[rumnting]

Feeling worse on "off" weeks of treatment

by rumnting on Wed Jul 06, 2011 12:55 pm

My husband has just finished his second round of induction therapy. He is on Velcade, Revlimid, and Dex. 2 weeks on, 1 week off. He is still working full time. On both "off" weeks, he is extremely tired (not sleep deprived tired, but exhausted). He walks slowly, and feels somewhat short of breath. His hemoglobin is 10. Have any others out there felt worse on the off weeks. Could it be steroid withdrawal?

[Karen]

Re: Feeling worse on "off" weeks of treatment

by Karen on Wed Jul 06, 2011 3:14 pm

Hi,

I'm on the same regimen (I'm actually in my last cycle) and have noticed somewhat the same thing, especially on the first weekend following my last Velcade treatment (I get them on Tuesdays and Fridays). I strongly suspect that in my case it is related to the steroid, since I have been fortunate enough to not have had too many side effects from the Velcade or the Revlimid. I am experiencing some sleep deprivation from the Dex (usually waking up at night and not being able to get back to sleep), and I've noticed that by the Tuesday of my "off" week, I start to feel better with some better night's sleep under my belt. But if you say your husband isn't experiencing sleep deprivation, then it may just be the cumulative effect of the two weeks of treatment with the steroid. One "off" week just may not be long enough to completely reverse any negative effects from the two previous. Has he spoken to his doctor or nurse about this? I can't comment on the shortness of breath but that seems to me something that they should discuss. I hope he feels better soon!

[N-STEWART]

Re: Feeling worse on "off" weeks of treatment

by N-STEWART on Fri Jul 08, 2011 10:20 pm

Your husband's hemoglobin is low. That could explain the fatigue and the shortness of breath. As has been said by others you need to talk with your oncologist about these symptoms.

Nancy in Phila

[Snip]

Re: Feeling worse on "off" weeks of treatment

by Snip on Sat Jul 09, 2011 6:28 pm

Definitely would suspect the hemoglobin, but don't minimize the reality of the dex crash either. I'm (still, yes) on 20 mgs 2x daily for the 4 on, 4 off, 4 on cycle, and the non-dex days I stay on a minimal dose (8mgs a day for two days, and 2 megs) and then at the end, I wean for 5 days, or I literally go semi-comatose for a few days.

[Canuck Bob]

Re: Feeling worse on "off" weeks of treatment

by Canuck Bob on Sat Jul 09, 2011 10:09 pm

I too have symptoms like your husbands but not as strong a reaction. Fatigue and a strange type of shortness of breath. In my case it is manageable and I too work.

[Sue Krist]

Re: Feeling worse on "off" weeks of treatment

by Sue Krist on Tue Aug 30, 2011 7:56 am

I'm on Velcade, and 40 of Dex weekly for 2 wks then 1 wk off the Velcade, but I still get the Dex on the week off. I just started Revlimid last Friday. I have found that I'm more tired out the week I'm off also, and that if I exercise, that I'm more short of breath, My HGB is 11,1. I have also noticed that my protein levels on my chem screen are a little low after that week off. I guess I need more protein then to provide more energy that the chemo seems to use up. This has been going on for the past 8 months. Best of luck to you.

[rumnting]

Re: Feeling worse on "off" weeks of treatment

by rumnting on Tue Aug 30, 2011 9:00 am

My husband was on the same regimen. On "off" weeks he walked slowly, and complained of shortness of breath. After 4 rounds, he was pretty convinced that it was Dex withdrawal. The symptoms went away when he would get his next "fix" of Dex.
You want your protein levels to go down. It is also a measurement of your myeloma cells. It is not a measurement of the protein in your diet.