[Ella]

Kyprolis failing, FLC level has tripled - what next?

by Ella on Mon Jun 20, 2016 3:13 pm

My Mom was diagnosed at age 71, and was in an excellent state of health. She had 6 cycles of Velcade + dex + cyclophosphamide (on and off). She achieved VGPR. She had an autologous stem cell transplant in December 2014. She started Revlimid maintenance in April 2015.

She relapsed in March 2016. When the dose was increased from 10 mg to 20 mg, her CBC wouldn't hold. Her light chains started to shoot up. From 100 to 300. Doctor decided to stop Revlimid, and try Kyprolis (carfilzomib).

On and off Kyprolis due to very low CBC, and weekly transfusions, she completed maybe 2 cycles of Kyprolis, plus dex 40 mg/week. In 5 weeks during the treatment her FLC only jumped from 300 to 800.

Now her kidneys are also affected, and her creatinine has crept up from high 80s to 120 at the moment.

Her hemoglobin is high 80s, but her platelets are very low (13 today). Kyprolis kills her CBC so badly, but platelets worse than anything, she needs transfusion every week, sometimes twice a week.

She also has del 17p, just to make things worse.

We're seeing the doctor in a few days. But what are her options?

She's still energetic had it not been for the terrible side effects of Kyprolis.

If you could offer any personal experience, anyone with del 17p that did go this route and had any success?

Does anyone tries to go back to Velcade since it worked for her the first time? What about pomalidomide?

I would really appreciate it. We're desperate, and we love our Mom, we don't want her to leave this world this soon.

Thank you.

[JPC]

Re: Kyprolis failing, FLC level has tripled - what next?

by JPC on Mon Jun 20, 2016 3:16 pm

Hello, Ella.

Sorry to hear your mother's difficulties. Very briefly, look into the monoclonal antibodies, elotuzumab (Empliciti) and daratumamab (Darzalex).

[Ella]

Re: Kyprolis failing, FLC level has tripled - what next?

by Ella on Mon Jun 20, 2016 3:40 pm

Thank you for your advice JPC.

[Janet1520]

Re: Kyprolis failing, FLC level has tripled - what next?

by Janet1520 on Wed Jul 13, 2016 7:14 am

Ella,

I have 17p deletion and I've been on the monoclonal antibody elotuzumab (Empliciti) plus Revlimid, Velcade and dexamethasone. It has worked well for me with minimal side effects. I've been on this treatment since March 2014, without a stem cell transplant. I'm now in the maintenance phase. Good luck to your mom.