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

Extreme exhaustion from Velcade, Revlimid, and dex

by Memakes4 on Sun Jul 10, 2016 12:14 pm

I have just started treat­ment and am only one week in on Velcade, Revlimid, and dexa­metha­sone (VRD, RVD). I can hardly keep my eyes open for most of the day. I didn't expect this level of fatigue.

Is this what others have experienced? Is it going to get better?

Memakes4
Name: Nancy
Who do you know with myeloma?: Myself
When were you/they diagnosed?: June 2016
Age at diagnosis: 69

Re: Extreme exhaustion from Velcade, Revlimid, and dex

by gregmetta on Sun Jul 10, 2016 5:54 pm

After several months of Revlimid and dexamethasone, complemented first by Kyprolis (acute kidney failure) and now Empliciti (no noticeable reaction), and including one full round (4 weeks) of just Revlimid and dex, I can empathize with your experience of fatigue.

I don't know if it is the case for you, but on the days I take the dex, the steroid "lift" goes a long ways towards an almost functional day. But then the crash after the dex wears off, usually a couple of days following the last dex dose (I'm at 40 mg per week, spread over 2 days), is worse and even what we might call bad. More fatigue, and this time joined by body soreness, perhaps some low grade nausea, and an absent brain.

The reading I've done validates the experience of fatigue. In fact, I understand thalidomide, the precursor to Revlimid, was touted partially for its "relaxing" quality for pregnant women. I wish I could offer you a rosy scenario, but I can at least leave you with this: while the fatigue from the Revlimid may accumulate and be stronger at the end of each 28 day cycle, the overall negative effects seem to have softened somewhat in my several months.

May you relax with fatigue.

Greg

gregmetta

Re: Extreme exhaustion from Velcade, Revlimid, and dex

by Aclinkboca on Sun Jul 10, 2016 10:43 pm

I started my induction therapy in February. For the first three weeks, I felt the same way and slept most of the days. About the 4th week, my body started to gain more energy as my body was able to get used to the drugs.

AC

Aclinkboca
Name: AC
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Dec 2015
Age at diagnosis: 46

Re: Extreme exhaustion from Velcade, Revlimid, and dex

by Memakes4 on Tue Jul 12, 2016 8:06 pm

Thank you both for your responses.

Gregmetta - Yes, I started second week today and definitely got that steroid lift from the dex. I guess the plan is to just sleep if I need it.

Aclinkboca - 4 weeks huh!! You give me hope. I suppose we need to keep in mind why we are doing this.

Thanks again.

Memakes4
Name: Nancy
Who do you know with myeloma?: Myself
When were you/they diagnosed?: June 2016
Age at diagnosis: 69

Re: Extreme exhaustion from Velcade, Revlimid, and dex

by Aclinkboca on Thu Jul 14, 2016 1:07 am

Nancy,

Actually, the time to regain strength and get over the ultra exhaustion feeling took longer after the induction therapy of Revlimid, Velcade, and dex than after my my stem cell transparent in May. It took the full month in February versus just a couple days when I returned home on May 28th from the auto transplant.

AC

Aclinkboca
Name: AC
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Dec 2015
Age at diagnosis: 46

Re: Extreme exhaustion from Velcade, Revlimid, and dex

by HeidiFish on Tue Mar 20, 2018 8:11 pm

I know I’m commenting on an old thread, but your experiences are very helpful. My husband started Kyprolis, Revlimid, and dexa­meth­a­sone almost two weeks ago, and his fatigue and nausea is terrible, but on those two infusion days each week of Kyprolis and dex (back to back days), he feels better than he has in a while, especially his back pain.

He’s coming off having done 5 3-week rounds (2 on, 1 off) of cyclophosphamide, Velcade, and dexamethasone (CyBorD) that didn’t bring remission, but did bring his kidney function back to normal. He has lambda light chain myeloma.

I know a lot of people complain about dex, and we may at some point, for now and for someone who has lost a lot of weight pre-diagnosis, it’s a godsend to have a bit of appetite and energy right now.

HeidiFish
Who do you know with myeloma?: Husband
When were you/they diagnosed?: October 2017
Age at diagnosis: 56


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