i had my first 2 infusions of Kyprolis Thursday and Friday. Boy, did I get a reaction. Chills, fever, and all I did was sleep. I remember this happening with Aredia the first time years ago.
Wondering if anyone went through the same thing the first time with Kyprolis (carfilzomib)?
Merry Christmas
Al
Forums
Re: First infusion of Kyprolis (carfilzomib)
I had no reaction to it except I was really tired and couldn't stay awake, but I hadn't slept well the night before, so I may have been just really tired. P.
I am starting my third cycle and the only issue has been a mild burning sensation while infusing, but it doesn't happen every time and it seems to be dependent on the placement of my IV.
Good Luck
I am starting my third cycle and the only issue has been a mild burning sensation while infusing, but it doesn't happen every time and it seems to be dependent on the placement of my IV.
Good Luck
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Jmdluv2cook
Re: First infusion of Kyprolis (carfilzomib)
I went back through my blogs from when I started CRD two years ago. The only reaction I had was a slight burning sensation the first time I received the Carfilzomib - didn't happen after that. I also received a lower dosage the first two days (40mg). Thereafter, I received 70 mg. I recall the doctor saying some people had trouble with the full dosage the first time, so they ramped it up to help the body get used to it. Hopefully your subsequent treatments will be better. I am also usually a bit queasy and tired for a day or two after treatment, but nothing as significant as you indicate - I also attribute it more to the Revlimid and Dex since it also happens on weeks when I don't get the Carfilzomib.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: First infusion of Kyprolis (carfilzomib)
I just finished CRd after 8 months and I had no reaction to carfilzomib. My worst reaction to anything was to Aredia (pamidronate). I felt like hell for three days and I only got 30mg. pursuant to the Nordic Myeloma study which says the actual recommended dose of 90mg is too high. Apparently, many oncologists haven't read the results of the clinical trial. Thankfully, mine did.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: First infusion of Kyprolis (carfilzomib)
Has anyone gotten the bill yet? What are they charging for a dose of this stuff?
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Dan in Utah
Re: First infusion of Kyprolis (carfilzomib)
I am part of a study, so the carfilzomib is provided by the pharmaceutical company. The Beacon posted an article this past summer when carfilzomib was approved for relapsed patients and indicated the cost was expected to be about $10,000 for a 28 day cycle.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: First infusion of Kyprolis (carfilzomib)
Hi Al,
My husband is newly diagnosed (after "smoldering" for a little more than one year), and just started a Kyprolis, Rev, Dex treatment plan - this was just approved for use with newly diagnosed. After the first two infusions of Kyprolis, he is experiencing what you experienced - chills, low grade fever, tired but a restless sleep -- general flu-like symptoms. I'm wondering how you're doing now? Did the symptoms get better? Or did you end up changing treatment plans?
My husband is newly diagnosed (after "smoldering" for a little more than one year), and just started a Kyprolis, Rev, Dex treatment plan - this was just approved for use with newly diagnosed. After the first two infusions of Kyprolis, he is experiencing what you experienced - chills, low grade fever, tired but a restless sleep -- general flu-like symptoms. I'm wondering how you're doing now? Did the symptoms get better? Or did you end up changing treatment plans?
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: First infusion of Kyprolis (carfilzomib)
Sandy111 wrote:
> Hi Al,
>
> My husband is newly diagnosed (after "smoldering" for a little
> more than one year), and just started a Kyprolis, Rev, Dex treatment plan -
> this was just approved for use with newly diagnosed.
Oh wow, I totally missed this announcement in the status change of Kyrpolis for newly diagnosed patients:
https://myelomabeacon.org/news/2013/03/19/kyprolis-carfilzomib-nccn-multiple-myeloma-guidelines/
I'm a bit curious how you weighed choosing CRD over VRD as a frontline treatement?
> Hi Al,
>
> My husband is newly diagnosed (after "smoldering" for a little
> more than one year), and just started a Kyprolis, Rev, Dex treatment plan -
> this was just approved for use with newly diagnosed.
Oh wow, I totally missed this announcement in the status change of Kyrpolis for newly diagnosed patients:
https://myelomabeacon.org/news/2013/03/19/kyprolis-carfilzomib-nccn-multiple-myeloma-guidelines/
I'm a bit curious how you weighed choosing CRD over VRD as a frontline treatement?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: First infusion of Kyprolis (carfilzomib)
Hi Sandy111,
Sorry to hear that your husband progressed from smoldering to active myeloma. I hope his new treatment really whacks the myeloma back to where it belongs!
Just to make sure there's no confusion ... The only FDA-approved use for Kyprolis is in relapsed and refractory myeloma patients. The official prescribing information for Kyprolis has not been changed to indicated that the drug's approved use is any different than it was when the FDA first approved it last year.
The NCCN guidelines were changed, as Multibilly points, to indicate that frontline use of Kyprolis is acceptable. However, as the Beacon article notes: "The listing of the Kyprolis-Revlimid-dexamethasone combination as an alternative treatment option in the NCCN guidelines is described as a “Category 2A” recommendation. This means it is based on “lower-level evidence,” but still with “uniform NCCN consensus that the intervention is appropriate.”"
More importantly, the NCCN is not the Food and Drug Administration, which is the U.S. government body responsible for ensuring that commercially available drugs are safe and effective.
Sorry to hear that your husband progressed from smoldering to active myeloma. I hope his new treatment really whacks the myeloma back to where it belongs!
Just to make sure there's no confusion ... The only FDA-approved use for Kyprolis is in relapsed and refractory myeloma patients. The official prescribing information for Kyprolis has not been changed to indicated that the drug's approved use is any different than it was when the FDA first approved it last year.
The NCCN guidelines were changed, as Multibilly points, to indicate that frontline use of Kyprolis is acceptable. However, as the Beacon article notes: "The listing of the Kyprolis-Revlimid-dexamethasone combination as an alternative treatment option in the NCCN guidelines is described as a “Category 2A” recommendation. This means it is based on “lower-level evidence,” but still with “uniform NCCN consensus that the intervention is appropriate.”"
More importantly, the NCCN is not the Food and Drug Administration, which is the U.S. government body responsible for ensuring that commercially available drugs are safe and effective.
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