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

Darzalex - advice / opinions?

by Don on Fri Jun 01, 2018 11:49 am

I was on Velcade and it caused severe neuropathy. I then used Revlimid for five years with multiple side effects. It quit working after five years, and the dosage was tripled, and the side effects were debilitating.

My oncologist wanted me to start Darzalex, which was by infusion, which I reluctantly agreed to. The IVs tore up my veins, you never knew how talented the nurse would be. After the second IV I got a port put in, and used it the next day.

I've been reading about the new drug. So far so good. No side effects except fatigue.

Any advice or opinions on this drug, which was only approved in 2015, will be appreciated.

Don

Re: Darzalex - advice / opinions?

by Arizonan on Sat Jun 02, 2018 12:42 am

It’s an amazing drug. I had no discernible side effects from it. Good luck.

David

Arizonan
Name: Arizonan
Who do you know with myeloma?: Self
When were you/they diagnosed?: April 2010
Age at diagnosis: 54

Re: Darzalex - advice / opinions?

by shorebirder on Sun Jun 03, 2018 7:37 am

Darzalex has been a miracle drug for my husband. None of the side effects that he had with Velcade, Revlimid, or CyBorD (cyclophosphamide, Velcade, and dexamethasone). His main difficulty is with sleeplessness from Dexamethasone. His treatment center is now also using the 90-minute protocol (related Beacon news article).

shorebirder
Who do you know with myeloma?: Husband
When were you/they diagnosed?: December 2016
Age at diagnosis: 54

Re: Darzalex - advice / opinions?

by Don on Tue Jun 05, 2018 4:13 pm

After three treatments, my myeloma panel is great. Infusions still take eight or nine hours, but can't complain.

Don

Re: Darzalex - advice / opinions?

by coop223 on Sat Jun 09, 2018 7:31 pm

Feel the best I have in years. Had Darzalex with Kyprolis for the first series of 8 infusions, then without the Kyprolis for the bi-weekly, and now am down just to monthly Darzalex. Also haven't needed my weekly Procrit (epoetin alfa, Epogen) shot for the past 4 weeks.

coop223
Name: derek cooper
Who do you know with myeloma?: Me
When were you/they diagnosed?: November 2011
Age at diagnosis: 57


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