter to just always have a drink handy. As for exercise, I think if you can do something aerobic within your regular capabilities it can be helpful. I am something of an exercise nut so what I generally do is probably not right for those less active.

And don't be misled; I still have effects from the treatments, just find them to be more manageable this way.

[heike]

Re: Dexamethasone with Revlimid and Velcade

by heike on Mon Oct 28, 2013 8:33 am

thanks!

[morrow1022]

Re: Dexamethasone with Revlimid and Velcade

by morrow1022 on Tue Oct 29, 2013 2:39 pm

Take Revlimid 25mg and 20 mg of dex. Don't want to be near me the day after the dex. The first 2 night after the dex I take ambien to get to sleep. Xanax help with the anxiety the 2 days after the dex. and staying away from the caffeine helps too. Been on this regiment for a year now.

[Barneasada]

Re: Dexamethasone with Revlimid and Velcade

by Barneasada on Tue Oct 29, 2013 6:01 pm

i take 20 mg of dex on monday and 20 mg of dex on thursday. (i split it up even before asking doc if it was ok, i felt 40 mg at one time is insane) Im on Kyprolis/Rev/Dex and think dex is worst part of treatment. Doc said splitting it up is fine but Ive been meaning to ask to go down to 20 mg a week since my local oncologist said it would help with Quality of Life but a risk is treatment might not be as effective (head oncologist in NYC still hasnt approved going down to 20 mg a week). I mean after being on dex for almost 1.5 years, i want to get off but know that itll be a part of my life for awhile. I deal with heavy duty headaches, lack of sleep overall, and i turn beat red day after i take dex plus i have the dex back ache late in the day after taking it in the morning. It sucks but supposedly makes all medicines work better. When i get to complete remission within the next two cycles (hopefully) plan is to go to low dose Revlimid and take as minimal meds as possible hopefully dex is part of that decrease. Best of luck but dex isnt any fun and is probably worse then chemo itself.

Mark
27 years old

[Tom184]

Re: Dexamethasone with Revlimid and Velcade

by Tom184 on Tue Oct 29, 2013 10:27 pm

I was also on RVD. I had a miserable time with the Dex as is the case with many, if not most of us. Each round I was on it I would go through withdrawal when I stopped taking it. It appears that my adrenal gland in effect would say, "I do not need to signal for the production of my own steriods as I am getting them from the outside world." I would feel like I had a bad flu and be on the recliner under a blanket wearing a hat and gloves and still shaking from chills. We stopped the dex in the middle of the third of four induction rounds because of the side effects. Two and a half years and a SCT later I am still in CR. I question if the Dex really does make all the other meds in fact work better. Basically, I could not cope with the side effects, stopped taking it, and do not seem any worse off for it. (Not to say that I will not go find some wood to knock on! )

Take care and best wishes to you.

[Beacon Staff]

Re: Dexamethasone with Revlimid and Velcade

by Beacon Staff on Tue Oct 29, 2013 10:37 pm

For a somewhat humorous take on the whole issue of dexamethasone and the havoc it can wreak, see "Me vs. multiple myeloma: Agent D", a column here at The Beacon written about a year and a half ago by Kevin Jones.

Sean Murray also wrote up an extended column on the subject, "Sean’s Burgundy Thread: Dex Man Walking."