[Bsukeena]

Why not add Revlimid to my father's Kyprolis & dex?

by Bsukeena on Wed Jul 27, 2016 5:32 pm

I am a first time poster on the Beacon. I have been a caregiver for my Father with multiple myeloma for 13 years and frequently looked to the Beacon for support and answers. What an amazing resource and group of people!

I am stumped now and could use some suggestions. Here's the background:

My Father is 72. He has had multiple myeloma since 2003. He has always responded well to treatment. He did a thalidomide cocktail then a stem cell transplant in 2004."Remission" for 7 years, then Revlimid and a second stem cell transplant in 2012. "Remission" for 2 years. Then Velcade, Revlimid, and dex for 8 months (stopped for non-treatment related issues). This year he started Pomalyst and some drip plus dex. He could not tolerate Pomalyst. Since May he has done Kyprolis and dexamethasone.

The situation we are in is that the specialist at the large hospital that treated Dad for 13 years is taking a more hands off approach and deferring the care to the small local hospital that is now administering the Kyprolis. I read an article a couple years ago here on The Beacon that said there was success in adding Revlimid to Kyprolis in persons with multiple relapse and for those that had become refractory to Revlimid. In fact that article was posted here on the Beacon. In my mychart message and later voicemail message to my Father's doctor at the larger hospital, I asked if we should try adding Revlimid and referenced the study. He had the nurse tell me no. When I pressed to talk to him, he sent a mychart message saying he was well aware of the study, and dad was refractory to Revlimid.

My concern is this:

1) I am not sure my father is refractory to Revlimid - he stopped after 8 months for other reasons and had no treatment for 3 months and his cancer came back; and
2) The study specifically said like 44 % or so in the study were refractory to Revlimid.

The cancer is ravaging my Dad's bones right now. He is in extreme pain and we have spent the last two weeks since getting the doctor's response to Revlimid trying to find some way to deal with pain. But I feel like after everything so many people have done successfully for Dad to live for 13 years with many, many years of good quality of life, I want a better opinion / reason why we wouldn't try something else – like adding Revlimid if his cancer is ravaging him right now. The study I referenced said 77 % had a response within 1 month after adding Revlimid to Kyprolis and 44% of those were refractory to Revlimid before.

I apologize for so much information. I appreciate everything the oncologists and the nurses have done for Dad and accept that there may be a good reason not to try adding Revlimid, I would just like to understand if and why the risks outweigh the benefits at this point.

Thanks.

Belinda

[Multibilly]

Re: Why not add Revlimid to my father's Kyprolis & dex?

by Multibilly on Thu Jul 28, 2016 7:19 pm

Hi Belinda,

Sorry to hear that your dad is in so much pain.

Even if your dad had become refractory to Revlimid, combining Revlimid in a new and different drug combination can often give Revlimid new legs.

In any case, if your dad isn't responding well to his current therapy, I might suggest getting a second opinion from another multiple myeloma specialist regarding which drugs to use at this stage – especially if the current specialist is now taking a "hands off" approach with your dad's treatment.

It might be that it could make more sense trying one of the monoclonal antibodies, such as a Darzalex (daratumumab) or Empliciti (elotuzumab), or mixing one of those antibodies with Kyprolis or Revlimid perhaps running with KRd, as you suggest. But I would again suggest getting a recommendation directly from another myeloma specialist based on your dad's history and current response to Kyprolis and dexamethasone.

If you let us know what city your dad is in, folks on this forum can recommend some good specialists that may be nearby.

[Bsukeena]

Re: Why not add Revlimid to my father's Kyprolis & dex?

by Bsukeena on Fri Jul 29, 2016 6:26 pm

Thank you Multibilly for commenting.

We have had an amazing turnaround in the past two days with my Dad. My sister and my friend who is a transplant surgeon at Duke spoke directly to a spine doctor at Duke because Dad was at the point where he could only lie on his side because of intense pain. They worked him in yes­terday for an appointment. The spine doctor immediately advised that Dad be admitted to the hospital to get the pain under control and as a first step they just finished a kyphoplasty procedure that they said went as well as they could have hoped for. (Crazy right, what a little more attention by a physician in a time of crisis can actually mean.) So our pain management issues are being addressed at a higher level of care again.

Other good news ... Possibly because of getting people outside the oncology department involved who recognized Dad needed immediate help, oncology now says that on Monday before discharge we will discuss different treatment drugs and symptom management. Dad's platelet count is super low, so Revlimid may not be possible, but at least we can discuss what, if any, other treatment options there are.

"Never give up" - I know it's way over quoted, but for multiple myeloma Jimmy Valvano's advice is so true. Stay diligent, ask questions, seek alternatives, stay optimistic. Thirteen years I've helped my Dad. The disease is an SOB. But one good thing with multiple myeloma is that there are advances every year.