[Truth Seeker]

Experiences so far with Kyprolis in relapsed patients?

by Truth Seeker on Tue Apr 30, 2013 5:31 pm

I saw my oncologist last week, and he shared a few observations about his hospital's (UCSD) use of Kyprolis [carfilzomib] so far in relapsed patients - and I am just curious whether others on this site have had similar experiences. My oncologist told me that for the VAST majority of relapsed patients so far, Kyprolis either does NOT work or cannot be tolerated, rending it extremely limited in this setting.

He did agree, however, that in newly diagnosed patients, the efficacy and tolerability of Kyprolis may well be a different story - but he has not yet begun this at USCD. But certainly recent dramatic results from clinical trials with Kyprolis, such as those with smoldering patients at the NIH or with newly diagnosed patients at Michigan and other locations, are supporting this view.

But to repeat: Here I am curious about Kyprolis's use in the RELAPSED setting - when and if the time comes..... in my case, I am currently on Rev and Dex only.

[darrenmo]

Re: Experiences so far with Kyprolis in relapsed patients?

by darrenmo on Thu May 23, 2013 1:16 pm

Hi there, new to the site and first post. My Mom has had multiple myeloma for less than a year now (68 years old), but we believe she's had signs for close to a year. She's taken Velcade + Dexamethasone + Cytoxan to no avail (pardon my spellings), and was recently put on Kyrprolis.

Please, for everyone out there, make sure kidneys are okay to handle the stress of a large dosage. Just after her first dose, she felt horrible and had to be admitted to the hospital. It was too late though, her kidneys shut down, and she's had a hard battle ever since. The Kyprolis is not currently working, and we are trying to get her down to the Mayo Clinic in Phoenix. I will keep it clean here, but her doctor seems negligent for this happening. She was not warned, she had not seen a nephrologist, she continued taking advil (which is bad for the kidneys), other meds were not good for the kidneys, etc...

We're not sure what to do, and she is in pain, and although a strong woman, this has killed her spirits. Having the kidneys shut down also limits her healthy food choices (because of too much phosphorus and potassium), makes her swollen, and reduces her overall quality of life.

I wish everyone out there with this disease the best, and God Bless.

Darren

[Ladyaero]

Re: Experiences so far with Kyprolis in relapsed patients?

by Ladyaero on Sat May 25, 2013 10:24 pm

My husband relapsed in September (after a year and a half on Velcade/dex, then a transplant Jan. 2012) and was put on carfilzomib. Unfortunately, it didn't work at all (his marrow has been relatively inactive- we're judging the efficacy of the treatments based on the size of his extramedullary disease). He is allergic to both Revlimid and Pomalyst, so we are back to Velcade and dex (they threw in cytoxin too, but we are taking a break from that as the side effects have been too much to handle). The lumps are shrinking, but the neuropathy is coming on quickly (even getting the Velcade subcutaneously) and he's still getting knocked down pretty hard by side effects.

[silverberg]

Re: Experiences so far with Kyprolis in relapsed patients?

by silverberg on Sat Jan 04, 2014 6:54 am

We are resistant to Velcade and Revlimid and have had 1 stem cell transplant. And we have extramedullary in the liver.

Would Kyprolis or Pomalyst be effective?

[Joy]

Re: Experiences so far with Kyprolis in relapsed patients?

by Joy on Sat Jan 04, 2014 9:05 am

Hi silverberg, truthseeker and all,

I am about to go back on RVD as consolidation therapy post transplant. My myeloma specialist at the Dana Farber Cancer Institute speaks quite optimistically about Kryprolis as one of many possibilities for when I relapse. I don't know if he feels the same way about it for people that have relapsed more than once or twice.

Best wishes for the New Year!

Last edited by Joy on Sat Jan 04, 2014 10:52 am, edited 1 time in total.

[Multibilly]

Re: Experiences so far with Kyprolis in relapsed patients?

by Multibilly on Sat Jan 04, 2014 9:16 am

See:

https://myelomabeacon.org/news/2013/09/20/kyprolis-carfilzomib-revlimid-lenalidomide-dexamethasone-relapsed-multiple-myeloma-2/

Full text of the referenced article can be found here:

http://bloodjournal.hematologylibrary.org/content/early/2013/09/06/blood-2013-07-511170.full.pdf+html

BTW, regarding silverberg's post, just because you may have become resistant to Velcade and Revlimid, don't necessarily discount those drugs out of hand when combining them with another drug like Kyprolis. Some drugs get new life when combined with a new agent. I'm speaking in general terms here, not specifically for this combination of drugs. So, you need to do your research with your doc.

Best of luck to you.

[Wayne K]

Re: Experiences so far with Kyprolis in relapsed patients?

by Wayne K on Sat Jan 04, 2014 12:19 pm

As someone who had limited kidney function even before my multiple myeloma diagnosis I agree that it is really questionable why they wouldn't warn her about Advil and its generics. I haven't taken them or aspirins beyond 81mg or many years now.

[Jade]

Re: Experiences so far with Kyprolis in relapsed patients?

by Jade on Sat Jan 04, 2014 2:04 pm

My husband has had myeloma for 6 years and had become refractory to all the standard drugs including Kyprolis and pomalidomide. He is now on a combination of Kyprolis, Cytoxan, pomalidomide, and dex and his light chains have been steadily decreasing. It appears that when a drug stops working you can combine it with different drugs to get an effect because they all work differently and target different parts of the myeloma cell. It may take a few tries, and you have to experiment with different doses if there are side effects, but it's worth trying.